The Nerve Of Those Nerves

As an advocate for disability rights and justice, I often write about my own experiences with various issues and topics. Naturally, I can only speak from what I know to be true for myself and recognize that experiences are unique to each person, whether they are disabled, chronically ill, or suffer from chronic pain. I believe that the stories we tell and share from our individual perspectives, albeit different, can open up understanding, compassion, and change within our society for all. This is the story of my struggles with chronic pain. Every year on Halloween, I do a photo booth in Asheville, North Carolina, where I live. This year, 2022, is the 20th Annual Halloween Cover Band Show. This is a DIY event that raises money for prisoners to have books to read. I have attended this event for the past 12 years, and I love it. It is like Christmas in Asheville, where you get to catch up with friends you haven’t seen all year. Plus, the costumes are always mind-blowing. I went to college for photography, and although I had no interest in dealing with the high art world, I love love, love taking photographs. I love photographing people, and I’m good at it. After I became disabled, it took me years to figure out how to continue to do what I love from a wheelchair. In 1999, the year I had my injury, digital photography was not as available as it is now in 2022. I had to wait nearly ten years before photography was accessible to me as a disabled person who was also poor. It wasn’t until 2013 that I began doing photo booths for this Halloween event and discovered how much I loved taking portraits of people. Before, my photography was documentary style. I photographed events, objects, spaces, and people in action, not posing for me. It was at this event I learned how to do this type of portrait photography and create a photo booth as a disabled person. The first year I did it, I had to scrounge on a limited budget. I found lights I had laying around my house, and since I had no backdrop, I simply photographed people in their costumes. Eventually, I figured out that with help, I could hang up black plastic, similar to what garbage bags are made of, cheaply purchased at the hardware store that I could crumple up for some texture. Since this photo booth was for Halloween, it was perfect, and it looked great. As the years went by, I saved money for better cameras, lights, and backdrops and focused on improving the experience for everyone. More importantly, I focused on how to do this as independently as possible. Due to my disability, I will always need assistance doing some things. For instance, I could set up the lights, but I needed help to hang the backdrops. While I am so fortunate to have a person like my partner, Robert, willing to help me so I can continue to do what I love as a disabled person, not everyone has a person in their life who is there in this way. Nor do many disabled people have the funds to hire someone to help them live their best lives, contribute to their community or fully thrive doing the things they love. When I began doing these photo booths, my chronic pain was not that bad. I was able to set everything up mostly on my own. This last year, however, my chronic pain has been more challenging to manage. I could have decided not to participate this year, but I realized that sitting at home was not an option. I would only focus on my pain and be miserable. On top of that, I’d have to see others post about it on social media the next day! Forget the pain; that would have killed me!!! The choice to not attend would not be the path to happiness for me. In fact, it would lead to me being depressed, making my pain even worse. When I am busy meeting people and figuring out the best way to photograph them at this yearly event, my pain is the last thing I’m thinking about. While yes, medically, there is a reason for my pain, medically, there is no real solution for it. There is a misunderstanding that chronic pain only lives in a world of medicine, of the physical body, but it also affects a person’s psychological and social worlds as well. I needed to develop my own Crip Plan to make this photo booth happen this year. The decision I made to forge ahead with this project was non-negotiable. The show was at The River Spot. I had never done the photo booth there before, so we arrived early that day to set up the backdrop before the show. This space was not the most accessible; however, in prior years, the spaces had been way worse, and I somehow managed. The great part of being part of a DIY community is that we all work together for a common goal. While everyone worked together to create a space to have this show, we also collaborated to find a spot that was accessible enough for me to create a photo booth and photograph the people attending. Riley, who is one of the organizers for Pansyfest (the organization that took over the Prison Books Halloween Show), walked around the property with me to locate the best spot. Once we found it, I set up the lights while Robert talked to the other folks to figure out how to get electricity to the lighting. Being part of the DIY community, we always prepare for moments like this so we brought our own extension cords and power strips to be able to make sure the lights could be used. I decided to go home and rest while they were still figuring out how to supply electricity for the bands and DJ and hope that they would figure it out by the time I came back. There is never a guarantee that this will work out but in moments like this, I just hope for the best and that it does. In the end, between all of us, we were able to make this show happen. The bands played, the other participants set up their tables to spread their messages, and I was able to do the job of taking the Halloween portraits. This was a job that I would have not been able to do myself. When I woke up that morning, I had another job that I could also not do by myself: Get out of bed. I hear the alarm from my phone chiming. I slowly wake up and open my eyes. Panic is the first thing I feel. The pain coursing through my body is my brain telling me something is wrong. Pain is a way for your brain to tell you something is not right with your body. You go into fight or flight mode and panic often sets in so you will find what is causing the pain to stop it. For me and nearly 50 million other people in the US who live with chronic pain, we have something broken in our bodies. The pain signal my brain sends is not wrong because my nerves are broken. This causes two types of pain for me: spasticity and neuropathy. While my brain is correct to warn me, I am not truly in danger, and there is nothing I can do about it. I must accept this and learn how to manage the pain so I can work, live, and eat. Within a few seconds, I take charge of my brain and tell myself “this is the pain from your nerve damage.” Taking charge of your brain is a skill we all have to learn. When my chronic pain, (which I call “Spastic B&$ch” and “Neuro B&$ch depending on the day. Some days it’s one of them. On other days it’s both) introduced herself to me about 16 years ago, the panic was all I felt. It wasn’t until about 6 years ago my neurologist finally told me that he had gone through all the options available to him. He had no real answers for me anymore. Maybe he was embarrassed or sad. Maybe it was his ableism speaking. Or perhaps this was the first doctor that was humble enough to admit he did not have answers for me. Whatever it was, he suggested that maybe exercise could help eliminate the pain. While the whole world feels bad there are no cures for me, a doctor admitting that he had no answers was empowering. It allowed me to understand that I had done everything I needed to do to figure out how to manage my pain medically. Now it was up to me to take control of my mind, overcome this pain mentally, and get back to the independence I had lost before I was looking for a cure. Exercise is part of this. It does not eliminate my pain but the doctor’s suggestion was not completely wrong. Taking control over my mind has been a skill that I’ve been developing since the doctor told me he had no more solutions for me, and exercise is a part of this development. For now, the Crip Plan I’ve created works but I do expect this to change over time. I will have to continue to develop the skill of managing my mind over my entire lifetime. The panic washes over me again because it’s really bad. I have to figure out what to do so I can get out of bed. I think “Shit! What if I can’t get out of bed and do the photo booth that I love to do today?!” Again, I push those fears to the side and focus on the one job that I have to do: Get. Out. Of. Bed !!To begin my process I need to gather some things. The first step is to heat up a hot water bottle and a rice heating pad, but I can’t get out of bed to do that. I depend on Robert, my partner/caregiver/friend, who has to do this for me. Robert has insomnia so he ended up in the living room to sleep at some point. I hear him snoring. This tells me he had trouble getting rest last night. I do not want to wake him up, but I need him to in order to help me. I feel so bad disturbing him, but it’s 5 am and I need to start getting ready so I say his name. “Robert…” No reply. “Robert…” No reply. “Robert…” A sleepy “yea?” “Hey, I’m sorry, but I need the to start getting ready so I have time to make it for the photo booth.” He replies with a sleepy “OK” and begins to stir. He gets up, comes in the room, and grabs the hot water bottle, homemade rice heating pad and a mason jar sitting by my bedside. Robert is known as the “mad scientist” for everything he does, be it music, cooking, or making a concoction of tea for me every morning to give me relief from my nerve pain. As I wait for him to heat it all up, I turn on the regular heat pad I’m laying on. Then I close my eyes to meditate. I learned about this 4-7-8 breathing exercise that is known to be relaxing. I breathe in four sips of air: One…two…three…four. I try to breathe them into the areas where my stagnating pain resides. Then, I hold my breath and count to seven. After the count, I release my breath in eight counts. Within a half hour, Robert comes in. He gives me his arm so I can sit up because sitting up is something that is hard for me. He puts the hot water bottle and rice heating pad on top of the already hot heating pad beneath me. He also puts blankets over them because it is hot and I can’t feel it. I don’t have sensation underneath my lower back. The heat does such a great job relieving my spasticity but it also creates a danger of burning my skin. Heat is the first step in the job of managing my pain but it’s so frustrating that the thing that gives me relief can also hurt me. Protecting me from getting burns is a top priority. This has happened before and leads to its own set of problems and issues that we both want to avoid at all costs. After he does this, I lie down. He hands me the mason jar with a hot green liquid in it. I use the heat from the jar to loosen my tight muscles. As I put it on my right hip, a spot where my muscle is really tight, my lower right leg starts shaking or spasming. Spasticity shows up in people’s bodies in all kinds of ways. For me, my hips and leg muscles tighten and stay tight. For others, their muscles tighten then loosen which causes spasms. Spasticity can exist anywhere. For some people it can exist in their legs, arms, fingers and faces which can lead to other issues such as a speech impediment. It is in this moment, as my leg is spasming, I realize how connected my body is. The spasms start in different areas of my body suddenly. It is not only my right hip spasming on the place where I have directly put the hot tea; it is also happening in the lower part of my right leg and my left. Even my sinuses are releasing. The pain increases as it releases its grip in my right hip. This is in and of itself a painful process. While my instincts tell me to stop, I don’t. I know the pain will continue to get worse, but then eventually the tightness will loosen and the pain will be less afterwards. I go back to my 4-7-8 breathing again. As I do this, everything combined — the hot water bottle, rice heating pad, regular heating pad, and the hot jar of tea — helps release the tightness that makes my muscles feel like stone. After doing this for about an hour, my pain has decreased significantly. The panic is less because I know getting out of bed is now a reality, which is not always the case. Sometimes no matter what I do, the pain doesn’t really get better. Just like being able to do the photo booth is never a guarantee, I have to use whatever I have available in my arsenal every morning and hope for the best. The alarms on my phone are great to wake me up in the morning but when I’m managing my pain, between meditation and intensely focusing on trying to relieve it, it’s hard for me to remember to set a timer every time. Keeping track of the time is important when I have to be somewhere or do something. There are times when the pain is loosening and I become obsessed with trying to loosen it even more so I don’t feel it any longer when in reality I will ALWAYS have the feeling of spasticity in my body. Some days it’s more, some days it’s less, but it will always be there. I have to take charge of my brain again, acknowledge this reality and keep track of how much time I spend on relieving the pain. I discovered I could keep track of time better by “watching” a TV show. What show I watch is irrelevant. I like finding shows that have 6 seasons or more so I don’t waste time going down the obsessive wormhole that streaming television creates. In the past, I’ve been snobby about what I watch. I always preferred something with intellectual substance- films and TV shows that were well filmed, written, or acted. My goal now is to find something that is about an hour long, no more. The content and execution do not matter because I’m only half paying attention. The TV show is no longer entertainment or an intellectual pleasure for me, but simply a timekeeper. During this hour I’ll meditate, which leads to me falling asleep. At times I’ll stretch and use all the heat available to relieve the pain in the areas I feel it the most. For me to manage my pain, I have to go in steps. I’m not sure it will work, but like the photo booth, I just do it and hope for the best. When friends ask me about how to manage pain, I tell them that chronic pain is truly different for everyone. For some, to keep moving the body is the solution, while for others moving too much can make it worse. I make it very clear that there is never one single path or one fast solution to getting relief from pain. For me I like to compare it to an onion. I relieve my pain in layers. I peel one layer off at a time. I start with the heat to relieve one layer of my pain then I continue to the next. By now, the hour-long TV show has ended. I drink the tea Robert made for me. I can feel the effect of its warmth and the tea’s contents releasing my sore muscles and peeling off another layer. Then I grab the TENS (Transcutaneous Electrical Nerve Stimulation) machine to stimulate my muscles in a different way. The TENS machine is a device that sends electric stimulation into your body through these small pads that you place on your skin called electrodes. There are usually two wires on the TENS machine for each side of your body. Each wire has two electrodes. This electric stimulation goes into muscles in a different way the heat does. It actually feels nice, almost like a massage. I find a tight spot and sandwich it between two electrodes on each side of my body. I place them on different spots on my thighs, hips and other areas where I feel the tightness. I pull up a TV show that is half hour-long. I turn the TENS on and do the different stimulation patterns in 5 min intervals. I can feel that electric stimulation, peeling off another layer, loosening those muscles further. I am very happy this is happening because some days nothing I do works. On other days, a solution may not be as obvious. As the TENS does its thing, I drop my right leg off the side of the bed because this loosens my muscles. I half pay attention to the TV show on the screen as I meditate and imagine my body as an ocean where tiny little divers are swimming around with ramming rods and breaking the rocks, my muscles, so they can swim to the other side. The show has ended and as the credits roll, I count to three, (Counting to three is important. When I do it forces me to focus on getting up when I count to three instead of focusing on the pain that tells me I shouldn’t get up) and I sit up by myself and stretch forward and rotate my torso to loosen those muscles in a different direction. Then I slowly move the pillows to the side of the bed where my feet usually lay and put my head down. I lift my legs up onto the bed, drop my left leg down, find another half hour-long TV show, turn the TENS on, use my hot water bottle, rice heating pad, and heating pad and begin my meditation and breathing exercises all over again. The show is over and my pain is still there but significantly lower. I can get up! I count to three again and sit up, again by myself, dropping both legs to the ground. I transfer to my wheelchair and begin to get ready for the rest of my day. The work I have to do to make a photo booth happen, photograph a friend’s wedding, play a show with my band, hang an art show, or to meet up with friends is a lot to handle for simply being social or to do the things I love. When it’s for an actual job where I can earn money, that’s when the work I have to do to manage my pain becomes absolutely necessary. Like any other human being in the world, disabled people are trying to obtain the same things: a place to live, food to eat, and a way to have those first two things requires having a job. One way to be inclusive to disabled people is by providing accommodations. In fact, according to the ADA, accommodations are our rights and our path to have the equality that any other human has. Accommodations could come in the form of letting a person work from home, providing captions or transcriptions for those who need it, or assisting a person with caregiving or a personal attendant to help them get ready for work. According to the National Health Interview Survey, nearly 50 million people currently in the US live with chronic pain. Within that 50 million there are a lot of people who need a lot more assistance than I do to get to work. Caregiving or care attendants are a necessity. Not everyone has family or friends who can also play the role of caregivers. Some need the assistance from a person who would be considered a stranger, but they cannot receive it because it is either not available to them or not affordable. The people who do have those family and friends to help them cannot pay them to do this work. This puts stress on the person taking care of their loved one by also requiring them to have another job that pays them so they can survive, live and eat. As long as we live in a society in which the assistance we need to thrive in the world, whether it’s working from home or having a personal assistant, is looked at as other people doing us favors or giving us acts of kindness instead of being valued as workers who deserve their equality, disabled people will always be a marginalized group. Currently in the Build Back Better law, they are looking at caregiving as a way of making our infrastructure better. It is our right as humans to get help when we become temporarily or permanently disabled. We are people who have something to offer our communities. It is our duty as humans to not only save these lives with the technological advancements we’ve created but to also create a way for these lives to live.