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.

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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

4 thoughts on “On Social Isolation and Brain Injury

  1. I’ve been reading through your write31days series. It’s so good! You are doing a fantastic job writing! You are a very brave woman.

  2. This is the best blog you have written! You have correctly explained what it is like to have a Traumatic Brain Injury or Concussion, because I too, experienced a Concussion, 5 years ago. I certainly have similar symptoms as do you, as a result. I also have many other health issues, which I had previously, before the Concussion. I have had similar negative treatment or comments from others; even close relatives & some friends who do not want to understand or have abandoned our relationship. Every symptom fact or situation you gave, you explained it exactly as it has happened to me! You gave brilliant ways/examples for others, to try to understand & how to handle the relationship, with the person who suffers! Thank you for this very powerful, enlightening blog; it is the truth! I couldn’t agree with you more! You are a wonderful example, of how a person should treat another, who does have issues with their health! “Do unto others, as you would have them do unto you” is a quote which is a favorite of mine! If everyone did this; what a happier world of people would live here on earth! I will always try to do the same things you do, in relating to others who have health issues or disabilities of any kind! God bless you Debra!

    • Thank you so much, FR/ce. I was so tired when I wrote this, and haven’t had time to look it over. I’m so glad to know you found it enjoyable to read. I am blessed by your readership!

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