by Kerry Kijewski
It’s said that chronic pain is a neurological syndrome, a switch which gets flipped on in the brain at some point, resulting from some kind of trauma to the body. Chronic pain has gone on to be a part of me for coming up on twenty years (nearly half my life). I could go on and on trying to figure out the how and the why of all of the pain I feel, but since finding a cure seems so elusive, I have chosen simply to find ways to deal with it instead—ways for living the best life possible for me, in spite of all the things I cannot control.
I was born blind and three years later, and so was my baby brother. This came as a shock for my parents. My two older siblings were born with no issues or concerns.
It wasn’t until eleven or twelve years of age that something else began to go wrong. I was diagnosed with kidney failure and put on dialysis, receiving a transplant from our father. My brother went down the same path a few years later, receiving a kidney from our mother.
As teenagers, we were tested and it was discovered that we both had scoliosis. We’d both have spinal surgeries in the next few years to correct spinal curvatures that were continuing to curve, even a back brace being unable to stop progression of the problem.
Somewhere in between my transplant and that of my brother, a genetic team at Toronto’s Hospital For Sick Children did testing on us all and then spoke with my family about an extremely rare syndrome. This brought us to the diagnosis of Senior Loken Syndrome, which then finally explained the blindness, renal disease, scoliosis and anything else that was happening. This was inherited from our parents to two out-of-four of their children. We could hardly understand the details and the medical facts ourselves, all the talk of genes and genetics the team of scientists seemed to know so well.
I was sixteen when all of these things were finally being explained, even to the best of medical expert abilities. I went through some years of depression and hopelessness after it all, as a young woman. I was a scared teen and I feared the worst—that I wouldn’t survive into adulthood. If it was so rare, who knew what else could be on the way. I knew I was lucky to have even been given any diagnosis at all, as years before, many other young people didn’t live to even see their teen years living with such a rare and unfamiliar set of diseases. I feared things were about to get worse, which they soon did, though nowhere near the doom I’d once imagined. My young imagination sure could run wild during those uncertain years of testing and treatments.
All the trauma of surgeries and medications could be contributing factors for why I soon began having headaches which started to happen daily. The pain would eventually spread to other parts of my body. It was a vast array of pain sensations, ranging from sharp to throbbing to an all over tenderness. My head and scalp always felt sensitive and heavy and it felt like my bones or my skin were hurting and painful to the scratch of an itch or the playful jab of a sibling.
At first, I went from doctor to doctor, specialist to specialist, in search of a clear medical reason to explain why I was having so much pain. From my medical history, I was used to there being a known cause for symptoms, if I had the right tests performed. This time, however, there were no signs visible on a scan or x-ray and the doctors were stumped. Doctors didn’t like to be stumped and neither did I.
I became angry, frustrated, and impatient. I became depressed and stopped going to school, all the pain and the stress of it becoming too much for me to handle. I wanted a reason. I wanted a cause for my suffering. It was the first time I was experiencing a symptom that my younger brother did not. I was thankful, at least, that this was one part of a highly rare syndrome that he didn’t also eventually get, following along in my medical footsteps with everything else. Was this a hormonal thing, a difference in him being born male and myself, a female? Along with the medications I tried, one after another, I decided to pick from a long list of complementary treatments. I began down the long path of treating the pain any way I could.
One of the first things I tried was acupuncture. I wasn’t afraid of needles by this time, so I went to someone my grandmother recommended. He began sticking tiny needles in different spots all over my body, including around the back of my neck and head, down my back, and in the spot on my hand and foot (between the thumb/big toe and the next). He would do slight adjustments, turns of the needles and I would feel a slight twitch, but I did not know what else I should expect to feel. The pain continued. Some swear by acupuncture, but not every treatment is going to work for every person. To be fair, though, there was a lot going on in those days, changes to my everyday life from all the pain still being so new.
Next, I tried a form of body adjustment known as cranial sacral, which I rather enjoyed, as I laid there and the woman ran her hands (up and down, up and down) a few inches away from my face and body. She pressed, gently but firmly over my head and neck. I can’t say I felt a huge difference in my daily life, but during those hours on her table I was able to relax. I felt a sense of peace—a rare occurrence—that I hadn’t felt in so long. I quit going, worrying I wasn’t seeing enough of a change for the money it was costing. Years later though, I wonder if the relief I felt, even if it was brief, might be worth a second try.
Then there’s yoga. I’ve been aware of it for years, although I’ve often been suspicious of any real and obvious health benefits it gave. It wasn’t until recently, after living with chronic pain for nearly two decades, that I changed my mind. I decided to give it a try.
After all, it couldn’t hurt, could it?
I realized I needed to find a yoga teacher who could understand I had multiple medical conditions to consider. I wanted to be careful, especially starting out, as the metal rod in my spine is a physical reminder of some of my limitations. I didn’t think I could join a big class and be able to follow along with everyone, as I was going to be unable to see the poses and would need the kind of instructor, who had the time, who could verbally articulate what it was I needed to do, how I needed to move and stretch and the proper way to move my limbs and how to properly bend and twist. I found someone who was eager to learn how to teach yoga to someone without sight. The only problem was, she lived in a different province.
Enter the miracle of modern tech. I have weekly yoga sessions, in my own home, as long as the technology doesn’t cause problems on either her end nor mine. I have come to value the precious time I have each week, with my yoga teacher, as I do nothing else and think of nothing else but the sound of her voice and her instructions coming from my laptop for the poses I am doing.
I’m doing it to hopefully improve my physical health, to perhaps lessen the pain some, but mostly to learn coping skills for when the pain gets to me on those bad days or perhaps to better prepare myself for when they come. I’m learning breathing techniques and meditation tools that can provide me with ways to cope better.
I inhale (a three-part breathing technique) starting in my abdomen, my ribs, and then my chest. Then, I exhale, the same three parts.
Living with chronic pain, it is easy to notice that there are a lot of seconds and minutes in a day, so many that it often feels like time stands still, when the pain won’t let up, when breathing exercises aren’t going to make a dent. Then, there are those moments that I stop and focus on nothing else but taking deep breaths. I am hopefully learning some level of control over my own mind, even for short periods. It’s during those moments of meditation that I am learning how to better block out everything that’s negative and painful, focusing solely on the little things that can make a big difference, a lasting difference over time.
I’ve learned along the way that it is not about curing something or pushing to find reasons for it, but instead to find a way to live my best life. There are so many conflicting treatments and ways to deal with pain in the body, so many competing voices to listen to, but in all that, I am working on better ways to listen to myself and what I need to feel as healthy and happy as I possibly can.
Kerry is a writer, blogger, and podcaster from Ontario, Canada. She writes memoir, some fiction, and literary travel based writing. She was born blind, but without words, truly would be in the dark.