Becoming a Shapeshifter

Laura Musambayi’s story about MS.

The files in the archives of my memory are divided into pre- and post- MS. Only, not when I received my diagnosis so much as when the disability began to accumulate and the symptoms became vociferous.
I refused to create camaraderie with my disease. There are people who have named ‘their’ MS, or have some sort of memorandum that, in their minds, allows the disease this much leash on the premise that it will in turn allow them that much freedom. I could never do that. It felt to me as though personifying MS would give it way too much authority. As though it merited to make requests and be acquiesced. I knew it would not return the favour and so determined, from the get go, to let it know it was unwanted then give it a wallop.

I was a vivacious 15 year old when I had my first attack. I went to bed with a mild back-ache one night and woke completely paralysed from the waist down. I couldn’t tell you where my feet were while I lay in bed. I had also lost some vision in one eye, but didn’t know it until the neurologist came to examine me in hospital. Since MS can rarely be diagnosed at the first attack, I was discharged with a preliminary diagnosis of transverse myelitis. None of my doctors could predict the prognosis and the watchful waiting, or supervised negligence (as we sometimes call it in medicine) would have killed me if I didn’t find strength in God.

I went home and scoured every medical book I could find. Three years later, I called my doctor and said to him, “I think I have Multiple Sclerosis.” To which he replied, “You’re 17, and an African who’s grown up within the tropics. It’s unlikely. Why don’t you come in tomorrow and we’ll talk about it?” The following day I called him from the hospital. I’d had my first relapse! I cannot exhaustively describe the psychological and emotional toll such an abrupt shockwave causes in the life of a teenager. One minute, my most immediate concern is how to survive maths class on a sultry afternoon, after an ugali lunch, the next minute I’m sifting through career options for one that could accommodate a wheelchair. Even though I had technically diagnosed myself, on the day I received the confirmatory test results and for a few weeks thereafter, I had an existential crisis daily that closely bordered a complete nervous breakdown.

As with any chronic, debilitating illness, Multiple Sclerosis causes one to introspect a lot more than they ordinarily would, multiplied by the number of hats one wears. Parents with MS more than singles, employees more than students. Nevertheless, the worry is absolute and overwhelming for all patients alike. From the day I received my diagnosis, my thoughts shifted to adapting in a way that would let me live my life as I best could without giving into the MS; I became a sort of shape-shifter.

It’s all in Your Mind

The first time my uncle told me this, I told him he clearly didn’t understand anything about MS. As it turned out, this is the maxim I live by today. My MS lesions are literally in my brain (well, the spinal cord too) so there, it really is in my ‘mind’ and I have the MRI to prove it. What he meant though, was that all the battles I would ever engage in life would be won or lost in my mind way before I got physically involved in them. The mind is your stronghold, galvanize it.

I almost gave up on my dream to go to medical school, but I went anyway because I decided from the outset that I would adapt in whatever way necessary to complete the training. I almost never started the first MS support group that ended up being this society under Kimani’s leadership, but I couldn’t imagine someone else feeing as lost as I did after I received my diagnosis. Had I given MS a name in my life, I would never have attended an ivy league university nor applied for a competitive yet demanding job I knew I’d excel at, nor presented at a conference at the UN. I would have demurred from writing plays and acting or mentoring younger girls. I am now working on a project to launch an extra-ordinary children’s library, in a very unlikely place, doing unexpected things. I have found that God gives grace to will and to do good, however much you’re able to do.

I , however, have had to learn what it means to put L’or first. Kicking and screaming the whole while, I had to realize the importance of a balanced life, especially in the face of an autoimmune disease.  I’m a Type A personality, which means I’m at my best when there’s a wall to walk through. If there is anything to be conquered, I’m game. If there’s nothing, let’s look again then conquer it. That young girl MS found in me has become a smart young lady. Finding a way to reinvent herself every time MS takes one thing from her and keep going, as many times as she will have to while there’s still breath in her.

Initially, the relapses I suffered left almost no traces of disability but overtime, the progressive physical losses have necessitated adaptive mechanisms. Sometimes I use a cane, but will never wear a heel less than 2 inches. I refuse to compromise on my style and fashion. By the by, the heel prevents falls due to my bilateral foot drop.

I recently had to switch to a gluten-free diet, but because nothing works like excess, I switched to a paleo diet altogether. The change helped to get me out of the depths of a relapse I had been unable to shake off for 7 months, the longest I have ever had. Nevertheless, I find ways to spruce up my chicken Caesar and enjoy my green smoothies so much, my friends sign up for the diet.

Throughout medical school and in my newly hatched career as a doctor, I’ve learnt there will be days when I cannot go into work, or cannot work the full day. So on the days I can, I take a full swing at life and gobble it in spade-fuls. When I’m unable to, I roll with it until I it passes, and it passes faster that way. Accept that every cumulative disability deserves, and will demand, mourning until it is grieved, and that is OK. It is normal. While you’re at it, find a healthy way to express your pain and tell your story. I’m currently using photography to describe the limitations that characterise MS.

The problem with a chronic illness, though, is that it affects more than just the afflicted person. My family and close friends would tell you, if they weren’t so proper, that they too have MS. On the days when I have more MS than will power, they have had to be real soldiers, close ranks and come through for me. It’s not enough to have a good support system, one must also utilise it.

Many people don’t know this, but I am actually an introvert. My talkativeness throws them off. A talkative-Type A- introvert. All things considered, though, every aspect of this weird combination has served to make me who I am today. It was in my moments of introversion that I conceived the idea to start the MS Support group, but only the Type A could work on the organisational details. The talkative had to engage various professionals across all walks of life and cadres of the medical field, to present the idea and get them involved. We each have a unique platform through which we can change the world around us, MSer or not, embrace it and make a positive difference.