Gratitude 33/40

On the inside of my right arm are two tiny spots, as if a macaroni-sized snake bit me. The bites came from needles drawing blood. On either side my skin looks like sandpaper from bandages. This is the only physical sign I have that things might not be okay.

The rest of my symptoms hide from public view. If you know me, you can tell that I sound different, that I’ve lost my ability to make certain sounds like an Afrikaans RRRR or G. If you sing with me, you will hear I can no longer keep the tune. If I read bedtime stories with you, you can sense it strains me and that I stop reading much sooner than usual. If you work with me, you can tell that I have only a pinch of the energy I used to have. If you dine with me you will know that chewing can be difficult, that I choke more than before, that I’m sometimes too tired to talk, that I ask to be burped. If you walk with me, you can see that half a block can have me out of breath. If I didn’t tell you, you wouldn’t know that there are places in my mouth that my tongue can no longer reach, that I must help my left leg to get it into my jeans, that there are moments when my hands are too weak to open a zip-lock bag. And that at times, all of this scares me.

Today I went to get more bloodwork done. My muscular neurologist ordered ten different tests. When the kind person behind the counter tells me that the cost is $8,000 and my portion is $1,000, I fall speechless. Just yesterday I paid $650 in December bills. My friend with MS told me I should expect to pay the most in medical co-pays, but being told something doesn’t mean that you can handle it when it happens.

I walk out of the bloodwork place in a bit of a daze. Most likely because half of my blood stayed behind in glass tubes, but also—all of this. I am faced with two distinct new realities. My health is changing and to manage it is going to cost a lot of money. To be more accurate, based on my current estimated income and expected medical expenses, it’s going to cost over a quarter of my income. How much I will struggle physically is an unknown.

Yikes!

For two hours my mood drags like a wet gown on the floor of the world, picking up bits of belief that support a world view of scarcity. Soon I sit with too many sad questions. “What if I didn’t get ill? What if I never left my design job and money was abundant? What if I lose my ability to hold a pen and crosshatch?” I walk out to sit under a tree, hoping stillness will quench these questions. It doesn’t. But as I walk back, a word a friend sent me pops up: abundance. I love the idea of abundance and I decide to give it a try. I look at my life for evidence of abundance and new “what if” questions.

Here is my starting list:
First, last year I worked for a client who not only paid us exceedingly well, they were also understanding about issues related to health. What if there were more well-paying and compassionate gigs coming our way? What if I can make enough to cover costs, save and be super generous?

Second, several friends have helped me financially and many more practically. I support several people too. What if I can trust that the world will continue to care for me and I for it?

Third, I know folks with autoimmune diseases that live stellar lives. What if I will live a rich, full, beautiful life where I experience everything I can, give everything I got, love everyone I know into greater arcs of freedom?

These “what if” questions make me feel much better. And that in and of itself is medicine.

. . .
Image: Close up taken at MOMA this Fall. Is it a Klimt?