tongue

Appendix: Taking Stock – My Disabilities

Posted on

Appendix

Taking Stock – My Disabilities

In June of 1976 the doctors at Princess Margaret Hospital were satisfied my tumour had been successfully controlled. Tumours have a habit of growing back or showing up in different parts of the body. Mine never did. I was treated for my tumour and that was that. The condition my body was left in after I recovered from my radiation therapy reaction hasn’t changed in 40 years. Except, of course, that I am 40 years older and all the effects of aging that happen normally to everyone else are happening to me – those little aches and pains, grey hair and bifocals.

It never occurred to me until writing this memoir that the doctors would only say they controlled my brain tumour and not that they killed my tumour as I do. I guess they could never be 100% certain that they eradicated it but only hopeful that they had. After 40 tumour-free years I can safely proclaim my brain tumour dead and gone.

As I recovered from my radiation therapy reaction everything I did was by conscious thought – every hand movement and every step. I remembered doing all of these things because I had to consciously think about them. When I started doing things automatically again I’d be checking myself to see if I had done it – ordinary things like pick up a mug and put it in the cupboard, turn a light off or push a door closed behind me.

After I recovered from my radiation therapy reaction in 1974 I had an acquired brain injury which left my body in the following condition:

  • Facial paralysis
  • 85% ability to swallow
  • Speech impediment
  • Ataxia – dexterity, balance
  • Muscle wasting – Upper calves, Fronts of thighs, Triceps and Lower back
  • Progressive hearing loss
  • Expanding my chest
  • Facial paralysis

My brain tumour damaged the cranial nerve controlling my facial muscles. The radiation therapy together with the reaction killed the nerve. Even though I lost all movement in my face I kept the feeling. I will never make any facial expressions like raise my eyebrows, frown, squint or have a big, wide smile.

I lost the ability to press my lips together to close my mouth while I eat and drink. Eating involves cutting up food, putting it in my mouth and pinching my lips together while I chew and swallow. If I don’t the food falls out as I chew. Pinching my lips together only approximated closing my mouth. There are times when bits of what I’m chewing fall out. I try to be diligent to prevent this from happening but it does now and again. I also make more eating noises when chewing and swallowing. I try my best but some of it just can’t be helped. Have you ever tried swallowing with your mouth open? It’s hard but you can.

I don’t have a wall of muscle in each side of my face to keep what I’m chewing in the centre of my mouth. As a consequence food collects in my cheeks. Along with pinching my lips together, I’m constantly pushing the sides of my face with my fingers to get the food out of my cheeks back into the centre so I can chew and swallow it.

Drinking from a cup is a similar procedure. I partially pinch my lips together with my left hand to approximate the form I need to drink. Then I put the cup to my lower lip supported by my thumb, pour some of whatever I’m drinking into my mouth and pinch my lips together before I take the cup away. If I don’t pinch my mouth closed right away the liquid runs down my chin.

Nobody told me, “Brian now that you have facial paralysis this is how you eat and drink.” I doubt anybody could have. It’s my solution to the problem. I hope sharing my method can help someone deal with a similar situation. After 40 years of eating and drinking this way it’s automatic. I would rather not have to do this but if I want to be as neat as I can be, and I do, this is life. My method of eating and drinking makes many people visibly uncomfortable. Their discomfort makes me uncomfortable.

Facial paralysis does not allow me to close my eyelids so that they meet. This gap means I constantly have dry eyes and need to put drops in them daily. I can open and close my upper eyelids but they are weak. Because I don’t have cheek muscles pushing my lower eyelids up I can’t scrunch my eyes shut. I have to cover my eyes when washing my hair or I get shampoo in the gap between my eyelids.

  • 85% ability to swallow

During 1973 and into 1974 I had to chew food well and wash it down my throat more than swallow it. By the end of 1974, 85% of my ability to swallow returned. Things I can’t chew well such as raw vegetables (carrots, broccoli and cauliflower) or dry rice get stuck in my throat. I have to wash them down with more than a sip of whatever I’m drinking. You never see me chewing on carrot sticks at a party. Celery sticks are okay. They’re a bit stringy but they go down well.

  • Speech impediment

After my radiation therapy reaction recovery I was left with a tongue that was a half step slower than average. I have to pronounce all sounds of speech with my tongue. This impedes my speech. Not being able to alternate between lips and tongue to pronounce words further slows my speech. Over time I learned to mimic the bilabial “b,” “m” and “p” sounds closely with my tongue. The fact that I don’t move my lips to pronounce these letters confuses people at least at first. This adds to my communication problem.

Ataxia: The impairment or inability to co-ordinate voluntary muscle movements. It is symptomatic of some central nervous system disorders or injuries.

Ataxia – dexterity

I always knew my dexterity was slower than most people’s because of the damage caused by my brain tumour and treatment. Not until I was 52 did I get it tested. It’s now official. According to the General Aptitude Test Battery results I am half speed. That is I flip ten pegs to the average person’s twenty in the allotted time. Although my hands are slower I can manipulate most objects fairly well. This affects my hand writing which makes it less legible. I found one of my Grade 5 school workbooks. I think I had better hand writing back then. My top typing speed is 20 words a minute. Not bad. I keep practicing but my fingers don’t seem to want to move any faster.

As I said every hand movement I made after my recovery required a conscious thought to control it. I could reach for and pick up a cup as I had always done but it had become clumsy. So I closely watched the cup as I concentrated on my task. I consciously thought out the hand movements involved in reaching for the cup, grasping hold of it and picking it up. Then I slowly reached for the cup. I did this for every object I used. After a year of practice I became fairly proficient at manipulating most objects.

Ataxia -balance

The increasing loss of balance was one of the symptoms which lead to the diagnosis of my brain tumour. My balance was poor when I went to Toronto in 1972. It got worse during my radiation therapy reaction in 1973.

Over time I adapted to it. I observed after learning how to walk that one important aspect of maintaining my balance is where I placed my feet when walking or turning on the spot. When I lost the ability to walk I forgot where to place my feet so I wouldn’t lose my balance. Paying close attention I learned proper foot placement. Because of the ataxia I’m slower placing my feet in the correct position to prevent losing my balance. Improving the muscle tone in my legs and lower back helped improve my balance as well.

My sense of balance is poor and will always be. The neurological damage that caused it is permanent. I’m always watching where and how I can best walk over different terrains. I’m frustrated by my mobility problem at times but I only have to think back to my walker and wheelchair to snap me out of it.

One fear I have is being pulled over by the police and asked to walk a straight line – heel to toe. I can’t do it regardless of my state of sobriety. The same goes for blowing on a breathalyzer straw. I’ve never been asked to do either and hope I never am.

Muscle wasting – Upper calves

The muscle wasting in my upper calves was one of the symptoms of my brain tumour noted by the doctors in 1972. As this muscle wasting developed I found it harder to hop as in Jumping Jacks.

  • Fronts of thighs

The wasting of these muscle groups occurred during my radiation therapy reaction. When I was walking again, and felt confident enough to run (trot), I found when I got up to a certain speed I’d trip and fall over. “What did I trip on?” I’d ask myself as I looked around. I realized that the thigh muscles weren’t strong enough to lift my knee fast enough to take the next stride. This is still the case. Weakness of the thigh muscles contributes to my balance problem.

  • Triceps

I first noticed how weak my triceps were after my radiation therapy reaction recovery when I was next door shooting hoops with a friend. I’d take the basketball in my hands. When I threw it up to the hoop by pushing it I could only throw it three quarters of the way.

  • Lower back

It was during my radiation therapy reaction recovery when I first found that my lower back muscles were weak. I pulled a lower back muscle lifting something fairly light. I could only be down on my hands and knees while gardening for 20 minutes. After shoveling snow my lower back would hurt and seize up and I had to lie down to rest it. Not until I was 50 years old did I think of strengthening my abs to do some of the work for my lower back. It really helped.

Light weight training and daily exercise helped strengthen all of my muscles but the muscle groups that had wasting are weak. I didn’t get stretch marks until my radiation therapy reaction and being on the decadron medication. The only places I have stretch marks are over the muscle groups where the wasting occurred.

Progressive hearing loss

The condition my body was left in after my radiation therapy reaction has pretty much stayed the same except for my hearing. When I was twelve I remember not understanding some of the words spoken to me even though I had no trouble hearing them. Thinking back it was a symptom caused by my brain tumour that was considered to be me not paying attention. My tumour was starting to press on the auditory (8th cranial) nerve. The radiation therapy caused partial destruction of the myelin sheath around the auditory cranial nerve which further restricted its action. I’ve had progressive hearing loss ever since. My hearing in both ears has degraded to the point where I’m dependent on hearing aids to function.

Expanding my chest

By the time I was diagnosed and treated for my tumour I had lost the ability to expand my chest. During 1974 it gradually returned. It’s the only body function I lost or was losing to my tumour that I fully regained.

In 1973 at one point I had lost most of my dexterity and co-ordination so that I could barely feed myself, swallow, or speak. I get tense remembering my frustration and heartbreak as I gradually lost my independence. I regained these functions in time, albeit not fully, but I am aware of what might have been. Sometimes I ask myself, “How close did I come to staying that way?” With the help of family and friends and a lot of determination I was able to cope through the ordeal of my brain tumour and recovery. I put my walker aside and I got out of my wheelchair. My sense of balance is as poor now as it was then and always will be. The muscle wasting in parts of my legs, arms and lower back has left those muscles weak. I will always need to use a handrail to steady myself going up and down stairs. At times I feel that I never left that wheelchair far behind. Still I got out of it and I never want to have to sit in one again.

As I take stock of my life I ask myself, “If this didn’t happen to me what would life have been like?” Would I have gone through my teen years like most teenagers? Maybe I would have been married in my 20s and soon be celebrating my 25th wedding anniversary. I might have had a family and possibly have grandchildren by now. Or maybe I’d have remained a bachelor. I may be living half way round the world and never been a chemist or entrepreneur. The possibilities are endless. Things may have been different for me but the way everything has turned out just might be the way they should be.

Advertisements

Getting Back Out There.

Posted on Updated on

In January of 1975, when I was 15, I was back at Sick Kid’s to have my eyes straightened once more by the same surgeon who had operated on me when I was eight. This was minor compared to what I had just been through. I knew the surgeon, I knew the drill and I knew the hospital. I spent two nights in the hospital, one night in a downtown Toronto hotel and then home to Thunder Bay. Two weeks after surgery the stitches were out and I got back to my daily routine. With all the trials of surviving my brain tumour behind me I was confident my life could move forward.

Dad and I began building projects again. Dad introduced me to electronics. I soldered resistors, capacitors and transistors together by following schematic circuit diagrams with my trusty magnifying glass. Dad helped me by guiding my hand as I held the soldering iron until I could do it on my own. My most ambitious project was a radio. When it was assembled it wouldn’t work. After examining the schematic diagram I concluded that I hadn’t followed it properly. All the same I had fun piecing the radio together.

I got a rock tumbler and started polishing small bits of amethyst. Dad helped me glue the polished rocks onto jewelry mounts purchased from a craft store until I could do it competently for myself. I made pendants, bracelets and broaches and gave them away to Mom, her friends and the church bazaar to sell at their craft table.

I believe that challenging my eyes to focus on small rocks and electronic components helped to clear them. My eyes were like muscles that had been weakened by illness and needed strengthening. Once they were strong enough my eyesight became clear again. The dexterity needed to solder electronic components together and to make jewelry improved my co-ordination by making my fingers manipulate small objects.

By the time I finished homeschooling in 1976 the world was much clearer. I could see large objects in detail such as cars and people but reading remained a problem. Lines of 12 point serif text were still hard going – especially a full page of text. My eyes gave out toward the end of one page. They hurt and I had to stop to rest them.

I was probably physically well enough to attend high school by September of 1975. But the outside world had changed dramatically. Maybe the outside world seemed different because I had changed. I had spent two years inside the house. How would people accept me with my facial paralysis, poor balance, and the way I spoke? These questions swirled around in my head and made me anxious about the world out there that was so unfamiliar to me now – the world I wanted to re-enter – the world I yearned for but was fearful of. Home was what I knew and where I felt safe. Like a chick ready to hatch I pecked away at the inside of my shell of fear. Once I got out of my eggshell I liked being out as much as any teenager. The people who knew me were glad to see me back out in the world. With youth on my side and with the support of my family and friends I quickly adapted to the changes in my body, my life and how I had to interact with the world.

At age 15 I began to venture out into the public. People had a hard time understanding me. Their difficulty was due partly to me not moving my lips to pronounce words and not making facial expressions. As well my tongue was a half step slower and my articulation was poor. People would be confused. It sounded like I was talking to them but it didn’t look like it. Dad suggested that I had to animate myself by moving my head or hands while I spoke so people would know it was my voice they heard. It helped.

When I went to a coffee shop or restaurant I learned to point to whatever I wanted on the menu. When the server looked at what I pointed to, and wasn’t looking directly at me, I asked for what I wanted. This worked well. More often than not I was understood because he or she didn’t see me say it.

Another technique I learned to help people understand me was to put my hand in front of my mouth when I spoke as if I was scratching the bridge of my nose. My hand masked my mouth so they couldn’t see my lips. This was effective especially when pronouncing bilabial sounds like “b”, “m” and “p”.

People including me hear with their ears and listen with their eyes. That is we lip read. When I speak, since I don’t move my lips, it doesn’t look like what I am saying. Some people are not fazed at all. Others have difficulty with my “accent” initially and I understand this. Still there are those people who are completely floored. I see a wall go up, a glaze cover their eyes and an aghast expression that says, “I can’t understand this person.” These people I find very frustrating. I’ve been given a pad and pencil more than once to write down what I said. Communication on the phone has always been easier because people can’t see me and must hear and listen with their ears.

One day in May of 1975, I was walking through Grandview Mall, a small shopping mall near where I lived. In passing I met Mrs. D who was a friend of Mom’s. We said hello and I continued on my way. She was speaking to Mom a few days later and said, “Brian gave me the nicest smile.” The fact is that I couldn’t have physically smile at her but I left her with that impression. I took note of that and began to watch how people are left with an impression.

Something else that affected my interactions with people was that I didn’t smile when I laughed. I learned to wait a second. When they weren’t looking straight at me I laughed at what they said. This largely solved the problem. Since they weren’t looking directly at me when I laughed in their minds I smiled.

My whole life has been one of adapting to ways of doing things varied from the “usual” way people do them. Sometimes I had to cajole people into letting me try. More often than not they found I could do it. My methods were at times unorthodox but I got there. I set a ground rule for myself, which was, whatever I start I finish. Anyone who knows me can tell you that I don’t damned well quit.

I found that, as a group, women are the most impressionable people who use a lot of body language. This was most apparent when I was at a party and watched two women have a conversation using only body language. No words were spoken. “Cool,” I thought. From then on I watched how women express themselves using body language. I adapted it to help me convey my thoughts when I speak. It works well and it’s not surprising that women are generally the first to pick up on it. Be advised ladies I’m looking at more than your legs.