A harsh letter to my MS

Multiple Sclerosis,

You’re here.

Not residing anywhere else but here, inside me.

Eighteen years, and counting. Probably a lot longer if you really want to trick my mind into asking harder-to-explain, unrefutable questions.

Why did you choose me when there were so many other people you could have picked?

You were probably out for vengeance. I had tempted my body into working too much, playing too long and resting too little.

You might have thought it would be fun seeing me cry at the bottom of the staircase after coming home from work. There I was, with my coat still on, in a dark hallway looking upwards with tears rolling down my cheeks. The seventeen steps towards my bedroom looked like Mount Doom, or some obscure mountain top nobody knew existed.

You bloody made me have to sleep in the downstairs living room for an hour before I had energy enough to go to bed, clothes still on, without dinner and without a shower.

Did you truly believe  you could watch it all unfold without any sort of divine intervention?

Some guidance that everything would be OK?

Had I not been living with enough illnesses already that you had to attach yourself to my central nervous system?

MS, considering you are neurologically challenged, let’s go over a few things again, just for old time’s sake.

I had abdominal surgery for endometriosis a mere three months before you ever so rudely crashed into me. You took over my left side: my arm, my leg, and worst of all, my eye, ear and face. You created a new horizon of pain, putting me on the path of one medical specialist to the next who could explain your Insensitive symptoms, and to feelings I never believed I’d have.

My GP, old as he was, thought I had severe ear infections for five months, and sent me to a special ENT hospital twice where I was told that my eye, ear and face were just fine. I knew differently though.

You, MS, you just let it all play out like a Shakespearean drama in a burning Globe Theatre. You just had to drag it all out, fire and brimstone included.

When I was told six months later that this was trigeminal neuralgia caused by MS, a new future filled with endless, dark days of excruciating, piercing pain arose. It turned into blaming medical doctors who had no idea what stabbing eye and facial pain every few seconds even felt like.

So, I dare you, MS.

Who gave you permission to redirect all that was good in my life?

You changed my relationships, professional life, and upset my family and friends as if it was your prerogative only.

Two of my closest friends blatantly said they couldn’t handle my illness. One ran off; the other one I had to let go because MS proved our friendship was based on a lie. You created new ground where I had no claim to or say in.

My family? They’re my rock, my everything. Others said things that pulled the rug from under my feet, and made me tremble inside of hurt worse than any physical pain.

Betrayal was when I was told “stop wallowing in self-pity”, or that “taking all these new medicines could not do any good.” It was nothing short of conditional love, and almost tripled the physical pain, especially when they refused to educate themselves. They are still not keen to ask what it feels like to live with a misfiring brain.

MS, you really have no idea of the damage you created when you left me on the ruins of your castle. In fact, Sigmund Freud once said “Anatomy is destiny.” It is as unpredictable as it is varied, and in need of its own psychoanalysis.

Where was the manual that showed me how to adapt, accept and live?

There were none.

MS just hits you like a ton of bricks, and the rest you have to figure out yourself.

No two people are alike with MS so you created 2.4 million special specimens around the world. You made each of us different. MS has 50+ different symptoms, and multiple sclerosis just wants you to know each one can become staple food, and go through it alone.

The worst thing of all was having to retire at the age of 36.

I loved my job, I loved working hard, but you took that away from me.

It’s no fun having to take anti-narcolepsy tablets like they are candy. At work, I mixed them with energy drinks like Red Bull. Without them, I was unable to make it through the day, and I would fall asleep after 2 or 3 hours.

So, yeah. MS.

You were ignorant, selfish, disturbing, confronting and maybe just a tad evil.

But I’ve shown you that I wouldn’t let you win.

No way.

I never asked for you.

I never wanted you, so I sure as hell want you gone. For good.

I figured you out though.

I got you… yet I won.

I won fantastic new friends and a totally new philosophy on life.

I live with a special carpe diem, not that you care though.

I won love where I thought there was none. And where was love, you spoiled the crux of life.

But, not that you cared anyway.

In need, you truly learn who your real friends and family are. I found trust in those that stuck around.

You don’t own me, MS, you don’t get praise for having me. No matter how bad you treat me in the future, I will own you instead.

You’re you, and I’m me. One thing I will never lose is the knowledge that I conquered you. Perhaps not physically, but mentally I am stronger than you.

You’re here to stay, but I won.

I won yesterday.

I win today.

And I will win tomorrow also.

(Posted in 2013 as A Poweful Letter to My MS January, 2014)