A.S. Face 0037 : Sean R.
Better living through biochemistry
I used to walk to lab every day, year round. There was no choice. I didn’t have money for a car or for a parking pass. And it wasn’t that far, one and a half miles at most. Life as a graduate student was austere but incredibly rewarding. The “walk” seemed a small price to pay for an education. Even when it snowed.
Several times a year, not always but frequently enough, the walk would bother me. I had low back problems, my hips would ache, and the bottoms of my feet would feel like they were on fire. The pain would come and go. No big deal, I’m a young active man, I would tell myself. I’m bound to hurt from time to time. I played hockey in the winter, and volleyball in the summer. I worked hard, I partied hard, and generally ignored my own physical well being like most other twenty-something men. Plus, it was only a mile and a half. I was embarrassed to admit to myself that I was having trouble walking that short of a distance.
One day, in the summer when it was very hot, I was having one of the bad days. I made it to lab, climbed the stairs to the basement entrance, and then headed directly to the elevator to catch a ride up to the third floor. One of my professors walked into the building at the same time as I did, but chose to take the stairs instead. When we met again three floors later, he couldn’t help but be smug. I won’t soon forget his words: “When I was at Cambridge, my professor (a Nobel prize winner) would always bound up the stairs, and look at everything he accomplished!”.
Was he also an ***hole? I wanted to say. But I bit my tongue and whispered to myself, what if I had been really sick and this guy had talked to me like that? You won’t catch me saying things like that to people I don’t know, I promised. I won’t make assumptions about how other people feel, and whether or not they need to take an elevator or use the stairs.
It wasn’t long after that when I had what I consider to be my first real incident. I was lying on my couch in the living room, and when I tried to stand up to walk to the bathroom, I couldn’t. I was stuck. If I tried to put weight on my legs, they would give out. I literally fell to the floor. My wife, who is less than half of my size, came to my rescue. Somehow, she physically picked me up, and helped me hobble down the hallway to the bathroom. By the time I made it up and back the hallway the pain had lessened, but my self confidence was shaken. I went on and off having episodes like that for a week. More than once I crawled around on hands and knees until the pain would subside enough to walk again. And then it went away, as quickly as it came.
My wife, having more than her fair share of common sense, insisted I go to a doctor. I didn’t like doctors, most of the ones I saw as a child were located on a military base, and I would see them only to get vaccinated. There were times when my family didn’t have much in the way of health insurance, but did have access to military facilities thanks to my father’s retiree status. Thus I learned at an early age that the doctor was to be avoided at all costs. But in the end, sense won out over stubbornness, and I went to the clinic to take advantage of the student “Death Plan”, our tongue-in-cheek term for what passed for health care on campus.
There I met a physician’s associate in the orthopedics department. He did some blood tests and took x-rays. Nothing to see by the bloodwork, he told me, no elevated inflammation markers, everything is within normal range. The x-rays were equally unremarkable. He said my lower back was straighter than usual, I did not have the appropriate amount of lordosis in my lower spine. He suggested that this could lead to greater mechanical back pain, but shouldn’t be too much of a problem. Straight back syndrome, he called it. He suggested I swim to strengthen core muscles and take Motrin with breakfast. Breakfast of champions, he said. So I did. And I felt better. I figured I was just born with a bad back, and I would have to live with it. And I carried on believing that for 10 more years, despite multiple “episodes” and the resultant comments from family and friends. It’s just a bad back, I would tell them. That’s what the Doc said.
In 2005, I started a new job, my dream job, and moved across the country. The work was exciting, challenging, and stressful. As the stress mounted, so did my back problems. I spent hours in front of the computer or in the lab, 60+ hours a week, and it was taking its toll on me. My back was killing me. Worse than ever.
My wife again insisted I go back to see a doctor. I now had good health insurance and no excuses. My primary doctor did blood work and sent me to physical therapy. No inflammation markers, he noted, but slight anemia, and definitely a bit too much curve in the upper spine and not enough in the lower. He hoped that physical therapy would “straighten me out”. The physical therapists certainly gave me their worst―I was poked, prodded, stretched out on a table, asked to lie prone on a rolled up towel to try and reverse my kyphosis. I felt more pain than ever. Finally, my primary doctor decided to take x-rays of my sacral spine. And there it was, clear evidence of inflammatory damage to my sacroilliac joint. He referred me to a rheumatologist, who took one look at my chart and made a tentative diagnosis of ankylosing spondylitis, subsequently confirmed by a CAT scan that showed sacroillial fusion and a positive test for the HLA-B27 gene (Not a very useful blood test, because most with HLA-B27 never develop the disease).
So finally my bad back had a name. A silly name to be sure, but a name none the less. Ankylosing Spondylitis. When all the ankylosaurus jokes and hows your AS(s) jokes subsided, I was left with a new reality. This wasn’t going to get any better. It was going to get worse. Possibly much worse. And I wasn’t emotionally prepared. I became depressed. Then I lost two close friends, both of whom died unexpectedly, way too young. I almost lost my wife and second child on the delivery table, which made life seem even more hopeless. I felt like the man with the “merde” touch-―everything I touched turned to shit. I blamed myself. I judged myself mercilessly. I hated what I had become, what I was going to become, and lived life surrounded by a cloud of doom and gloom. Worst of all, I was afraid that I had cursed my two children to the same fate.
And then something surprising happened. I found hope. I started a new medicine, delivered to my door in a pre-filled syringe that I would inject under my skin every two weeks. This medicine was called Humira, a “TNF-blocker”, made by Abbot labs. It’s a humanized monoclonal antibody that binds and sequesters the pro-inflammatory cytokine TNF-alpha. It worked like magic. I would inject myelf, have a great nights sleep, then wake up mostly pain free and ready to take on the world. The feeling would last for almost two weeks. I would have a couple of bad days, but then time came for the next injection. I felt like I was given my life back–better living through biochemistry. Thanks to this new found hope, I found the courage to meet with a psychiatrist who put me on the road to recovery from depression.
I started to reevaluate my life. I am a scientist by profession. I do basic biomedical research for a living. If I had never heard of AS, perhaps other scientists were equally unaware. And that was scary to me. I started poking around the literature and grant databases, and realized the community of scientists studying this illness as their primary focus was exceptionally small. I felt like something had to be done. I felt like I had to spread the word, to get as many smart people thinking about AS as possible, to help foster disease research. I knew that there were others like me, who found great relief from TNF-blockers, but there were many patients who didn’t respond to this kind of treatment. And there was no evidence that TNF blockers would stop fusion. In short, it wasn’t a cure.
I became a member of the Spondylitis Association of America. I followed with great interest the genome wide association studies that they helped to initiate, the results of which have identified several additional genes that are linked to the disease. I read their literature, bought the coffee mug, proudly wore the “Stand Tall” bracelets, and made a commitment to donate annually to their cause. I participated in their online forums, and made new friends that could understand what I was going through.
I have been fortunate to interact with some amazing people as a result of this illness, like Kelly, who founded the Ankylosing Spondylitis Awareness Project, a facebook page that connects AS patients with each other and seeks to increase awareness about the diseas–and Michael, the creater of Spondyville, whose quick wit and sense of humor helps to keep thoughts of a sad future at bay–and Fee, whose strong voice and talented song writing comprise a special form of AS awareness that you can dance too–and Jenna, who is keeping the doctor away one apple at a time―her goal is to create one apple-themed art piece per day for a year in hopes of attracting media attention to the cause of AS awareness. And many, many more.
Today, I can accept that the future may not include all of the things I imagined as a young man. I can accept that pain is going to be part of my everyday life. I know that there will be good times and bad times. I know that some days I will feel inspired, and other days I will feel hopeless. I know at times I will be disappointed, and that I will disappoint others. I also know that the only way to accomplish anything is to get to work.
Life goes on. I have had to switch TNF blockers twice now. The current flavor is called Remicade, which is dosed by weight and delivered by IV infusion instead of self injection. I take other medicine to help prevent my body from becoming resistant to the medicine, and an anti-inflammatory to help control break through pain. Today was a bad day. Maybe tomorrow will be better. Who knows. I wish that I never heard of this disease, but now that I have, I feel compelled to tell people about it. I am comforted in the knowledge that there are many out there that are looking out for me, and I will do what I can to return that favor.
Massachusetts United States of America