Thief of Sleep

Pain is a thief of sleep. It’s 3:45am and the arthritis in my thumb hurts so much that I woke up because I can’t find a comfortable place to put my hand. I’ve had a couple of steroid injections into my thumb joint. They’re excruciatingly painful going in - and for the first day after- and you can’t have them too close together, but the effect wears off faster every time. I have had so many steroid shots so many places - various locations in the ankles and feet, knees, the hip. The hip is a particularly horrible procedure that involved inserting a very long needle into the space where your inner thigh joins your body to reach deep into the joint. Kate was waiting outside the room for that one, and she was able to watch the whole thing on a screen showing the mobile X-ray they use to guide the needle. I’ve also had many in various parts of my spine. I’m good with pain - if you do ballet for years you learn to cope, to breathe through it - but the six injections into my lower spine, three on each side, hurt so much that I had to fight the instinct to push away the doctor and run. Sweet Dr Bax, who is really good at these, had to hurry the last two because he could see I was losing control. Dilo saw that I was online and messaged me that “there are a lot of homeless and drunk white people” on the street in Midtown. I pointed out that it’s Saturday night, which explains the drunk people. I don’t have to explain the homeless to Dilo, who I met when he was a homeless youth at the Neutral Zone more than 20 years ago. Dilo had just arrived from St Croix back then. I bought him his first winter coat and filled out his Fountain House application which got him his first apartment. It’s 18 degrees out there and the fact that people are choosing the street in this weather says volumes about how unsafe and frightening the shelters are. Marley is asleep on top of me, her rival April is asleep by my hip, and the others are curled up various places, except for whoever is coughing up a hairball. It’s not just my thumb that hurts but also the wrist I had surgery on, and the shoulder they want to replace, and my neck where they can see something on the MRI but don’t know what it is until this week’s CT scan. It’s putting pressure on the nerve so that half my face goes numb every time I turn my head to the left. I am going to be really unhappy if they have to operate on my spine a third time, although my surgeon is a really kind man and both previous surgeries fixed what they were suppose to fix, which is often not the case with spine surgery. It seems that orthopedic surgery is more like construction than anything else. If they can visualize the problem they can fix it but when people have vaguer back pain that is not clearly mechanical, surgery often doesn’t help or makes things worse. My first spine surgery was to take pressure off the nerves to my legs, which was causing so much pain I could not take more than two steps at a time. When you looked at images of my lower back, it was clear even to an untrained eye. My very narrow spine, the same issue my mother and uncle were born with, had no room for the junk that accumulated with age, pieces of ruptured disc and bone spurs etc. The solution to that was to remove three lamina- the bumpy bones on the back of the spine- leaving the spine open on one side to create room. It was a huge operation, days in the hospital with bloody drains dangling all over the place, but I was able to walk the next day. I slowly made my way through the hallway with a physical therapist who told me how his disabled child had inspired him to go into physical therapy. He told me a lot more, people just talk to me, and then told me he wasn’t supposed to open up to patients like that. I assured him I had nobody to tell and wouldn’t anyway. Recovering from that surgery at home alone in my house with stairs both inside and out was a massive struggle. I thought of my mother who got the surgery way too late after the pressure on the nerves had made her barely able to walk with a walker. Nerve damage like that is not reversible- if they have been compressed for too long all the surgery does is prevent it from worsening. My uncle, who had insurance as a UT employee, got the surgery earlier but maybe not as competently, and was left so impaired that he drove an adapted vehicle and has now decided to stop driving altogether, a huge decision in Knoxville TN. I worry about him on his own down there, although I know his neighbors look out for him. They have called me a few times to tell me he had stopped collecting his mail etc. The mail is in a central area in the middle of their cluster of houses and he just couldn’t get there. Trying to be helpful, the neighbors tried hanging it on his front door not realizing that he is homebound so he rarely opens that door. Pain has shrunk his world to just that house and the internet. The second spine surgery was on my upper spine, with the incision in the front of my neck so they could reach in and nab a couple of busted discs, replace them with spacers, and insert a plastic cage filled with bone graft material to fuse them in place. That took pressure off the nerves that lead to my left arm and hand, helping with pain and numbness on that side. It was a smaller surgery- less time in the hospital and an easier recovery, although the neck brace that held it still for weeks while the bone graft took hold was tremendously uncomfortable. When I was younger the pain wasn’t the electrical zapping pain of nerves but the deep ache of autoimmune inflammation in the joints. My hands swelled until my fingers were sausages, barely bendable, and my knees leaked fluid creating mini water balloons under the skin. Once my old rheumatologist and I were arguing about BDS when he went to inject my knee and he jammed the needle in so hard his shocked nurse exclaimed, “Doctor!!!” Newer lupus drugs mostly keep that in check, although it’s a tightrope between taking enough to control the attack and triggering the worst of the side effects like vision damage. My mother, freelance and uninsured, was a model for managing your pain silently and alone. I can’t imagine how much it must hurt to ignore a lump in your breast for years until your breast is visibly deformed. She was determined not to go get health care she could not pay for. She thought of that as stealing though I told her with my AIDS activist point of view, “health care is a right, you shouldn’t have to pay for it anyway.” I am OK with “stealing” from the man, particularly if it’s something people should have anyway- food, medicine etc but she could not bring her radical politics to bear on her own life, and it killed her.