Facing the Mornings in My Life With a Spinal Cord Injury

I hear soft chimes. It’s my alarm. I look at my phone and it says 5 a.m. I hit snooze and close my eyes again. I start to wake up and I begin noticing my body. The way it feels. Starting from my feet and traveling up to just below my torso, I can feel tightness in my muscles. A tightness, spasticity, that makes my muscles seem like I am no longer made of tissue and blood but that I am made from rocks. Very, very heavy rocks. Then I experience this tingling energy, neuropathy, traveling up and down the same areas as the tightness. It’s not a nice tingling, one akin to feathers on my skin but rather one that burns, like bees are swarming up and down my legs and body underneath my skin.

Nine minutes later, pling pling pling goes the phone and I hit snooze again. I have to get out of bed but how? What’s the strategy here? The neuropathy? I will simply have to deal with, there’s no real strategy to fight it. The spasticity?  I can loosen the tightness, at least enough to get out of bed.

Should I wake up Robert so he can bring me the hot water bottle, the rice heating pad, the concocted tea he makes for me every morning? This means I would have to wake him up. I hate that so much. He works so much and his insomnia is so bad. I’m not sure if he fell asleep a few hours or a few minutes ago. Maybe I should pull out the TENS machine? Those tiny zaps of electricity will loosen these muscles. Should I try using the heating pads I can lay across my body? But honestly, none of these work as well as the deep heat and the tea. I close my eyes and re-assess. How bad is it today? How heavy are these rocks in my body?

I really wish I didn’t always have to depend on my family to help me. I wish we had enough money to hire a caregiver that could come by and heat up the water bottle, the rice heating pad, and make the tea. The tea helps loosen up my muscles from inside my body. Better yet, I really wish Medicaid would pay for this caregiver. I mean the ADA was passed to help increase my independence. But if I can’t get out of bed, how can I be independent? It wouldn’t cost Medicaid that much. If a person needed to be paid it would really only be an hour of work. Fifteen dollars a day. That’s what it would cost to help me get out of bed.

When someone is diagnosed with a disability, Medicare and Medicaid work together to pay for what they need to have independence. What Medicare doesn’t pay for, Medicaid will cover. Sometimes. For me, medical expenses are always covered but other things such as caregivers, underpads, and other expenses are not.

When we lived in California, Robert was approved for 90 hours a month for caregiving. This was so great because it allowed him not have to work as much so he could have the time to help me. But Medicaid is different in each state. When we moved to North Carolina, while the medical coverage remained virtually the same, other benefits fell short. Caregiving is only provided if you cannot get out of bed. How is this supporting my independence?

This is what I think of every day within the first half-hour I wake.

My pain is bad but it was so much worse yesterday. I think I can get out of bed. I have to get out of bed. I really have no choice. I have to play a show tonight with my band and I have an upcoming DIYabled event that I have to organize. Less glamorous but far more crucial, I have to plan out taking my morning dump.

This is a daily task I really do not feel comfortable talking about but it is my reality, as it for a lot of folks with a disability and not only those with a spinal cord injury. After I had my spinal cord injury, I lost control of my bladder and bowels. Hence, I now have to plan out what is called a bowel program, which is a nicer way to say I have to schedule when to take a dump. This event can take anywhere from half an hour to an hour. I can’t rush that process because if I get up too soon… well, let’s just say that stuff everyone needs to eliminate from their body, number 2, will end up all over me and I’d be very sorry. Naturally, this is something I want to avoid at all costs. When number 1 comes, it’s not so hard to deal with but number 2? Nothing like having number 2 all over yourself first thing in the morning to ruin the beginnings of a great day.

Slowly I pull myself up by pushing against the force of my body. Grunting softly in pain, I sit up. Now I must move my legs. They are heavy. The muscles that still work have to make up for the ones that don’t anymore. I’m lucky because I do have some muscle function still left in parts of my leg. Using those along with my fully functional arms, I lift my legs and they flop off the bed. I transfer from there to my wheelchair. I am privileged, lucky, fortunate — whatever you want to call it — because I do have some of those muscles and my arms to help me accomplish this. I roll myself to the bathroom to get to the bottom of this daily chore. Today I decided to read a bunch of articles I haven’t had the time to read. Anything where I can lose track of time.

I’m almost done. I really hope Robert is awake now. I get up, brush my teeth and look. He’s not. I want to let him get some sleep while he can. I will have to heat up water for the hot water bottle, heat up the rice heating pad, and make the tea myself, all in a state when my body screams no, no, no! I heat up everything up, one by one in the microwave. I make my way back to the other room to lay on that heat, drink the tea, and meditate, visualizing warm water flowing through the areas of tightness. It’s 9 a.m., Robert is up. I get up and start to plan out my great day, only to start it all over again tomorrow.