I looked today at Linda, and all she does for me with a smile, including the things she doesn’t tell me. I found out today that renting a portable oxygen concentrator to go to Japan for two weeks would cost $1,000. We don’t have that $1,000. She assures me she will find another way.
Last night, she was up, beside me I don’t know how many times, including when she had to tell me, “You can’t have any more pain pills.” And held my hand. Held my arm. And yet she wakes me, she moves me in and out of bed. She smiles. Why does she smile?
I am weak, physically weak and while emotionally stable I am like glass sitting on the edge of a table. I am starting to understand what the MRI and neurology conduction reports mean. You see, they didn’t send the electrical charge through my spine, only from my wrist, arm, elbow to fingertips and back, from knee to feet and back. Whatever demyelinization is occurring in my spine and likely in my brain isn’t the neural blocks and lost signals talked about in the neurology conduction report. It is occurring in my limbs too, like some invisible leprosy. And Dr. A. told me something I knew, that the next test is the one where they sink dozens, perhaps hundreds of needles into my quads and lower legs and start conduction testing each muscle. And to be quite honest, I have had just about enough information for a while about what is dying under my skin.
Because everything to do with nerves and hands and feet have nothing to do with my heart. It is failing. It turns out that while you can overheat every day, you actually need the heart to beat ALL the time, no matter how erratically. Sitting here, I had given up hope, but I just thought, “Why not burn them all, burn every electrical node connection from my heart to my brain and put in a pacemaker?” So, I’ll be a cyborg; I’ll be a cyborg who is around to watch Bones Season 3 with Linda when it comes out.
What am I? I am afraid to go to sleep because bed is where the pain seeps in, where it cannot be distracted. I hate the long nights of waking pain and the mornings filled with demands. And yet, even as I say, “I can’t go on,” I prepare for going on. Is this madness? Or is Linda there, helping me with a smile, madness?
Tonight, carrying out the dishes, she dropped some cutlery and I said, “Looks like you’re catching what I have.” And as she laughed I shut my mouth. What a horrific thought, that people might get this by being around me. That brought me back to the secret stone that I can’t put down, and slip out to rub my fingers over in silence: Why me? For a second I remembered a time when getting the flu or cold was the worst I feared. I slipped into a time when Linda taking the dishes out to the kitchen meant I was washing them later. Until a monster grew within me, or is it me who is the monster? Who has turned into a monster? Do I live around the disease or do I live the disease?
I am afraid….it sort of comes with the disease and being human. Courage is being afraid and acting anyway. So who has greater courage; me who fears but continues or Linda who shoulders all of the mundane, losing sleep beside me without a complaint while she sees what she loves most in all the world in pain, losing hope, fading. Does she lose hope herself? Does she fear? She must. My night care worker told me, “You may think you have it rough, but you don’t have to watch it all, and still be there.” No, I don’t. I can’t escape, but Linda can, but hasn’t.
The greatest thing in life is to make the one you love happy. How can I make you happy Linda? There is so much I can’t control, even my movement, my breathing, my pain. There is little I can DO but try to be calm, to talk to you, to listen, to come up with ideas, to watch things with you, make little movies for you.
There are just some days when we feel like a vase that has been broken and glued together. Today, all I can feel are the cracks.
18 hours ago