Looking Back... and Forward
Last updated: April 2018
In a couple of months I will turn 50. A milestone. Granted, I would have liked to stay in my 40s for a bit longer. I feel quite attached to my 40s. But at the end of the day it's just a number, so who cares?
Almost half of my 50 years (23, to be exact) MS has been my companion. So I thought it might be a good time to look back onto those 23 years.
If 23 years ago someone had predicted that at the age of 50 I would not have to go to work or do any household chores, that someone would tend to all my desires without me having to lift a finger, I would have thought how excellent that would be. A life of leisure! What more could one wish for?
Well, I guess the prediction has come true, but in very different ways from what I could ever have imagined: I don't have to go work or help out in the household, No doing the dishes or taking out the rubbish bags. I literally don't have to lift a finger. I don't even have to dress or undress myself. A life of 'leisure'...
Well, the thing is that I can no longer do all those things. I cannot get up from bed by myself. I need someone to dress me and transfer me into my wheelchair. I spend all day strapped into my powerchair, my legs paralyzed and my left hand and arm useless. Pain is my daily companion. A 'good' day is when the pain level is lower than on my bad days. A day without pain is a mere distant memory. I can't remember what that feels like.
My morning routine takes about two hours, before my wife goes to work. A carer comes to our house during the day to take care of lunch and personal needs. I have a pee bag and an ostomy bag. It doesn't bother me anymore. It's part of my life.
In the late afternoon or early evening, when my wife comes home, she takes over my care. Although I don't really do anything all day, I feel exhausted at the end of the day. Yet I dread bedtime. If I get a couple of hours of sleep, I'm lucky. More often than not, I lie awake in bed staring at the ceiling, either because of relentless pain or muscle spasms in my legs, which makes them jerk around. If I need to change position to find some relief from the pain, I need to wake my wife, as I can no longer turn over in bed by myself.
Weekdays feel lonely and boring. There is only so much TV you can watch, so much Internet surfing you can do. Reading a book has become all but impossible, because I can't remember what I read the previous day. Weekends are my highlights and the only time I get out of the house for a walk in the park or to go to the shops together with my wife.
But my life is still worth living. It's still worthwile waking up every morning, despite all. Had anyone told me 23 years ago what my life would be like at the age of 50, I would have said that this is not life. Or not a life worth living. But I've had 23 years to gradually adapt, to constantly re-invent myself and learn my 'new normal'.
I don't have the option to go back to the carefree life I lived 23 years ago. But I have the option to appreciate the few things I can still do, despite all the limitations my MS places on me. So, I choose not to compare to my former self, but to live for the moment.
What scares me, however, is what the future may hold for me. If I had the choice to stay as I am right now, I'd grab it instantly. Because the future seems so much worse. I know it's just a matter of time until I lose the use of my remaining hand. To lose the ability to type with my fingers. My 'good' hand is getting weaker, sometimes tremors prevent me from doing anything useful with it already now.
My upper body strength has diminished, making it more difficult to sit upright. I'm having to spend more time in a reclining position. I know it's just a matter of time until I will no longer be able to sit in a wheelchair and will be bedridden permanently, to be fed like a baby.
How much longer will I be able to stay at home and for my wife to be able to look after me? When will the time come that I have to be institutionalised with 24/7 care?
The future looks too bleak to even contemplate it. I prefer not to think about it, prefer to live in the here and now. It may be tough, but I can live with it. Because it's still so much better than what's in store for me in the future.
My advice to everyone: Don't mourne what you have lost or what you may lose in the future, but appreciate what you still have. Enjoy the here and now, whenever you can, because it won't last forever!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: