The age old question of, “how are you?”, has been popping up steadily on my phone. After having surgery, one is prepared to answer this question over and over.
Usually, the age old answer is “fine”. No gory details. It allows us to skirt on to other things.
But, you know what…
I’m not okay.
That feels liberating to write.
For the past six years I have been battling my health. It’s not a secret — I created a whole documentary around it. But the thing about chronic illness is that, even though it’s become ‘normal’, it doesn’t get easier. Every year it’s the same mantra: This year, I will get better; and then you try different things each year that, for some reason, don’t work. With TSW, you get the added benefit of rollercoaster flares. You can be pathing forward on the mend and bang, regression.
When regression happens, chronic illness can feel like quicksand. It becomes so heartbreaking to toil through and figure out. You don’t know what caused it or why it’s happening… it just is. You have no choice but to go through it. I’ve tried a variety of things from diets to herbs to stem cells. When you realize they don’t work or aren’t working, you get disappointed — back to square one.
You’d think by now, six years in, I’d have developed a coping mechanism for when things go sour. But the thing is, you’re never prepared, not really.
I’ve used this analogy before in a blog post about the grief of chronic illness. It goes something like this:
A tornado comes and devastates your home, but only yours, no one else’s on the block. People flock to help since the damage is so intense. Their help is a blessing and you appreciate it all, but not everyone can fix the home to 100%. Then, as you feel like the house is almost fixed, a horrible hail storm destroys your roof. That’s more money and time that must be spent on your home. Some people come by and encourage you, but it’s less than before. And as you’re up on the roof, nailing and hammering, a storm blows through and knocks over your favorite tree, which happens to land right on your back porch. And then, as you assess the damage, you examine a room in your home that has mysteriously contracted mold. You try and juggle the chaos; it’s not as bad as the tornado, but you’re exhausted just the same. People cheer you on and tell you how tough you are while you continue to pick up the pieces of each mess, never able to enjoy the actual home you spent so much time prepping for a life.
Six years of hail storms and falling trees. Six years of unexpected mold. Six years of never enjoying a full life.
And the people you love, the people closest to you, are collateral damage. They inevitably pay the price for your illness. You feel this obligation, this duty, to keep afloat for them. When I love, I love hard, and the scars and sacrifices that come with my condition are something that pains me to inflect on loved ones. Events get missed; plans get cancelled. It’s a disappointment that weighs on my heart. To continue being the reason the person you love must forego their own necessities to help care for you is outrageously painful and unfair.
Now, with these current surgeries, I am more vulnerable than ever. My skin has highly regressed, my body stressed out even before the surgeries began. I knew what was coming wasn’t going to be a walk in the park, or even a crawl, but when you’re in it, head-first in it, it’s overwhelming. The sleep deprivation, the body trauma, the flaking and aching skin that can never be assuaged, the cabin fever, and the incessant dependence on others for food, clothing, every day chores is maddening. Even as I write this, I’ve had to take a break already to re-wrap my arms with shea butter and zinc while itching my neck and eyes fervently.
I feel trapped.
It’s like I’ve been on this pedestal of always needing to have my emotions and life together, that I know suffering and have some sort of resilient armored exterior to it all, but I don’t. What’s worse is that I’m guilty of being the one who put me up on that towering pedestal in the first place. I never want to burden the ones I love and being positive has always been an ingrained trait. However, positivity is a mindset, not a constant state of actual being. You can be positive all you want in a shitty situation — doesn’t mean the pain doesn’t sear past the optimism.
I am desperate to start a new health routine, or process, where I feel a bit more control of my health. There are tests I want to run (just more and more money), while also pursuing a new career (of which I am still lost) because teaching has sucked my spirit dry. I don’t think working inside a school, especially this year, has contributed fairly to my health. I put 110% into everything I do but feel no reward from my efforts. I just want to move on.
Right now, I feel so stuck. I want to be left alone. Healing starts with getting at your core and fixing from within. It usually involves crying and purging, but with constant babysitters (which are the LAST people I want to break down in front of), I feel like a constipated dam of tears. I don’t want to be taken care of hand and foot. I don’t want to trouble the ones I love with my healing. Yet, with a leg I can barely move myself, what else am I but an extension of that leg — helpless and heavy.
I must preface, I am not suicidal. Please don’t get me wrong. Stating, “I am not okay”, should never equate to wanting to leave this beautiful life behind. I am much too stubborn for that.
It just means I am human.
I love superheroes because they are these incredible beings that can withstand the toughest of battles, but they, too, are not immune to awful feelings of doubt, uncertainty, and despair. A chronic illness topped with a wildly dependent recovery road from two surgical procedures is an undeniable recipe for baking a good ol’ batch of “I’m not okay”.
And that’s okay.
This is just a bumpy road on this path of my life. It pushes me and molds me; and I’m trying to make sure it does so productively. Who knows if I may lose people or gain people along the way. But, I do know, I’ll brilliantly still make it out alive with that positive little mindset.