Another piece of the puzzle (Connections III)

Therapy.  The word has so many negative connotations.  When I got out of the hospital my parents had to drag me there.  I hated being in another clinical building.  I loathed cognitive therapy; I detested occupational therapy, and despised speech therapy.  They kept telling me I was injured when I clearly wasn’t, or so my anosognosia*-addled brain told me. 

 

But didn’t I just recommend focusing on therapy and working towards improvement? 

 

Unquestionably.  But though traditional therapy is important, alone it is not always as effective for brain injury survivors.  I believe that using whatever means available to improve.  Therapy does not have to mean traditional therapy or be held in a clinic to work well.  In fact, alternative therapies have been proven to have some extraordinary results. 

 

Every person is unique and so different survivors respond better to different types of therapy.  In deciding what type of therapy to try, it is better to look at the person than the injury.  Likes, dislikes, strengths, weaknesses.  Enroll in types of therapy that best suit the patient.  The more he enjoys what he is doing the more effective it will be.   Music, riding, dance, art, horticulture, and recreation are among seemingly endless list of recognized therapies.

 

But not every therapy is equally effective for all patients.  It is extremely important to find the right fit.  Alternative therapies can help every aspect of life; many types of alternative therapy such as animal assisted therapy, hippotherapy (riding therapy), and recreational therapy encourage social interaction, cultivate empathy, and help rebuild social skills.  Rebuilding these skills and relearning how to connect is the next step on the path.

 

Another wonderful benefit of therapy is that your classes can be a social goldmine.  Not only are the people in these sessions fellow survivors, but they also share similar interests.  The more you have in common with someone the easier it is to talk, start conversations, and bond with them.  Start a conversation and see what happens.  Chances are you will find that you have more in common you’re your classmates than you might have thought.

 

After a session, say hi to one of your fellow patients and see where your conversation takes you.  Having a friend in therapy can motivate and inspire both of you to do your best. 

 

 

*Anosognosia is a fascinating condition in which the brain cannot recognize injury or change.  It occurs in over half of right hemisphere stroke victims and many brain injury survivors and can cause patients to be resistant to therapy.

If You Only Listened

I knew it was happening.  All the warning signs were there, but did I listen?  Of course I didn’t. 

 

I said that one way of getting out of the vicious cycle of poor sleep and stressing yourself out too much was taking a break.  Not taking it easy, but a real honest to goodness rejuvenate, recharge and replenish rest for your body.  This is completely true.  Unfortunately if you don’t catch it in time your body will make you.

I mentioned that I’ve been under stress, not sleeping well, and that sort of thing.  When I started to feel the first hints Tuesday – wearing out more quickly than usual, an errant tickle in the back of my throat, and the like – I just figured I could take it a little easier and it would go away.  I went to bed a little earlier than normal and hoped that would do the trick.

Wednesday I woke up in a good mood and had all but forgotten the previous night’s warning signs.  But over the course of the day things started to go downhill.  Everything was getting under my skin.  That afternoon, J and I were discussing some minor point.  It shouldn’t have mattered, but somehow, this what shouldn’t have bothered me seemed awful.  I took a reactionary stance – I didn’t want to be around anybody who didn’t have my opinion.  

Taken aback by such inflexible, rigid thinking, coming from a normally open minded girl, J made a comment on how judgmental I was acting.  After a few minutes of explaining that I wasn’t judging.  It was fine if they had their opinion, I merely didn’t want to be around people who didn’t agree with me.  I plead my case, confident that I had a logical and rational argument.  By the time we finished our conversation I was confident that I had proven my point.  Twenty minutes later the full weight of the fatigue hit me.

Stepping back and writing about this episode I see frightening parallels between last week’s exchange and the anosognosia, I experienced immediately after the accident.  Though no longer a total eclipse of my reason, I was still incapable of recognizing that there was anything wrong.

What I should have done was skipped the meeting, taken the next day off and just slept. But no, I had told J I would be at the meeting, so I took hour train ride home, slept for fifteen minutes, and rode the hour back rushing to get to the meeting on time.  I got a nap in there – I was taking it easy – shouldn’t that be enough? 

I took it easy for a few days, but I refused to cancel all of my plans.  By the end of the networking potluck on Sunday I had made connections and lost my voice.  I managed to get home but no further.  My body had utterly given out.  I spent the next two days in bed with a fever, barely able to make it to the kitchen for tea.  Try and take it easy, or try and push through, the results are the same – I get sick if I don't give myself a real break. 

If this always happens, then why haven’t I learned?  Like so many other survivors, I forgot the consequences, thought it would be different this time, and failed to learn from my past mistakes.  I have gotten better.  Now I do take it easy when I feel like I have pushed myself too far, but I still try and limp on at half speed for a while before my body utterly gives out on me.

It is important to listen to what your body tells you.  However, it is equally important to let your loved ones know that survivors don’t always learn from mistakes and can show poor judgment.  Ask your friends and family to give you a little “heads up” when they feel like you are acting a little off, see if you’re feeling tired, or let you know if they feel like you’re taking on too much.  What you don’t see may be obvious to everyone around you and fatigue isn't something you want to mess around with.

Your body will get the rest it needs.  Just try to give it a break before takes one....

My Moth-eaten Memory

Memory deficits - almost everyone with TBI has to deal with them - lot of people who haven't have memory problems!  Writing notes, making lists, repetition - we all have ways of dealing with our moth-eaten memories.  But one of the most consistently frustrating things I struggle with is my extraordinary ability to lose things.  Saying I have spent hundreds on replacing things I have lost, misplaced, or left behind is a gross understatement.  The old adage "you'd forget your head if it wasn't screwed on" fits me too a T.  My most recent example of this, is sadly classic.  

Several weeks ago my ear headphones broke.  Oh they still worked  if you held the cord just so, but the connection was definitely on the fritz.  As I value my hearing, I had been considering getting some new over-ear headphones for a while, and this seemed like the perfect opportunity to get myself a new pair.  I went to Circuit City, and looked at the nice shiny Bosse headphones, I agonized over them.  As I have been spending too much on Christmas presents anyway, at last I decided on a significantly less expensive brand of behind-the-neck headphones that I could wear with hats and would go underneath my hair.  For a week I wore them everywhere - I keep my metro card in my ipod case so it is always with me.   Granted they were more cumbersome than the tiny ear buds, and took some situating in my purse, and hurt to have on too long, but I suppose you have to make some sacrifices for your hearing.  Then, one morning opened my computer bag and they were gone.  I looked everywhere - took everything out of my bag, turned my room upside down and rightside up again, searched the apartment - all to no avail.  Another casualty of the memory holes - thank goodness I didn't get the Bosse headphones!

This can be quite frustrating, but I have come to accept it as a part of myself and try my best to keep everything in order, and be careful not to leave things behind.  As the headphone incident, shows, I am far from perfect, but I was reminded of how far I have come last Saturday.  

I went to see a matinee performance Thais at the Met.  I'd never seen it before and was really looking forward to seeing Renee Flemming sing.   I had been given the ticket as a Christmas present, but my friend who gave it to me was in Paris for the week so I went to the opera by myself.

At the first intermission, the woman next to me, a lovely 78-year-old language tutor from Queens, struck up a conversation with me.  She was a long-time Opera aficionado and the longer we talked, the more I liked her - she loved animals, nature, the arts, and seemed to be an extremely kind person.   When she asked me what I did, I told her that I was looking for an agent and publisher for my book, and felt comfortable sharing my story with her.  She shared that she had a cousin living in Germany who had recently suffered a stroke, so she had first-hand experience with brain damage.  A moment later the second act started and we were once again lost in the enchanting music, exciting story, and sumptuous costuming and set design.  

We continued our conversation at the second intermission, I cannot recall the particulars, but for some reason I began explaining Anosognosia, a syndrome common in TBI survivors and stroke victims, in which the patient is unaware of their deficits.  For example, if a patient suffering from anogsonosia, whose left arm is paralyzed is asked to move their paralyzed limb they will claim to be moving the motionless arm.  When asked who the inert arm in their lap belongs to the patient may claim it is the interrogator's, and stick to their claim.  If  asked why their jewelry is on the inert hand they may claim the interrogator has stolen the jewelry or confabulate any story their brain can manufacture to perpetuate the belief that their hand is not paralyzed.  I continued to explain, that anosognosia is not denial, a psychological condition, but a physiological one - the brain simply cannot recognize anything is wrong.   This can be extremely frustrating for both the patient and those around to deal with.

"Wait - what were you saying about the stealing?," the woman broke in.  

"Oh, that was just an example," I replied, uncomprehendingly.  

But she wanted me to explain this concept more throughly.  My explanation had struck a chord - evidently the woman's cousin had started accusing people of stealing from her.  Some things going missing in assisted living facilities is, unfortunately, to be expected.  However, the frequency of these occurrences did not make sense, and she had begun claiming that her family was stealing from her, which had created rifts in the family - her own son had stopped speaking to her because of one such accusation.

"Could this be because of anogsonosia, do you think?"

I didn't need to think about it long, I had the experience.  I told her that it seemed likely to me. I told her that there are varying degrees of anosognosia.  She may know she had a stroke, but not be capable of recognizing the deficits.  If she misplaces something, the simplest solution for her brain to jump to is that someone has stolen from her.  Add to that the fact that her children have had to sell her house, many of her things, and move her into an assisted living home, and of course she is feeling vulnerable, paranoid, and angry.  But it is important to remember it is not the person's fault and not to punish them for it.  The woman thanked me and looked forward to telling her cousin's son and hopefully bringing the family back together.  

I do hope that I have helped their family out, and can help others who've stepped into my old shoes.    I'm pretty sure I wasn't the easiest person in the world to deal with for quite a while after the accident and it was no picnic for me either.  I'd like to try and make things easier for others going through this stuff - for both sides.