Steven’s Story About MS.
Everyone has a need for certainty of what tomorrow will bring. That tomorrow they will not be in pain, that they will have comfort and that they will be ok. Everybody also has a need for a-bit of uncertainty – a few surprises. Variety is the spice of life is it not? We want surprises that are good and that make us feel loved and appreciated. Problems are those surprises we don’t like and that bring discomfort to our lives.
In 2013, I was diagnosed with Multiple Sclerosis (MS). MS is one condition that never seems to lack surprises and like all other disease, the surprises MS brings are unpleasant. No one knows what causes it, but what they do know is that its auto–immune. This means your own immunity attacks you! Specifically, the insulation protecting the nerves in your brain and spinal cord known as the myelin sheath.
I remember how my first visible manifestation of MS caught me flat footed and alone – far away from home. I went to bed perfectly normal and woke up the next morning with double vision. This was the first symptom that led to an MS diagnosis later that year. At the time, it came as a surprise. However, as I later came to learn MS had been ravaging my nerves and simmering silently within, long before it made itself known. It was a bad surprise then. It was a problem!
It took me time to figure out what was happening and come to terms with the illness. I relocated back home to be with family and friends. Since that diagnosis almost 3 years ago I have learnt two fundamental things.
- In Kenya, I was not alone.
- MS is unpredictable and the course of the disease varies widely amongst different people.
Another thing I learnt, is that MS is particularly skilled at hurling curveballs. Today it is a cricket bat straight to your nose and tomorrow it’s a hammer to your toe. What makes MS different and unique, is that neither you nor the clinicians can see when an attack will come. You are blind. Unassisted you find yourself ill equipped to take a defensive stance. Assistance in the form of disease modifying therapies are very expensive and need to be taken over the long term. However, they are still not the ‘silver bullet’ and show mixed efficacy in stopping progression of the disease.
Researchers continue to work hard at developing a cure for MS and have developed some new therapies involving stem cell transplants that are showing enormous potential to reset the immune system and stop progression of the disease. This is very promising as something even close to a cure has evaded science for decades.
As expected with any new treatments, they are prohibitively costly and in this case, high risk. It’s understandable why an MSer (as we call each other as people diagnosed with MS) would opt for this treatment. It is because of hope. Hope to go back to how things were before, hope to be able to do the simple things like walking straight without looking like a drunk, hope to not get so tired doing the simplest tasks, hope to be able to once again tie your laces or even jump over a puddle of water. Often just to be able to do the simple things without needing to think through all possible scenarios of what may go wrong.
For those MS warriors (Yes it’s a battle) who chose to undergo these therapies, the potential benefits far outweigh any of the known risks. For me, I can wait a little longer until the therapies become safer or the risks begin to look miniscule compared to the trajectory of my condition. Until then, I aim to make the best of my life.
I am actively familiarising myself with MS, its problems and how best I could deal with them. I figured, if I knew what MS could possibly throw at me then there would be little uncertainty and little surprise. What I have learnt about MS is that it can bring unbearable pain, mobility problems, cognition problems, bladder problems, memory issues and a whole lot of other things.
My strategy is simple. To rid the surprise element. When MS hurls a curve ball then I think to myself “You knew it may come and now it has, so what you gonna do?” If I knew what may happen, then it really comes as no surprise when it does right? Such thoughts make recovery faster and bouncing back to normal much easier.
Burying my head in the sand is so much easier than actively seeking knowledge on the potential of this disease and its worst outcomes. The strategy I have adopted, is a different approach to how most people deal with disease and it has been working well so far. They say most disease is in your head. This one literally is. In your head and spine. Mental and physiological strength is essential armour for this battle.
I don’t ask why me? I contemplate why not me? Perhaps, I am best suited to deal with it. I don’t know God saw it fit, saw me able to deal with this curveballs. So I deal with it. I find it really helpful when I can keep my wits about me, stay positive, hope for the best but prepare for the worst. I know it is easier said than done. I am living it! Don’t get me wrong, It’s a never ending struggle but my family has been my rock. I don’t know what/where I would be without their support. It takes a toll on your loved ones. You see the pain in their eyes, helpless to help. It get very hard for them when they see you suffer. MS doesn’t only affect one person.
I cannot change it so…
Taking away the element of surprise that characterises MS is like sweeping the rag from under its feet. To me this as a small victory against this disease. I am a warrior. I need to fight back. It’s no use to me to worry about something I cannot change or that I have no control over.
So, I accept what I cannot change and embrace what I can. I live in the present, in the now. Projecting all the things that could go wrong in the future, is discouraging and is not deserving of my attention. Instead I always look at what I can be grateful for now, the little things that make me happy, make me smile and which make me content. I laugh a lot more than I used to pre diagnosis. When I stumble awkwardly or forget someone’s name or something I should not have, I laugh at myself. The alternative is depression and tears. Occasionally sadness creeps in but the MS support group in Kenya is so helpful. We chose to laugh together. Rather than cry together. We laugh a lot!
I am living independently despite MS. I work 8-5pm in a competitive field, and I excel at my work. I also make time to cook. I love cooking and I have become a ‘YouTube chef’. A great diet which is nutritionally dense is great armour. With the internet, there is loads to learn and do with food. I call this hacks, like computer hacking but targeted to self. Bio hacking is the term. Google it. I do almost everything that I used to, not as well as I should, but I do. I sometimes am required to speak in front of people and this must be the most challenging thing I face. I practice a lot and even record and tweak my presentations until I can get everything down. As I usually forget what I intend to say. Still, I am independent. I drive to and from work. I cannot play rugby like I used to, I am a bit clumsy when handling a ball and struggle with fatigue which is one of the most annoying things of the condition. What I eat and exercise plays a huge role. Other than supplements easily purchased over the counter, I am medication free!
All in all MS continue to add spice to my life. Sometime its red hot pepper often it’s just thyme or rosemary. It’s not easy to know what’s on the menu. When it switches it up it comes as a surprise. But not such a surprise. The choices I make are totally different now and to me they are way better. It can get bad sometimes but it’s not bad always. They are good days and I cherish them more than normal. Having MS has taught me to not take anything for granted and I do not.