At times I find it difficult to explain what MS is, its impact on my life, symptoms… Friends are always asking about how MS affects me, and are confused when I say things like “I’m having troubles seeing” as they reply “clearly you can see something, you aren’t blind”, other times its difficult to explain MS at all. But perhaps the most difficult thing to explain, and for other people to understand is the constancy of MS; its impact on daily life, and how I have to be aware of it on a day to day basis.
I’ve developed a few metaphors that I sometimes use to explain MS to other people. I think of life as a juggling act, with work, family, and friends all being separate balls. But I have MS so a couple extra balls are thrown in there. The diagnosis of course is a ball, and any symptoms I’m currently experiencing I also have to juggle. The idea is of course to keep them all up in the air at all times but at times there gets to be too many balls and they all come tumbling down.
I sometimes think of relapses and remissions as a balancing act. If rest, and exercise and every other factor are equal or less then the MS disease then I’m in remission, but if something either explainable or unexplainable gets out of balance then I’m out of remission.
But perhaps the best metaphor I have to explain life with MS is one that just dawned on me recently. It is that of a labyrinth game. You know the maze game that you twist two little handles and direct a marble through a series of twists and turns trying to avoid running straight into walls, or falling down holes.
I thought about it for a while and find it a metaphor for my life with MS. No longer do I run a straight path down the track to a defined finish point. Instead life has these two little letters in it. Two letters that have made everything a little more challenging, and have left life looking more like a labyrinth with twists and turns and holes to fall in. I first got sick at 12 years old. This was 16 years ago, and at that time MS wasn’t as recognized in young people as it is becoming today. So the first twist – that the neurologist said it couldn’t be MS despite my family history and positive MRI because “kids don’t get MS”. I had 6 years of twists and turns through the diagnosis process and of course non-MS specific symptoms and positive tests that make everything a little more complicated. I fell down the hole of wrong diagnoses and second diagnoses for a little while and had to start again!
After a while I got up and kept playing, and eventually got a diagnosis of MS. In high school I walked using a walker, another twist. I also had several relapses that took me down. Of course I had the typical high school question of “what will I do with my life” but like many things when you have MS, it was a little more complicated. It wasn’t as simple as what do I want to do? But instead I have the added question of “what do I think I will be physically able to do?” and of course it is always complicated by not really knowing what will come next due to the unpredictable nature of this disease. So I choose a career and went to University, worked and volunteered at things I loved, with only a few relapses and twists thrown in just to remind me that MS is always there. I taught for 4 years in Kuwait and absolutely loved it, but of course it wasn’t that easy. I had to figure out how to navigate a health care system I didn’t understand, in a language I didn’t speak. I spent about a year navigating those twists and turns, and medication changes, before I found a way to get on medication that worked for me. Then a year and a half after I got there I had the twist of the most severe relapse I’d had since I’d been treated. Soon I was having constant relapses without true remissions and finally had a remission only to start having very frequent and severe relapses this year.
Then the hole – I was told there was nothing more they could do for me in Kuwait. I had to cut the school year short and head home. Now I will take that little marble that is me and try again to roll it back through the labyrinth of life with MS. I have to decide between treatments now and hopefully I will be able to pick one that will allow me to stabilize so that I can work again. Hopefully there aren’t any more walls to run into or holes to fall down in my near future. But then again isn’t a labyrinth so much more interesting then a clear path! As a kid I really did used to love that toy!