Living with Invisible Illness- Ann Ber

I am sitting here with a letter addressed to some friends we haven’t seen in years.  We are planning on driving out to the coast in the summer and would like to stop in to visit them.  I could email them, but a letter is much more personal I think, and I know how much I enjoy receiving something other than bills in my mail box.

I completed the letter yesterday, sealed it, stamped it, and had it waiting on the edge of the counter to go out the door.  But this morning I opened it again.

Do I tell them?

I am beginning to sense that my friends who know about my illness are tiring of hearing about it, but at the same time I wonder if I am being less than truthful with the friends I haven’t seen in a while if I don’t tell them.  We were very close years ago when the children were growing up.  Then they moved away and, with time our correspondence dwindled to the once a year almost obligatory Christmas card.  We missed so much of each other’s lives.  So many of the day-to-day things that aren’t really worthy of writing in a card.  Eventually we reached the point in which we only wrote about good things.  They were far away and couldn’t rush over with a casserole.   Nor could I.  As a result, I never told them about the time I was hospitalized after an attack to my central nervous system.  And I never told them about the paralysis that went with it.

I was paralyzed from the chest down and had to learn how to walk again.  I went from a wheelchair to a walker to a cane and now I walk independently.  But I have what are referred to as ‘residual’ symptoms that even some of my local friends who know about the attack are unaware of.  They are invisible to others, but they affect my life.

When I was in the hospital I was almost jovial according to one friend.  I was so grateful that I could talk.  I found it was better to focus on what I could do rather than what I couldn’t and like to think that helped me heal quickly.  The doctors were surprised at my progress.  One of them even told me she thought I would never walk again.  But there I was, pumped full of of steroids with a dash of positive attitude leaning on my walker and telling the hospital staff I was going to Boston.

After two months I was sent home.  It was tricky.  I was still using a walker.  It was the end of summer and the weather was good so I made a point of going out and down the street every day.  I said to my husband, ‘we need an inside walker and an outside walker’ because I recognized I was not going to be able to clean the floors.  Every day I walked.  And walked.  Eventually I stopped using the walker indoors.  I did what my physiotherapist referred to as ‘the furniture walk’, moving from one piece of furniture to another.  With time I ventured outside with a cane and slowly made my way down the street, friends and family by my side.  And soon I let go of the cane altogether.  This was an interesting stage as I was acutely aware that if I looked to one side or the other rather than straight ahead, I would lose my balance and fall.  It took awhile, but eventually I was able to walk and talk all at the same time.  Now I walk as though nothing ever happened.  Running is an altogether other matter but I won’t delve into that now.  Let’s just say, I became aware that the muscles used to run are slightly different than those used to walk when I attempted to jay-walk and had to hurry across the street.  So running isn’t mastered yet.  And there are other things that still aren’t right.  My improvement in fact seems to have plateaued and, while I try to remain positive, I find I am making small adjustments to my life to accommodate these changes in my abilities.  Whether or not they do eventually improve still remains to be seen.  The doctors don’t seem to have any answers.

We are using our camper van for this trip because I am afraid to fly in case I need to use the washroom quickly.  Sometimes I am constipated and other times I have to run.  I’ve decided that the name of the product “Depends” should really have a question mark after it – “Depends?” – because well, it just depends.

I’ve seen photos of their place.  They have a beautiful swimming pool.  But the pain that I feel when even a drop of water splashes on my skin anywhere below the chest makes swimming less appealing than it once was.  I managed to get into a lake this past summer and was okay once I was submerged, but it took a very long time to inch my way in.  The water and any light touch on my skin in fact feels like an electrical shock.  I’ve become adept at showers only because I put my head under first and then quickly turn my back and … shshshsaaahhhhhh … okay, I’m in.  I can breathe again.   I haven’t tried getting into a pool yet.

I’m also somewhat anxious about taking the camper van.  I need a replacement part for my internal thermometer, but the doctors don’t seem to have one.  So I need to be careful not to freeze to death or alternatively suffer from heat stroke.  I’ve jokingly said to people, ‘if I ever wanted to commit suicide all I would need to do is lie down in a snow bank.  It would be bliss.’  I also noticed one hot summer day that I had goose bumps on my arms and I was really quite chilly.  Fortunately, my thermometer seems to work on my head, shoulders and arms.  I’m trying to come to understand temperature by focusing on what they are telling me, but it’s tricky.  When it’s minus twenty outside and your body feels nice and toasty you really don’t feel the need for a jacket.

I realize these all sound like insignificant little things.  And I know I am one of the lucky ones. Some people diagnosed with Transverse Myelitis never walk again, some people need a breathing apparatus, and some people go blind.  But these little things along with my other ‘residual’ symptoms effect me on a daily basis.  They have changed the way I live my life.

I sit here looking at this envelope.  This diagnosis is so rare that most people have never heard of it.  Do I tell them?  Or do I just pretend I have become eccentric in my old age?  Maybe they are going through something too.


This is Ann Ber’s first published article.

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