On Monday, I drove to the hospital for three appointments. I had purposely lined them up back-to-back so I would only have to take one day off work, but also because it isn’t always easy finding someone who can accompany me. Since November, I rarely go anywhere alone. My body seems to go in panic mode—all wobbly and shaky—when I’m walking without the support of a wall nearby or someone’s arm. I can’t even cross the hallway’s short distance at work anymore.
I can’t recall the exact moment when I lost my independence. It might have been caused by an embarrassing fall in the elevator or back-to-school stress quickening the degeneration of my muscles. I remember one morning last autumn, I was walking in the hallway of my building, gripping my cane with one hand and my other hand sliding along the wall for extra balance, when I came upon a newspaper strewn outside my neighbour’s door. My body started shaking, my lungs clenched, and tears streamed down my face. I simply could not separate myself from the wall and walk around the newspaper. I turned back to the safety of my apartment, hyperventilating and stricken with fear. I called my colleague E.. Between sobs, I asked if she could pick me up on her way to work, and she did. Another time, maybe a few days earlier, I was walking in the underground parking garage when I froze. I couldn’t take another step forward. When I tried to move my leg, I was overcome with dizziness and worried that if I budged an inch, I would crumble to the ground. I waited for someone to walk by, swallowed my pride and asked a stranger if he could walk me to my car. And he did. (Thank you so much E. and Mr. Stranger!!)
It was a period of angst and panic. I call it my autumn crisis. The only place I felt safe was in my apartment. But I have since regained peace and serenity. Not because my muscles have gotten any stronger or because I have regained confidence, but because I have found ways to cope. I now push a little shopping cart to get from my apartment to my car. It’s hardly stable, but it adds that extra bit of security I need. At work, H. and S. are usually waiting near my parking spot, smiling and ready to help me with my bags and lend me an arm as I walk to my classroom. I am so grateful to these two young ladies. Seeing them every morning brightens my day! And in the school, my colleagues and students are always so helpful and willing to lend a hand. I’ve been given a laptop and overhead projector so I don’t have to stand to use the chalkboard, and I can roll my office chair to get around my classroom. Unless I’m with someone, the only places I go are to work and back home. I avoid unsafe situations.
It’s all working out and I’m reasonably happy, and yet it seems like a band-aid solution… a quick fix that’s not addressing the problem. Some people think I would be safer and more independent in a wheelchair. But it seems to me I just need to get over this fear. I still have some strength left in my muscles and really should use them as long as I can. Why is it that I can walk fairly well beside a wall or when barely holding on to someone’s arm? But if I find myself alone in an open space, when I have to cross the hallway at work, my muscles lose their coordination and strength. It seems more like a mind problem than something caused by muscular dystrophy.
So it was a great relief when two months ago, my neurologist referred me to a psychiatrist, one who had extensive experience helping people with neuromuscular problems. And that was my highly anticipated appointment on Monday, the third appointment of the day.
I was not disappointed. He was positive and encouraging. His advice was simple; something I should have known. Yet, it’s always more motivating when somebody with experience in these situations tells me what to do: PRACTISE. I need to practise walking in open spaces, I need to practise crossing the hall without assistance, and I need to do it in long 45-minute stretches.
Listening to him reminded me of a talk I had with my students when they grumbled about a challenging assignment. I had explained to them that a task might be difficult at first, but with practice, it gets easier. One student then raised her hand and told me, “Mademoiselle, shouldn’t you then practise coming outside with us at recess?” Yes N., wise little girl! I should!
And that’s what I’ve started doing. Instead of remaining safely nestled in my chair at lunch and recess, I cautiously walk back and forth across the open space of my classroom and have even started attempting crossing the hallway without holding onto someone’s arm. It’s nerve-racking and uncomfortable. My body tenses up during the whole ordeal and I’m drained by the time the bell rings. But if it means I’ll once again be able to wander confidently from one end of the school to the other, that I’ll be able to shop alone, or take a walk in the park whenever I fancy, then it will be worth it!
Thank you Doctor! And thank you to all the people who work at McMaster Hospital. Every time I go, the receptionists, nurses, technicians, doctors and even the cafeteria staff have been extremely friendly, cheerful and helpful. It’s uplifting to be among so many welcoming and warm people. And even if they still haven’t figured out what exactly is wrong with me, I greatly appreciate everybody I’ve encountered there.
And thanks to my wonderful friends K. and A. for taking turns to accompany me to my appointments. I just might be able to go to my next appointment alone if this works out! Or who knows, I might not have to go back at all because of my incredible progress!
