#22 First Time with a Cane

I had a cane…actually I had three canes. One was wooden, with a curved handle, very old fashioned and…manly. Another, also wood, was textured with designs as might have been done on a router. The third cane I bought because it collapsed, and could be packed away in a suitcase or bag. I was prepared, to say the very least.

The wooden canes were tucked into the back corner of the coat closet. The collapsible one was stored in my car, had been there for years because I didn’t have the nerve to use it.

Thinking back, I realize now why I was so hesitant, reluctant even, to use something that would only be of help with my mobility and balance issues. As long as I didn’t use the cane, an assisted device, I could hide my disability. So what if I staggered a bit, was constantly touching the walls, the furniture, whatever, to keep my balance.

I was afraid to use the cane in front of people I knew; afraid I’d look silly, afraid I couldn’t cope with something else I’d have to carry, to keep track of, in addition to my purse.

Then one August day, my friend and I were on a day trip. We had driven to the north, our destination a large outdoor art show. Parking was limited near the exhibits, but was available for a fee in a farmer’s field down the road. A shuttle service was provided, or one could hike through the woods, or along the road. I’d had a Handicapped Parking sticker for awhile, and like the cane, I’d never used it. As we were talking about where to park, we couldn’t believe our luck when we spotted and empty space, right near the entrance.

We were entering the parking lot when we noticed the empty space was a designated Handicapped spot. “I have my handicapped parking permit with me,” I said. We looked at each other and laughed and went to park in the open space. There was a man directing traffic at the entrance and he informed us there was no available parking. I showed my permit and he, reluctantly, waved us on. But he glared at us, not trusting that we were actually deserving of the parking place.

I immediately felt guilty. I could feel the man’s eyes staring at me, judging me. “Maybe I should use my cane,” I said. “Then I’d look legitimate.” I grabbed my cane from the back seat, put my permit on the dash, and got out of the car. And that was the first time I used the cane.

I learned a few things that day. People respect the cane. They respect your space, hold doors for you and are generally kind and considerate. The fear I normally had about being jostled in a crowd was lessened and I had a very enjoyable, though very tiring, day.

It was a start.

#21 Stumbles

When you tend to drag one foot, more so if tired, you really want to watch where you’re walking. Flat level floors are easier, but walking outside, in the grass or on an uneven surface, can be tricky. I remember a day my whole family was together, Easter I think, and we all decided to take a walk along the country road. It was a typical unpaved road, some pot holes and other pitfalls.

,

I was doing okay, carefully watching where I placed my feet until…I was distracted. My granddaughter pointed to the far side of the road, all excited on seeing horses in the field. Of course I looked, didn’t see the pot hole and set my right foot right on the edge, turning my ankle.

With MS, your body does not respond quickly to what your brain tells it to do. A ‘normal’ person would take a few quick steps forward and maintain their balance. My body took that forward motion, but my feet stayed planted where they were.

I knew I was going to fall, there was no way to avoid it, and I remember thinking what body part do I want to hit the ground first, hands, knees or face. It all happened in slow motion, I could feel myself falling and eventually, for it seemed a long time, I hit with one knee and two hands.

There was a moment of shock for all the family, where they just stood and watched me go down, and for a moment still, after I was on the ground. Then everyone moved at once, all care and concern. And then they all laughed.

“You should have seen yourself,” my daughter laughed. She demonstrated with her hand the slow motion tumble I’d taken. I could imagine it and it would have been funny. I had banged my knee and scraped my palms but otherwise all was well. The laughter was a way to defuse the situation, once they knew I wasn’t badly hurt. It was a helpless moment for all of us. I knew I was going to fall, they knew I was going to fall, and there was nothing any one of us could have done to prevent it.

My son insisted on going back for a car to drive me home, and when I felt the pain in my knee, my bad knee, I appreciated his effort.

That’s the thing with MS; you don’t have the ability to make those quick recoveries, so falls happen. If I’m walking on grass I have to pay such attention to the ground, especially if there is a crowd around where I might get jostled and thrown off balance. You have to be alert, a raised crack in the sidewalk, the edge of a carpet, any uneven surface; all are potential risks for someone like me. It means you spend more time looking at the ground than at the world around you.

On the plus side, I was still walking.

#20 Handicapped Parking Permit

I can’t remember when I applied for my Handicapped Parking Permit, but apply for it I did. It was never my intent to abuse it, but there were always going to be those days when I couldn’t find a parking space within my energy limitations, or in winter when I couldn’t trust the uneven snow covered roads.

Take grocery shopping. There’s the walk into the store, the walking around the store, and then the walk out of the store and back to the car. That’s not even taking into consideration the lugging of groceries into the house and putting everything away in the refrigerator and cupboards. All of that takes energy, energy someone with MS just does not have. If, by using the disability parking, you cut some of that activity down, maybe, just maybe, you’ll still be worth something for the rest of the day.

I had the family coming over and needed some last minute groceries. It was a hot summer day, so one strike against me already. I parked in the handicapped spot; my only other choice was at the far end of the parking lot. I mean, come on, what was I thinking to do my shopping late on a Friday afternoon? Not good planning on my part.

I was at the back of my car getting grocery bags, when a woman came out of the store and began to unload her groceries into the trunk of the car beside me. She was not in a handicapped space, her timing was just luckier than mine that she found a spot so close to the store. I could feel her glaring at me, and I mean glaring, daggers for sure. What had I done to warrant this I wondered, and looked at her in question?

“You don’t look very handicapped to me,” she said, her disgust apparent in her tone.

I was hot and tired already, and not accepting of this woman’s derision. “I have MS.” I told her. “I may look okay now, but why don’t you wait until I come back out and you’ll see how much I’m struggling.”

She wasn’t going to concede willingly. “Then you should have a Handicapped Parking Permit.”

“I do have a permit, its right there on the visor, look for your self.”

That shut her up. She mumbled an insincere apology and hastily got in her car and drove off.

But she’d left me angry and expending more energy than I needed to because I was upset. Her comments hurt with their callous disregard and lack of understanding. There’s that ‘invisible’ disability again. We should all give others the benefit of the doubt; we can never know for sure what others might be struggling with. Not all disabilities are obvious.

Think about it. What about the woman with heart disease, the man with emphysema, or those people in pain? They are just as disabled in their way as the person with the walker or wheelchair. Who are we to judge?

#19 Heat Intolerance

I remember, during my first appointment at the MS Clinic, the neurologist asking me what happens when I take a bath. I thought it a strange question because I didn’t know that heat could adversely affect people with MS.

It made me think about a conversation I’d had with my daughter. I had spent a Saturday afternoon enjoying a long soak in the tub. It was my “Calgon Moment”, reading a book and soaking up the comforting warmth of the water. But, coming out of the tub I always felt weak, overheated, lightheaded, and would immediately lie down.

My daughter was smarter than me because she had noted that this was my normal response to a bath, not a rare occurrence. I hadn’t figured it out for myself, but her comment and then his question put it all into focus for me.

The doctor called it a ‘hyperthermic response’ but the official term is Uhthoff’s Phenomena, and basically it’s heat intolerance.

I remember another day, a summer day, when I parked behind the town hall because I needed to pay my taxes. In the office I was informed that they didn’t have Interact and so I needed cash or a cheque. I had neither with me and decided to walk down the block to the bank. Bad idea.

At that time my balance was okay, for most of the time, but I always felt better when I had something to hang onto or touch. But walking downtown didn’t give me such hand holds, though I did stop once or twice to touch the building, pretending to look in the shop windows. By the time I got to the bank I was so weak and tired, my head felt fuzzy and I was red faced and in a sweat.

The teller asked if I was okay, and I said yes, even though I knew I wasn’t. I decided to not to walk the main street back to the town hall, but took the back way, along the parking lots. I was stumbling along and absolutely missed seeing the road bump in front of me. Of course I tripped, lost my balance as I have no recovery, and fell flat on my face in the road.

There were people around who were shocked, but quickly came to my aid. I had landed hard on my knee, ripping my jeans, falling forward on my shoulder, hitting my head. Talk about mortified, way beyond embarrassed. These kind people helped me to my feet and were crowding around me, adding to my over heated situation. One understanding lady asked where I was going, and offered to drive me to my vehicle. I took that ride, and sat in my car until I was cooled down and rested, before I went in the office and paid my bill.

So, there you have it, heat intolerance, from exercise, hot baths, anything that causes an increase in your body core temperature. The good thing is the effects are temporary and will disappear with rest and cooling.

A warm bath is a luxury, one I was not willing to give up. With as much joint pain as I have it is also therapeutic, or so I tell myself. Now, I only bathe at night when I will be heading to bed immediately after. I often remain in the water as it cools, or should I say as I cool. It works better that way for getting out of the tub.

So no hot tubs or saunas in my future, and that’s okay, they weren’t part of my past anyway. But, there’s not much I can do about hot summer days but stay inside, stay cool and wait for fall.

#18 An Excellent Read

I found a book called “Women Living with Multiple Sclerosis”. It’s written by Judith Lynn Nichols and her Online Group of MS Sisters.

The group met in an information area of the internet and evolved into a consistent group of twenty-plus women, of varying ages and lifestyles, but all with one thing in common, they all have Multiple Sclerosis.

They communicated online, and talk about everything related to coping with MS, a chronic and progressive disease. Each chapter of the book picks a specific aspect of living with MS and is drawn from the message-board conversations and other E-mail responses to the author’s request for information.

What I like about the book was the stark honesty of the women. There is much about this disease that is personal, and embarrassing, and the talk in the book is frank and open. I found comments in the book that verified some strange feelings I’d experienced and I found comfort in knowing it was related to my disease, that others shared the same symptoms.

The section on finding the correct neurologist was interesting, as doctors often overlook or disregard your feelings, or your struggle to get through the day. The foreword, by a neurologist was particularly enlightening, as he admits to being more understanding of his patients’ struggles after reading the book.

The book’s description of the symptoms is much better than the list of words you commonly see. I found the confirmation and the descriptions helped me to communicate with my own doctor.

I read the book once, then read it again and highlighted all the symptoms in the book that I experienced. Inside the cover I wrote the date, and highlighted it. Then a couple of years later I read it again, highlighting any new symptoms in another colour, again dating it in the inside cover. I used the words of these other women to document my own journey.

There’s a second book, published in 2000, “Living Beyond Multiple Sclerosis-A Women’s Guide”. I have read it also and added it to my MS library.

The books are an excellent read, written in the words of women just like me. Women struggling to come to terms with their disease and the changes it has made in their lives.

#17 Another Kind of Grief

In 2003 I moved yet again. I had been living in the country, thinking it would be an ideal life. Actually I was subconsciously trying to rekindle some of the feelings from an old life is what it was. When I had lived in the country before I’d had a partner, someone to share it all with, and this time I was very alone, without any sense of belonging or neighbourhood.

I moved into town, to a townhouse complex that provided me with lots of neighbours, not friends, but neighbours. I understand now that my constant need to move is my way of searching for home. I had never found my sense of belonging, that place where I could be happy. And I never would if I kept looking outside of myself. Home is a feeling generated from within.

My ex-husband lived not far away with his current partner, and he walked my way a few times with his dog. We had found a sort of friendship over the years, were still parents to our kids and grandparents to their kids. We were still family of a sort.

I received the call late one night, and my daughter told me that her father had collapsed playing hockey and was at the hospital. Ten years after a triple bypass, his heart finally gave out. Of course I went immediately, my kids would need me. He was gone when I arrived, and I waited, with his partner, his team members and my daughter, waited for my son to come from out of town.

I helped the children the best I could, being there, staying in the background, and watched. The continual parade of people that came to pay their respects was amazing, old friends, neighbours, coworkers, and all of the family that I had once loved like my own. These were people from my past, and I saw what it meant to live in one area for more than thirty years, the connections and the comfort.

I spoke with people I hadn’t seen in decades, and my emotions were mixed at times. Anger that the divorce I hadn’t wanted, and a need to find employment had robbed me of the stability I saw in his life. Even though he had married and divorced a second time, had had numerous partners, he’d had the same job, lived in the same area, maintained the same activities.

I was also sad, for time and distance and pain hadn’t diminished the fact I still cared about him. I wasn’t a widow, but I grieved.

And I fell into another deep depression, closing down, shutting everyone out.

#16 So Now What?

The fall of the year I went off work there was an event with disastrous impact and results. September 11, 2001. I was home and glued to the television as was most of the country. It stayed with me, to be truthful; you couldn’t get away from it. The artist inside me that had been silent for so long suddenly awoke, and I created a work of art, so different from anything I had done before. I had finally found something to fill up my time, and being creative soothed my damaged soul.

I hated the town where I had moved with such promise, and moved, closer to the kids, at a sort of half way point. I began to concentrate on my creativity, making clothes for my granddaughters, writing stories for them, and painting. It filled my time, gave my mind something to concentrate on, but still…I was unhappy, alone, with too much time on my hands.

The two years went by and I received notice that I was accepted for Long Term Disability. It was a relief, and yet it left me with a “Now what?” question. I hadn’t realized how short sighted I had been, never thinking beyond that 2 year time frame. I wish I had sought out some counselling, someone I could talk to. I had some crazy thoughts, not the suicidal ideation stuff, but stuff about family, money, my value as a person. Maybe a counsellor could have helped me sort through all those feelings and the years to follow would not have been so painful.

Subconsciously, by neglect and by making bad decisions, I showed I didn’t care. I was totally apathetic. At a time when I should have sought out counselling, family, or friends, I blundered through alone. The worry that had hung over me, like a black cloud, was finally eased when I went on disability, but I still had the empty days and a staggering sense of loss of self. I was making my way, one day at a time.

My second granddaughter was born during that time, and a new baby is always a happy event. But as much time as I spent with my children, being grandma to their kids, I still spent too much time alone, feeling separate and isolated. It was as if I lived two lives, the one I showed to the family, and the one I lived when alone. I had no idea who I was anymore. It seemed a lifetime since I had left Toronto, for in those five years my life had been unbelievably altered.