Everyone with SMA has their own view of life with the condition, and for that matter, of life itself. However, after talking with some contributors to the SMA News Today Forums, it has become clear that I have a different outlook than many do. I don’t mean that I have the correct mindset or that anyone else is wrong, but it simply seems that I have an alternative perspective.
I believe SMA is an unequivocally bad thing. It seems self-evident to me that even the most positive person must acknowledge this. Everyone I know with this disease is either fighting it with the disease-modifying therapy Spinraza (nusinersen) or attempting to. Does this mean that I can’t still live a rich, meaningful, fulfilling life and am forced to wallow in misery? Of course not. I can choose to overcome my disability and can even become refined by it (thus the title of my column). I hope to persuade you that SMA is, in itself, terrible.
One example from my life is my spinal fusion surgery. This procedure was necessary to correct scoliosis caused by my disease. Much like SMA, the surgery itself was not good. Let’s just say that having your back sliced open comes with some major downsides. However, the long-term benefits worked wonders for me, both physically and mentally. My spine was no longer curved, so pneumonia became largely a thing of the past. It also marked the point at which I conquered my biggest fear. It was one of the most daunting experiences I’ve undergone, but the results have been abundantly positive.
My grandmother recently told me a story about a man who had a car accident and was subsequently given a brain scan to assess his injuries. The scan revealed cancer, which would have gone undetected if not for the accident. No one would deny that a crash is intrinsically bad, but it saved this man’s life.
My goal here is to distinguish the difference between SMA — the bad — and the potential good that can come from it. Some may find this to be an overly negative point of view, but I’ve always considered myself a realist. I don’t want to shed any positive light on SMA itself, as it’s my mortal enemy. My aim, not just here but with this column as a whole, is to demonstrate that the ability to overcome adversity and produce good results doesn’t make the obstacles intrinsically good.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.