Six years ago today I had a six and a half hour operation at Shriners Hospitals for Children in which six different surgical procedures were performed on yours truly. I was 14. Each year, I tell myself I’m going to say something to mark the occasion, but this is the first time girl can get her words together.
Firstly: let’s stop asking if I’m glad if I had the operation. That question feels out of place and makes me squeamish, mainly because it didn’t feel like I really had a choice even though, yes, on paper it was elective. And more importantly I did go through with it, regardless of the results or implications of that decision today. This is where I am; these are the legs I have. This question is irrelevant and offensive, because asking me to ponder a reality that can’t be mine is not conducive to my emotional well-being. I have nothing to compare the “now” to. I can’t look into a crystal ball and see what my life would be like if I’d opted out, nor is there any way to quantify which path is “better” if I could. Furthermore, if we could quantify such things, I can’t turn back the clock. I made my choice, and if I indulged people in this curiosity, I’d be pointlessly dwelling on an experience far far away.
It is worth noting here that the only folks to pose this question to me are abled-bodied, who have overwhelmingly not had to make such a choice. A fellow crip has never wondered, or just known enough not to ask. This detail is telling of an important quality of the disability community as a whole. I try not to speak for others, but I can say confidently that as a group, we by virtue of what is handed to us in the day to day do not make a habit of wondering what would’ve happened if we’d went left instead of right. This is because folks with a wide array of ability status variations are handed a million smaller scale defining decisions that affect us in big way later on. For example, do I use my wheelchair or walk today? Which of the close busses do I catch to work today? How much time do I leave myself to get ready in the morning? These are all day to day variables that seem small to others, but determine my professional tardiness, safety, and well-being. Because of the nature of my symptoms, I have to answer these questions differently each day. So I’ve gotten used to not questioning my self care choices, but instead laying in the bed I made regardless of the outcome. Because while every once and a while I may miss the mark, stewing in this error doesn’t help me, nor does an Abled telling me I “should have planned better” This is the case for so many others with disabilities, so such etiquette is carried over to larger-scale choices, like surgery.
So, now that we’ve established I had the surgery, period, what the hell got high-school-freshman me to that point? After randomly being referred to the hospital by a well-intentioned stranger, I got my gait analyzed, and a surgeon offered me 6 all-or-nothing procedures that could “drastically improve” my mobility and long term experience with Cerebral Palsy. But at the end of the day, it wasn’t life-saving, and myself and my parents had to “opt-in”. I was falling a lot, and doctors had been telling me I’d lose the majority of my mobility by age 25 for as long as I could hold a conversation with a doctor. As a young girl who had never known wheelchair usage, I couldn’t conceptualize that, and the time was ticking on making “improvements” to my body because I was almost done growing. I didn’t have a lot of time to make the decision, and the amount of “what if’s” that lay in passing up the operation were too much to leave as a question mark.
To this day, I know I wasn’t adequately prepared for what I was signing up for. But I also know there was not necessarily a way for medical staff to adequately “prepare” a child for such an experience. What followed the actual operation on May 23 was a painful, medicated blur, to the point where I actually don’t think it’s worth trying to recount my 10 day hospital stay. What I can say about my experience with the hospital experience overall (pre-op, recovery stay, follow-ups/PT) is that ableism in the medical field is alive as of 2012/2013, and largely goes unchecked because of the good reputation the hospital may have, and because by and large medical professionals are given a pass because it is assumed that based on their clinical knowledge, they understand how to apply such knowledge to patients who are medically involved by way of physical disability and/or chronic illness.
Before I begin to explain some of the ways the medical world really f*cked [me] up, I’ll share explicitly that I am simultaneously so incredibly grateful for the medical care provided to me, and recognize the privilege I inherently hold in having access to such services. The biggest, most important lesson I’ve learned in all of this, is that I can hold both truths at the same time: I can live with and process trauma, grief, and exhausting experiences while at the exact same time feeling and expressing incredible gratitude, relief, and excitement. I have no time for nor business with those who shame me for parts of a complex experience that is mine and mine alone to reconcile.
So that said, here are some of the important details of my interactions with the medical community to date, specifically in context to the multitude of operations performed at Shriners Hospitals for Children that I feel is important for others to know about. Take this as you will:
– When the surgical procedures were first presented to me, the surgeon emphasized the cosmetic effects of the operations moreso than any long term medical/mobility benefits (“it will straighten you out! You will stand taller!”)
– When I checked the surgeon on this, he was surprised I, the patient, wanted more detail.
– In my ten day hospital stay, I met 16 different nurses, all of which were named either Judy, Carol, or Marie.
– Somewhere around day 6, one of the aforementioned nurses tried to incentivize me to practice transferring from the bed by telling me I “had to pee” and turning on the faucet in the room indefinitely. I fell asleep, and later awoke to the sound of my mother entering the room and slipping on puddles of water in the now flooding hospital room.
– Also somewhere around day six, a resident was entrusted to hold my leg that had 5/6 operations performed on it during a transfer, and dropped it, causing full hip flexion in immediate recovery.
– There was an overall ignorance of the effects of pain medication/narcotics. Staff did not seem cognizant that the drugs were affecting my ability to communicate, and causing me to become over-stimulated.
– My parents were not fully informed of the extent of the at-home care required until I was already in immediate recovery/imminently requiring said at-home care.
– At the follow up where my first casts were being removed, the cast-remover handled my 5-surgery legs like a sausage link, whipping that sh*t around, causing my mother to scream at him that he “needs to be gentler or I will make sure someone else removes her casts”
– At the same follow up, an X ray tech moved a board to my legs with such force that my shins sustained bruising; when I became upset, she insisted on hugging me as I lay on the table.
– At my 6 week follow up, a PT expressed blunt dissatisfaction at my “lack of progress” saying that “most are up and walking at this point; you should be working a little harder.”
So, yep! That happened. As much as my parents impressed upon me that things “would get better” in the following weeks, because I was young, I couldn’t fully depend on/conceptualize long term thinking, and became depressed in my confinement to a bed and my house as summer carried on outside and I saw fun in the sun all over social media. Eventually, though, I made it to the weeklong vacation on Cape Cod we had planned for the end of July, and I got to have my fun and participate a bit more thanks to the friends I had there being so keen on actively accommodating me in my extremely fragile state.
The months that followed were rough, to say the least. I returned to school as a sophomore, using a big, attention-drawing walker and exhausting myself to get through the school day. I also was experiencing extreme exclusion and some harassment at the hands of my peers, and felt alone in this experience. The charity based actions of a few classmates from the summer had dissipated as the novelty of post-op Sonya wore off, and the status quo of scapegoating set in. I was also still on some pain meds, and struggling through an intense physical therapy regimen.
Eventually, things quieted and I found a new normalcy. When exactly, I can’t say. The following May I had a small follow-up surgery on my hip, and re-acclimated much quicker, despite increased fear this time around as a result of the trauma/physical pain I experienced in the year prior. But I went away to a pre-college program months later, and finished high school strongly. I would go on to college and independent living in Boston, before relocating entirely across the country, where I am now before returning to school. I don’t know if I could do these things if I hadn’t had the surgery. But I know I couldn’t have done these things without the body I have now, and for that body I am endlessly thankful, and have learned to love.
Following the years long recovery, I was granted medical autonomy from parents and doctors, and took several years off of anything medical- PT, working out, doctors, the like. Instead focusing on Sonya the young person. I went out with friends, stayed up too late, learned how to act, and saw what I could of the world, sharing my medical experiences with my new support system sparingly.
In the last two years or so, though, I’ve found relative peace with my experience in being allowed to create my own independent relationship to my body. I work out regularly, see a PT of my own choosing when I can (I have an appointment today!), got a wheelchair, and have been approved/am fundraising for a revolutionary brace called the Exosym*. I live everyday knowing I worked hard for this body, and that this body is mine to do with as I please. Endless shouts of thanks to my parents who saw their adolescent, hormonal daughter through all of this, and taught me how to claim my body as my own, even when it didn’t feel like it.
To those who hung with me through this gargantuan, hard piece of writing: thank you. What I want you to know is: I’m ok. “Hospital kids” are ok, living and learning through it all. My medical history is messy and scary to think about, maybe, but also just an experience like any other. To those in a hospital, maybe confused right now. You are doing your best, keep your head screwed on straight, and keep feeling all of the things. Feeling it all is one of the only ways we know we’re still here.
Today, this is where she stands.
* Find out more on the Exosym here
**This post was originally published on Spastically Yours on May 23, 2018- see it here