#BringingUsCloser… or something like it

30 May 2018, the day on which I write this post, is World MS Day. The global slogan for this year is #BringingUsCloser, closer to, according to the campaign, ending MS.

Now, not to sound like a pessimist, but ending MS will be quite a feat. Yes, there has been significant progress in medical research; not a week goes by that I do not hear about a new research programme with exceptionally promising results. And figuring out a way to reverse some of the effects of MS (although I fear this will unfortunately not be 100% successful), or vaccinating against the underlying causes of MS (hey, we don’t even know what causes MS yet, but oh well. And don’t even get me started on the anti-vaxers – yes, what you put in your body is your choice, but if it affects the health of the herd then **** you!) will be most welcome.

But I fear we have bigger issues. Deeper problems.

For starters, awareness about MS is not nearly where it needs to be. I admit that awareness can never reach the level it has for a patient. But right now, things look bleak. Sometimes not even medical professionals understand what it means to be living with such a chronic illness; an illness that robs you of all energy, of your vitality, thought process, sometimes even dignity.

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Then comes the spark for this post – independence and quality of living. You see, in my eyes at least, trying to find a “cure” for MS without addressing things such as independence for patients means that we are just trying to sweep something under the rug. Perhaps because we are not willing to deal with it, perhaps because we do not want to see it anymore, perhaps even genuinely because we wish to eradicate a disease that at the very least hinders millions around the world from reaching their true potential.

But focusing our campaigning on a possible future cure (anyone have any idea how medical treatment approvals work? They take a LONG time), while not prioritising the immediate is a huge mistake. Because the people that already have been diagnosed with MS will still have MS tomorrow. And the people that will be diagnosed in the immediate future, will have MS for a significant amount of time until a cure comes along. And the saddest of all will be those for which the cure does not work (remember, not even aspirin is 100% effective). Not because we live in a horrible world, but because the focus shifted from making life easier for MS patients to eradicating MS – since for some reason I can not comprehend the campaign needs to focus on something different each year. (Oh, and how do you explain backtracking from ‘cure’ to ‘conditions’ next year? Or do people really not remember?)

As I said before I do not want to be of a negative disposition. I too am optimistic about a cure, about new treatments. And I encourage any and all of you to visit the site I link to in the first paragraph, to find out about MS related event near you and attend, to raise your awareness (even if you think you know everything).

But more than a decade following my initial episode it has become more pragmatic to improve my conditions in case things worsen. To improve accessibility and mobility, access to medical services, access to society and the things everyone else does (that includes work, personal relationships, access to the world). The things that MS patients can immediately and in the future benefit from. Regardless of whether there will be a cure or not, or whether said cure works for you or not.

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And I write these words on a day when I was too weak to go to work, when I had been confined to the house all day, when even these 600 or so words took all day to get to the computer, type, and upload. A day when I feel especially helpless (not that those close to me would not gladly help me). Feel free to disagree with me. Just know that I do not (have the energy to) care.

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The only thing that you should know, is that you know nothing

Being at risk of relapsing into my former condition of not writing as often as I would like, here go some thoughts. Let me also clarify that the “as often as I would like” part of my sentence above in no way implies a need to write simply because I have to write something, in order to fulfil some egotistical need to speak. It is just an exercise, which I at least believe, will help keep my mind agile.

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Who are you?

One of the things I keep coming across lately is how upset some multiple sclerosis (MS) patients are with people that tell them that their symptoms “happen to everyone.” To be clear, I personally ignore such comments. But the frustration of those patients with the lack of understanding from their audience about their condition is understandable. Perhaps because the statement gives rise to expectations that MS patients can and should perform just like everybody else. Or at least in the way expected from everybody else.

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