They've been quietly watching me from the closet for a few years now, just waiting for that moment when they will be back in my life again. I see the silver metal glisten as I take them in my arms. They make me feel powerless, weak, and self-conscious; however, I know that I am now dependent upon them once again. I need these bastards.
Sound like an abusive relationship?
Um...that's because it is..it really f'n is.
I'm back on the crutches.
I remember crutching out on our dock at Candle Lake, one of the first summers that I was on crutches. A boat cruised by slowly and I heard a guy say, "Hey, that girl is on crutches!" Funny enough, about a year later, after my 3rd or 4th knee surgery, I crutched out on the same dock and watched the same boat cruise by. The same guy yelled, "Look! She's still on the sticks!" Haha! If that guy could see me now, nearly 9 years later, still on these same damn sticks.
I had a good run...2 years without crutches is a new record for me, in fact. But it was only a matter of time before things would deteriorate again - such is the progressive nature of the rare Osteochondritis Dissecans with which I am diagnosed.
My right knee has deteriorated to the point where in addition to the 3 known lesions in my cartilage, I have developed a new large lesion. Unfortunately, my cartilage that was growing in a lab in Boston expired over Covid (did it go rancid? Moldy? Stinky?), so there is no cartilage readily available for a transplant. I am booked on June 4 in Philadelphia for a cartilage biopsy, as well as an overall "clean-up" of cartilage (This will be my 12th knee surgery, if anyone is counting). At that time, they will know if I'm still a candidate for a transplant. If my lesions have become diffuse, as opposed to localized, then I hit a point where the MACI (Matrix-Induced Autologous Cartilage Implantation) is no longer an option. If that's the case then...well...I don't know what happens next - mermaid tail, I suspect (and secretly hope).
Unfortunately, because I've been stubbornly limping around with no crutches, my left knee, the "good knee" is now in distress as well. I haven't gone as far as to request an MRI, so I'm just going to assume that it's tired from carrying the load. Let's go with that for now and hope that the addition of the asshole crutches helps the situation.
So...you know...here we go again. I am now in significant pain, which has crept up on me over the past few months. I'm trying to manage the pain with the perfect combination of medication that doesn't make me sleepy/stupid/nauseous and incorporating acupuncture, massage, and spinning in my weekly schedule, so that I can still maintain my full-time work schedule with the kiddos. It's not ideal. I typically push through the day and then collapse on my bed at 4:00 for the rest of the evening. My cartilage may have given up on life, but it's important for me to maintain a routine in order to feel like I'm not giving up. It's not easy for me, but I know that it's not easy on Evan either.
I don't think that a lot of people consider the caregivers of people with chronic illness. If you look at Evan, you will see a fit, upbeat guy who has his shit together. And he does...but I know that this is all very difficult for my bud.
When I was initially diagnosed nearly 9 years ago, it took both Ev and I quite some time to fully process the reality of the situation. We owned a gym at the time, and Evan was throwing himself into his business, working 12 hour days, while I spent the majority of my day on the couch. I was annoyed and frustrated. I didn't think that he really cared about me, and I began to question the sincerity of his "in sickness or health" vows that we took about 7 years prior. One day, however, as Evan made dinner, I heard a strange noise that I had rarely heard before. Evan was crying. When I turned to look at him, he cradled his head in his hands and began sobbing on our kitchen island.
"What's wrong?" I asked, assuming that something awful had happened.
"It's just...you're really sick. This isn't going away," he communicated through tears.
It occurred to me in that moment, that this wasn't just affecting me. This was something that would affect us and our future forever.
Thankfully, I have a a super teammate in Evan. After 9 years of navigating this disease, although we still have our ups and downs, we do have a rhythm. For example, he knows that pain takes away my appetite, which then leads to gastrointestinal issues...so he starts stocking the cupboards with beige food like potatoes, macaroni, and porridge, and will simply bring me a bowl of macaroni when he knows I haven't eaten in a while. He reminds me to keep moving, even when I feel like I can't, and will open up the hot tub and physically put me in it himself if need be. He knows that if I'm snapping my fingers that indicates that my pain is out of control (it's a weird thing that I do when things are bad bad). When my crutches fall, he picks them up and pretends to fight them until I'm laughing hysterically. He is my number one support, and I cannot thank him enough for being my person.
But...man I feel bad when I see that look on his face - the look when someone you love is in pain, and there's nothing you can do to help. I know that I'm not the same girl that he married 15 years ago. I'm a little less fun, a little less funny, and a lot less mobile. I know that we all change over time. That's inevitable. I mean, Ev no longer emits the sweet scent of hockey gloves ;) hehe. I know that he loves me unconditionally (just as I do him), but I can't help but feel sad for him. It's a lot. I don't think that many people consider just how difficult it must be for the spouse of someone who is suffering.
So...if you know someone who is enduring health issues, please don't forget their caregivers. Check in every once in a while. Be cognizant of the fact that being a caregiver also takes a physical, emotional, and mental toll on your health. Caregiver burnout is a real thing.
I'll leave you with this riveting dialogue in which I participated allllll week long:
Student: Ms Kirstie why are you on crutches?
Me: I hurt my knee
Student: How did you hurt it?
Me: I have a disease that makes it hurt
Student: How did you hurt it?
Me: I didn't actually hurt it. Something is wrong with it that makes it hurt.
Student: How did you hurt it?
Me: I was jumping too high
Student: Oh. How high did you jump?