8 Jul, 2020
Multiple Sclerosis: The vital symptom
Environmentalist and patient advocate Rebecca Kane shares her experience of living with MS.
I have never been hit with a ton of bricks, but one time a doctor did tell me that I have Multiple Sclerosis (MS). I imagine it feels similar. To be quite honest, I may have preferred the bricks. I lost my breath, my knees felt weak and my mind raced when the neurologist informed me that the MRI came back with both brain and spinal lesions indicative of Multiple Sclerosis. At only 27 I felt the clock on my life start ticking at double speed. I thought about all the regrets I had, things I had not done and all the time I felt I had wasted. How much time do I have left before my life changes again?
"Believe it or not, that feeling isn’t permanent, I can promise you that."
Believe it or not, that feeling isn’t permanent, I can promise you that. Yes, it still comes back sometimes when I’m least expecting it. Like when my legs feel wobbly or when I hold my newborn niece. Are my legs tired or is this a relapse? Will I ever be able to hold my own child, or be a good mom? Will I be a burden to my family one day? It can all feel bleak, overwhelming, and it can stop you in your tracks. But there is one thing that I could never have imagined feeling again as I was sitting in that doctor’s office last year; that is hope, overwhelming hope.
If you asked me on the day of my diagnosis what I would be feeling today, optimism would be the furthest guess from my mind. I realise now that this is because our understanding of MS is outdated. Most of us hear the term MS for the first time and instantly think of words like dependence, disabled, and permanent. However, we need to remember that the world has changed drastically since those stereotypes were normalised.
"Science has not only given us new medicines, but new knowledge."
In the past 30 years, science has not only given us new medicines, but new knowledge. Researchers are on their way to understanding MS more and more with each passing year and that means hope for those of us affected. The outcomes for those with MS today - from the recently diagnosed to those living with this disease for decades - are yet to be seen, and are certainly not set in stone. With a multitude of modern and holistic symptom management options, more than ten drug therapies (and more being created), and the plethora of research being conducted at this very moment, we certainly have a lot to look forward to. Every single one of us.
Ironically, the only thing we all have in common as MS patients is the fact that we have almost nothing in common at all. We are each unique. No two patients are alike. We each have our own peculiar symptoms and different triggers for them. The course of our disease varies wildly and greatly among all of us. This can feel isolating and even scary at times. It keeps us from predicting those answers about our future which we all so desperately desire. So, yes, the physical symptoms we share are few and the emotional symptoms we share can be painful. But I believe there is a silver lining.
"Whether your hope is rooted in spirit or in concrete science, let yourself own it."
I believe there is one symptom of MS every single one of us is justified in having. That symptom is hope. Whether your hope is rooted in spirit or in concrete science, let yourself own it. To everyone fighting this invisible battle with MS - from young to old - please remember there are many reasons to have faith in the future, even on the days when it doesn’t feel so. Despite the pain, the uncertainty, and the physical challenges - never forget that your story is not yet finished.