I got a bug to write. I was filling out a Google profile, and it sort of merged into this blog post. So without further ado:
I’m a 30-year-old guy living with multiple sclerosis (MS). The disease ravaged me pretty hard; it was 10 months from my diagnosis to me being in a wheelchair full-time. Then the tremor set in. There’s more, but I won’t bore you with the details.
I have tried just about everything to slow down or stop my disease progression. I’ve been to Costa Rica to have veinoplasty performed.I have taken a number of varying “disease modifying therapies” (DMTs), both Rebif as well as (though short-lived) Tysabri. I then had one of the foremost neurologists in Canada look at my MRI, and he counseled me to avoid Tysabri as it was still new on the market and there had been some… Incidents. His recommended course of treatment, however, was just as aggressive as my disease; chemotherapy. First it was a drug called Mitoxantrone. Piece of cake. No side effects. Was once every three months. But again, it was short-lived. There is a lifetime limit to how much mitoxantrone you can be dosed with. After nine treatments, it was on to the next monster; cyclophosphamide. this is a far more aggressive antineoplastic, used in a variety of cocktails and to treat everything from breast cancer to pancreatic cancer. Neurologists like to use it to dampen your immune system and it has been shown to have some beneficial properties to those afflicted with MS.,. But don’t think for a second that it doesn’t come rife with side effects. So, I was in chemotherapy for I think roughly 3 years. And then I was forced to discontinue so that my red and white blood cell counts would return to normal in preparedness for open brain surgery. I underwent a procedure called “Deep Brain Stimulation” (DBS), a two-part procedure. Where I underwent open brain surgery for roughly 6 hours, fully conscious (I think you need to be conscious for any brain surgery). My neurosurgeon then performs “stimulation” by connecting a lead to my left thalamus to control the tremor on my right side, running electrical currents directly into parts of my thalamus that would eventually be wrapped with an electrode inserted into it to transmit the electrical signal that would no longer be routed to the proper pathway by my brain on its own, and instead would be routed through a neurostimulator that I had implanted the following day in the second, 5-hour portion of the procedure (for this, i was put under twilight sedation). So now, when I hold up my right arm, the synapses that are consistently being fired by a my brain are now being routed through a device. A device that is actually chock-full of side effects. The cool thing about the neurostimulator is that I can turn the therapy off. Literally, the second I do, all the side effects that it brings on disappear. I’m not joking when I say it’s pretty serious; I can’t at all speak French when the stimulators on. Not that I can do it very well, but it’s far more strained when the therapy is active. I can’t roll my R’s. I can’t sing (I could never sing well,, but but when the damn thing is off, I’m either rockin’ out to Rage Against the Machine or macramé’d to my sofa, pathetically curled up what can only be called a big ball of emo.
Okay, everyone’s waiting. Big changes. Again.
Malissa and I are no longer seeing each other. It’s a tale of woe, mistakes being made on both sides, not many breakups are easy. I only hope we remain friends. But the rest is between us.
My days living in “Le Forest Hill” are coming to a close. My oratory view is going to be a thing of the past, but so too is my enormous rent payment and borderline unmanageable on my income alone. It’s coming, before I know it, my 30th birthday will come and go and then I’ll start making my way to 31, but after going through in the last year, I finally put some serious and thought into what I need to do to best manage my disease, my responsibilities, and the relationships that I’ve been building over a lifetime. And so; I’m coming home. I’m moving back in with my mother. The truth is, she’s pretty astounding woman. Straight up, you can easily describe me with two words: MAMMA’S BOY. It’s sad but it’s the truth. I was missing a brother to beat me up or let me hone my fighting skills on him. I am what I am. So now, the challenge is finding an apartment that suits our needs. We are going to look at a prospective place on Sunday, tomorrow. Hopefully, it is everything we need.
While Malissa and I were dating, I repeatedly shirked my responsibilities as a friend to many, as a VP to the Tristan WilliaMS MS foundation, my family, and my friends. This was not her fault; I got so far entrenched in our relationship, in part because, after being single for five straight years, it was novel again. In addition, well I’m not going to lie; I missed someone wanting me.
My way forward though, I think is to be one of bachelorhood. The problem is, if I start dating somebody, I stop taking care of myself. And this in the end only kills my independence. I recognize and accept that I need help, but I do also need to challenge myself. Every day. For the rest of my life. Because that’s how it is for me. Wow–a wave of serenity just passed over me. I know I always say this, but I need to write more often…
I’m likely going to disappear again until the move is done and things get settled. My solemn oath to all you people who read my drivel is this: expect more drivel in the near future. And more often.
Enjoy the closing days of summer… Not sure what happened there!