The approximate number of pain free days in the last 24 years. One would think that I would know for sure how many days. The pains are 24 hours/day. Well, perhaps not 24 hours. I never dream of pain. Yet on those pain free days, it’s not until the end of the day, when it occurs to me: ‘hey, I don’t think I had any pain today’ that I realized what happened. ½ a life of pain and yet it’s not the new normal.
I’m good at hiding pain. Up until last year, I rarely mentioned pain to anyone. It’s called an invisible disease. Who would benefit from my mentioning it at work, with friends or even at home? How does it serve me? Growing up no one talked about such things. I can’t recall my parents or siblings ever saying they felt sick. In my twenties it was a big deal going from athlete to patient. I cringed when someone referred to me a ‘patient’ and my wife as a ‘caregiver’. I’ve never felt defined as an ‘AS patient’ and that certainly doesn’t define our relationship. Now, it seems everyone my age has been affected by some physical or emotional issue. I’ve known so many people that suffer in so many ways. I could quietly deal with and hide my issues. Objectively, pain is a good system. It gets a person to pay attention. So, thanks, “I get it”, I pay attention. I’ve got high levels of inflammation that is fusing my spine. I’ve learned that I need to pay attention and take action at the moment (could be taking a rest break), or my body will eventually insist on my paying attention at a very lengthy and inconvenient time of it’s choosing. I no longer have the luxury to be too busy to exercise, eat right, get enough rest. The majority of ‘spondys’ that I know look great. Still, I’d have to say that pain also sucks. It darkens an otherwise beautiful day. It’s said that a single flame of a candle can bring light to an entire room. I know that pain can be like a simple wisp of air that extinguishes that light.
I’m having a really good year. The disease is such that some people have it worse than others. For me, some days, weeks, months and years are better than others. Bad years are pretty vivid and scary enough to be grateful for the good years, and to do what you can -while you can- to avoid the bad times. As the old timers with AS used to encourage me, the pain can burn out after a while.
A good year means that I am not waking up throughout the night in pain. In the morning I can get out of bed and stand upright – that’s an amazing feeling. My spin instructor tells me that I am getting really strong and my alignment has improved tremendously over the last several months. I can crack my back by taking a deep breath. I can pass gas without blood and mucus coming out. I can look out the window without searing eye pain. I can make it through an anusara yoga practice and know that I will feel improved for the next 4 hours. If I find a good balance of activity, diet and rest then I can make it past 7pm without tons of pain, and more importantly, I can avoid being a grumpy jerk to my loved ones. If I don’t disrupt my rest, diet and activity level, then I feel like I won’t get a flare that could last for months. Vacations, evening out with friends, work trips, going to a sport event or performance or anything that involves more than a 3 hour commitment scare the hell out of me, even in a good year. But in a good year, I can hide all that and explore the boundaries. I feel totally crazy, but soon I’m going to be certified as a yoga teacher. I firmly believe I can be stronger, more flexible and have better balance. I want to be a resource to other spondys that have stretch & yoga questions. I feel strong and capable… and yet still insecure how long it will last.
I feel so blessed and yet, at times I find myself wondering about getting a broken neck, hip or heart. AS is insidious. AS is not linear. Some of my tomorrow’s will be much better than my yesterday’s. Where there is life, there is hope.
How long ago did my si joint fuse? Now my neck is fused. I ‘get to’ search for a way to learn handstands since I’m not supposed to do headstands anymore. I realize that I should never go on a roller coaster again. Probably should wear a medical bracelet. It’s important to remember what’s a ‘small thing’ and what’s a ‘big thing’ and that most things are small.
Like any good spondy, I have a ‘support team’, keep up on the literature, I support the Spondylitis Association of America, go to educational seminars, listen and share experiences with other spondys at meetings and on social media, I’ve logged sleep, diet, pain and even the quantity and quality of bowel movements and I count spoons. I also go completely off the spondy grid from time to time.
I don’t take meds. If I wasn’t so near death from a side effect; If I wasn’t madly in love with my wife and children; if I could trust a doctor after that; if we knew 15 years ago that TNFi stops the inflammation and fusing for some people early in their disease; then I would be on them. I do avoid cruciferous vegis, all raw vegis, corn, dairy from cows, nuts, high fiber, grains, processed sugar. My sweet spot is about 7.5 hours of sleep. This week, I’m averaging 4h 38 m. 1 nap on the weekend. Spin 3x/week, I don’t think about it, I just go. Light weights 2x/week. Anusara yoga 1-3/week and lately I’ve bumped that up to about 9+ hours of intensive yoga practice per week. My Saturday yoga class is my injection and I don’t skip it. I feel like that class is simultaneously my most selfish and most giving act to my family. I hate & love yoga. Everything about yoga hurts and reminds me of what I expend a great deal of effort to hide.
Some statements don’t help me. “That which doesn’t kill us, makes us stronger”. Fine Gd, make me weak and give me back my what’s been lost. I’ve love life, I love my journey; AS has brought me down a path of some things that I cherish. I have met some incredible and inspirational people. I was forced to give up all the sports that I truly loved and found new ones to love. My career has been fantastic. My co-workers are great. But there is no reason to think that I wouldn’t love my life’s journey without AS.
Some ancient prayers have new meaning since the diagnosis, Ba-ruch’ A-tah’ Adonai E-lo-hei’-nu Me’-lech ha-o-lam’ zo-kef’ ke-fu-fim’. ‘Blessed are you, our Gd, king of the universe, who straightens the bent.’
I’m so grateful for my support team over the years. They don’t usually know they are on my support team so I’ll mention them by role. Nutritionist/cancer survivor for sharing with me how having a support team helped her. I’m grateful for her nutrition advice and for never adjusting me. Psychologist. Clergy. Doctors (GI, PCP, Rheumy, Opthamologist). Oldest & closest friends. Yoga instructors. My children & all my parents and of course to my beshert who has been my love, shield, and cattle prod.
California, United States of America
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062