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Moving On

So, the big five year anniversary of the worst September event in my often unavoidably wild-ass history     came to a quiet close     in a peaceful, if not restorative way.                 It was a busy month, filled with more social events attended in less physical pain and fatigue than I had experienced since the incident.  Yes, less pain and fatigue; not none, most unfortunately.  Both still plague me daily, but as I move toward year six of this godforsaken condition, I’m driving past the lows, rusted and rickety, low on air but not out of gas, yet.  (Okay, so that illustrates how to overwork a metaphor.  Still.)

As exciting as my first 5K Color Run was and as amazed as I was by our friends’ luxurious new backyard architecture and landscaping , I have to say that one event in particular helped me more than any other to move past the ridiculously petty personal training debacle.  And wouldn’t I know, it would take poetry.

Yet, exhausted from traveling, the schedule changes, and an extended stay taking care of my parents after my dad tripped on my mom’s oxygen cable, fell, and broke his shoulder, we really had to motivate ourselves to leave the house that first Saturday past the five year marker.  Quite likely, the opportunity to attend a reading at a new art co-op was the only thing that could persuade us.  Two of my former colleagues would be reading that evening, one from her newly published first novel, Three Cubic Feet. Its author, Lania Knight, a recent hire before I retired last spring, had encouraged me to attend.  I appreciated her enterprise, and wanted to support this event.  She and I only enjoyed a happenstance rapport, running into each other at work mostly when we used the ladies restroom…it seemed almost like a sign. I think one day we even mentioned synchronicity, as we spoke briefly about Julia Cameron.  I liked Lania, because I sympathized with the displacement she must be feeling coming to a new environment.  I came to like her even more when we spoke at length about writing at a celebration for another colleague’s first book publication, Letitia Moffitt’s Sidewalk Dancing .  Lania has worked hard to feel at home in east central Illinois, and by organizing this night of music and poetry in Champaign, she brought a strong offer along with her.  Lania started her blog, where she often writes about her dreams, long before I had the guts to leap into my own, stumbler.

When we arrived, Lania had just started reading, so she didn’t see us enter.  The co-op had a modern, Frank Lloyd Wright appeal to it, so we stood upstairs by the angles and tree branch sculptures for the remainder of her reading.  The feeling one gets hearing a friend read her own published words is beyond magical.  You understand the time, the discipline, the commitment, the passion, the talent.  You appreciate the courage.  Lania was reading some dialogue from her book, and listening to her pacing alone made all my troubles melt away.  She hit every cadence, the way only a polished reader and conscientious writer can. She projected and annunciated her voice in a way as not to forsake pitch and meter.  You could tell she was a fast reader slowing her pace for audience comprehension–the lost art of oral interpretation.  I was so pleased in that moment to know to the bone of her success. The fact alone that in Three Cubic Feet, Lania writes in a voice completely foreign to her own, the voice of a homosexual teenage male, and does so persuasively, makes her a queen of the craft.  I tried managing voice once in high school, and very nearly never had the guts to do it again.  My stern, WWII vet English teacher scrawled across the top of my front paper with the only hand he had left, “Don’t ever write in a voice not your own.”

I couldn’t even pull off the voice of a female southern sharecropper — obviously one reason Lania’s published and I’m not.  It’s just not an easy thing for a writer to get right. You have to have an ear. You have to be a confident writer. You have to do your research, as Lania did.  I can’t wait to read Lania’s book, and maybe even write a review of it here on my blog.

Next to read that equinox evening was a new poet for me, John Palen.  While he set up   we took the opportunity to join the larger crowd downstairs, where we were warmly welcomed by other former colleagues, Letitia Moffitt, Melissa Ames, and Roxane Gay.    It was surprising how good it felt to see each one of them, to celebrate enthusiastically the shared recognitions.  Surely, the only thing better than hearing a friend read is gathering together in a room full of other writers to listen together.  It’s like family…like the Ben & Jerry’s of all discourse, uniting us in a linguistic kind of bliss that’s better than ice cream. No matter what our differences, we put all our competitiveness aside, and just bask in the beauty of our shared interest, our attention and perception–our discipline, which is sacred to each of us.

I was so excited, I didn’t think I could pay attention to John Palen.  But he surprised me. We loved his work.  He had one poem about his daughter’s birthday that is one of those *POW* poems you never forget.  That’s the thing about most poetry — plan to be surprised.  Emily Dickinson is famous for having said it best, ““If I read a book and it makes my whole body so cold no fire can warm me, I know that is poetry.  If I feel physically as if the top of my head were taken off, I know that is poetry.” ― Emily DickinsonSelected Letters.  I always enjoyed reciting those lines to students.  They would look at me as if I was one. weird. woman.

Both Lania’s and John’s readings were so pleasantly crisp and engaging, it’s hard to imagine even for me that anything could get better.  But then it was my writing rockstar’s turn, Roxane Gay.  I’m telling you, no writer has excited me as much as she does since Carolyn Forche’.  Now, they are two very different writers.  Roxane’s not even a poet, like Carolyn is; but to be fair, Carolyn’s not hilarious, like Roxane is. Roxane does not have a problem with this, and I would say that neither does Carolyn.  Both women are incredibly gifted writers; they know their place and serve it masterfully–and even better, both have been exceptionally kind to me. Roxane was to read after the break, and knowing Roxane as I do, I sensed that maybe she might be a little tense.  I decided to approach her to see if I might loosen her up a little.  Sure enough, the first thing she said when I sat down beside her was, “I hate reading.”  I am laughing as I type this, because really, the lady is hilarious.  She is also very tender-hearted and endearing, and she realized my offer was genuine.  She could have been standoffish, given the circumstances, but she embraced the comfort I tried to bring, and we had a good chuckle that really did seem to help…and given what I’d been through that week, it helped me, too.  She took the mic with smiles and jest, and was off to do her magic.  She didn’t read one of her many funny pieces on pop culture, or the guy who put his sock feet on her cocktail table.  She read “There Can Be No You Or We” from her novel, AYITI. Tonight was about sexual tension–a Roxane Gay specialty.  You listen to her read her bold writing, and you think, “No wonder she’s a little nervous.”  The issue is not that she is uncomfortable with the pen or keyboard, the issue is that she knows she is going where you typically hide.

The evening concluded with the songwriting and music of Jeff Arrigo.  I had never heard Jeff perform before, but I can tell you now the biggest mistake we made was not picking up a copy of his CD, Gideon.  Rich thought I got it and I thought he did, and when we realized neither had, we both sighed in collective disappointment. We’re planning on seeing him again, for sure. Such vocal power, range, versatility had me thinking Bob Dylan, Harry Chapin, Van Morrison, and to my deepest delight, “John Prine, Jr.”  I really can pay no higher praise than to say that Jeff’s performance in some way reminded me of one of my most favorite performers, the great American troubadour, my sir and musical muse, John Prine. Since Jeff and Lania are married, I kept beaming at the thought of having two such gifted and hard working people in town. I don’t know what I would do without the kinds of gifts they bring. I would never want to live a life without art, and sometimes the only thing that gets me through this illness is dragging myself out of bed to reaffirm life with the likes of artists like these.

Click the link below Jeff’s photo to see him performing.

 

© Debra A. Valentino, all rights reserved.

 

How Did We Get Here, Anyway?

5th Anniversary — Part 3

The fifth anniversary of my acquired traumatic brain injury was an important milestone for me because so many times in the past five years I found myself alarmingly close to death. I had for a time lost the ability to read and speak, but mostly I suffered tremendous chronic pain, fatigue, and respiratory distress.  With the blow came a severe whiplash that resulted in cervical and spinal injuries that made normal living impossible.  The total effects were wide ranging and long lasting, yet I am so much better than I was.  On this anniversary, I hoped to finally see changes that would persuade me that the worst was truly behind me, and that I had a chance at a full and final recovery.

Despite the mounting fatigue as the week progressed, everything was going un-characteristically well.  Particularly considering that regulating my emotions had been one of my biggest challenges, especially mid recovery. Although I had a terribly upsetting encounter just Wednesday evening with my daughter, I made it to the gym the next morning in time to train.  I forced myself to show up, partly to prove to myself that pain and emotions do not rule my life.

My trainer usually arrives after I do, but on this morning she was already on the gym floor.  She had recently acquired a new client, and had trained her just the hour before, as was anticipated from our scheduling.  Despite being tired and upset, I was eager to get started, because we had a busy day ahead of us, with travel that evening and then more travel hundreds of miles in the opposite direction the next day—and my trainer was also aware of this from our scheduling.  We had a backyard party to attend Friday night with friends, and then on Saturday, the actual five year anniversary date, September 15, we were due at my parents’, because my father had fallen that week and dislocated his right shoulder.

As we entered, my trainer saw us and smiled, but did not make eye contact.  She was engaged in speaking to another member who did not fit the description of the woman she said she would be training. Yes, she told me all about the woman.  She did things like this, that seemed rather unprofessional, but I was busy doing my reps, so I let her talk. I wasn’t too surprised to see her chatting, even though she wasn’t set up for my session, when she had always been before.  I got on the treadmill next to my husband to warm up.  I started my settings with the incline set to 2.0 as she had instructed, and began walking.  I was eager to talk to my trainer, who had signed herself up to join us in a 5K and was confident she could get me running a 5K within the next five or six weeks.  I wasn’t ready, but was hoping she could help me jog a slow mile that day, a goal partly initiated by the upcoming anniversary.  I needed hardcore evidence that I was indeed on my way, and this would surely convince me.

It was unusual that my trainer did not come over to us on the treadmills.  Even though it was now time for my session to begin, she continued talking to the other member.  I looked at the heart-rate monitor that she had usually set for me, and as I walked, pressed buttons until I figured out how to start the stopwatch.  As I increased my speed gradually, I started to loosen up.  I was even beginning to feel a little better, distracted from the upset with my dear daughter.  I was proud that I was walking at a 4.0, which my trainer said was a slow jog, especially following the fatigue from the steep bike hill.  I couldn’t wait for her to come and check my numbers, and tell her about my goal to try to jog a slow mile that day.  Jogging would be the ultimate, because for many years it looked like I would never run or jump or even golf again.  I knew that if I could “jog” a slow mile, the impossible had become possible.

Ten more minutes passed, and my trainer was still across the gym yakking with the other lady.  I started to feel irritated, and said to my husband, “That’s kinda rude.”  My husband didn’t seemed bothered—but then, he wasn’t the one waiting to train.  Another two minutes, and I started noticeably looking over at her to get her attention.  She saw me, but kept right on talking to the other person. In fact, every time I checked, it was my trainer talking, not the other member.  This didn’t really surprise me, because it was fully in keeping with my trainer’s personality.  Among other things, she was the kind of person who asked how you were feeling, then spent twenty minutes or more telling you about her headache or her allergies or how she insisted her son go to football practice even when he was terrified.  Still, ignoring me seemed unnecessarily offensive.  I said to my husband again, “That is really so rude of her.”  This time, he nodded in agreement.

This all would have rolled right off me, so eager was I to finish this session, but then my trainer did something really offensive and a little out of character.  I say “a little” because she was typically one to enjoy her power.  She also loved an audience.  In fact, there was no mirror in the gym that she could keep from looking in…at herself, or to see who was watching her.  She flirted, and would always yell at me like a drill sergeant when weight lifter-guys were near, smiling and winking.  This didn’t bother me.  It actually made me glad I was “old” and happily married.  Whatever.  I just wanted to walk at my old pace, and I still had a long way to go.

The thing that really got me was that from across the gym, she yanked her outstretched thumb like a hitchhiker, motioning with it and a crook of her head to have me come over to her, near the mirrors.  I hit “Stop” on my treadmill, and walked over to her.  She threw down the Bosu ball, in a rather twisted act of seeming aggression.  I looked up, puzzled, to see her face beaming.  “That was kind of rude,” I said.  Still smiling, she said, “What?  That lady wanted to Ta-ALK!”  “Yes, I noticed,” I said both seriously and generously, going along with the blame she was placing.  “But, still, you could have told her I was waiting.”

“She KNEW you were waiting.  I told her!  What was I supposed to do?”

This conversation continued with my saying that it would look more professional and actually make her look better if she excused herself because she had a session.

My trainer was dramatic.  She said, “But the lady needed help.  She had questions.  I needed to help her, just like I help you.  She was asking me about her knee!”

“Well,” I said, “Then why doesn’t she pay for a private session like I’m doing?  I wouldn’t delay or interrupt her paid session, or anyone else’s.  But, really, it was up to you to excuse yourself.”

My trainer seemed shocked that I could not be humored.  She started arguing with me about time, pointing to clocks and insisting she was a mere ten minutes late.

I pointed to my stopwatch and said, “I have 17:58.”  She argued.  I said, “it’s a stopwatch!”  I qualified that I hadn’t even started it until several minutes into my workout.  She kept fussing at me.  I held my ground with generous spirit, I thought.  I did not want to argue, I wanted to begin.  We stood there for five minutes doing this, until I said, “Okay, now it’s 23:58.”  She finally began.

“Okay,” she said, “Get on!”  We had tried this with poor results, and I was shocked that the day had arrived to return to the Bosu balls, but I cooperated.  I lifted one foot and then the other, and immediately lost my balance.  “Try again,” she continued.  I tried, and had slightly better stability. “Now, bend—.”  I fell again.

“I can’t do this,” I said.  “Here,” she said, handing me a pole.  “Wait,” I said. “I can’t work like this.  I’m upset.  You’re being harsh.  I feel too bad.” She started fussing at me.  “This isn’t good for my health,” I said, “I can’t focus like this.”  She continued arguing, justifying, rationalizing.  “I don’t care about her knee,” I said, “I JUST WANT to get my workout in!”

“You’re NOT going to divorce me over this?!,” she said dramatically.  I found it an odd thing to say, and excessive, but she was giggling.  Then she got serious, “Now, take the pole.”

I took the pole.  She helped me find my balance and had me plié on the balls with the pole to steady me.  I did them while she complained and insisted that I should not be upset and that she was being altruistic in helping this random woman on the floor, delaying my session, that it was no big deal, even though she was fully aware of all my issues AND my schedule for the weekend.  Before I knew it words were flying back and forth, until I felt completely provoked while trying to do my reps, and muttered under my breath, “no wonder you’re divorced!”

“What?” she said.

“Nothing,” I replied, “I shouldn’t have said that.  I didn’t mean it.”

As soon as I said it, I knew it was wrong.  I now felt as if she had drawn me down to her level.

Yet, she was engaged in battle and didn’t seem to hear me.

She barked harshly, “DO YOUR REPS!” and left the mirrors.

I continued doing my reps. When I finished them, I looked around, not knowing where she was.  I started another set.  She didn’t return.  I finally realized how ridiculous it was, to have a personal trainer that I was paying for in a facility I was paying to use, when she was late for and now completely absent from the session.  I stopped in frustration and went over to my husband who was still on the treadmill.

“I can’t workout like this.  I can’t stay here now.  I have to go calm down.”  My husband seemed to understand more than he seemed confused, but he also seemed somewhat puzzled.  I left the gym, only to return to see my trainer approaching my husband to begin his training session.  Her behavior only grew worse throughout the morning, and I had had it.  I left the gym, got my things from the locker room, and was on my way out the door when the counter girl spoke to me.  I felt embarrassed, so I explained that there was just a little mix up, could I perhaps explain briefly to the manager.  “Sure,” she said, and out came the manager, who invited me to step into her office.

On my way in, my trainer ran into me, as if she was lurking to see what was transpiring.  I wanted to be civil, and so I graciously said to her, “I’m about to explain my side of this to the manager, but you are welcome to join us because I won’t be saying anything I wouldn’t say to you directly. You can explain your side.  I don’t want you to worry.”   My trainer instantly accepted my invitation, then joined me in the manager’s office, now sobbing.

I felt pretty frustrated too, but nothing worth sobbing over.  We ended up going on and on and around and around for two full hours. It was difficult not to get distracted by all the sobbing, but we tried our best to stay on task.  The drama never stopped.  Still I thought we were civil and could move forward as adults.  That wasn’t to be.

Despite both the trainer and the manager telling me I was 100% right and that they were both glad I spoke up, and despite my saying what I learned from this is that I better not express any complaint whatsoever…despite their insisting, “No, you should,” that they were glad I did…the long and the short of it is that they decided that they “were not the right fit” for me and my husband…that I would complain “no matter what.”   Consequently, with the manager’s supervisor’s approval, they decided to address this issue by revoking our membership.

How they made this leap in logic is beyond both my husband and me.  When I questioned it, the manager said quite curtly, “No, I know you don’t understand,” in an emphasis and a tone that suggested I am incapable of understanding.  As if she were a bouncer in a bar, and in the business of cancelling memberships, not sustaining them.

I have met this moment before.  It is the moment of deep prejudice against sufferers of head trauma.  It is ignorant and outrageously unfair, and it appears to originate out of an egoistic need for ascendancy.

Clearly, one of the worst and most destructive things a person recovering from severe head trauma can do is engage in petty disagreements with anyone, especially and most particularly if the opposing party is aware of that person’s head injury.  Those are battles a concussed person will never win, even when they should, because no un-injured person will ever respect a concussed person’s point of view.  Uninjured people tend not to respect the head-injured because they don’t understand that maybe, just maybe, they still have wits enough to perceive correctly and accurately, that they actually can still think quite clearly.

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© Debra A. Valentino, all rights reserved.

A Day in the Life: Sleep Study 3

I’m spending the day doing my third sleep study.  That’s right, third.

Let’s just say:

  • My eyes are all but closed as I write this.     
  • I’m not that happy.  😉
  • Yes, I have wires hooked up everywhere except to my teeth.
  • No, I can’t get up and leave the room, lest someone mistakes me for a robot.
  • No, I can’t potty until the technician comes in, unhooks me, and let’s me free from the Polysomnographic Collector System.  Yes, you can imagine.
  • No, I didn’t get hardly any sleep last night.
  • Yes, I had to wear a sleep mask.  With a tube that made it look like I was on a ventilator.
  • Yes, the sleep mask made it impossible to turn or sleep in my usual position, let alone any semblance of what might be considered a comfortable one.
  • Yes, the technician woke me up at 5 a.m. (even after keeping me up all night).
  • Yes, my bladder is not happy, either.  Yes, it is small, and used to emptying when ready, not waiting.  And waiting.  You’ve heard of “Hold your breath,” well this is more like, “Hold your bladder.”
  • No, I don’t know what I’m saying.
  • Yes, the electrodes feel weird, as does all the tape holding various nodes and microphones all over my head, face, and body. 
  • Yes, the globs of goo they use to attach the electrodes feel like massive, sticky spit wads.
  • Let’s just say, Phyllis Diller would surely find me funny.  And scarier-looking than herself.
  • My hair is not happy.
  • I’m snoring.
  • I might rather be dead.  ((Just joking!  A little hyperbole for an aggravating situation.))
  • If I get any more restless, I might start smoking.  Whoopie, more tests in my future!
  • If I get any more aggravated, I could actually short circuit.
  • Did I mention, I’m not happy?
  • I need some exercise!
  • This could never be considered fun — not even to a writer.

My first sleep study was scheduled in Greek Town in downtown Chicago.  They said it was important for me to be comfortable, but I think they did this so my husband and I could enjoy a nice, Greek meal before they tortured me.  The test was scheduled at a nearby hotel.  I walked the distance in heels.  I had lamb for dinner, because lamb is one of my favorites.  Sorry, vegetarians.  It was delicious.  I drank no wine.  I do not drink anymore. Well, maybe an occasional sip, but none to speak of, for sure.

After examining me in my initial visit, the ENT doctor said that I looked to be “at least partially obstructed” in my nasal passages, maybe even more so–he even mentioned a possible problem in my throat.  My throat?  He looked concerned, a bit overwhelmed.  I felt like I could breathe better instantly just with the numbing spray they prep you with. He inserted a scope in my nose and took pictures. He said he needed to do this sleep study to determine “what [I’m] doing when [I] sleep.”  What am I supposed to be doing?

Two thousand dollars later, I found out I have rather restless legs, I turn a lot, I appear (this time more scientifically) to have an obstruction blocking my air intake.  He didn’t know if it is cartilage, scar tissue, a deviated septum, or something else I can’t recall the name of.  But I already knew all this!  I’d been saying I couldn’t breathe all these past five years, since my early days of recovery.  I guess they wanted the brain injury to heal before they worried about the respiratory concern.  It is amazing how much our brains control. Like, EVERYTHING.

The one thing I did not know before the first sleep study was what the technician told me at the break of day after the first examination, in a rather alarming tone, “Your breathing is stopping every three minutes.  Completely stopping.”  I think he even said, “That’s not good.”

I remember his demeanor changed big time, from the start of the procedure to the finish. When he hooked me up to the electronic machine, the e-link and amplifier, he approached each step of  the procedure as if it were routine (being cautious not to touch my belly or a nipple, thank you very much).  He basically offered no interaction and made very little or no eye contact, except with his conductor goo, tape and wires.  When he returned to end the session, which he monitored from the hotel room across the hallway, he was very informative.  He said I would definitely need to return for a second sleep study (which he said the night before the test would determine–that if it turned out fine, I wouldn’t have to return).  Of course, I wasn’t fine.  He even seemed rather notably both surprised and alarmed.  He said something about my air intake being a 70-something and needing to be more like a 90-plus, that I was way too young to be breathing as I was, that I was breathing like a person much older than myself.  I was happy to be characterized as young by someone.  He used enough emphasis to make me see the point, without telling me the true concern.

Worst of all, he said I am not getting enough oxygen to my brain as I sleep…that sleeping itself was shutting down my intake, and that over time that could be a major health impairment.  He said in response to my panic that left untreated, I would face an increased risk of developing Alzheimer’s or dementia, or worse.  Oh, great.  Not fair.  It made me so angry at that damn door that hit me.  I used to be the picture of perfect health.  Now I was at risk of developing early onset Alzheimer’s, or worse!

I guess you’ve got to love me while you can, people.  While I’m still here.  What’s left of me, anyway.

Of course, this made me anxious, but I truly appreciated his candor.  No one else ever tells me anything.  It’s so annoying.  I was glad to learn something, and to receive some sort of report, even if it was bad news.  Plus, I FELT obstructed, like I wasn’t able to draw a full breath, starved for air and energy.  I was glad to have my feeling validated.

The second sleep study was set up immediately when I called the doctor in a bit of a panic the following week, feeling as if I really could not breathe.  I wanted immediate care.  I was ready to go to the Emergency Room to have them open up the damn airway, whatever it took.  He said they Emergency Room couldn’t or wouldn’t do anything, but he concurred that my situation was serious, but said he needed to get more data before proceeding.  I was like, “Just take out the damned obstruction, for crying out loud!”  I’m thinking, “How can they tell you they know it is compromising your health–indeed, your very anatomy AND your oxygen intake to your BRAIN, for crying out loud–but then want to lolly gag around with all these expensive tests?!

Of course, as much as they are in business to help people, doctors are in business to make money.  We all know that.  Or, should.  And medical testing brings in a lot of money.  I started to get the feeling that the whole sleep science deal is an elaborate money making operation.  Of course there are the insurance companies, who are solely about making money…and that we do all know for sure, sadly.

Nevertheless, I appeared for my second sleep study.  It was re-located from the swank and glamour of downtown Chicago to a run-down, rather dangerous part of town, with all sorts of locked doors and barred windows.  I never would have been able to get into my jammies if my husband hadn’t gone and stayed with me.  Because there were two of us, they gave us the “master suite”–it had the only king size bed.  The room was pretty clinical looking otherwise.  Not like we needed mirrors or rotating disco balls on the ceiling–there were cameras and I was to be hooked up; it wasn’t exactly anyone’s idea of marital bliss.

That second sleep study night the technician wouldn’t say a word.  He wouldn’t answer any of my questions in the morning, and even said the other guy was wrong to tell me anything. I know why they do this (they’re all paranoid about law suits, and doctors like to have power and especially follow-up visits, even if your results come back completely clear, because again–you know, it’s really all about the money).  But really, it is MY brain! I think I should get to know whatever the hell they find and how things look.

They say they don’t want to “suggest” or “scare” the patient.  But their abbreviation and silence are exactly the things that end up leading to all the inference and fear.  Oh, well. Hook me up, and tell me or don’t tell me what you see.

After the second sleep study, the doctor set me up with a CPAP, more elaborately known as continuous positive airway pressure.  It’s a contraption that sends pressurized air through a tube to a mask on your face.  It sort of forces the air through the oral cavity, past any structures that might be in the way; or, at least it tries to.  This was a fun chapter that I endured for several weeks, until my doctor said, “Forget that.  That won’t help you.”  Of course, it takes a village to help someone in my shoes.  He said surgery.  He specified two surgeries.

So, yesterday, I went for my second consultation on those suggested surgeries.  That was interesting, and a bit frightening.  Right away they signed me up for this test.  I forgot what the doctor called it, but then, I haven’t had much sleep.  My understanding is that it is to see how my brain performs in the daytime, when they make me sleep, that is.  It’s a bit complicated.  I thought perhaps it was to see whether my brain could tolerate the anesthesia for surgery, but the surgeon said it is not, that anesthesia is really quite safe, and I should be just fine for the anesthesia they will have to give me to have the surgery. Or, surgeries.

In the meantime, here I sit.  Good thing the bed is comfortable, seemingly clean, firm. The technician just brought me lunch. A chopped salad from everyone’s favorite,  Portillos, and a small lemonade.  I am pleased it is a small.  My husband always buys large because it is a better buy, but I worry about the calories.  The lemonade is too good not to drink it all. The technician’s cute little Phillipino laugh cheers me up.  We have a routine going.  He comes in every two hours, says “Rise and Shine!” in his cheeriest voice, rips open the curtains, disconnects me, loops my head-box over my neck so I can get up once he leaves.

Later he calls, says he’s returning, then comes back in.  He has his own key card to my room.  He has another patient he is monitoring.  When I ask, Ascario tells me he has a degree in electroneurologic diagnostics.  He says he is well paid.  I’m glad to hear it.  I am paying well, and I want him to get his fair share.  He is a nice man, very good at what he does.  He leaves me wired back up, then tucked in, curtains redrawn, where I will remain for as long as it takes him to get the data he needs–about twenty to thirty minutes.  He tracks my sleep.  He knows when I am dreaming.  I am relieved for once that I do not think of sex anymore.  I wonder if he can tell when I am thinking.  I think he can.  Soon after he leaves the room, he calls back to re-calibrate his machine.  In a moment, the phone will ring and it will be Ascario.  He will say, “Okay, I need to calibrate my machine.”

“Close your eyes.”

“Open your eyes.”

“Okay, look up and look down.”

“Good.  Look side to side.”

“Blink your eyes.”

“Grind your teeth.”

“Okay, good.  Sleep well!”

Here’s a popular song that says it best:

 

© Debra A. Valentino, all rights reserved.

Up, and Back Down Again

5th Anniversary — Part 2

As the fifth anniversary of my acquired traumatic brain injury approaches, I am finally well enough to focus primarily on regaining muscle tone and losing the weight I gained while convalescing.  In making physical fitness my priority, I have retained a personal trainer, whom I have been working with for approximately two months, roughly two to three times per week.  On Monday, September 10, I had my first session of the week with her, but by Thursday I had my last.

My first notable stumble of this busy fifth anniversary week came on Tuesday, September 11, while I was attempting to ride my bike up a hill…a rather steep hill that was in the end just beyond my ability.  Physical stamina hasn’t happened yet, but I keep working as arduously and as often as I can.  I have only within the past two months made any kind of real progress.  In that time and in the years prior, I have had to start over toward my goal a hundred thousand times.  We really haven’t gotten much bicycling in this season — too many house appointments, too many doctors’ visits, the standard chronic fatigue.

Just the week before we had found a beautiful new place to ride, closer to our home than the paved bike route we usually drove to some fifty-plus miles away.  A lovely state park, with a little lake and lots of smooth blacktop, but far more rolling hills than we are accustomed to tackling.  Once I hit the proverbial physical wall on this unexpected second hill on our bike ride, the rest of the week began quickly to fall apart  — pretty much in keeping with the kind of turmoil that has plagued me throughout this recovery.

Ever since I was finally able to get out of bed since the accident, this is pretty much the way it goes:  I challenge myself cognitively to work my mind, or more often physically to combat the deplorable shape my body has acquired –> I rapidly fatigue –> I suffer debilitating pain and exhaustion –> I ultimately lose all focus, then resolve, and most particularly, emotional armor.  I end up tumbling like a rag-doll–down down down–until I am nothing. Unable to do anything. Well, basically not anything that requires standing or lifting my head, that is.  I can read, I can type, but I even eat with my head low, supine.

I spent all day Wednesday in bed, trying to recover.  It frustrated me, but this truly is progress.  I was wiped out from Monday’s workout and Tuesday’s bike ride.  Nothing unusual about that for me, even though both were what a healthy person would probably consider light exercise.

My recovery from fatigue currently rests at a mere 1-3 days.  There was a time in these mostly miserable past five years that recovery from fatigue was more like 7-10 days.  In fact, there was a long, long stretch of time where there were no good days at all.  That is, once I recovered to the point where I could even mark “productivity,” where I actually had what I characterized as a “good” day.  I remember reporting to the neurologist, “I had one half day this week.” I meant, I had one half day in seven where I could have a conversation (or what passed as one), watch a tv show (although I rarely cared to or stayed interested), or maybe even speak for a few whole hours (like when I returned to my university teaching job, long before I could realize or assert that I just was in no shape to work).

So, this Wednesday’s being a down day was not at all unusual.  I was tired, and I rested and read all day.  By Wednesday night, however, I found myself being hung up on by my college-age daughter.  In this phone call, she was trying to confirm upcoming holiday plans so she could purchase her plane ticket home.  She wanted to spend them at my parents’ as was once tradition, and I just wanted to stay home.  I didn’t care if she came to see me or stayed with her grandparents, I just knew that I wanted to stay home. I couldn’t in the moment understand why she couldn’t see that I am a person, too, with valid needs of my own.  She was frustrated, and obviously sick of the mom I have become (occasionally flat affect, and all), and not the mom who reared her, whom she needs and misses.  Plus, she is a planner.  Her schedule is so full she needs to be organized to function.  I recently retired, partly because I have lost the ability to follow a schedule, and I need to go by how I’m feeling.  This has gotten me in trouble with several people in the past few years, but it’s the way it is now, and I understand, even if they don’t.

The real problem in my family, however, is that I have changed.  I went from being a very active, very productive person, a person you could always count on, someone who always put everyone and everything else first–to a person who seems self-absorbed and sick all the time, checked out and foreign…someone no one really recognizes or likes, and even further still to a person who seems all of a sudden to now know above all what she herself needs—a person who takes care of herself (knowing she really cannot count on anyone for anything, anyway)–and also to a person who often doesn’t feel well enough to ask for what she needs politely, but instead insists:  “I am staying home.”

Again, words say it:  For the past five years, I have largely retreated.  I have been home a lot.

What the brain injury did, in effect, was to destroy nearly all of my social connections, and steal all the patience and polish and maturity I had earned over my adult years. These changes basically left me with the impulsivity, intolerance, and frustration level of an adolescent.  But somehow logic didn’t leave me, or so it seems at least to me…and so I end up arguing, sometimes seemingly making my point in a kind of calculus. What I mean to say is that I’m just not that easy to get along with.  Sometimes.  Certainly more often than I would like.  More often, surely, than others would like.  I hate this.  It costs me a lot of stress and aggravation.  I don’t like conflict at all.  It isn’t good for me on any level, particularly not physical.  Stress exacerbates pain.

Both pain and stress cost me a great deal of sleep.  Sleep that could be healing.

I didn’t sleep well at all after fighting with my daughter over where to celebrate Thanksgiving.  But I still, somehow, pulled myself out of bed and got to the gym in time for my 10 a.m. training session.  I didn’t want to go and I didn’t want to be there, and I was tired and sore, but I went, and I even arrived ten minutes early.

 

© Debra A. Valentino, all rights reserved.

 

 

 

On Five Years, Post-Disaster

5th Anniversary — Part 1

Saturday, September 15, 2012 marked five years since the day I nearly lost my life.

I remember thinking to myself on that day, September 15, 2007, just after sustaining an incredibly powerful blow to the head and face,

“I must not fall.”

“If I fall, I will never get up.”

“If I fall, I will die right here, and no one will ever know what happened to me.”

These words are painful to write, and so, I will leave the story of that day for *another day* when perhaps they no longer feel so devastating.  The day I long for, the day I work every day so hard for–

*The day I will finally be healed.  Strong again.  Pain and symptom free!*

— That is the day this blog seeks.  This blog and every other effort I’ve made and will make.  This blog, in large measure, is about what we must do to save ourselves.

We all have a journey, some goal we long to reach.  My goal is doing the best I can to regain as much of my own health as I possibly can.  In order to do so, I must press forward.  “Word press,” if you will, can help me, I think.  I hope.  I want to believe.  I am willing to do whatever and as much as it takes, including write.  Including share.  Because to me, nothing replaces good health.  Nothing is worth more.  I must fight. And hard!  Every day.

Just as I did the day this happened to me.

Oh, I have longed for restored health for so long.

I have given up on that day which still eludes me.

I have started over–the long arduous stagger so many times toward that very day alone.

In large part, that is also what this blog is about.  Navigating these past five years of my life with post-concussive syndrome, recovering from traumatic brain injury, a smashed nose, cracked and chipped teeth, all kinds of pain.

Those words themselves put a lump in my throat.

Post-concussive syndrome.

Traumatic Brain Injury.

Chronic pain and fatigue.

Post-traumatic Stress Disorder.

This has not been an easy ride.  In fact, it often seems that it has been the most miserable five years that anyone could ever possibly imagine.  Indeed, there might be worse things, but if there are, I surely wouldn’t want to think of them, let alone write about them.

But the truth is, on that brilliantly sunny September day–before I had ever even heard the term post-concussive syndrome–life as I knew it changed completely.

I am just now–five long, hard years later–able to begin to try to write about what it is like to stumble through those dark, dark depths, and to struggle one’s way back, not even knowing if tomorrow will arrive. Confused, and in chronic pain.  A little frustrated, and often crabby…

Excruciating physical pain.

Pain so great one’s spirit and emotions implode.

Did I say pain?!

There isn’t a quieter or a more raucous place in the human brain or body.  It is a place of the shallowest of breathing and the lowest of pulse rates.  It is like a dry, dark cave, where even bats can’t live.

But that was those days.

The dark, dark depths.

Most days.

For the past four and half years at the least.

This fifth anniversary brings a long-awaited new here and now.  I’m not where I am going, but I sure as hell am not where I have been…and that is cause for great celebration, indeed.

Thank you for celebrating with me by reading these words.

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© Debra Valentino, all rights reserved.

working hard at not working on Labor Day 2012

It’s Labor Day and we just got back from Chicago.  We’ve been house hunting for a home closer to my ailing parents.  My mom has stage IV lung cancer and my dad has congestive heart failure.  They are still a couple of spitfires.  We love visiting with them and helping them out (even keeping them entertained), but they are in their eighties and I am in my fifties, so after the long drive home, we are pretty wiped out.

By “us,” I mean my practically perfect husband, Rich and me.  Rich is already in his early 60s, even older than I am (!), so we are just chillaxin today, thank goodness! Neverthe-less, we have been working for hours now to get this “user-friendly” blog software movin and shakin.  The hardest part of anything always seems to be how to get started.  In this case, which server host and what blog software, if any.  We weren’t even sure exactly what we needed, and we’re still not sure we’re doing this correctly.  Rich is a great project assistant.  We work well together, and he’s good at things I’m not always good at, and vice versa.  Even with his help, though, I have to say that in comparison, setting up a blog can make the act of writing seem pretty damn easy.

I have been an avid blog reader for a few years now.  Mainly I’m just a reader, but when I get online and links start popping up, I inevitably end up reading some random post by just about anyone on just about any topic.  I have a lot of interests, but above all, I find human beings and their insights worthy of pause and consideration. I like to think a lot. This was one of my strengths as a teacher (at least it felt that way), because whenever I called on a student who said something unexpected or surprising, it would often bowl me over.  I would stand there stunned, saying, “that’s an interesting point, student whoever…,” and I would walk around thinking about what they said for days.  Sometimes the entire semester.  That is one of the few things I think I will miss about teaching.

I also have trouble posting status updates on Facebook, because every sentence begs a back story.  To abbreviate them, I end up typing things such as, “This was one weird week.”  The ambiguity of the word “weird” has left my audience wondering, and maybe even worrying what might have taken place.  I wouldn’t let my own students get by with that sort of generalization.  I knew it was probably time for me to start a blog when so many of my updates wanted to be essays.

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© Debra A. Valentino, all rights reserved.