It’s been thirteen years since my life changed. I can pinpoint it to the very day.

Part of me can’t believe that I’ve lived with multiple sclerosis for this long. The journey with this disease can’t possibly gone on for that long? It seems like only a short time ago, I was preparing for my first MS Walk. I was anxious and worried to walk the three kilometre walk because I had never walked that long in one stint after being diagnosed with the disease.

I remember the day that I woke up unable to walk or care for myself. The fear from that day feels at once far from me, as if I had to reach it through a mirror, and close enough that if I wished to hold that fear within, I have only to wish for it.

I’ve spent thirteen years trying to fight against my body, to get it to fucking move when I wanted it to. It was easy at first. I altered my entire life to fight against a disease I’ve named Max Shadow. There was Cybil Paulsen at first; I was born with spastic cerebral palsy (I also name my disability). Occasionally, they’re joined by Brian Fonteque and Molly Frankford. My husband says that my mind is a big place and he’s so right. There’s a lot going on in there.

The fact that thirteen years have passed, and it only feels like five is a good thing. I am tired of being tired, exhausted from being in pain and fatigued from trying to figure out a body that is sometimes a support system and other times a mine field. But I’m still going. Thirteen years ago, it felt like I could beat MS and take back control of my body. Today, it still feels like I can beat MS most of the time, but on those other days, I’m having to fight harder against a body that I no longer know.

In the beginning, I was only on Backlofin and Copaxone. Now I’m on a whole list of medications. I’m pretty sure if I speak out loud all of my medications one after the other, I will summon some kind of mildly ticked off spirit. My body is tired and I’m having to fight more. I fight to walk from the moment I get up and my legs are so sore, they can barely hold me upright, the pain is too great.

Rather than walk on my own like I did in the beginning, now I walk with a cane. I’m looking at having botox done to my legs to release the spasms and relax the muscles as well as another medication that will help with the severity of the spasms that I get. Max Shadow focuses on the upper body and Cybil Paulsen focuses on the legs.

The other day I had a talk with my neurologist, and she asked me to describe the pain. I told her that it was like my very bones ached, it ran that deeply. I must hold on to things for support, take my time to move around. I even have to be careful how I eat or drink, my throat has this nasty habit lately of closing when I try to drink too quickly.

I don’t know what the MS will throw at me in any given day and I have to be okay with that; I choose to be okay with it. It’s my journey. I resolved a long time ago that this was my life and I chose to live it, no matter how or what that entailed. I’m here on a path and I can choose which direction I go in. I just can’t choose what happens to me. I have to find the balance in that.

Here is to thirteen years of learning how to conquer mountains, find my voice and learning to love myself a little along the way. I don’t know what the next thirteen years will bring, not even the cards know what is for sure. All I do know is that I have truly lived during the past thirteen years. I plan to go on living beyond what I think is possible.