the resilience lie

A friend asked a question on Facebook the other day about what resilience means in the context of health and fitness and recovery and, as I have recovered from multiple health and surgical related issues in my life, I have some thoughts on this topic. On the expectations of what we think recovery should look like and why I feel like this is something that needs to be talked about a whole heck of a lot more in the recovery and rehabilitation community.

She also posted the dictionary definition of the word RESILIENCE and the more I look at it, the more I think it’s one of those words we use often, but in the vein of Vizini, from The Princess Bride….

The dictionary defines resilience as the capacity to recover QUICKLY from difficulties. Toughness, elasticity. The ability of a substance or object to spring back into shape.

LOLOLOLOLOLOLOLOLOLOLOLOL…

Okay, I am fine, I have picked myself up off the floor.

For some people, and in some situations, recovering from life’s difficulties can be quick. They can easily spring back to where they were before “the thing” happened. Maybe “the thing that happened” was just a blip, a temporary oops in the universe, and springing back to normal is just that, a simple rebound, a course correction, and BAM! back on track. Good for those people. I am so happy for those people. I am not talking about those people.

The best way I can describe what I mean is by talking about my knees. Yes, my knees, and my knee replacement surgeries and my recovery from these surgeries. But the story started way before that…

As you know, I have Rheumatoid Arthritis. I was diagnosed at 19 years old, something my rheumatologists have now agreed was likely a late diagnosis of Juvenile RA. A disease that unlike the regular RA that hits people later in life with the usual characteristics of gnarled arthritic hands, JRA likes to target your BIG joints. Hips, knees, shoulders, elbows; you know the ones that let you move like a human being and not a robot. At 23, a mere four years after my initial diagnosis (and remember, a late one for JRA), I took a semester off from University and had both my hips replaced. I was the youngest person the nurses had ever had on the unit getting not one, but two hip replacements. And aside from my messed up hips, I had the body of a typical 23 year old. In other words, I was bouncy and elastic (ie: resilient) A.F!

The part about the definition of resilience and my own resistance to the whole “bounce back” narrative, is bounce back to what? At 23, sure it was easy to bounce back after having hip surgery. I was back at work and school within a month of each hip and dancing on speakers at Rebar* not long after that. I didn’t have to think about my resilience at this point in my life, because who isn’t a bloody elastic in their mid-twenties? But there are limits and restrictions after this kind of surgery (and any kind really) and no matter how much I wanted to get back to “normal” after having both my hips replaced, that was never going to happen. To put that kind of pressure on myself was a terrible burden, one that I carried around for a long time. I thought I had to be like everyone else around me, pretend that I didn’t have a chronic disease, didn’t have two major surgeries in under three months, and didn’t need to think about them anymore and could go back to regularly scheduled content. I convinced myself for more years than I like to admit that I wasn’t ever going to let this disease, these surgeries, DEFINE me.

Fast forward 25 years, and in 2016, I was once again facing the prospect of double joint replacements. In my mind, I had convinced myself that I’d get these damn knees of mine replaced and just like that, I’d be pain-free and fully mobile once again. RESILIENCE EXPECTATIONS Y’ALL!

And once again, being a young-ish (by joint-replacement standards) orthopaedic patient, I recovered from these surgeries rather well. I was in and out of the hospital with no complications in under three days for both knees. I did all my exercises as prescribed by the physiotherapists and at my three months follow-up appointment, I impressed everyone with my almost full range of motion in my knees.

The thing was (and still is), NO ONE EVER ASKED ABOUT THE REST OF MY BODY!

Picture this - you have RA in your knees and for years the tissue and joint space is degenerating, at one point you have an arthroplastic procedure to “clean it up a bit”, but the damage continues. It continues to the point that your gait is affected, your knees start to buckle and you become visibly knock-kneed. When you finally make it to the surgeon and on the wait list for knee replacements, he tells you not to worry, he will straighten out your knees and you’ll be good as new after surgery.

Here is a visual for you. These are not my knees, but mine were very similar:

Think about what this immediate change in alignment does to the rest of the body

My surgeon wasn’t wrong about my KNEEs being as good as new after surgery, but what he was wrong about and what I think is lacking in the orthopaedic/joint replacement world is the acknowledgment and proper PRE and POST OP training and rehab for the rest of the body.

I am three years post-op from my last knee surgery in 2017 and I am STILL dealing with the fallout of what re-aligning my knees did to my back and every muscle in my body below my belly button. Six months after my first knee surgery, my husband was literally lifting me out of bed every morning while I swallowed my screams from the pain shooting down my legs. Multiple X-rays and ultrasounds showed no mechanical reason for this amount of pain and I was once again sent for physiotherapy and given pain medication. I spent the next two years jumping from one form of therapy to another to try to deal with this soft tissue and nerve pain and find answers as to why this was happening to me and how to fix it? I am not joking when I tell you that maintaining myself at a functioning level of life during that time was a full time job - so much so that I had to quit my actual part-time job. And by functioning level, I mean that on a pain scale of 1-10, I was spending most days hovering around a 6-7.

I’ve had cortisone injections into my SI joints. I’ve had prolotherapy injections into my lumbar spine to “jump start” an immune response and healing (not a great option for the immunocompromised BTW). I’ve has so much IMS that I think I became addicted to the “hit” of a well placed needle and the short-term release it afforded. I’ve been to all manner of massage therapist and I’ve had more epsom salt baths than a normal person probably should in their life time. I am not saying that none of these things helped, they all did to varying degrees and for varying lengths of time, but the pain persisted.

You guys, I am resilient AS FUCK, but nothing has been quick or bouncy about this healing process and the traditional definition of resilience in this situation simply DOES NOT APPLY! And because I have been so bloody resilient in the past and bounced back so well from my past surgeries and experiences, the expectations I had placed on myself were that this time would be the same. Fix my knees, fix my life.

HA!!

It has taken me three years to accept that the lower half of my body was literally REBUILT on an operating table and the old ways of moving said body were just not going work with the new hardware and the new alignment. It has taken is me this long to realign both my expectations and my body. Three long years spent on therapies that were never going to work long term, on testing and health care expenses that never provided answers (because nothing was “wrong”), and three years that kept me in a state of perpetual anxiety and frustration and yes, depression. To say I was MAD about this in a gross understatement.

Six months ago, I met Toni Harris. “Toni is a certified Personal Fitness Trainer through the Canadian Society for Exercise Physiology, and is a Corrective Exercise Specialist through the National Academy of Sport Medicine trained through NAIT’s outstanding Personal Fitness Trainer program.” and she has made all the difference in my recovery. From explaining how my muscles and fascia works, to helping me understand the brain-body connection more and how to work this to my advantage, to reframing my restrictions and limitations because of the orthopaedic surgeries. She has also gently pushed me past my patterns of physical and mental resistance with her patience and ability to explain why my body does what it does. I am stronger now than I have been in a VERY long time (if you recall - I mentioned jumping a few posts back) and it makes me wonder how much further along I would be if Toni had been part of my PRE-hab and post-op rehab life three years ago.

This post is about resilience in the face of health challenges and I guess my point is this: if the expectation is to GET BACK TO WHERE YOU WERE BEFORE, to be all fixed and good as new so to speak, I believe we will always fall short and be disappointed. Major surgery changes the internal structures in your body and regardless of how seamless the healing process is, some things are just not going to work like they did before. Trying to jam a square peg into a new rounded out hole will not work and along with the resilience that we want to have with any health challenge or injury recovery, these expectations have to be tempered with the reality of how our bodies heal.

Had someone explained to me the impact that realigning my knees, and thus altering the way my body used muscles different from the ones I’d been using to move for the past 20 years, I would have been way more prepared for the challenges I faced post-operatively. I would have understood the need to RETRAIN both my muscles and my brain and the connections between the two and not have spent so many years (and so much money) looking for a reason for the pain and something to fix it.

I know I’ve been talking about my experience and my specific surgeries in this post, but I believe this concept applies to many kinds of health challenges or injuries and “bouncing back” from these. When we better understand why the body does what it does and why (hint - most often done to protect), that is when recovery and rehabilitation will truly be transformational for people.

I know it has been for me.

XOXO,

N~

*you have to be a certain amount of years old to remember Rebar and my dancing on the speakers. Both were epic!