“I will keep aiming for the goals in life that define me as a person, not a patient.” Britt AKA @hurtblogger (http://www.thehurtblogger.com)
As a chronic patient, sometimes the line between person and patient is a little blurry to say the least. Chronic pain strikes whenever, however, and without rhythm or reason. The one advantage we have as individuals over pain though is time; it continues regardless of pain which means things can change for the better. After all, there is no truer statement than, “it’s just a bad day, not a bad life”(http://www.itsjustabadday.com). Everyone, including myself, needs to work on remembering this!
Why am I suggesting this? After all, there is pretty much no such thing as two identical patients, which means everyone’s journey is different. My patient story is definitely different from Britt’s; which is definitely different from Julie’s (the creator of It’s just a bad day, not a bad life). I mention this because there is one common denominator between all of us as people and patients; we all want to live life’s that matter despite being a patient.
Recently, I’ve seen several comments and posts implying that patients that ski, run, hike mountains, climb rocks, or compete in various races are not “true” patients or are totally depressing super humans as someone said. These posts imply that we are doing a disservice to our community because we share our adventures and accomplishments instead of always talking about pain, suffering, or disability. What these people don’t understand is that we are talking about our disability; we are just doing it from a different perspective.
For example, I consider myself a broken athlete. I’ve spent most of my life skiing all over the Pacific Northwest, climbing rocks around Boise, annoying drivers as I rack up hundreds and hundreds of miles on my road bike, attempting to complete in at least one 5K race once in my life, might be returning to mountain biking, tennis, soccer, hiking, and not nearly enough camping. As a long time ski instructor I’ve seen the pure joy I’ve brought to others as they complete their first turn or black diamond run, seen others accomplish incredible feats of athleticism, seen a lot of beautiful landscapes and animals (not snakes though, I HATE snakes), and brought smiles to others while I share photographs, stories, or video from these adventures. Simply put, part of being me is being outside with others searching for that endless smile. Sun + Dirt/Snow = Alan for you math majors out there.
On October 23rd, 2014 Alan the adventurer became Alan the hip replacement patient. Now, technically, my adventures had been put on hold for a long time before the 23rd. October 23rd was the date of my right, total hip replacement surgery. In my head though, this was the first day of unpausing my life and returning to Alan the adventurer. Yes, you read that right. Despite having lived with hip dysplasia for my entire life and in both hips, I consider the surgery to correct this as my first day back to being Alan the person and no longer Alan the hip dysplasia patient.
Since I looked at my surgery as an opportunity to unpause my adventurer side, I was more than willing to try walking roughly 4 hours after I had got out of recovery. I took 3 steps with my walker before the nurses told me that was enough and I had to return to bed. While in the hospital, I was almost excited to try to walk up and down stairs because I knew that was the next mountain I had to conquer before I could be sent home. I even passionately argued with my doctor because I had sent a goal of returning to skiing by New Years Eve and he wasn’t going to allow me to ski at all this winter (guess who won, ME!)
This does not mean that my recovery was perfect. I definitely had days were the pain kicked my ass to the point that I couldn’t even shower or change my clothes for days. My dad came over almost every night for a couple of weeks after I got sprung from the hospital in order to fix me dinner and help keep my house clean because I couldn’t accomplish these simple and routine tasks on my own. Once, and this is the first time I’ve even shared this, my brain fog was so bad that I could not figure out how to open my drivers side door after work one day. This sent me into a panic state but luckily my brain figured out that I could roll my window down and open the door from the outside. I’m still more scared of that particular moment in my life than I am of surgery.
According to my rheumatologist, my surgery probably is the cause of my current flare. Another one of my diagnosis is Inflammatory Arthritis (similar to rheumatoid arthritis). My hands have been hurting a lot, my knees don’t seem to ever become loose, and my neck is hurting to the point that I go in for spinal epidurals this Wednesday. Thanks to this flare, I’ve been in tears while working thanks to my hand pain, it is hard for me to tie my own shoes or wipe after making boom boom (I watched The Big Bang Theory last night which is were boom boom comes from), and I’ve dropped countless objects lately. In fact, this flare has been bad enough that all the work my dad did helping to clean my house is basically gone. My place looks like a frat house at the moment.
All of these are common, everyday battles people with my disease have to deal with. These symptoms should be and are talked about by everyone though. Contrary to some, my fellow athletic patient types nor I, are by no means trying to deny or hide this aspect of our patient lives. We just can’t talk about it 24/7, that’s no way to live in my humble opinion.
Despite all of this, what’s most interesting to me as a person and as a patient is my return to skiing on New Year’s Eve. My desire to drive up to Bogus Basin Ski Resort, click into my skis, and try turning again was stronger than my desire to go home, put ice packs on, and pop pain pills until I could fall asleep for awhile. By returning to skiing I was walking that blurry line between being a person and patient, which is better than just being a patient. This was yet another attempt to become Alan the adventurer again.
Now, one would think with all of my experience skiing this would be a routine event for me. It was anything but routine however. For the first time in years, I was actually scared and nervous to put on my skis. That was odd! Turns out that after skiing years with a dysfunctional hip that turning with a functional hip felt new and weird to my body and me. There was a brain to leg to snow disconnect that I don’t really know how to describe except to say that I was scared and confused all at once. I had experienced this disconnect when I first left my cane and tried walking without any aides after surgery. In fact, I was almost tripping over my right leg going around corners because it felt so different in my head, body, and muscles that I had to adjust to the new mechanics of my hip. I forgot to consider this disconnect might happen in my skiing too.
Logic would suggest that I might have been pushing my return to skiing and wasn’t ready to return to Alan the adventurer yet. I played with this notion for about a week at which point I decided nope, I wasn’t going to let one experience dictate my entire winter. So I loaded up my gear and went back to Bogus Basin for another attempt at skiing with my new hip.
This time was different. I was still scared and nervous but not as debilitating as the previous time. On New Year’s Eve, I made one run then went back into the locker room because I was afraid of getting hurt. This time I made it down 3 groomed, intermediate runs before returning to the locker room. HUGE SUCCESS in my head!!! My original goal was to make it down one intermediate run before New Year’s. If I continue to progress in the gym, eat correctly, do the stairs instead of elevators, and rest when needed I now think I can ski a black diamond run before the end of this season. As a one time certified ski instructor this isn’t a huge accomplishment, however as a total hip replacement patient this would be an incredible accomplishment. In my head, one accomplishment beats a bad pain day any day of the week and twice on Saturdays.
In the end there is just life. My life is no better or worse than a healthy person, the President of the United States, or fellow patient and close friend Julie. I believe that it wasn’t a miracle that I returned to skiing or that Britt wants to live a life that defines her as a person and not a patient. It’s just us being unique individuals. All of this is just our individual journey through this thing called life. As so-called patient advocates or community leaders, we have chosen to put our lives onto social media for others to read and use to help better fellow patient’s quality of life. Our hope is to prove that we can overcome obstacles or mountains in life. We write about and share topics that interest us as individuals, which is hopefully reflected in the quality of our work. However, I understand skiing or climbing mountains isn’t everyone. The ultimate trick is to find that resource, book, person, social media outlet, or Starbucks that helps you raise your own quality of life. In the end, that is all we are doing by using athletics to our advantage.