The growing pains of multiple sclerosis
Multiple sclerosis blogger and influencer Martin Baum reflects on life with MS
There’s little doubt that much has changed since I was first diagnosed with multiple sclerosis (MS) back in the 80s. Today there’s more information, recognition and understanding but what does that mean to any newly diagnosed young person? Well, if my journey through an illness with more twists and turns than the Hampton Court maze is anything to go by, not a lot.
What I still remember at the inception of my diagnosis was how my mother, with the best of intentions, inadvertently began the process of putting my life on hold. She was always concerned about what might happen. My aunt, her sister, had MS. She was in a wheelchair which only added to the fear of an uncertain future for her son.
A negative ‘what if’ mindset was being formed and it was scary. Yet despite all her worst-case scenarios it took over thirty years for me to reach the secondary progressive stage of MS and writing this blog, has given me pause for thought all these years on.
A fundamental issue I have with MS is that it’s easy to forget what we can still ‘do’ and what we can achieve. The older we get the harder it can be to get on with life because sometimes MS makes simple tasks more difficult. But as far as it goes, the newly diagnosed youngster needs to be reminded that they are still essentially the same person as they were before being labelled.
There’s a line from Tashauna, a song by the Rossington Collins Band that goes ‘if you believe that you are weak, then weak you’ll surely be’. A friend played me the song years ago at a time I was struggling with my diagnosis – it wasn’t the first time and it wasn’t to be the last where I felt I was out of my depth – but that lyric has stayed with me almost as long MS has.
Just because the worst case could happen, it doesn’t necessarily mean that it will. Having MS is like climbing Mount Everest. Not everyone reaches the summit. For others who are at relapsing remitting, secondary progressive and primary progressive base camps it’s anyone’s guess how far up the mountain they’ll ascend. But until then, until you get there or if you get there, the only advice I would offer to any young person is this – it’s better to live a life, not MS.