lydia

Yesterday, despite all my internal struggles, I bought my first walking stick. (I can’t call it a cane — not yet).

And I named her Lydia.

I don’t know why.  It just sort of came to me as I climbed into the passenger seat of the man’s truck.  As though she was introducing herself to me.

And today, for the first time, I had a little help walking to work.  And it felt nice.  Weird, and surreal, but nice.  Because for the first time in a long time, I wasn’t filled with intense anxiety about losing my balance, or being able to get somewhere.

My co-worker also paid me the best compliment by telling me that Lydia is very nice, modern and sleek.  That helps.

I have good days — good weeks even, and then I have bad ones.  Stretches of days when my body seems to constantly fail me and things I had faith in crumble beneath my touch like grains of sand.  Having a disease like MS can be tricky — one moment you think things are on the upswing, you’ve figured it out, life is evening back out.  And the next moment — well, it all turns to dust.

I’m starting to understand it a little better – the signs that my body is once again in the grips of a flare.  And I suppose that’s a good thing — I suppose.  Each one is a little different from that last, and each one leaves traces of its most intense moments.  Remembrances for when the worst of it has passed.

Each time, a little more of my freedom of movement is erased.  Even if it seems minute, I know it’s happened.  And I’m still trying to figure out how not to be defeated by that.  So many people have words of advice, thoughts and encouragement.  And they are all well-intentioned and meaningful.

But it can be hard to accept when no one really knows what it feels like to be unable to walk from the bedroom to the kitchen without help.   How it feels to be unsure of your feet and your balance and the security and strength in your knees.  When your brain is so fogged and the fatigue is so intense huge chunks of memories slip away.  When fear runs like an undercurrent through life, bubbling and burbling like an underground river — ebbing and flowing with the fear of falling, the fear of slipping, the fear of forgetting, the fear of losing… your job, your husband, your independence.

It can get dark during the worst of times.

But there are also moments of light — a shining pinpoint in a canvas of black.  An upcoming trip, a long weekend — a soy chai latte from Starbucks.  A strawberry rhubarb crumble.  Sweet corn on the cob.  A good book.  A snuggle with Lucy.  Evita on Pandora.

Oh, and it’s the very beginning of football season.  Have I mentioned that? 😉