This is part of a series about extraordinary experiences in personal health. Share yours at firstname.lastname@example.org.
My son was born three months early weighing just three pounds. Because he was so tiny when he was born, I hadn't considered the fact that one day he would literally wear me out.
I was diagnosed with juvenile rheumatoid arthritis at the age of 6. Arthritis is an autoimmune disease whereby the immune system attacks one's own body, resulting in pain, inflammation, damage and deformity. There are more than 90 types of arthritis, and mine manifests in all of my joints. In some, the joint lining is worn away and I am left with painful bone-on-bone rubbing, in some instances dislocation (all my large knuckles). I'm 38, but my hands looks like they belong to an elderly person.
As my son grew heavier but still required hands-on care, the pressure on my joints accelerated the damage to the point where it became irreparable. And so, a few years ago I found myself at the point that I had always known would come, but dreaded: the time to replace all of those damaged joints.
My first to go were the large "knuckle" joints on both big toes. I've also had synovectomies (surgeries to clean up gummy swelling of the joint lining) in both wrists and ankles, tendon transfers from pointer fingers to thumbs and ulnar head removals in both wrists. I have had a hip replacement (in 2013) and a shoulder replacement (in 2015). This month I will undergo my 13th arthritis-related surgery, so I have my pre- and post-op routine pretty dialled in.
One to two days before the surgery, my preparation moves from wrapping up my business and household items to delving into my own body and mind. I like to take a bit of "me time."
The weekend before my hip surgery, for example, I spent a day at a spa in Whistler, B.C., having a silent, introspective experience. It's a reckoning of sorts, checking in and asking if I weren't to come back, would I be at peace with the way I had left things?
The day before a surgery, I write letters to the people I love, to be opened in case I don't make it. That sounds dramatic, but there is real danger with any operation and I have quite a risk when I have to be put under completely. That's because my neck is so unstable, from years of disease activity, that inserting the breathing tube (intubation) after a general anaesthetic is administered is too dangerous. There's even a possibility of me ending up paralyzed if any mistakes are made, and so they need me awake to provide feedback. I underwent an "awake intubation" for my shoulder replacement. I do not recommend this.
Going into the hospital has become more emotionally fraught since my son was born six years ago, because I hate to be away from him and I don't want him to be anxious or afraid. On the night before I make sure to snuggle with him until he falls asleep in my arms and perhaps cry a little into his sweaty hair, with gratitude that I have him and with an understanding that I need to go through the immediate pain of the surgery and the pain-in-the-butt of rehab, for him as much as for myself.
I usually stay up into the wee hours, too wound up to sleep. By the time I'm admitted to hospital, and having said goodbye to my family, I'm often trying to reconcile the dichotomy of my day-to-day experience. I feel like a vibrant, vital, active young woman trapped in an old woman's body. And I get angry with myself that my body is doing this. I ask myself, through clean living, exercise, complementary therapies and medications, why the hell can't I make it go away, make it stop? Why am I not powerful enough to fight it? The onslaught is relentless … and so is my guilt.
The hour or so before a surgery is not the best time to ask oneself such questions, but it's inevitably when I get the most introspective. And then I return to the bustling activity around me, and am wheeled into the opreating room to be fixed.
Awakening from joint replacement surgery is not like my experience with any of the other surgeries I have had. With those, the pain upon waking up is immediate, unrelenting and something that cannot be prepared for. It feels like I just shut my eyes, heard my last breath echoing through my ears, then immediately opened my eyes and was hit by a truck.
With joint replacement, though, there is usually a catheter inserted into or near the joint to deliver pain meds more effectively to the site, and so waking up is gradual, quite comfortable and not jarring at all. It feels like gently floating through a substance heavier than water, like gel, from a far down depth all the way to the surface and gently breaking through to consciousness. Monitors beep and nurses warble, they say hello and I mumble a greeting and dip back into that delicious floating sleep.
My shoulder replacement surgery was the most disconcerting experience with pain yet, as I knew my body had been through a great trauma but I was too comfortable to believe it for many hours after having woken up. Inevitably, the pain hit, and while medication took care of most of it, it shook me to know that it was just masking or covering up the signals from my body screaming out.
A lengthy period of rest – some replaced joints are immediately weight bearing and some non-weight bearing – and then weeks of physiotherapy follows. Once rehab is done, the actual joint doesn't feel especially different physically, but more so viscerally or even emotionally and psychologically. It doesn't physically feel foreign but I did have to get over the initial sense of uneasiness about having something foreign in my body.
At the same time, these are also incredibly empowering experiences. My new body parts give me permission to say "I am titanium," and that's not just a line from a pop song. To know that I can handle anything I have been through yet and come out stronger, gives me a quiet inner strength and even confidence that I likely would not have had without this disease.
Tamara Komuniecki is a journalist and owner of Delish General Store on Granville Island in Vancouver. She advocates for arthritis research.