This Is My Life, So Don’t Call It A Fucking Journey

This isn’t a journey. This is my life. This isn’t a chosen path. It was inflicted upon me.

December 15, 2015, six weeks before my 36th birthday. The date is forever seared in my memory. Four words changed my life permanently, irrevocably.

“You have multiple sclerosis.”

I had an out of body experience because my brain couldn’t handle it. I didn’t know why I was in that room, floating above a doctor and someone who looked like me, talking about multiple sclerosis. Because I didn’t have it.

I thought it would just be a speed bump. I thought I’d go back to work soon and maybe stumble a bit here and there. But I had the overwhelming feeling that I’d spend the rest of my life in a wheelchair.

I fought against it. I was going to keep walking. It was weird how I’d just stopped, the week before, after lunch with my niece and nephew. But if I’d stopped that suddenly, I’d start again suddenly, right?

I’d just put my beloved Labrador of 17 years down, and for less than what I’d soon go through. I’d just left the church I’d loved and served in for my whole life, but realized I had to part ways with. A part of my life had just ended.

But I’d just gotten my Master’s, for which I’d worked too long and hard for nearly a decade, seven years after I walked. I’d just procured a job teaching public speaking at an accredited university, using my degree and doing some of my greatest passions — teaching and speaking publicly. I’d just procured another job, waitressing again, which I’d missed. I was comfortable in my day job, being a copywriter, which used another passion, writing. I was back in the saddle of being a workaholic, working three jobs, which I loved. I’ve worked since I was 14. Work has often been enjoyable, usually a nice distraction from my crappy personal life. So a part of my life had just begun.

But I couldn’t work again. Not my day job — I fatigued too easily to work full-time. But I tried for a few months, not making more than 12 or 15 hours a week. Good old FMLA. Certainly I couldn’t do waitressing now. I went in for two hours before I was diagnosed and fell three times. I tried walking again. I really did. It was laborious, even with a walker. I taught college for one term. Fifteen years of trying to teach college resulted in only a Master’s, not a Ph.D, and I only used it for one term.

My walking again led to falls, bruises, broken bones, and within a few short months, a skilled nursing home. I was barely 36. I couldn’t move below the armpits. I had very little processing time from inability to walk to diagnosis to wheelchair.

So a part of my life had just ended. Again. But not just a part. Who I was. I was confined to skilled nursing homes and assisted livings, unable to work, barely able to move, then given a diagnosis of fibromyalgia on top of MS.

And people insisted I be happy all the time. If I’d had a job or a family or something normal to complain about, that’d be okay. But complaining about my lack of jobs and family because of my sudden, debilitating diseases, well, no one knows what to say. My inability to bear children had been around for two decades; I also had endometriosis. But I was going to adopt until I was put out to pasture, several decades ahead of schedule. Still, no one knows what to say.

So they say stupid shit like, “Just think positive!” As if that’ll cure me. “You’re so brave!” As if I’m choosing this life. “You’re learning so much on your journey!” As if I’m taking a goddamn nature walk. On purpose. For the rest of my fucking life. I needed to be the happy cripple to make them comfortable, to give them a heartwarming story, to be an inspiration, but no longer a person.

So I started to write poetry again. I wanted to write about my life for the first few years post-diagnosis. But everything is post-diagnosis now. There’s no going back. I’d like to pretend it won’t some day consume my life, but this is my life now. I still choose to not let them define me, as I’m so much more than my diseases. But they do control my activities, and I really can’t change that. No amount of pain pills or caffeine will take away the pain and fatigue I feel every moment. No amount of lotion or cream will take away the numb yet tingly sensation all over my body.

My boyfriend is going through a divorce, and thus a really hard time after separation. He said the other day, during one of my all too frequent anxiety attacks, that we’re both just going through a hard time, and we’ll get past it.

I appreciate his optimism, but I’m not just going through a hard time. This is the rest of my life. Some days will be okay, some days will be horrible, and most days I’ll fake being well.

I’m still in a wheelchair, but it’s a cool power one (manual for when I go out with friends), and I’m in an independent retirement home instead of skilled nursing (I’m 39 now). I’ve been able to publish two more books since my diagnosis (finally using my degrees, huh?), make a YouTube channel and blog, and finally have a healthy romantic relationship. So, even though I can’t walk or work and my only friends (on the inside) are baby boomers or older, I’m doing really well.

My point is this: it’s okay if you stop walking. Learn to roll with it (pun intended). The best and worst thing about MS and fibro is that they’re so unpredictable, and while that part sucks, it does make us amazing at adapting to change and learning to zen. Being in a wheelchair isn’t the worst thing that could happen. Thinking your life is over because of it is.