I saw an article by another person with MS reflecting on what it had changed in them in the twenty or so years since diagnosis. Quite a lot, of course, although such a span of time leads to change in any case. Still, selfish soul that I am, it got me thinking. As I approach the tenth anniversary of diagnosis, has having MS changed me?
Here is my absolutely unscientific reflection. Divided into good and bad. There is always something good, right? These are not necessarily directly caused by MS, although the odd way it operates means that maybe they are. Still figuring it out, day by day.
Bad: The Obvious Stuff
Mobility, cognitive, concentration (or lack thereof), my right side not always doing what I want it to. These are covered extensively in the blog so let’s take it as a given that there is change here. It’s not good. Let’s leave it there.
Good: Living the Good Days to the Full
It is amazing when things do go well! When my mind is clear, when I can take everything in around me and process it all. The total joy of being alive and swallowing everything the world can give me is something to behold. All the darkness seems to disappear, decimated by one intense piece of light. Not every day is like this and, yes I know, everyone has good and bad days. It is the intensity of the the good that makes it so memorable. Whether it be something so superficial as a record with the bike or something as fundamental as a long conversation with a good friend where I remember everything. Drink it all in! Live life! Feel how amazing it is!
Bad: The Fear of Loosing What I Have
It is going, though. All of it. Everyone loses everything eventually but I will loose things more quickly. That’s it. I know it when, after that brilliant ride, I can’t use my right leg for about twenty minutes or after, that great conversation, I speak to the same person the next day and cannot remember what they were talking about. The toughest reminder? I am only forty-eight years old but the walk to the centre of the town where I live and back, around two kilometres, can sometimes be more intimidating than the biggest mountains I have cycled, depending on how my legs and balance are.
So I cycle to town. Less fuss, less intimidating. But I do miss long walks. They are gone. I will loose more. That scares me.
Good: Sensitivity to Others
I realise that there is a lot going on in my mind, some of which is let out in this blog. No fear there, the blog is mine to control. It is good to write up how I feel as it helps me understand what I am going through. And with this personal realisation comes understanding that so many around me have issues, mental challenges, things on their mind. It does not need to be progressive illness to be all-consuming, overpowering. People can react to their issues in different ways. The person who is being an arsehole in a meeting? Maybe there is something behind that. The person who is rude for no reason? Likewise. I will not say this is a direct impact of MS but one thing I have gained is patience with others. Give them the room to say what is on their mind and listen actively, though don’t try to solve their issues as that may just not work. Just listen. That has helped me when others have done the same and I have learnt that it can help others. It helps to be open the act of being sensitive to others.
Bad: Sensitivity to Others
Of course, amongst those whose reactions come from struggle at the minority who are simply genuine arseholes. The ones who crack a joke because you are limping or who say you sound like you are drunk, haha, when those words are coming out with difficulty. When they know I have f*cking MS the arsehole factor is even greater. The problem with me is that I will not remember the fifty people who were supportive and helpful. I will remember the two who were arseholes. This can lead, for me, to mental barriers. What is everyone thinking when I walk/shuffle/stumble into the room? What do strangers make of this guys whose thoughts just tumble out of his mouth? Yes, I know! It doesn’t matter! It has helped to develop something of a thick skin over the last few years. The stupid remarks can bounce off. A little. Still, sometimes they trigger me.
‘Oh, I wish I worked three days…..’
MRI’s, spinal taps, cognitive confusion and all of the other things that can be so difficult to explain…..
No….. You don’t. You really f*cking don’t.
The thick skin is work in progress. I don’t think it will ever be finished. But would I want to be that thick skinned? Sensitivity to others is a good thing, I don’t want to loose that. But it can lead to challenges.
Good: The Value of Friends
Understanding others is important to me. It is also important that others show understanding back, or at least try to. Not everyone does and it has cost me some friends. Or those who you thought were friends. It also gains you new friends. Those who understand more about the struggles that come in life and also those who are just plain nice people. You come across them everywhere and they enrich you, more than you realise and perhaps more than they realise. You enrich them as well, friendship is a two way thing after all. MS has been a hard journey and it will continue to be. It is less hard with good people around you, whether it be for deep, difficult conversations or a good concert and a chat about….. nothing. I value all of them. More than ever.
Last Thought: What Has MS Really Changed?
This has been quite a random post, in the end. In the same way that MS can feel so random. What has it actually changed about me, though? Probably, in me, not much. MS does not define me, what I am or what I hope to be. It has changed my perspectives, what I value. In that sense, looking through the list above, it has changed me. None of these things would would be in my mind in the same sense without MS.
But what has it really changed about me?
Frankly, nothing. I am just more aware of the good things that I have and what I don’t have. Perhaps I question myself more, too much sometimes. I am also healthily aware that it is the same for everyone. You don’t need a progressive illness to be thumped by reality. Alongside this is a dose of healthy optimism. There may be some things that are lost but there is still so much to enjoy. I intend to carry on doing just that.