New Realities

MS means the need to constantly adapt to new realities, probably more so with progressive MS than with remitting-relapsing.

About six years ago I lost the use of my left hand, which was hard to accept at first. But the human being is able to adapt, and the likes of us with MS probably even more so.

And so I did. It’s more difficult to do things with only one hand, but over the years I found that I became quite good at it. Typing with one hand may take longer, but I took comfort in the fact that I had always been right-handed and therefore was lucky enough that it was my dominant hand that was still functioning. With MS, ‘silver lining’ has taken on a much more important meaning.

Remaining hopeful

I probably knew that it most likely wouldn’t last forever, and that my ‘good hand’ would go at some point as well. Then again, people keep telling me (and I keep telling myself) that it’s important to stay positive. So I remained hopeful that I could hold onto the abilities I still possessed.

Last summer I noticed that the pins & needles in my right hand increased markedly. And that the times when my hand went numb increased. It was a hot summer, and I was more than willing to believe the doctors, saying that it was probably the effect of the heat, and that physical therapy and frequent rest may help me through the summer.

Summer went and December came

Summer went. The trouble with my hand didn’t. On the contrary: I felt it getting steadily weaker, and I was able to do less and less with it.

Come December, and there were days when I had absolutely no feeling in my hand, unable to move it at all. These days were interspersed with days when parts of it were numb and other parts tingling, and I could use it for simple tasks, but needing to rest it after a short while.

30 December was one of the good days, when I could move it, which gave me hope for New Year’s Eve, when we had guests for dinner, and I wanted to be able to at least use a fork or a spoon myself in front of them. It feels so embarrassing to have to be fed like a baby in front of other people.

Still nothing

It wasn’t to be. When I woke up in the morning of 31 December, there was absolutely no feeling or movement in my hand. And it has remained like that ever since.

Therapy resumed after the New Year’s Holidays, but with no effect. It’s been two weeks now, and still nothing.

While I’m still hoping that we can breathe some life back into my hand, I’m trying to get used to the prospect that this may now be permanent. And I’m struggling with that thought. I should have seen it coming, and yet it felt so sudden. I feel I’m not ready for this. It’s too soon!

New realities and practical considerations

Getting my mind wrapped around new realities is one thing, but then there are the practical considerations. As I cannot operate the joystick on my chair at the moment, it means that I cannot even move around on my own inside the house, which is extremely limiting.

So we need to find a solution fast, and my wife and I are looking at the options available to me. We are not sure what would work better for me, a sip-and-puff system, or a head-controlled wheelchair, and whether either of the two systems can be retro-fitted to my current chair.

My mind is telling me I shouldn’t have to be looking into something like this, but at the same time I can see that right now I cannot do anything at all, not even move from one room to the next.

This can't be me

Because of the limited use of my right hand for quite some time now, I had already officially been regarded a quadriplegic, although whenever I heard the word mentioned in reference to me, I cringed. I was not a quadriplegic! I still had use of my right hand, right? ‘Quad’ means four, and quadriplegia means that all four limbs are paralysed. Not three. So I refused to let this word be associated with me.

Over the past several days I realised that this is indeed what I am now: a quadriplegic. No escape from it anymore. I feel disgusted at myself.

MS takes a lot from us

While my wife puts my thoughts into words by typing this out for me, I can see how hard it is for her, trying to suppress the tears. MS takes a lot from us, not only from those afflicted by it, but also by those around us. I feel lucky that we can openly talk about our feelings with each other. It helps to get them out in the open, have a good cry, and then move on. As move on we must. It may get harder day by day, but we cannot give up. Giving up is not an option.

I also realised – a bit too late – that it pays to think ahead. In the past I was often accused of being too negative when talking about the ‘ifs’ and ‘whens’ of the future, and now I wish I had done some more research about available technology when I was still able to, to be ready for the time when my remaining hand gives up the ghost. Well, hindsight is always 20:20, as they say.

The only option I have

‘Be prepared for the worst and hope for the best’ is also something that people often say. Maybe I could have done more to be prepared for this moment.

But the only option I have is to adapt. And adapt I will to the new reality of my life!

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