Ten years ago, while waiting for a neurology appointment at Beaumont Hospital, I wrote a heart-wrenching blog post about the unpredictability and unfairness of having multiple sclerosis. Next month, I will go back to the scene of the crime - and in the same month I received my diagnosis, no less.
A lot has happened since then. After all, 10 years seem like an eternity on paper, but reality has a way of telling us: “Wait, what? Where did those 10 years go?” There are plenty of years to draw experience from: some good, some bad, or some that I would add to an autobiography if I were to write one. For those in the early stages of living with MS, understanding how to listen to your body is the key to making things easier.
Over the past decade, I've grown more relaxed about my approach to MS because we have developed a mutual understanding, like: “If you lend me a hand, then I'll lend you another.” Not every ache is a relapse and not every relapse is a push too far.
Despite the numerous excellent books on MS, I was unable to find any personal manuals that explained how I, Willeke, can become my own life insurance. Although I could use the nitty gritty mechanical explanations of what MS is and what it is capable of, I needed more information, which required me to make my own mistakes.
I did just that. My optic nerves were overworked, my brain was fried due to an unhealthy desire for the audiovisual world, and I refused to rest my dodgy legs and everything else in between.
Over the course of 10 years, I have slowly dismantled those barriers as I came to the realisation that you only have one life, one brain, one spinal cord, and two optic nerves. Neither can be replaced during day surgery, so I owed it to myself to keep going for as long as possible.
Sadly, this also meant I also had to break with some people as certain relationships only aggravated the negativity. Those who didn't allow me to move forward mentally and emotionally in the way I needed to, showed that there was no point in prolonging the hurt of not being heard.
One of the biggest changes since first writing the post is how I have become part of a community that is all-consuming in its desire to help those with MS. As a blogger for MS Ireland and others, seeing how MS affects us each so differently has expanded my understanding about MS in a way I never could have known.
It helped amplify the message that shared knowledge was far more important than sitting on my own thumbs and not looking further than my nose. The importance of the sum of our fears, needs, hopes and dreams showed me that there is nothing we can’t do if we don’t have each other’s backs, MS or not.
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