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Cubs Win, Bernie Sanders and Anne Lamott

Tuesday, October 13, 2015–On this day in American History:

  1. The Chicago Cubs beat the St. Louis Cardinals in Game 4 of the National League Divisional Series. They now go on to play in the National League Championship Series, the winner of which plays in the 2015 World Series.
  2. The first 2016 Democratic Presidential Primary Debate was held in Las Vegas, Nevada.
  3. Writer Anne Lamott gets sassy on Twitter.
  4. It was my first full day off of Facebook since I can’t remember when.

Having the whole day off Facebook went better than expected.  I stayed busy and on the go throughout the day, and even got my pantry cleaned, organized and looking much improved.  I didn’t check my phone repeatedly for updates, but instead talked and texted on it quite a bit, and a whole stack of mail was sorted and discarded.  So, really, the change initiated to help push past fatigue was quite successful. I’m doing it, and it’s exciting!  I was, sadly, too busy to get my full five mile walk in, but I am still on target for my weekly goal, fingers crossed.

I found I didn’t miss checking Facebook until it came time to sit down to watch the playoff baseball game and then the Democratic debates.  I missed interacting with friends, though team loyalty and politics are volatile topics on Facebook and not always pleasant.  To find the news, I checked Twitter, but much of it wasn’t as accessible to me as it is on Facebook, which has a selective newsfeed.  I’m not sure how I will proceed, but when it comes to information, being off Facebook already feels like a bit of a disadvantage.  I am also missing out on most of the writing challenge news, so that may drive me back faster than anything.

Yesterday’s Twitter included some haughty tweets by the popular writer Anne Lamott, whom I met last year at one of her book signings.  It isn’t unusual for Anne Lamott to be sarcastic. After all, she’s known for her wit and outspoken humor, but I was a bit miffed when she turned the sarcasm on the presidential candidate Bernie Sanders, because of what she characterized as his being too loud.

I guess I don’t really agree with this assessment. I see him as passionate about the issues; I see him as speaking to a large group of people; if he has a bit of a hearing deficit, I can forgive that, even overlook it entirely–if she’s even right, though I don’t think she is on this matter.  I listened after the debates to an MSNBC interview with Bernie Sanders, and there was no mistaking that Chris Matthews was louder than Sanders.  Lamott seemed to be reaching to have something funny or otherwise derogatory to say.  This made me think a little less of her, not of Bernie Sanders.  Women have been saying for years that they do not want to be evaluated by their looks or demeanor, hair styles or age, yet Lamott’s focus turns these tables on Sanders.  It seemed as if she was trying to make herself seem superior to him, a man of vast public service contribution as well as a graduate of the esteemed University of Chicago.  This time Lamott’s chiding just didn’t sit well with me–her varied and overdone tweets about what she assessed as his being too loud.

When Lamott said Sanders will never be president because of his shouting, one millennial tweeter who happens to be her son, Sam Lamott,  schooled her by saying, “never say never.”  When several people favored this tweeter’s admonition, Lamott reacted defensively (and again sarcastically), saying:

lamott

Of course, it’s supposed to be humorous…and I’m sure it drew several laughs from the crowd.  Yet, this sort of arrogance, to me, illustrates exactly what is wrong with social media.  The 162 you see beside the star (*162) naturally represents people with well over 40 followers favoring Lamott’s quip.  They clearly want to be included in the big group, the “in” group–the group of tweeters who have lots of followers, not just a few (under 40, in fact)…and more importantly, to be aligned with her via her opinions–or, in this case, attitude. This approach proliferates a class system where more is more, based on ego and an otherwise utterly vacuous measurement, because then (if we have lots of followers) we can feel smug and self-righteous and as if we have arrived.

In this mentality, everything’s a competition…and that fits right in with playoff games and presidential debates; might as well take it down to the level of social media, where people are supposed to be “connecting.”  Hundreds of twitter followers clearly means we are smarter and happier and probably even wealthier than those with much fewer.  This is a reductionist philosophy if there ever was one.  Akin to the Facebook “like,” the number of followers (like the number of “friends” or the number of “likes” accumulated) becomes a measure of one’s worth, one’s identity.  Social media is the new country club.  Status is everything; how many followers, how many friends, how many likes, how many pins, how many favorites…which all have their own complicated cultural qualifications.  This is the sort of silliness that annoyed me on Facebook.

It seems arrogant and sophomoric, not to mention short-sighted, to believe one’s worth is congruent to the number of followers, as people come to Twitter at different times and sometimes very briefly.  As one tweeter from Maple Grove, MN pointed out in response to Lamott’s address to “annoying people”:

“@ANNELAMOTT, weird that the word “follower” is used when really

we are curious about what ppl can express in 140 characters or less.”

Likewise, if a person is new to twitter, or if they are trying to keep a low profile maybe expressly because they do not want to play the game, they naturally may have few followers..it could be by choice, and have little or nothing to do with their ability to secure an audience.  In the aggregate, a large group of tweeters with few followers is still substantive; those opinions are not necessarily diminished by their lack of volume.

And why the elitist stance coming from Anne Lamott after all?  I imagine she would just laugh incredulously at my reservation here, saying, “I was joking, dumbhead!”

I know I’m not going to win any fans by criticizing Anne Lamott (whom I like (!), as she says about Bernie Sanders).  Perhaps she is just a Hillary supporter.  Perhaps she decidedly set out to make Bernie look bad just to keep him out of the running…or to knock him out of Hillary’s way.  If so, I think both she and Hillary herself took care of this matter.  I wouldn’t say Sanders is out of the running, but I would say that between Anne Lamott’s Twitter and Hillary’s live vitriol, Senator Sanders looked like a bullied middle-schooler just wanting everyone to get along.

 

This is Day 14 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

On Going Off Facebook

IMG_0085_Fotor Dorothy

Something odd happened to me today.  I no sooner got finished telling someone how happy writing makes me, than within hours I felt sick of it.  I thought maybe I would drop out of this challenge, even though I never had that thought before.  I thought maybe I don’t really like the activity of writing so much that it eclipses all other activities.  I thought maybe I don’t really want to publish a book, after all.

I got busy with my day and didn’t think too much about it again until I sat down to write my post just now for Day 13.

A question came up on Facebook on our Write31Days group page, and yet again the very defensive administrator with a lot of bravado was rude in response to my follow-up question.

I decided just to think about her retort; perhaps to address it tomorrow, if not disregard it altogether.

Then I poked around for a bit, and independent of the thought of her curtness or any other specific impetus, I decided on a bit of impulse just to deactivate my Facebook account.

I’m really surprised I did this.  And yet I am not at all surprised.

Ever since I started this challenge, and the actual putting into practice-do as I say Breaking Free from Fatigue-I have really been too busy for Facebook.  And I also have not been as reliant on it…

Facebook was a perfect go-to when I was fatigued, but now that I am trying so hard to push past the rest it required, I find I not only don’t have the time for Facebook, I also find I am losing interest in it.

For one thing, I have a stack of books I want to read, a party to plan, a bunch of writing to do, and a house to prepare for guests, along with meals to prepare to feed them.  Plus, I am still trying to walk 5 miles a day.  Just the party prep could take me the whole of the rest of this week.  I wonder what life will feel like without the daily connection that is Facebook?

Actually, as this 31 Day Writing Challenge continues, I think going off Facebook is the perfect thing for me to do.  It’s such a perfect idea, I really don’t know why I didn’t think of it in the first place.

Perhaps it was because at the time this writing challenge launched, I was involved with 100 Days of Happy Photosand wanted to finish that challenge, which was also initiated on Facebook. In fact, tomorrow is our last day: it will be exactly one hundred days that I’ve been sharing in the group, mostly daily, photographs of things that bring happiness my way each day (the featured photo above is one I took for this group).  I feel a little badly about abandoning the 100 Happy Photographs project, but I can always post my photo(s) here, if I want to. Or, I can explain when I return.  I will go back on Facebook in time–I just don’t know when.  Perhaps I will wait until this 31 Day Writing challenge is over.

Most importantly, being off Facebook will give me more time to focus on the new habits I am trying to build, in order to replace the physical rest that dominated my days.  This will be a great day for me, if not being exhausted ever occurs–a day I’ve long awaited!  In addition, I feel burned out on the pettiness that happens on Facebook, which I try most of the time to ignore.  I get tired of the superficiality and some of the practices that goes on there.  I feel as though I am looking for deeper, more meaningful connections, as I have always had in real life, since I try to avoid wasting time frivolously.  When I was fatigued, I had a lot of reading time but not always the best concentration.  Facebook was great for little blips of interest, even though I often fell asleep laptop in hand.

Yet, being as communicative as I am, it is difficult for me to spend five minutes and then disappear for six days–or worse, just to post a photo of a contorted cat that says, “Hang in There,” or some such thing, and then move away.  I don’t think in soundbites.  I may be too expressive for Facebook.  Too contemplative, maybe.  I don’t like the rituals that remind me of junior high/middle school, even though, again, I rarely let myself be bothered by them.  I’m just aware…and I need a break from all of it, apparently.

Besides, now that I am finally beginning to feel like a normal person, I want  to return to in person relationships, not just virtual.  I think this break is going to be beneficial, although I will probably miss all sorts of important news and changes in people’s lives.  I guess someone will have to call me, or I just won’t know…

This move is a big change for me, as I have been reading Facebook posts nearly daily for the whole latter five years or so of my recovery.  The operative here is “move.”  Alas, movement!  This has been my goal for so long.  It is exciting to be finally achieving such an important goal (even as my head hurts just a bit still).

Indeed, while almost completely unanticipated, going off Facebook feels like a huge evolution.  I mean, I knew I was aggravated with it at times, but I never realized I would be able to make such a swift, clean break.  I also guess I never let myself realize just how aggravating it has become.  I always tend to focus on the positives, and there are many positives to social networking.

Perhaps blogging fulfills a similar sort of social need that Facebook does?  There certainly is not the same amount of interaction.  Same with tweeting, I suppose, which is also different from the Facebook culture.

I do worry somewhat that people won’t know what happened to me, since I made no announcement of my leaving, and maybe even that I will lose “friends” I don’t want to lose.  But anyone who cares should know how to find me here; at least they say they are reading my blog.  All and all, if they really want to connect, I’m sure they will be able to find me some other way other than Facebook.

I don’t think anything urgent will happen while I’m gone–except, OOPS, I was supposed to go pick up a Halloween costume for $6.00 for our granddaughter from someone I don’t know and will no longer have contact information for.  Oh, my.  Like I said, I really didn’t think it all the way through.  At the time, it just seemed like the perfect thing to do.  Surely it is better than stopping my writing challenge, no?  Better than giving up writing for good?  And by for good, I mean for forever.  If I have to choose between writing, moving and Facebook, Facebook is going to lose every time…

I do wonder how much time will pass before I return to Facebook.  I’m hoping that I at least take the rest of this month off.  It’s going to be interesting to see how this goes.

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can’t I?

This is Day 13 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

Remembering John Denver

 John PEACE

Today is the 18th anniversary of the fatal air tragedy that took the life of popular American folklorist/singer/songwriter John Denver.  You can find a vast amount of information about John’s accident and his career on the internet.

I have also written about John Denver frequently on this blog.  A lifelong fan, I was led to an even deeper appreciation of his work during my recovery from acquired head trauma.

Please feel free to remember John by visiting any of the following links:

On Tributes, Love Letters, and Sentimentality: To John Denver from Aspen

On Writing It Down

Aspen In October 2012, Introduction, Part 1

(there are three posts that follow this):

Part 2

Part 3

Part 4

Talk About Opening Doors: A Tribute to Steve Weisberg

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This is Day 12 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

The Space that Keeps Us Honest and True: Last Night and This Morning

DSC03123_Fotor john prine

John Prine fans love stories.  Beyond the American folklorist’s songwriting success is a fundamental interest in writing, as described here: “I guess I always loved to write, but I never had anything to really encourage it. I never thought I could be a journalist or novelist or anything, I just had a wild imagination and songwriting gave me enough rope to run with it.”  This doesn’t sound exactly like an authentic John Prine quote to me, maybe it’s a paraphrase, but there is no disputing that John does have a wild imagination, and no doubt John experienced an early interest in writing.  He and I certainly have that in common, even though he makes a lot more money than I do.

Indeed, John Prine generally has had greater fortune than most of us.  Like some of us, however, the famous lyricist has had his share of health scares, and like some of us, he continues to work hard to persevere.  Without any of these challenges, he would still be admirable. Yet, I might point out that his health challenges likely include the sort of debilitating fatigue that is the focus of this 31 day writing challenge for me.

Certainly it feels a bit disingenuous to be comparing myself to John Prine, but as a writer, comparisons and differences come automatically.  They are instantly recognizable, and then sometimes, well, undeniable. The fact that one of  the greatest living songwriters of our time shares interests and ailments in common with one of the most unknown bloggers on the internet seems a rather compelling synthesis–and this connection with the ordinary person explains, in part, what makes John Prine’s writing so successful.  His humility enables him to identify with his fans, and we in turn, identify with him.  He comes before us as a regular guy, albeit in his trademark black suit and carrying his guitar or guitar case, but on stage he laughs with us, he connects with us, and even shows his appreciation for us.

In all the John Prine concerts I have attended, my favorite ones have occurred since my head injury. Because of my growing adoration for him, my gratefulness to still be here able to enjoy art, and at that very moment, his music in particular…or maybe just because of the emotional lability that comes from concussion, after his finishing a song with his band (which is awesome and worthy of its own post), I have screamed to him on stage at the top of my lungs, “I LOVE YOU, JOHN! I LOVE YOU, JOHN!”  During last summer’s 2014 concert at Red Rocks near Denver, Colorado, he clearly heard me (we were in Row 11; although I am pretty sure he heard me at other concerts, too; it may have been that he even recognized me as that screaming fan again), to my surprise, he didn’t turn away or act annoyed, but instead looked right at me and said with love, “Thank you.  We appreciate that.”  The man has a heart so big that he truly appreciates his fans’ appreciation. Like all great artists, neither joy nor sorrow escapes him, and we hear this in his music, we witness it at his concerts.

One characteristic most praiseworthy about John Prine’s work is that he takes cliche’s and spins them into extended metaphors of high art.  Or to borrow a teaching metaphor, he turns “D” writing into “A” writing. I’m not sure he has to work all that hard to do this; at least he makes it appear effortless.  His Irish whimsy and sense of the absurd seem ever present, and this elevates his language from prose to poetry, as if his inner William Butler Yeats is always there having a beer with him.  His lyrics are filled with literary embellishment that employ tropes, wit, satire, sarcasm, irony, and even once in a blue moon, allusion.  The best thing is when he draws his own characters, real or imaginary, such as “the oldest baby in the world,” “Sabu,” “Mr. Peabody,” the “big old goofy man dancing with a big old goofy girl” and “some humans [that] ain’t human.”  Like a fine novel, his songs will make you laugh and they will make you cry.  He’s like a modern day Dickens contrasting the great expectations of a people, large and small–but mostly examining the life of the small.  Or, as John Prine plainly puts it in “Humidity Built the Snowman, “The scientific nature of the ordinary man / Is to go on out and do the best you can.”

That idea is certainly the philosophy behind Stumbler.  We live our lives, take a few hits and a few falls, pick ourselves up as long as we can, and keep trying.  That’s what’s happening with this piece, too, as I write spontaneously and a bit rushed to finish it a day later than hoped–hoping to have the day I hope to have today.  Yesterday, I just got to busy living and then too tired to write about it. So, because writing is what matters here, this is what I stitched together last night–after the Cubs beat the Cardinals 6-3 in the second of five games in the National League Divisional Playoff Series–Lord knows (and John surely knows) that that was rare tv worth watching.  Even though it was his birthday, John even may have been following the game himself…

________________

 

It’s just past ten o’clock on the 10th day of the tenth month of the year, October, 2015.  It also happens to be the tenth day of my 31 day writing challenge and one of the busiest Saturdays this woman has seen in a long time.  I completed Day 9 of this writing challenge at about this same time last night, however mostly with my eyes closed.  I’ve got no guesses as to what all of these tens could mean, but hopefully I will figure out something.  I’m a little slap-happy here, but let’s see what happens.  We can relax, because even though we’re on the internet and all, it’s only blogging.  And we don’t really care that much; the point is to write.  Sleepers may sleep, but we writers–we don’t sleep.

As I fight the fatigue that has plagued me for so long by forcing change in the ways I have been discussing on this blog and more particularly in this challenge–and mostly by just good old fashioned keeping busy–I find the days flying by, seemingly as quickly as the years that are already gone, including the long-suffering ones which were all but lost entirely.  The decade and the decades–gone in a whoosh!  But that’s cliche, I know.  So I hope everyone will forgive me if nothing gold comes from this keyboard tonight–because I really hate to have to be writing this on the fly.  Real writers write ahead of schedule; they make no apologies, but I’m just working a  writing challenge, trying to figure out what all to say, and mostly trying to make my deadline by midnight tonight, because…

Today is the birthday of the great American singer/songwriter John Prine.

That is 10/10/46.

He is (or was) 69 years old today!

You would think that on such a great writer’s birthday I could get it together to permit the possibility of writing earlier in the day when one hopefully suffers less fatigue…but alas, I could not.  I’ve been busy planning another birthday party; in fact, this one for my father’s 85th–a mere one week away.  I had to get the cake ordered, the balloons, the photos…and there’s been some drama.  So, stay tuned for all of that.

______________

I just figured out the significance of all of these tens…even though it’s probably passe’ to say it now,

John Prine is a 10!  /  John Prine is a 10!

So, please allow me to trace, if you will, a summary of my affiliation with “John,” as most of his fans know him.  I first heard John’s music coming from my brother’s bedroom stereo around 1971.  Back then, I didn’t pay much attention; my brother was always listening to music; I just heard it enough to notice that it wasn’t Cream’s “White Room” or Otis Redding’s “Sitting on the Dock of the Bay.”  I remember lifting my head toward the newness, then I kept right on staying out of my big brother’s hair, the way he and I both preferred.  Most likely, I was on the phone.  The land line.  We called them house phones back then.  They plugged into the wall and they had cords that were coiled and cords that were extenders, so we could walk around the room, kind of like we walk around the mall now, phone in hand.  I had a phone that was pink.  It was called a Princess Phone, and it had a rotary dial.  I wonder whatever happened to all the phones people had.  Was there a telephone landfill?  John Prine started out as a mailman.  I don’t think he ever worked for the telephone company, though lots of people did.  Telephones have changed a lot over the years.  I don’t think John has ever written a song about telephones.  Maybe Bonnie Raitt has.  If you know, you can tell me in the comments below.

So, my brother was a senior in high school, a gymnast, and four years older than me.  John Prine was six years older than my brother; that is, the “middle” one–I had two older brothers, so one year older than my oldest brother, I would later learn, and also, whadd’ya know?, a gymnast, as both my brothers were–which was a huge deal in our family–and at a high school not twenty miles down the road from where we lived. I’m not sure what all these coincidences mean, other than it must have been meant to be that I found John Prine.  I’ve got to be one of his biggest fans, in my way; certainly much bigger than my brother who still listens to him, but has become more like one of the people John sings about…

But back to then, the 1970s and 80s–years that felt like days passed….I didn’t hear John Prine’s music again until I was with my brother during his senior year and my freshman year of college when we were driving the long distance back home from the university we both attended (because my parents, imagining he would look after me, made me go to the same school as my brother).  Of course, he didn’t look after me at all…but we did drive to and from school together whenever the occasion arose.  Actually, he drove while I endured his driving.

So, one spring day toward the end of the semester, we were driving along in my brother’s old Pontiac Catalina convertible, listening to an 8-track audio tape of one of John’s most famous songs, “Illegal Smile.” Since this time I was stuck in the front passenger’s seat of the car with nothing but time, I now listened more carefully.  My brother has always been more prone to “illegal smiles” than I, but to see us both, you would expect that even this first time listening that I was enjoying the song every bit as much as he was.

I remember how my brother and I laughed when John sang the surprise ending, which includes the words–with a big, sloppy caesura, a catastrophic pause to set the scene–

“Sonofagun /my sister / is a nun!”  

We laughed at the irony of the tale of a stoner pulled over by a cop, nervously reciting all the excuses lawbreakers do to try to persuade cops to let him off the hook…because way back then, marijuana was not even close to legal.  We laughed, too, at the wordplay of the sister being a nun, since as Catholics we always knew nuns really to be sisters…and of course there I was in the flesh, the always holier than thou, in fact biological, sister!  If neither one of us was stoned at the time, we both certainly were beginning to feel like we were.  As we laughed, we were bonded in a collision with our innocence, and I always remember this as one of my favorite memories of being with my brother.

The years went by, and we experienced tragedy in our family.  Above all, we lost our oldest brother, whom we were both closer to than each other.  It ripped the hearts out of my brother and me, and of course out of both of our parents.  We all dealt with it in the individual ways that people do, and before we knew what to think anymore, my brother and I; that is, my only living brother and I, had grown divided and stopped speaking to one another altogether.  In our disunity, we both remain John Prine fans to this day, some thirty years after the drive with Sam Stone in my brother’s convertible.

Here is a John Prine song that encapsulates some of these sorts of experiences between siblings, between me and my only two older brothers, both of them now gone from me.  It has the lines, “We lost Davey in the Korean War / We don’t know what for / Don’t matter any more,” called “Hello In There.

Hello In There

Here is another song I shared yesterday on the John Prine Facebook page, called, “All the Best.”

All the Best

Awww, shucks, this has been fun.  Yesterday, I woke up thinking of John on his birthday and then throughout the day.  What I’ve found is that I could just write and write and write about John Prine.  Maybe I will have to write about him again another time.

Fortunately, thank the heavens, I got some living to do.

Fortunately, thank everything I know, I got some gold inside me, too.

Here’s to all of you, John Prine fans old and new, remember always “You Got Gold.

You Got Gold

This is Day 10 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

U.K. Celebrates National Poetry Day

internet image, source and photographer unknown

internet image, source and photographer unknown

I am going to interrupt my regularly scheduled blog post on this 8th day of the Write 31 Days challenge, because today is National Poetry Day in the U.K. and Ireland.

It is always a good day to celebrate poetry.  Poetry helps not only with fatigue, but really–with everything.  If you know me at all, you know that I am all about poetry.

I write it, I read it, I study it, I teach it, I live it, I love it.

Poetry has sustained me throughout my life, including the darkest times, which include my recovery from acquired traumatic brain injury.

I encourage you to read and even share some poetry today…

You can find posts online under the hashtag #NationalPoetryDay

Here are some poems to get you started, the favorite poems of a collection of readers and writers.

It is difficult to choose a favorite poem; much easier to choose favorite poems, but I suppose it could be said that what follows is my favorite poem of all time.  But only if I have to pick a favorite.

This poem, Final Soliloquy Of The Interior Paramour, happens to be by an American poet, Wallace Stevens.  It contains a line that I chose to be the name of this website, www.firstlightofevening.com

I hope you will enjoy this poem.  Let me know what you think…

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Final Soliloquy Of The Interior Paramour

Light the first light of evening, as in a room
In which we rest and, for small reason, think
The world imagined is the ultimate good.

This is, therefore, the intensest rendezvous.
It is in that thought that we collect ourselves,
Out of all the indifferences, into one thing:

Within a single thing, a single shawl
Wrapped tightly round us, since we are poor, a warmth,
A light, a power, the miraculous influence.

Here, now, we forget each other and ourselves.
We feel the obscurity of an order, a whole,
A knowledge, that which arranged the rendezvous.

Within its vital boundary, in the mind.
We say God and the imagination are one…
How high that highest candle lights the dark.

Out of this same light, out of the central mind,
We make a dwelling in the evening air,
In which being there together is enough.

                               — Wallace Stevens

 

This is Day 8 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

On Social Isolation and Brain Injury

Fatigue is common with concussion, even long lasting, which has to do with the severity of the injury and the age of onset.  For example, when I was 12 years old, one winter I slipped on the ice while walking to a friend’s house, causing a concussion serious enough to hospitalize me.  I had some of the same symptoms at 12 years old that I did at 50, when I was hit 38 years later by a heavy, fast-traveling steel door.  With both injuries, I was tired, listless, nauseous, and extremely weak for more than 48 hours.  At 12, I was able to leave the hospital in 6 days and return to school in 8 with no notable effects whatsoever.  At 50, it was a much different story, even though the force of the blow was admittedly much greater.

One of the things that goes along with the age of onset of any illness is the development, sophistication and maturity level of the patient.  These things generally work in favor or against healing, depending on the particulars.  Of course, all this is also intricately connected to one’s social world.  At 12 years old, for example, quite a fuss was made over my hospitalization as family, school friends, and even teachers visited or sent well wishes.  At 50, even though it was nearly four decades later and one would imagine people would be ever more knowledgeable about head injury, I had almost no fuss made over me, and in fact became secluded with help originating almost exclusively from my husband.

As a consequence, many adult head injury survivors find themselves isolated from peers, unable to drive or even walk safely, and without the energy or communication skills to keep up with fast-paced conversation. Furthermore, if you talk with adult survivors experiencing the effects of brain injury, it’s not unusual but rather the norm that they suffer long lasting chronic fatigue.  Some doctors like to think fatigue goes away or should go away within a certain amount of time, or even that it shouldn’t be there at all; but then, they aren’t the ones who have been hit in the head.  They really cannot know what the experience feels like; they can only guess using whatever instrumentation and testing is available to them…and hope to help with whatever known treatment is available.  Sometimes treatment can be quite helpful, but not always.  Either way, the period of sick leave or convalescence often changes a brain-injured survivor’s life in a big way, because they simply cannot participate in life the way they once did.

When writing about my fall outdoors two days ago, I failed to mention (in Wednesday’s post) that I had to cancel a much anticipated breakfast with a friend.  This becomes a common occurrence for people unable to meet their social obligations, because they just are not well enough to live normally.  For the survivor, this causes more problems than anyone might realize.

Thankfully, my friend yesterday was understanding, and we made plans to meet another time soon. Unfortunately, during my early recovery I found that this was rarely possible, and also that not all people are as patient or as gracious.  In the end, interpersonal relationships are challenged to the point that many (if not most) of the injured survivor’s friendships end.

At this point, due to repetitive health challenges such as fatigue and falling, it feels as though I have run the gamut of dropping out of social situations and activities that I used to engage.  To an extent, the hard part has been that no one has come close to understanding.  I am sure that not one person who cares about me tried to read anything about traumatic brain injury or understand it on their way to analyzing the new me.  It’s frustrating and hurtful, but when a person is especially ill, she just doesn’t have the energy it takes to worry or stress about what people imagine. Equally troubling, cancellations and refusals end up hurting those holding expectations of your attendance, and then you’re feeling bad on top of feeling bad.  The last thing a survivor wants to do is hurt anyone; after all, they above anyone know what hurt feels like; they’re not plotting or scheming anything–they’re just trying to get through what sometimes can amount to some of the roughest days of their recovery.

I specifically recall one holiday season when we were invited to a friend’s annual party.  I said we would attend and we were expected, but a wave of severe fatigue hit and I spent the entire night from daylight on in bed, in pain and dreadfully uncomfortable.  This was before my nasal surgery, which helped my breathing and was so key to my improvement, so that may have been one of the complicating factors.  Needless to say, this person was so offended that my husband and I didn’t show as indicated, that our friendship never recovered, even though I called the next day to explain.

I also received strange looks from fellow members after dropping out of a group I belonged to that I just could not manage anymore while also working.  Even worse, my own group of friends always treated me as though I was a hypochondriac.  Whenever I mentioned any of my symptoms or tried to explain to them what living with post-concussive syndrome was like, they would look away, look at each other, or sometimes just break out laughing.  I never could understand how such well-educated women could be so narrow in their thinking, and so heartless and unimaginative…but they are a highly competitive group, accomplished people with high energy.  I was one of them myself, so I know what it’s like to teach three classes, meet seven students in conference, go to a department meeting, then play nine or even eighteen holes of golf before fixing dinner for the kids.

Still, I thought I would walk out the night, suffering from post-traumatic stress, I mentioned wanting to have my heart checked because of the tightness and fluttering, and they all broke out laughing and almost couldn’t stop.  I wasn’t in on their inside joke, but I could see there was one, and every time I attended those gatherings, I would say it was to be the last time.  I’m sure they hardly cared what I was thinking, since, for whatever reason, they had given up believing that I still could think at all.

People who don’t feel well are not understood.  People who do feel well need to try to have a little more imagination, at least when it comes to what it means to be ailing.  People can be a whole lot less compassionate than we might imagine.  I guess everyone is afraid of “babying” people or “over-indulging” them, or just “giving them attention,” because they have been taught to be suspicious and to suppose that that is what every sick person wants.  What a sick person really wants is to be well again.

When a person that you know to otherwise be credible becomes ill for whatever reason, and they try to tell you what they are experiencing, you generally have no reason not to believe them.  They are trusting you with words and feelings that are hard to articulate and hard enough for them to accept themselves.  They don’t want sympathy.  What they want is a vessel for their fear, a place to vent; or, some information. Support is always good, of course, as is love, but out and out denial, laughter, judgement or scrutiny is a waste of your time and theirs.

This is the reason sick people withdraw.  It isn’t necessarily depression, although isolation can cause depression, so much as their realizing how pointless it is to try to keep up and to connect with people who refuse to slow down and listen or care.  It is true that everyone has challenges.  When someone is suffering some illness, however, we cannot pretend to be in the same equal world where our troubles are just as important as theirs, feeling impatient that they just don’t get with the program.  Perhaps this sounds extreme, but I promise I experienced it.  Even my own family had trouble understanding, and only my husband who witnessed so much of my suffering had any notion of just how serious my condition was.  Of course, I tried to act “normal,” but it is a little difficult to hide deficits (particularly physical and verbal) with head injury.  People can’t see your pain, but they do hear your speech slur or witness you searching for the word you want but cannot locate.  You look healthy enough to them, so instead of wondering how it all works, they instead wonder if your delayed communication isn’t some adopted affectation or psychological quirk.  Do they really think a person would do this to get attention?  I know I would much rather have my active and productive lifestyle back.

If you are a friend to anyone who is suffering an illness, the thing you can do is carefully watch and listen. Pay attention, but do not judge.  About a week ago, I had an hour long conversation with a neighbor who recently underwent brain surgery for stage 4 brain cancer.  His wife stood in awe at my patience with him and how I kept finding ways to navigate the conversation and move it forward.   Sure, he mixed things up and repeated them and asked questions about things he already knew well; sure he said some odd and erroneous things, such as saying twice that his daughter is 72 and his son 78–when it is more like 34 and 29–but whenever I corrected him I didn’t bust out laughing, and sometimes I just let him say the wrong thing or stammer or do whatever he needed to do.  After all, the poor man kept tearing up as it was, telling me the small things he’s come to value like an invitation to breakfast or a visit from his children on his birthday.  He must be terrified.  He’s been emasculated enough by losing the ability to drive.  For all I know, he may make a complete and miraculous recovery.  None of us can know.  And whether someone lives to tell the story as I have, or sadly loses the fight, I would think one would want to treat that person with as much dignity as possible.

How could it be that we have become so distracted and self-motivated

that we have lost our fundamental respect for another person’s life?

You may say, “Oh, I am so sorry you had this type of experience!” or “What kind of friends do you have?” Yet, I assure you, we all commit these oversights every day. It’s easy enough to do. The thing to embrace is to try to learn what you can, to try to think before you judge, and to recognize always that that person who is so annoying or confusing or slow or whatever you ascertain they are, could one day, more easily than you imagine, be you.

_____________

This is Day 9 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

Wednesday Challenge Checkup

PROGRESS

Today is the seven day mark in the Write 31 Days writing challenge.  I thought I’d report on how it’s been going for me so far.  I am pleased to say that I have made it through one full week of blog posting, a first! This is a feat in itself, and I am grateful for the few new things I’ve learned about blogging (how to do a new page, which is different from a post, and how and why to do a landing page).  The time it takes to work the electrical end of the internet has me wondering about blogging, though.  So many uploads, so much time. Editing can be a nightmare, and photo sharing is also something I need more practice with, obviously. Everyone says to compose outside of the blog and copy/paste, but I like writing here, because it helps me stay in my blog-voice.  I think I’ve found my blog-voice!?!

With just one week in the trench, I’ve gotten more comfortable with sharing and have received some new feedback and I think maybe one more subscriber and a few twitter followers, which is all helpful in its way. I shared my landing page on Facebook for a few hours, then chickened out and removed it.  Why do I still feel that publicizing my blog is imposing on people?  Why do I hear in my head their gossip more than their praise?  I really don’t like such distractions to my writing, so I’ve decided for the time being not to worry so much about the sharing, and just to continue to focus on the writing.  I hope someone is reading this thing, but it really isn’t essential at the moment…

My own private writing has not caught up to the progress my blog posting has, and that is definitely something I want to improve.  So much so, that I am thinking about following up this challenge with my own 31 Days of Writing Privately!  Skip the blogging altogether, unless I am so moved.   I do love blogging, but I want to return to my poetry writing and my novel/book writing (I think I’ve decided to scrap the memoir at this time).  Writing is hard work.  Blogging is a little more forgiving, at least at this stage…

This Write 31 Days challenge has certainly had its share of surprises.  The first five days were the bomb in terms of good energy and success.  I had a journal contact me requesting I submit to it, an entertainment writer quote me in an online piece, and a meeting scheduled with a credible source on a line on a possible publisher for the future. It might not sound like much, but all had me doing the happy writer dance.   In addition, the few comments I have received have been positive and encouraging.  My husband and daughter have taken even more active roles in supporting my writing…so, all in all, it’s been a really healthy experience…

Did I mention that my daughter caught one of my grammatical errors, questioned it, and she was RIGHT? She was reluctant to tell me, but honestly, could I ever be prouder of that girl?  My husband even caught me writing “somedays” when I meant “some days,” and I thought I was going to marry him all over again! I like when people correct me, if I am wrong.  My brain just doesn’t see how it used to, and I make errors I am not accustomed to making.  About the only thing that is exactly the same in my writing as it was pre-injury is that my mind is ahead of my typing.  I’m so glad I still at least have thoughts I want to convey…if even they come out a bit mooshier than they once did.  See, I have never used the word “mooshier” in my life.  I know, because I mean MUSHY (er)!  Oh, the brain…

These last two days have not been so great.  I’ve been marginally disappointed by the lack of feedback on my posts, but I realize people are still reading and that that is what matters (MR, if you’re reading this, I’m missing you!).  Of course, there is so much on the internet; I’m not sure how anyone stays in any place long (as I myself sit with five windows open above my screen).  There really is an amazing amount of text flying around the internet.  What a great time to be alive.  Especially for a writer…

Somehow through this challenge I have gotten myself aligned with a christian group, which ends up meaning I have seen some hypocrisy–just a wee bit, fortunately–but that is never a pleasant experience.  I still think it’s fine because it introduces me to an audience I’ve lost touch with, and some of the women have been refreshingly supportive (not the hypocritical ones, obviously).  I also find this mildly intriguing as I lean toward rejuvenating my spiritual center within, which was all but lost to my injury…

What’s really surprised me is the number of people in the challenge wanting to post something, anything, no matter how short, just to fulfill the daily requirement.  These are the people always looking for a shortcut. They ask about posting things they’ve already written, about having guest bloggers or just doing giveaways–basically, filling the space of the day.  I suppose it is fine to use the challenge however one wishes, but…excuse me, um…I thought this challenge was supposed to be about writing?  I realize my blog isn’t like those with a few quick bullet points, but I’m not really after that sort or readership, at least not at this time…

I hope to secure readers from the actual reading public.  Someone looking for some inspiration or some ideas to consider, perhaps.  People who like to engage in meaningful conversations, maybe.  Plus, I consider myself a writer, working on my writing skills–not on my design or layout skills.  I do admit, I like design, but prose is what I am ultimately after.  My daughter says my posts are so long that most people who aren’t readers leave right away anyway; “It’s too much, ” she says.  I have to laugh, but I know she is right.  Still I tell her, “I am writing to write, and you can’t do that by not writing!” I do, however, apologize to Stumbler readers impatient with my long(ish) posts.  I’m hoping readers know my back story and why I’m blogging, that this is cognitive therapy for me (for recovery from acquired traumatic brain injury), and that getting where we want to be isn’t always pretty.  We all need to know that, don’t we?  To newcomers, well, I guess many just click away or never return…

Speaking of head injury and breaking free, let’s talk about that really big “f” word:  FATIGUE.  A powerful word, I now know.  Unfortunately, a condition shared by so many…

Writing every day has caused me more fatigue than I hoped it would.  Of course, there was a time in my recovery when one sentence was too much, when I couldn’t even read, let alone write…but I didn’t expect this 31 day challenge to be as hard on me physically as it has.  I have had head pain every day.  Not unbearable, but worse than before I was doing this challenge.  I also missed my daily walks the first three days, and that wasn’t good, even though that doesn’t necessarily help my head pain and I walk slowly–it’s still good for me in many ways.  Fortunately, my sleep hasn’t been too disturbed by the writing, though I have recently returned to my CPAP, which always seems to help (but is embarrassing)…

The worst thing that’s happened during this writing challenge is that yesterday, on day 6, just as we were completing our daily walk, I FELL.  Unfortunately, I fell on concrete.  I thought I could catch myself, as my legs have grown stronger from the walking, but despite my nearly doing so, I ended up flat on my face–crushing my nose that had been surgically widened to help my breathing, smashing my teeth that I am in endless pursuit of trying to have repaired (from the first, most intense blow of which this writing is about), and sadly, even though I tried so hard not to let it thump–my head.  I have lost count of the falls and the head thumps, but at the time of this fall, I was still nursing my second broken toe of the year.  As my father says, I “cannot catch a break,” but he means for healing, not bones.  Broken bones, I do catch…

The silver lining, if there is one, is that I was near my home when it happened, and my husband was with me this time.  I was able to make it inside okay.  I thought I may have broken my nose (again–this would have been the fourth time, shriek!) but fortunately that does not appear to be the case now.  We iced me up from head to toe…

I did a supreme job of jarring everything, including my shoulder, wrist, neck, back, knee and ankle.  But it took my mind off the broken toe…and I’m pretty sure that I am going to be fine.  Of course, it could have been worse!  The worst part of this fall was the shock and the fear it created.  It took me several hours just to feel calm (can you say anxiety?).  I have to work on myself not to feel jinxed or cursed.  The spills have a way of adding up…

I would have to mash my face again!  I wonder if people have any idea when they look at me what my poor face has been through?  Yet, a face can be seen, a brain cannot.  There are the visible wounds, the not so visible, and the invisible ones, aren’t there?

Forgive me my self-compassion.  I do love my brain!  You should love yours, too.  Phenomenal organ.  The finest.

So, here’s how I’m feeling on this seventh day, ending week one:

a poem for mornings BLOG

Ugh, thank the beverage gods for coffee, real or metaphoric…

Soldiering on…writing on…because, really, we never know what tomorrow will bring.

Love!

This is Day 7 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

 #write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

The Shame We Don’t Discuss

three in autumn

The Shame We Don’t Discuss

Fatigue is a complex condition that is sensitive to several influences, not the least of which include stress and anxiety.  A person does not have to suffer the intense level of anxiety brought on by an illness such as cancer or by conditions such as post-traumatic stress to know the distraction and sometimes debilitation anxiety can produce.  Nearly all humans experience circumstantial stress and anxiety to some degree. Stress and anxiety also worsen compromised health conditions, creating additional complications.  The problem intensifies when a person addresses such discomfort with addictive substances, which ultimately develop dependency.

Early on in my convalescence, I noticed the lack of information nearly everyone had surrounding head injuries. It also wasn’t hard to miss the high level of discrimination that matched the ignorance.  The level of processing and tolerance it takes to understand people’s biases just compounds the stress most survivors experience. While each injury is unique, closed head injuries do not typically lead to insanity. stupidity or even aggression, as is often characterized.

People with closed head injuries can still be cognizant and perceptive, despite compromised interactions with others.  Most brain injured find themselves laughed at and patronized, even though they can still distinguish many nuances of thought, and genuine concern from criticism.  With respect to the sophomoric ribbing that typically accompanies the condition, one’s illness is never a joke–unless you’re the one not suffering it.  Ironically, one might ascertain that the common misconceptions forced onto the victims might more persuasively be reflected back onto the unenlightened.

Fortunately for me, I learned at a young age the value of calmly addressing both the anxieties of myself and others.  From the beginning, this premise influenced my response toward the effects (that is, once I broke my own initial, and realized I wasn’t going back to work the next week, as I tried to do).  I never hid what had happened to me, nor did I or do I carry any shame.  I know, perhaps better than most people, that what happened to me can happen to anyone. The Center for Head Injury Services states that in the United States, a head injury occurs every 15 seconds.  According to the Brain Trauma Foundation, traumatic brain injury is the leading cause of death in children, adults and the elderly. If you have never experienced a serious concussion, you want to keep it that way, if you can.

book cover patrick kennedyWith these thoughts in mind, I recommend viewing this Sunday’s 60 Minutes interview with Patrick Kennedy about alcohol, mental illness and his family, as outlined in his new memoir entitled, “A Common Struggle:  A Personal Journey Through the Past And Future of Mental Illness and Addiction.”

Although my struggle has not been exactly the same, there are enough overlaps among the stigmas.  As Kennedy points out, the problem centers around what we all know, but are reluctant to talk about.  His coming forward has caused a rift in the Kennedy family, he says, because they “do not want to be associated with a medical illness. That should tell you something about the shame and stigma that still surrounds these issues.”

Similar to concussion or perhaps more so, all individuals and families are in some way affected by mental illness or addiction, if only secondhand through their relationships with those who share the curses.  Especially notable is what Mr. Kennedy has to say about the shame and impact that accompanies these lifestyles, and how it is time to stop hiding from what makes us uncomfortable, and start discussing what we can do to make things better for all concerned.

With so many mentally ill and addicted people unwilling to receive help, it is often up to friends and loved ones to offer support and encouragement…or to suffer the frustration of not knowing how to help.  Kennedy also emphasizes that “there is hurt to keeping this secret; if you don’t talk about it you’re in trouble” in part, because of the delusional nature of these illnesses.

What about you?  Here are some journal questions to explore:

  1. Are you open to discussing your problems with a trusted friend or family member?  If so, who would that be and why?  If not, why not?
  2. If you are not able to do #1 above, what makes it difficult?  How did this come to be, and how can you change things so that you are freer to speak authentically about your feelings, needs, and concerns?
  3. If you are not able to discuss problems, what do you to cope with the stress and anxiety?
  4. Is there anything you feel you need to help you improve and move toward better, more fulfilling health?  If so, how can you secure these things?
  5. If your health doesn’t feel compromised, what about your work, your social life, your relationships?
  6. Are you as healthy and as happy as you want to be?
  7. Write a script of what you want to say to yourself or someone else about a feeling or a need.  Include others and what you imagine their responses would be.
  8. Ponder some health goals for the coming year. Include mental, emotional, psychological, and spiritual health as well as physical fitness.

Following is some video coverage of Patrick Kennedy’s call for awareness:

http://www.cbsnews.com/videos/patrick-kennedy-shares-secret-family-struggles-in-a-common-struggle/

You can see the 60 Minutes interview from Sunday, October 4, here:

http://www.cbsnews.com/videos/patrick-kennedy/

This is Day 6 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

© debra valentino, all rights reserved, www.firstlightofevening.com

Artists of the Spirit

IMG_7447_Fotor Spirit2 floe

Artists of the Spirit

We are all artists.  Some of us have different talents and interests, but we all have spirits.  It is so important to have an inner life, and with that to nurture our spirits.  One way to break free from chaos, pain, confusion, and certainly fatigue is to turn toward the spirit within yourself.

There is a saying that we are always the same age inside.  For me, I also feel that constancy in my spirit. In many ways I’m still that same child who sensed the first stirrings of a sacred presence beyond the self. Sundays are good days to ponder our spiritual journey, and to break free from old disappointments.  They are like days of cleansing and renewal, when all is washed away in celebration of the week that passed and in anticipation of the week ahead.

Consider the words of the wise don Miguel Ruiz, author of The Four Agreements, in the quotation above, and then the advice in the Four Agreements as posted below.

the four agreements

May you each enjoy your Sunday.

May you feel the freedom to express yourself in your own particular way.

May you express your love openly.

May your life be an artful masterpiece.

______________________

This is Day 4 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

Day 4, #write31days

© debra valentino, www.firstlightofevening.com, all rights reserved

A Truth That’s Told with Good Intent

autumn's first leaves

A Truth That’s Told with Good Intent

On July 6, I began a 100 day photography challenge that I wrote a bit about here.  Today was our 90th day. The simple purpose of the challenge was to take one photo each day of something that made us happy. Most of us took our photos on the fly with just our cell phones, but a few more professional posts were taken with digital cameras.  We started out with a group about twice the size as we ended up with; so about half of us are still participating with only ten days left to go.

When I started, I was in a whirl of agony from a couple of traumas I have no control over; not little stuff, big stuff.  I was determined to do what I could to get through the storms and to enjoy summer as much as possible, mostly because I’m just tired of suffering.  It wasn’t easy, but I was flabbergasted by how this photography challenge helped me.  On my worst days, I did not participate, but as soon as I could rejoin the group, I did.  What I found was that wherever I went, I was looking for the good.  To do so is my nature in the first place, but everyone is only human, and sometimes heartaches throw us off course.  I needed this assignment.  With the discipline of this challenge, I was able to add more joys to my day each and every day.

Years ago I adopted the philosophy of the English poet, William Blake, who wrote centuries ago about seeing heaven in a wildflower (Auguries of Innocence).  This focus enables us to experience delight in the smallest, most ordinary things, and to value them.  Because this challenge of focusing on something that makes me happy came easily, on a few days I was even hard pressed to decide which photo I wanted to post.  Other days, I knew instantly.  On a few occasions, I was unable to take the photo that captured my attention, because I did not wish to be intrusive.

Still, often enough, I came upon images, particularly on my daily walks. Here are a few photos I shared in the group from my nature walks and walks around town…

100 days photo

one hundred happys

eagle
little library
IMG_1917 (1)

banner

Then there were the occasions, the dinners with friends and breakfasts with my husband, the family vacation, preparing for our granddaughter’s Sweet 16 birthday party, not to mention our occasional road trips and bike rides, gifts given and recelk 100 happy dr seived..along with the simple, everyday things like reading a book at the library, taking the dog for his walk and watching the children flock to pet him;                                                               a IMG_1678visit to one of my favorite doctors who takes good care of me and seems to care genuinely about my healing; the day I received my t-shirt for this challenge; seeing the grand baby grow and make her first friend….All of these things and more brought joy to my days.

100 happy days dad's giftday 50 happy pics

IMG_1192 100 happy days
Screen Shot 2015-08-20 at 6.40.40 PM

 

 

 

 

 

baby with dog

romeo and the kids 100 happy days

grandbaby and her first friend one hundred day pics

 

 

 

 

 

 

 

 

 

 

 

 

 

In the collective, these daily photographs made me realize that our suffering is actually a small part of us, though it feels constant.  We should keep this in perspective, and focus on the good to the best of our ability.  Even if we have to look back or forward, the good is there.

Even with all this happiness, life can be hard.  We all must do what we can to break free from the trials that plague us.  It’s all a matter of how you want to define your life.  Do you want your illness to define you?  Do you want tragedy or heartache or disappointment to define who you are or how you face your days on this planet?  All of us are living on borrowed time.  All of us know sorrow.  If you are a person who suffers, try searching for whatever makes you smile.  If you are a person who is greatly blessed, try doing what you can to bring a smile to someone else’s face.  Remember though, it is not so much what we can do for others–though that surely brings joy–but more to the point, what we can do for ourselves.

______________

This is Day 3 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

Day 3, #write31days

                                       © debra valentino, all rights reserved, www.firstlightofevening.com

 

 

On Breaking the Rules

mykonos stairs
On Breaking the Rules
(and Some Happiness on Day 2)

Yesterday I broke one of my own writing rules.

I always told my students, both in class and when they came to me whining or even crying, never to write while they were tired.

There is no sense in it.  Writing is thinking.  It takes energy, focus.  It draws on everything you know and were ever taught.  It even draws on all the questions you have or will ever have.

It’s a mistake to write while you’re tired.  If you do, you will spend a lot more time trying to articulate what you want to say.  You will get angry and frustrated; you won’t enjoy it…and writing should always be enjoyable.  At least that is the goal.

Not to mention the mistakes you will make.

If you want to embarrass yourself, write when you are tired. Even if you save face, you’re likely to get mad at yourself for doing it.  The only benefit to it is that you have written.  But sometimes all that yields is bad writing.  Fortunately, I had lessons for my students on what to do with bad writing, too.

Most people cannot write effectively when they are sleepy or muddled, and yet I did that yesterday.  I did it because of this 31 Day Writing Challenge, which has already taught me to be intimidated by it.

So, today I’m writing first.  I’m getting it out of the way (did I just say that?) (haha, it doesn’t take long for an opportunity to feel like a task)!  I am going to re-calibrate.

The amazing thing is that even though I broke my own rule yesterday, I also achieved my number one goal for this challenge, at least the blogging part of it.  I OVERCAME MY OWN FATIGUE.

I DID THAT.  ON DAY ONE.  Day one of the challenge, and I put into practice a technique that I had only hoped to achieve.  I stayed busy the entire day.

And I didn’t die!

I think this proves that I am a LOT wiser than I ever imagined.  Or, a lot stupider.  Ha!

You see, my premise is that it is possible that the lingering effects of my physical fatigue from my head injury have become rote.  That the behaviors of all my long days of healing somewhere along the line became habituated.  That I do not need to rest, so much as I think I need to.

I’m trying to break this habit.  I’m wondering if we don’t become identified with a thing (in this instance, fatigue), and that thing then informs our actions.  I know that as a mom, I think like what I believe a mom should be.  As a wife, I behave like a wife — I like to tell my husband that I don’t even know how to flirt, so he better not leave me.  I sharpen the skills that matter, and don’t pay a lot of attention to the ones that don’t.

Do you do this, too?

Yesterday was such a big day for me.  It was the launch of this challenge, which I have never before attempted.  And it was just a regular day.  Except it was more like a regular day from my old life, than a regular day from me current life.

That is incredible.  When something like this occurs, it’s a metaphoric closing of the briefcase.  We can turn out the lights and go home.  Class dismissed.   We have accomplished what we set out to do.

AND IT WAS ONLY DAY ONE.

So, while I am mad at myself for blogging last night at midnight after a long day with no rest at all, I am also very proud and rather astonished.  It’s like I gave myself the suggestion, and it was done.

Can you imagine the changes we could make in our lives if we were always this successful?

How did this happen?  I must have been ready.  But I didn’t feel ready.  And it was such a whirlwind, I am still feeling tired…

Does it matter what I did with my day; did that influence my success?  I suppose it did.  I did not get my walk in.  Lately, walking has been my priority–but it always seems to wipe me out.  All exercise does.  I thought I would die on Labor Day when we took a 35 mile bike ride.  It took me days to recover from that. It doesn’t matter if I walk one mile or ride my bike 35, I always get fatigued.  That wasn’t my pre-injury habit; my pre-injury habit was to keep going until the day was done.

Yesterday, I did not get any physical exercise, but I kept going until I finished my first official 31 Days blogpost.  I went shopping with my husband for the first new table and chairs I’ve gotten since 1985.  It took HOURS at the furniture store.  Hours to select, hours of listening to the saleswoman drone on.  I was amused by how she would always say how great something was, but never include the cost.   Despite my pointing that out to her (we brain injury survivors can be a bit unmonitored), she kept doing it, even when she knew the price without looking it up.  I wondered if that was just her or some faulty sales training.

When we finally escaped the furniture store, samples in hand, I remembered that I had promised to call an elderly friend early in the week, and that it was now already Thursday.  I telephoned her as my husband drove.  Naturally she needed my help.  The weather has changed and she was freezing, with her thermostat still set to air conditioning.  I hadn’t planned on a visit with her, but alas, I couldn’t let the poor woman freeze, and made time.

First, however, we had to stop at my father’s to switch his regular-sized bed frame to the low-profile bed frame we had just picked up from the furniture store with the chatty saleswoman.

That took longer than hoped.  My dad kept getting in the middle of the furniture shifting.  He’s 84, overweight, and no longer exactly agile.  “DAD, sit down,” I kept saying.  I kept seeing tragedies.  I was relieved when we finally got the job done and no one had gotten hurt.  My father was happy with the three inch height adjustment.  Success!  Falls averted.

Then it was time for my haircut.  I never do three appointments in a row these days; especially not three so intensive, time-consuming, stressful ones.

Just before I went into the salon, I turned on the car radio and heard the news of the Oregon school shooting.  That threw off my whole day, as I used to teach in a similar environment and have a lot of trauma connected to school violence.  I was never really okay once I heard this news, and I am still feeling unsettled about it even as I write…

On the rest of yesterday’s occurrences:

You know us women with our haircuts. I had some anxiety about getting one.  I have hair I could write novels on.  Anyway, we got through it, and the stylist was very pleased with her artistry.  I admit that I looked 20 years younger when she finished, but I wasn’t exactly thrilled with the styling.  That was okay, though, because I usually never am.  I am a bit more plain than the sort of girl my hair belongs on.  I never know how to carry myself with confidence with a fancy, show-stopping hairdo.

Then it was time to check on my elderly friend.  I figured out her thermostat, then she wanted me to sit down.  I thought I could spare 20 minutes, but I was there well over an hour.  She needed to talk, and the conversation turned to her end of life planning.  We had a lot to say about it, even though she kept repeating the same stories and asked me seven times what city my daughter lives in.  It was apparent that it was high time she did some thinking about this.  I was proud of myself for how much I knew about end of life planning–I didn’t even realize I knew as much as I do–and all the examples I was able to give her, mostly from experience with my own parents.

When I finally got to leave, she seemed motivated and changed, maybe even hopeful.  She kept telling me that she used to be able to travel unattended–but I told her she used to be able to dance, too.  I made her face the hard realities that what is ahead is cause enough for her to do the planning now, and I even mentioned while she is still lucid.  Similar to talking with my students, it was easier than talking to my own children.  I could talk straight with her, when I am not equally as effective at having the same conversation with my own father.

When I returned home, my dear sweet husband was just waking up from a nap.  Wait.  He took my nap–the nap I never got!  Believe it or not, he said he was too sleepy to fix dinner.  I didn’t expect that, but neither one of us had eaten since breakfast.  SO I FIXED DINNER.

WHO was this super girl I had morphed into in just one day?

Then my daughter called.  She talks more than the furniture saleswoman.  “Honey, give me your update, quick.  I need to blog!”  We both laughed.  She always laughs at my writing urgency.  After all, she sees me as her mom; she just can’t make the leap into serious blogging woman that I am.

My daughter’s updates are never uneventful.  It’s a good thing she calls me daily.  I could never take a full summary.  Last evening it was the fundraiser she attended with 200 people and the co-worker that came to her office and closed the door.  In her mother’s fashion, she drew out the story…what was happening; why did she close the door?  She said it was an employee wanting to secure permission to help another employee’s boyfriend stage an engagement proposal at their office.  It was all interesting and rather exciting, but I still had to get some writing done.

So, you have to forgive me for yesterday’s post, which I wrote while exhausted.

Please do celebrate along with me, though, the change accomplished that is the focus of this challenge.  I broke free from fatigue!

On Day 1.

Here are some photographs from today’s proposal, which happened this morning at my daughter’s offices. She said the boy brought his mother along.  In the video link that follows the photos, you can hear the mother calling the young woman her “new daughter-in-law.”

You know I love that.

IMG_2203

proposal acceptance

 


engagement proposal video

Day 2, #write31days

© debra valentino, all rights reserved

Welcome to 31 Days of Breaking Free

breaking-free-large
Today is the first official day of writing for the 2015 October writing challenge that I joined not knowing anything more than that I wanted to commit to writing daily.  I’ve already discovered some amusing factoids about this particular challenge that I may be addressing later, most hopefully when I am more awake than I am at the present moment.  For one thing, I never got my nap today.  Or this morning.  Or this evening.

Ironically, I wrote yesterday but not today.  Even though, as I said, today was the scheduled first official day of writing.  I didn’t mean for this to happen and I certainly didn’t expect this kind of launch…but here I am, going on midnight (did I mention without any nap?), trying to string together something cogent–not because writer’s write, but because I committed to a 31 Day writing challenge.

I am nothing if not dedicated.

So here I am fatigued, writing about fatigue.  We’re talking about keeping it real.  And not falling asleep at the keyboard.  (I do that a lot; do you?)

Let me just say that during this challenge, I would like to write all day every day.  I love to write.  Even when I don’t write well.  Writing is so liberating that even after just one day, I think I am already feeling physically better than I have all week.  I mean, I hated today’s news about yet another school shooting, and I am disappointed today got so busy that I couldn’t write until the last minute, but I am still here.  Maybe it’s just as well that I am so tired, because with all that occurred today I would want to be writing about that.  Now I am too tired to fuss with myself.  I can leave those subjects for another day.

I wish that during this challenge I could write all day every day.  Given the opportunity, I truly believe that I could write for days on end; that is, if fatigue didn’t stop me.  I hope to take at least one day each week of this challenge and do just that.  Write only. It will be interesting to see how that goes.

For the blogging part of this challenge, I have chosen Breaking Free from Fatigue as my focus  because I have been battling fatigue for eight years now, something I couldn’t even clearly define before I suffered an acquired traumatic brain injury.

So intense a blow to the head was it that it took me years to recover, and I still have the vestiges of post-concussive syndrome that undeniably includes fatigue.  You might think that it would have resolved by now, but in truth it has improved notably but not completely.  Nearly every day is still disrupted by at least some level of fatigue.  I just can’t move at the pace I once did, nor at a pace I can live with.

The truth is that a person doesn’t have to be hit in the head to experience fatigue, which comes from a myriad of conditions and origins.  Millions of people suffer from fatigue for all sorts of reasons.  Fatigue can be a surprising teacher, and there are both literal and figurative things to say about it.

One thing to know about fatigue is that at all costs, you do not want to suffer it.  When a person suffers from fatigue, it is kind of like giving themselves up for adoption, only to discover there are no fit parents available.  It’s not at all a fun way to live, because it really isn’t living; it seems more like some form of paralysis.  And it is very tough on your body, which needs movement to thrive.

When you suffer daily from fatigue, you just want to get rid of it. With the many new and traditional treatments I have tried that resulted in only small increments of improvement, I have finally wondered if maybe the last vestiges of my fatigue are not being caused by my identification with it.

You know how it is–you do something long enough, it becomes part of your identity. Your psyche takes over and before you know it, your behavior is informed by what you think you are, by what you imagine that thing to be.

I wonder if writing daily about Breaking Free from Fatigue could put an end to my suffering the effects.  I want to break free and reclaim my life to a closer proximity of how I once knew it.  I know many people are mired in this same challenge.  I also hope to prove that a person can return from the hollows of death, can survive, and thrive, even and especially when others have written them off…and that even if they do not, their life is still sacred, still valuable, still worth living. I also want to share (and to finally experience) how a full recovery can not only overcome impossible odds, but maybe even be natural.

change

So, if you have a challenge in your life, if you need to break free from some pattern of thinking or behaving or being that plagues you–or if you know someone you wish would do the same, I invite you to follow my daily posts to see how I untangle myself from this mess that was not of my own creation…but in the end, may be.  In addition, how we can break free even from messes that are of our own creation.

If we have anything to do with who we are, if will and desire and effort count for anything when it comes to change, I hope to show both of us just how it could happen that it is not our maladies that define us, but our determination.  I hope to show that on some level the only prison we are in is the one we allow ourselves to occupy.

Come along and break free with me.

This is Day 1 in the 31 Day Writing Challenge, 31 Days of Breaking Free from Fatigue

#write31days

@ debra valentino, all rights reserved, www.firstlightofevening.com

The Frustrating Game of Finding Useful Treatment for TBI

rocks

Head Injury is Full of Surprises

Sustaining a head injury is full of surprises.  First, you are shocked by the blow itself, then shocked that you are still alive, then by how much pain and suffering the injury causes, and then by how little is known and how little help is available…AND THEN, by…

How long it takes to heal.

Add to the mix a lot of fear of the unknown, the weird reactions from co-workers, family and friends…and well, you can start to see how head injury ironically ends up keeping survivors on their toes.

There is a lot of suffering, a lot of waiting/of trying to endure, a lot of not knowing, a lot of holding on.

The Need for Improved Treatment

Physicians seem somewhat mystified by head trauma, which also is almost always brain trauma.  As a result, they have perspectives that tend to be sort of locked, limited, and dead ended.  A change in perception by the medical community, along with some innovation, could rapidly advance the treatment of head trauma.  Surely researchers are working on this, but for those who suffer, help hasn’t and can’t come soon enough.  The alarming thing to date is how little is known about the brain’s plasticity, or ability to rewire itself.  In fact, it has only recently been discovered that it can rewire itself, that new neuro-pathways form.  The result, in part, is that victims are given a generally small window of recovery time, when much more time is often needed.

CARTOON

One thing for certain, there are currently no clear approaches to treatment that are tried and true.  As a consequence, patients get ignored and their setbacks go unaddressed.  At the same time, there are all sorts of tests being readily ordered, and these tests (e.g. CT scans, MRIs) almost never render data that results in useful treatment, no matter how severe the results or how insignificant.  Patients also rarely are told the purpose of such examinations or even their advantages, and when they are told anything, explanations are brief and questions go unanswered.  The bigger problem (if it can be bigger) is that doctors seem to order these tests as solutions in themselves.

All this approach does is get one patient out of the physician’s office and allows the next to come in:  “Next.”

Through it all, the patient is left wondering what treatment is all about, and when they will experience some relief from their symptoms.  All the while and despite the added confusion this process delivers, the patient is so desperate to feel better, they typically proceed with hope.  This resolve does not even factor in the input of caregivers, which is generally but not always supportive.

Testing and Recovery

Unsuitable testing needs to change, and new diagnostic approaches must be designed.  People are suffering needlessly, and recovery in many cases is drawn out much longer than might be necessary. One of the biggest misnomer’s is that brain injury causes a lack of motivation, when in fact, brain injury survivors hold out hope and are highly motivated to return to pre-injury status.  Prolonged post-concussive syndrome is highly uncomfortable, yet survivors are acutely aware of their needs.  They are often able to articulate the disabilities, if not answer canned test questions. One would hope patient input could be key to medical advances…not just unveiled deficiencies that could improve with time and intervention.

concussion poster

Testing is common in brain injury remediation, and that is about the best you can say about some of it at this point–at least from a patient’s perspective.  Head injury patients need treatment, not ambiguous testing that does not guarantee treatment.  Testing might not even be the fault of doctors…but if it is, it should change.  The advantage of testing should be more clearly defined–who actually benefits from it?

It almost doesn’t matter whether your injury is severe or mild, you are in for a long road of physical agony and drain–on your body, as well as your heart, patience, and pocketbook.

Prescription and Other Therapies 

Sometimes, medications are prescribed to treat post-concussive symptoms such as dizziness, nausea, and fatigue as well as pain, which is typically chronic and often severe.  Medications can work wonders, but they generally come with their own sets of problems, and better ones might be developed.  Additionally, length of prescription therapy is key. Some medicines can pass their point of therapeutic advantage and become toxic. All medications for brain injury need to be carefully prescribed and monitored, yet monitoring itself takes time and money.  Any chemical recommendation must also come from an experienced or knowledgeable physician who is willing to watch closely its affects.  This doesn’t seem to be the experience of most survivors at this time, and certainly wasn’t the case in the past for those who were left interminably in rehabilitation facilities.

Prescription therapy also means the patient must be compliant by taking the medication, and on schedule. Medications can also feel threatening to a brain-injured individual, who has already experienced indescribable near-death terror and suffering. Doing anything on a schedule is its own obstacle when a person is feeling so uncomfortable and so fatigued. There is a lot of being bed ridden, and finding it difficult to get up at all, no matter how much the patient wants to get moving.

Even if the patient is lucky enough to find a high caliber physician who knows the right medicines to prescribe, getting to a doctor’s appointment can be difficult in itself.  Many brain-injured individuals lose the ability to drive a vehicle, at least temporarily.  Plus, when patients don’t feel well to begin with, car rides and long waiting room visits are a trial all their own.  Doctors are also busy, and that makes getting in to see them a dance all its own, not to mention the restrictions placed on both the provider and the patient by the insurance companies.

It seems that most people do not realize that a lot of concussion recovery is holding on for dear life, like you’re on the fastest roller coaster–doing dips and drops on an empty stomach, with strobe lights all around and loud music blaring.  There’s also the belief that that is the patient’s fate, and therefore there isn’t anything to be done to help them.  Breaking through this Neanderthal misconception could be the dawn of many improved therapies.

Supplemental therapies such as Reiki, cranio-sacral therapy, vitamin supplementation, cognitive/ physical/occupational/speech/vision therapy, meditation, and even massage are all useful considerations. The thing about supplemental therapies is that most are not covered by insurance, no matter how useful or beneficial.  Timing is also key to supplemental therapies, because what works later in recovery is not necessarily what helps early on, and vice versa.  Receiving therapies out of synch sometimes leads to increased discomfort instead of improvement.  On the contrary, adding techniques such as these will often render impressive improvements, particularly in pain management.

A Final Note About Physicians 

Despite the frustrating state of medical science at this time, the brain injured patient does not want to go without a physician.  Finding a caring physician is equally important to finding a competent physician who is knowledgeable, but both are unfortunately feats in themselves.  Whether a physician cares about you or his own practice or is dedicated to his science alone is of little consequence–you need a physician who actually does care.  How you accomplish this has a little to do with luck, but if you find yourself with an uncaring physician, you should definitely seek referrals from others.  I cannot stress the value of having a physician who cares about your recovery.

You can help your own situation by getting the doctor to like you.  This isn’t an easy task for any brain-injured individual:  You know the discrimination you face daily, the drudgery of being discounted and relegated to inconsequential…the drain head injury presents to all connected.  Please note that you do not win the physician’s favor by buying gifts or flattering them or any such tactic; you pretty much win it just by being yourself…by letting the physician see that you are a real person.  Be true to yourself as best you can so that your doctor can at least see glimmers of your pre-injured self.  You also win your physician’s favor by being co-operative.  This means you have to check your anger and frustration at the door, not get into any spats with the receptionist or staff…and if you can do that with a head injury, you are probably pretty likable by nature and/or well on your way to recovery.

Important Insurance Information

When securing a physician, do not forget to first check with your insurance to make sure they are covered and/or in network.  This should be done upfront, but some brain-injured people can find ways even to mess this up.  For example, I made the mistake of changing insurance companies mid-treatment (because, as you know, complex analysis sometimes eludes us, if only temporarily).  I switched carriers while going to the same doctors, and somehow thought this would save me money because the monthly premiums and co-pays were slightly lower (though they eventually increased anyway).  The end result is that I am still paying my way out of that mistake–for treatment that was once nearly covered in full.  It’s also unnerving, because I certainly never meant to compromise the doctors’ payment or my own ability to pay–I thought I was doing something smart.

Remember also, you must have an advocate.  This is true about anyone who is ill, and really about anyone in case they get ill.  More on that another day…

Here is a video that speaks to the quandary of finding treatment that helps.

© Debra Valentino, all rights reserved.

A Note to Brain Injury Survivors

as posted on Brain Injury Association of America's Facebook page

as posted on Brain Injury Association of America’s Facebook page

March has been named National Brain Injury Awareness Month, and while there is much to say to grow awareness of this acquired condition, I’ll start first with a link to some common facts herehere, here, and here.

While this blog is dedicated primarily to brain injury awareness, this specific post commemorates the plights of fellow sufferers, and as such is written for those actively recovering from brain injury.

To anyone who has sustained a head injury of any magnitude, and most particularly to the newer sufferer who might have similar questions as I had (when I first sustained my blow in September 2007), I congratulate you!  You have come through the hardest trial of your life, and in many cases beaten the odds to earn the unwanted but proud label “Survivor”–as in, surviving life over death. The road ahead may be long. Here is an abbreviated, albeit detailed list of a some of the things my experience revealed that I hope may be helpful to you as you endure the journey:

Tips for Head Injury Survivors

1.  No two head injuries are the same.

This is something I was grateful to learn early on, but something that remains glaringly true for me to this day.  Your injury depends a lot on how you were hit and where on the head, the speed and force of the impact, and specifically the kind of shape you were in at the time, including your age and even your occupation.  It also depends somewhat on the lifestyle you led leading up to the blow, such as whether you smoked cigarettes or marijuana.  In fact, it could be said that the possibility of head injury is the biggest motivation for healthy living, just ahead of lung cancer and alcoholism.  Of course, some people who are considered exceptionally healthy at the time of their injury are still at risk of the effects being fatal.

In my case, I was a non-smoker, athletic and healthy, but also very active intellectually–an avid reader with advanced academic degrees.  In time, I was able to return to teaching and continue to enjoy an active life cognitively, but I have never managed to do the same physically…to get so much accomplished in a day, to golf 18 holes in one day, or sail a boat, or even hike much or for long, all of which I enjoyed regularly before my injury. For me, the effects have been primarily physical and most notable in reduced strength, energy and agility. For a more gifted athlete, the body might return faster than other cognitive abilities return.  It’s difficult to generalize or predict, but I do suspect that all the reading I did in the years prior somehow helped restore me cognitively. While I also recovered lost speech and some of the lost hearing, others may experience longer lasting and more severe deficits in these areas.  Again, the results of your condition are dependent on many factors, and some of these get eclipsed.  The more you pay attention to your symptoms, the better you can help doctors determine a course of treatment.

2.  You may have suffered additional injuries.

Although I took a direct hit to the forehead and face, most of my treatment focused on recovery from brain injury.  Not much attention was given to my vision, nose, teeth and jaw, though several months later these proved also to be adversely affected, as well as my hearing, neck and spine.  Because of the brain injury, my balance was poor for a good long time, and this led to additional injuries from falls.  In fact, I am still accident prone–bumping into door knobs and tripping over chairs–I am able to wipe out getting out of bed; it’s almost like my new sport!  I have gotten so much better though, and my recovery continues.  I am lucky to be able to walk without assistance, though significantly slower than before my injury.  Many people are not as lucky in this area, and they require the aid of a walker or even a wheelchair.

What is important to note is that if you are aware of a discomfort that gets minimized because your brain injury takes precedence, keep reporting it to your physician.  Once additional areas are diagnosed, you can obtain the necessary treatments to get you on a fuller road to recovery.  My experience has been that the more pain and suffering you can eliminate, the faster your brain will actually heal.  You don’t need to be expending a lot of energy overcoming small discomforts, because these detract from the big energy your brain needs to repair itself.  The same, of course, can be said for stress.  The more stress you can eliminate, the more energy your brain gets to use for the ongoing hard job of healing itself.

3.  The length of recovery is unknown.  

When I asked doctors how long I might expect to experience the effects of concussion, I was told 2 weeks–30 days–then 45–then 60–then 90 days–then 3 months–then 6–then 18 months.  When all of these dates came and passed and I had missed every deadline, I was diagnosed with post-concussive syndrome that continued to last even beyond that expectation. The length of disability is probably directly connected to the severity of the injury coupled with one’s age and general condition of overall health.  When they diagnosed me, I suspect that doctors were going with baseline numbers that were outdated or non-specific.  My age of 50 years at onset of injury as well as the intensity of the blow I sustained (which they apparently dismissed or underestimated) seem to me the possible reasons why doctors’ initial predictions failed.

Also, I do not believe there was (or is) a test for the amount of shearing, bleeding and swelling that takes place–or if there was one, I was not given it or its results.  I did have CAT scans, but never received thorough results of their findings.  Generally speaking, aside from cognitive testing (which is very in depth), it feels like no one wants to tell you anything–or that they themselves don’t really know.  They do a lot of listening, but they don’t generally do a lot of informing.  As a lifelong student and conscientious steward of my own well being, this was a huge frustration to me.  I always wanted to know the names for things and the reasons, but doctors sometimes misread my pre-morbid curiosity as evidence of cognitive healing, when in fact I wasn’t yet able to walk ten feet without tripping or falling, had chronic ringing in my ears, and was still experiencing seizures daily.

Without question, better diagnostic procedures are necessary in order to determine stronger estimates and treatment plans.  At any rate, recovery takes as long as it takes, and sometimes is never fully attained. This is a hard reality, but it doesn’t mean improvement ends. Improvement continues.  Your brain is the most incredible machine ever constructed–and if random injuries can happen through no fault of your own, then so can miracles!

4.  Your life has changed, but you look the same.  Except that you don’t really look the same.

Brain injury is considered one of those invisible illnesses–you can’t see it, so people don’t acknowledge it. You don’t typically get casseroles or pink ribbons or called anyone’s hero–there’s no chemotherapy to take, no race that can be run.  Mostly, people just like to think that you are nuts or stupid or worse…that’s one of the hardest parts, but pretty much a given, because brain injury is full of stigma.  People judge brain injury survivors in ways they never would think to judge other survivors of serious illnesses.  You realize early on how narrow-minded many people are, and you’re just glad that even as they’re calling you “strange,” your own mind is expanding–even though you’re the one with the head injury.

Only certain people will tell you that they cannot tell that you have sustained a brain injury.  Others will be shocked at the changes, which are sometimes subtle but not exclusive to behavior (contrary to popular preconceptions).  You may, as I did, age significantly.  As one person exclaimed in horror to me: “What happened to you?  YOU LOOK LIKE YOUR GRANDMOTHER!”

It’s not a lot of fun.

Your eyes, your face, your countenance–all of that changes significantly with a brain injury.  Add this to any physical scars or wounds you may suffer.  Then add or subtract your weight in any number of pounds. If you need medication, you will likely gain weight–or, at least I did.  If you suffer severe fatigue, as I do, your muscles will atrophy, and everything will drop about a half a foot lower.  This change in appearance is harder on you than on anyone else.  When you look in the mirror, you will see a new person–your new self–and every time you see this new person it triggers a grief for that healthier pre-injury state, for that lost life.

You have to be tough, and you have to be vigilant about recovering and/or rebuilding your self-esteem…but no worries, because surviving a head injury teaches you for once and for all how entirely bad ass you really are.

5.  All your relationships change; you will become the CEO of your own self.

It’s been said that by nature, people don’t like change.  People especially don’t like the change that head injuries bring (whether real or imagined by those who knew you once).  They especially don’t like what they can’t understand.  Of course, there is a lot of denial–a lot of people wishing you would just shut up and not refer to this traumatic event.  After all, if they didn’t see it, they may question whether it really happened. They don’t want you living in a past they don’t realize is truly your present.  Such reactions are another subject all their own, but don’t feel too aghast when you discover this challenge exists.

There is a lot of negativity connected to brain injury, so you need to be the eternal optimist and CEO of your own self.  You alone know what your path has been.

Just know that when a brain-injured individual exhibits the standard changes in personality or behavior associated with the trauma, it compromises relationships…and when they DON’T exhibit such behaviors, people will imagine or project them onto the brain-injured individual.  This is truly a damned-if-you-do, damned-if-you-don’t condition, in that most people do not credit your victories, but exaggerate your deficits.  This may not be true for child survivors of head injury, but it is generally the case for adult survivors.

People will try to inhibit your growth in all sorts of offensive ways.  You will grow a thick skin.  People will also think you can’t discern their rejection or their laughter even when it is right in front of you or right behind your back–or, they’ll simply stop caring that you can.  They don’t know that there are subtleties; that you recognize when they are making fun of or mocking you, and that you will remember these moments–or again, they won’t care.  You become a sort of non-entity to them.  Remember, too, that this is typically not a sympathy-inducing condition.  It’s all unfair, but it is the way it is, and you can’t let yourself be taken down farther by any of this.

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Many people will enjoy your new (though usually temporary) lowered status.  It gives them power and prominence.  It’s okay–it’s their un-evolved thinking, not yours.  Sometimes, the ignorance can be so profound that it can seem that people practically equate brain injuries with decapitations–as if your whole head fell off.  You have to learn to shake off their primitive inferences.  Survivors of brain injury have a long road ahead educating others.  That is okay, because we are actually more patient than most of the people misjudging us.

All of these negatives can actually be to your advantage.  They keep you constantly adjusting, and they certainly keep your brain firing.

While your communication skills might be encumbered, you know that you still perceive a great deal. Some, if not most of your perceptions are accurate. Don’t dismiss your thoughts because others do. Don’t undermine your recovery because others don’t care about it. Don’t fear you cannot improve because others tell you that you can’t, or treat you as if you won’t. Putting you down makes those sorts of people feel big, superior. It enables them to dismiss what they don’t know how to address. Or maybe they just feel helpless. If they care, you will know it.

6.  Solitude is not a bad thing; embrace it.

After brain injury, you have to and will become your own best friend.  You will spend a lot of time home and in bed, unable to socialize–and this will make you fall out of favor with some people–and that’s okay. It’s all okay.  The rest is necessary, and it will restore you.

The greatest gift you will receive from your brain injury is learning to live by yourself–alone in your own perseverance.  Notice how your mind still serves you. Do not focus on what you cannot do, but rather focus on what you have re-learned and on what you are doing in this very moment.  Perhaps your wounds have healed.  Perhaps you are seizure-free.  Perhaps you have an awesome physical or speech or occupational therapist.  Even with your disabilities, you can still think, still imagine, still invent, still meditate, still pray–and if you are really lucky, maybe you can even remember to look at your planner to see where you are supposed to be and when…and maybe you will even show up on time.

One thing for certain, you don’t need anyone who doesn’t give you the respect you are due.  You have survived a life-threatening blow to the head, and you have so much still left ahead (no pun intended). Feel sorry for those who do not have a shred of the empathy you have developed.  Be proud to stand on your own and say, “I lost the one organ that controls every single thing including the breath in my body, and I am here to tell the story”…and then, tell it.

Never be ashamed to admit you have suffered a closed head injury.  It is nothing to be ashamed of, but in fact an accomplishment of the highest order.  Remember those who were not fortunate enough to survive. Endure for them.  Endure for all the millions yet to experience this harrowing affliction.

That is how you celebrate Brain Injury Awareness Month.

That is how you celebrate yourself.

I am amazed by your stories.  I am amazed by you.

Thank you for celebrating with me.

Here is some of the best news we have heard lately.

Here is a video worth watching, if you are interested in understanding TBI.

Namaste.

© Debra Valentino, all rights reserved

Veterans Day 2014: On Re-entering and Honoring my Favorite Veteran

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Re-entering one’s life is difficult whether one has experienced a traumatic event (such as war…or a debilitating head injury, which some veterans have experienced), or something magical (such as a honeymoon…or the women’s retreat I just returned from yesterday).

For one thing, time presses on and never seems to afford enough space to process all one has experienced. After all, you can’t exactly just sit around all day reflecting, whether you would like to or not.  In addition, something is always needing to be done; people may be waiting and perhaps needing or expecting something–like the old you to show up!

Such was certainly the case when I returned from London yesterday afternoon.  I also held the desire of seeming like the same familiar person that left–not floating on some foreign cloud (like I felt)–yet internally desiring to do better on every level.

After reveling in a walk with my dog in surprisingly warm, breezy, unseasonal and unforgettable weather, then dinner out with my family, I felt both jet lagged and exhilarated.  The phenomenal experience of traveling on my own for the first time since my injury seven years ago taught me not only just how far I have come, but also how far I still have to go.

Though I purposely planned the retreat to advance my own continued healing, I also missed my husband every bit as much as I feared I would.  Traveling without him confirmed all the things I knew I had grown dependent on him for, in ways I was previously independent, and I wanted to thank him once again for his steadfast devotion, particularly during the hardest days of my convalescence (months…years!), and even now as I navigate what I hope are the last vestiges of my condition.

Returning to the U.S. on Veterans Day seemed the perfect time to thank my Navy Seabee spouse for his service, both to me over the years and to our country.  I think of my husband at just 19 years old, working midnights and entering his 8 a.m. college chemistry course one ordinary day to find a group of his fellow classmates reading the newspaper, calling out to him, “Hey, when is your birthday?”….And my husband telling them as they looked up his date on the draft lottery.  And then their exclaiming, “EIGHT!  YOU’RE NUMBER 8!”  And I remember the fear and the anxiety the Vietnam draft instilled at the time, 1969. Monday, December 2, 1969, to be exact. My husband will never forget.  And fast forwarding to today when he happily sings in his deep baritone marching voice as he “swabs the deck” (aka., mops the kitchen floor), swishing and swaying enthusiastically, “In the Navy”!  And how he always says he served, “Three years, nine months, and fifteen days”…(and sometimes adds with a smile, “in the world’s second largest nuclear navy” to underscore the irony of the Soviet Union’s threat at the time).

So in deference to all that, on my first morning back, I left the unpacking and reflecting for another day and planned a few outings to honor him.

First, I took him to a nearby bakery, Sweet T’s, that was offering free coffee and pastry to all veterans today.  As it turns out, this is also the same bakery where I recently ordered our granddaughter’s first birthday party cookies, which just so happened to be delicious.  I also wanted to register there for an upcoming workshop.

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So I brought my husband to the bakery, where he received his free veteran’s cup of coffee and he got to pick out one of his favoriteIMG_2073 pastries–a cinnamon roll, which always brings him happy memories of his maternal grandparents, “Mom and Pop.” While he was enjoying the cinnamon roll (with a little help from me), one of his favorite songs came on in the bakery.  It was a magical gift in its entirety, which left him touched and flattered, particularly after serving in an unpopular war, which always made him otherwise feel like “just an appendage.”

IMG_2115After the bakery, I took him to a nearby optometrist to schedule our eye examinations, which are long overdue. It felt good to get something so important accomplished.  Next, we went to the bookstore, and I encouraged him to pick out a book–my thanks, once again, to him on Veterans Day.  He was hesitant to accept the gift since, as new retirees and consequent “minimalists,” instead of purchasing books, we now prefer to patronize the local library.  He finally settled on a new novel by one of his favorite authors, LILA by Marilynne Robinson, which he already began reading this evening, proclaiming aloud, “She’s such a good writer!”

By this time, my husband was feeling so charged that he made an unexpected turn into the home improvement store, where we spent the next hour or so picking out a lavatory, pedestal and faucet for a bathroom we are renovating, as well as a new light fixture for our dining room.  This is an errand I left for London miserable not to have accomplished, so my plan of gratitude paid back in unanticipated spades!  My day of surprises was not over yet, however…

For our last stop, I took my husband to a local park, which houses our veterans memorial.  We spent time there listening to the rush of the fountain waters, reading the names on the memorial bricks, and snapping a few photos with our cell phones.  Then it was time to return home to walk the dog who had waited for us patiently.  By now the sky had darkened, the wind was biting, and the weather had changed to near freezing.

Just to show how really thankful I am, I insisted that I take the dog for his walk, and I left my husband to enjoy some well deserved down time, warming up and reflecting…I hope on what a great guy he truly is.

Thanks to all our veterans for their service to the armed forces.

 

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