I need to be honest. I mention acceptance quite a lot, but am I good at it? No, I am pretty crap actually. People tell me it is resilience but it is not. It is stubborn pig-headedness. It can be silly, stupid. Until there is no choice but to accept as otherwise the world starts to close off. A case in point? A stick.
Stubbornness
I have mentioned my walking stick in the past. I actually have two. One quite solid that, as yet, has seldom been used and another that is foldable and that I keep with me all the time. Or should at least! I am guilty, though, of thinking that my leg support will be enough and that my walking is not that bad when I have it on. Of course it is fine when I start walking but gets slowly worse.
Stubborn me, though. I focus on the start when it is good and think it will stay fine. Of course it doesn’t.
The Ease of Riding a Bike
My issues are all on my right side, a result of those lesions being on the left side of my brain. The left side is pretty OK. The right side is also pretty strong, all that cycling I still manage. Cycling just goes better. I asked my physio why and it is pretty simple. Walking requires much more control from the nerves, the brain. It is more complex to manage and coordinate for the legs and feet. Cycling just needs to get the foot on the pedal and push. I’ve also cycled so much that the muscle memory, as my physio calls it, is just stronger for that activity.
Cycling is easier, that’s clear. But I cannot take my bike in to a supermarket or a museum. So I need a stick.
Why a Problem?
What is so difficult about it if I need it? Well, to be honest, sometimes I simply forget it! I start pretty strong but, as the steps increase, so does the weakness on the right. I start to drag my foot and the risk of tripping increases. If I am with someone else there is usually a friendly arm or shoulder for support but, if I am on my own, it is a real ‘oh sh*t’ moment.
There is also that feeling of decline. When I was diagnosed I always feared that wheelchair on the horizon. For a long time it felt far away but it now seems that bit closer through the use of a walking stick. I know that’s small-minded of me but sometimes it is just difficult to comprehend what is effectively negative change.
Accentuating the Positive
The trick is to make the change positive. A very difficult trick sometimes, I admit that! But this is what is needed, a change of mindset. With a simple folding stick and a nice bag to put it in (still looking!) there is so much more that is reachable. It is not a major action to get the stick out and unfold it. I must also admit that I am getting better at using it, using it in the left hand to balance out the weakness on the right which felt odd but now makes sense.
It is becoming more of a reflex as well. Just use that stick. I am not ashamed of using it at all. I just need to remember it!
Being Selfish
It is also quite selfish to be stubborn. It is no fun for those around me to always be, literally, leaned on after a certain amount of time. I also want my independence. I have to accept that a lot of that independence is gone but where there still is some, I like to keep it. The stick does not liberate me completely and I will not go to a museum or concert alone and, even if I don’t use their shoulder or arm, my friends will still need to accept that I am just bloody slow. They do, of course.
Learning to Love a Stick
In the end, though, the stick is just a stick and I need it to lean on. I still practice short walks near home with no support apart from my hiking stick, a relic of the days when I could walk eighteen kilometres a day. I miss those days…
But they’re gone. I can miss them but I also need to accept that they are gone. The stick is here. I need to remember it and embrace that bit of freedom it gives me. Keeping the world a little more open with a little less dependence on others. Just accept that stick. And remember it! Perhaps love it a little because it keeps some doors open.
Postscript: Wrote this a while ago and only got around to publishing it now. I am now trying a drug called Fampyra at the recommendation of my new neurologist that will hopefully improve my walking. Fampyra works by blocking potassium channels in damaged nerve fibres, helping electrical signals travel more effectively through the brain and spinal cord. Don’t ask me to explain more than that, though! Read this instead.