When I started this blog (oh so long ago) my full intent was to have an amazing cooking blog. I was a bit obsessed with them at the time, and also, I didn’t really cook. As I’m sure I mentioned in my earlier posts, I worked in food service — so the need to feed myself was minimal. I just ate at work. I enjoyed those early blog days — finding recipes, and taking food photography (harder than it appears, by the way). Now, it seems to funny to remember a time when I didn’t enjoy putting together a meal.
Then January 21st, 2013 rolled around. And my whole world sort of — fell into chaos? This blog became a place I came to scream into the void (or at least, that’s how I thought of it). Not really diary (I don’t share everything!) but also a little without a direction. Whatever came into my head became what I wrote about. It was comforting, and cathartic, while also being amorphous.
Then, this year, I entered unemployment. I can’t call it retirement — I feel too young to qualify for that. I should be working, theoretically. But … and here’s where I get a little gun shy, because it’s admitting weakness, and I’m not a giant fan of that … I found in my retired unemployment that the things I thought were caused by my job (unending fatigue and ennui, cotton brain, a lack of focus) didn’t go away. I chewed on this idea for weeks. Maybe a few more days of rest? Maybe … maybe ….
I turned to my husband with eyes full of tears and confessed that I thought it had to be the M.S. With it articulated came the wave of paralyzing fear. I am only 37 – in how many ways will this disease continue to eat away at my life? He told me not to panic. That we would get through it all together. He said I didn’t have to go back to work until I felt ready. (Which – inevitably – made me want to go back to work yesterday).
Multiple sclerosis is a funny disease. It erodes your body from the inside, insidious in its invisibility. But we aren’t alone – those of us dealing with our own unique and debilitating battles have a huge community that we can tap into if we choose. I’ve surfed on some of the websites, I’ve read the conversation threads. Sometimes they are comforting — hearing someone else articulate something you thought no one would ever understand. A lot of times they are deflating. Like a very long, unending war that we will inevitably lose.
I’ve realized over the past four plus years, that my best, strongest and most reliable weapon in this fight is my mind.
Listen, the green smoothies are great. And I love exercising. It has deeply changed my quality of life.
But the Arkenstone of it all? Thought.
Dealing with medicines and doctors and all the wildly “intoxicating” things that go hand in hand with having an incurable neurological condition is made infinitely easier if you think about it in the proper context.
I learned this from my husband. A man who has gracefully handled his own cross — that of M.E.N. type 1 — since the tender age of fourteen. He smiles and nods and contemplates. He doesn’t panic. He breaks things down to their simplest components and examines each one with a discerning eye. He finds — even in the face of seemingly insurmountable odds — the shred of hope worth holding onto.
So in that spirit, I thought I’d give a little more shape to this blog. I figured — there are a bunch of M.S. sufferers out there, and people who love them who can’t understand. What if I write about the experience, and trying to see it through a filter of positive thought?
Because it’s easy to be glum and sad when afflicted with something no one can see. It makes you want to yell at people — shake them. Don’t you understand? I have M.S.!
They don’t understand. You look pretty normal to them.
But … but … But! I am grateful that I am still able to interact in a world without a wheelchair. I had a cane for a about a year — her name was Lydia (because, as I’ve said a thousand times, I felt that 34 was too young and I couldn’t call her a cane). It changes how people look at you, think of you. Speak to you. Yes, I am frustrated when people treat me as though nothing is wrong. But then, after a deep breath, I am grateful that I am healthy enough at this point my disease, that people don’t know.
Yes, having M.S. is hard. I have just as many bad moments as good moments. But M.S. doesn’t mean the end. It doesn’t mean that we are no longer capable of doing great things. It just makes it a little bit harder for us. And maybe … the accomplishment a little bit sweeter.