Having MS sometimes feels like a life of quiet desperation.

Right now I’m in the throws of it, having struggled quietly for weeks. Not sure exactly what’s wrong, not sure how to fix it. Just picking up the pieces and mending everything over and over again. Sometimes I feel like I’m losing my mind. I wonder when I lost it …. Was it fast and I just adjusted on the fly or has it been slow- little bits over and over again until I look in the mirror and don’t know myself anymore. Don’t know what to say or do. The weight of life pressing unrelentingly on my shoulders.

If you look up multiple sclerosis, amongst all the technical stuff (myelin sheaths etc etc) is usually a list of ‘probable’ symptoms. But as every article says, in one way or another, no two people’s MS is the same. So the symptoms vary, the severity varies, how each of our bodies react is different. Treatments, therapies … it’s all sort of a crap shoot. When you find something that works, hang on for as long as possible. No matter the potential side effects. Just keep doing what you need to do to live. I mean, that’s the gig.

I write a lot about how life used to seem black and white to me. And then I got MS, and everything became a blur of gray. Living in the gray was and continues to be uncomfortable. It makes me angry. I have good days and bad days and I ebb and flow between hopeless and hopeful. I smile a lot when I don’t mean it because it makes people uncomfortable to have to face my realities. It’s easier for healthy people to take me at face value and not lose any sleep. Besides, they have their own troubles, their own difficulties.

It’s fucking lonely.

I don’t know how to be a caretaker or a support person because what I used to think was good isn’t good for me. And so I try desperately to have compassion and grace for the people who don’t understand, can’t understand. Being the sick person and being the person who watches from the sidelines — those are two very different roles. When my mother was dying of cancer I know that she suffered unbelievably in the privacy of her own room, by herself. She made Herculean efforts to appear to all of us as though she was okay. But I think I knew she wasn’t okay, and I didn’t say enough because I was trying desperately to respect her humanity. Even though I understood the indignities of being sick I didn’t understand facing mortality and I certainly wasn’t going to make any assumptions. I allowed that space between us out of respect for her -or so I told myself – but probably also for myself, because I didn’t know how to bridge that gap without fumbling and making untold amounts of errors. Would she have felt less alone if I’d said something? Or would it have made her feel more vulnerable? I am not sure. I don’t know.

Right now I feel let down by my body, betrayed and wildly out of control. I don’t know what signals are being sent, if I’m getting them correctly (neuropathy) or understanding. I think I know and then find out, I don’t. I’m so tired and so sad and resentful. And we are living in a tiny house where neither one of us feels as though we have any personal space, and Eli is in peak terrorist mode. It’s been a really rough January. We are limping into February, wounded and defeated. Everything feels impossible.

I wish that the sadness wasn’t so all-consuming. So utterly palpable. I wish for so many things. And sometimes it feels absolutely impossible to remember the good. To remember that time is the great equalizer. It will continue to tick by, whether I’m happy or sad or defeated or triumphant. And we will continue to move through this life, this one and only precious life we have been given.

xox, g