[This post was originally posted in the wrong location – sorry about that!]
Greetings, internet! As a friend recently pointed out to me, it’s been a while since my last post. In my defense, I started a Masters degree in Education, submitted PhD applications for History programs (that’s right – a semester of Education school has confirmed that I’m a medievalist at heart), started an internship at my Ed school’s Access and Disability Services office, wrote a story about burrata, wrote an article on the accessibility of voting booths (yes, it is a modified blog post), wrote a story that got published in the New York Times Disability series (holy moly), and am helping my sister plan her wedding (yay!).
That said, I’m going to be better about blogging this year. Because it’s been about four months since my last post, and that is far too long.
My NYTimes story was published online this past Wednesday, which was, weirdly enough, a day before my nine-year injuriversary (i.e. injury anniversary, but mashed together to make it sound cuter than it is). Nine years ago, I was wearing a neck brace, incapable of writing with my right hand (or using it, in general), and hooked up to an IV that would dispense morphine through my system at the push of a button.
I was also very confused. A major neural highway in my body had just been damaged, and my body had no idea what was going on. At this time, I figured the doctor could explain what was going on, or offer some assurance that things would get better. Anyone who ends up in the hospital wants to hear good news, or at least some kind of silver lining. Sure, friends and family can provide an incomparable support network, but it really helps to hear something concrete and positive from a medical professional.
I wish I could say that the doctor at my first rehabilitation hospital in NYC offered concrete encouragement and support, but such was not the case. I was a minor at the time, which meant that the doctor gave her prognosis to my parents instead of me. Here’s the gist of what she told them:
- Your daughter will require frequent hospitalizations for the rest of her life due to complications from her injury (e.g. pressure sores, blood clots).
- Your daughter’s condition will not improve beyond the first six months.
- Your daughter will have a lower quality of life due to her injury.
- Your daughter will have half the lifespan she would have had prior to her injury.
Essentially, a shortened and weakened life. No wonder the “better dead than disabled” narrative is so popular. My doctor expected my parents to break this news to me immediately, but several years passed before my parents told me any of this (and in case you were wondering, yes, I’m glad they kept me blissfully ignorant of the doctor’s news). At the time, all I remember is that my mother wanted to transfer hospitals. But it was close to my home and high school, and teachers would visit me to give me assignments for classes (I was still taking AP History, AP English, and Precalculus). My Precalculus teacher even stopped by every week to teach me the curriculum. And so I did not transfer facilities until five months later.
To be fair, the nursing staff at this hospital was beyond fantastic, and I still keep in touch with some of the physical and occupational therapists on Facebook, but the doctor who spoke only of gloom and doom made me want to set buildings on fire (unoccupied buildings of course, because I would never want my hypothetical acts of arson to hurt someone). When I participated in a storytelling event at my Ed school in November, I mentioned a doctor who discouraged me from applying to college. This is that doctor. She didn’t wait for my parents to tell me about her thoughts on college, and so she told me to my face, and then told me to travel instead.
Looking back, it’s easy to say that this doctor was out of line or hurtful. But there was some truth to her prognosis. If I had done nothing to stay healthy, then yes, I would have required frequent hospitalizations. But her words can create a self-fulfilling prophecy. If my parents had listened to her and had not tried to enroll me in physical therapy programs, or purchased equipment such as a Functional Electrical Stimulation cycle or standing frame, then of course I would not have improved beyond six months. Improvement takes a tremendous amount of effort.
But the doctor didn’t say that improvement takes effort. She didn’t say that certain pieces of equipment could keep me healthy and keep me out of the hospital. Perhaps she didn’t know the most recent literature on spinal cord injuries (which makes sense considering she was the head of a pediatric unit and not an SCI specialist), and didn’t know that people with SCIs can regain nerve function well past two years.
My issue with what she told my parents isn’t that she was unfamiliar with SCI literature. It’s that she took the worst-case scenario for my injury and described it to my parents as if it were inevitable.
I talked to a friend of mine who is currently in medical school about this, and whether med students are given better guidance on bedside manner than was given to this particular doctor. After all, that doctor was at a retirement-friendly age. But my friend did not have a terribly optimistic answer. That most likely means there are doctors across the country giving people with recently disrupted nervous systems the same bleak prognosis I received, with little to no silver lining.
And so, for you current and future med students/doctors, let me modify what my doctor told my parents to make it more palatable. Should you ever come across someone who has recently sustained a spinal cord injury, perhaps these can be of some help:
- Your daughter will require frequent hospitalizations for the rest of her life due to complications from her injury (e.g. pressure sores, blood clots), but only if she doesn’t take care of herself.
- Your daughter’s condition will not improve beyond the first six months, but a physical therapy program could help. I know of some programs that can keep her in shape.
- Your daughter may have a lower quality of life due to her injury because there is still, unfortunately, a stigma associated with disability. But she might be able to meet people in college if you tell her to be less self-conscious about the wheelchair when talking to classmates. Also, there are adaptive sports that she might enjoy playing.
- Your daughter will have half the lifespan she would have had prior to her injury if she doesn’t take care of herself. She has more health risks than a typical teenager, and so she needs to be particularly mindful of what she eats and how often she exercises.
It’s still a rough prognosis, but there’s far less gloom and doom. And in all honesty, I wish my doctor had said something like this to my parents because it is significantly more accurate. Not to get all preachy, but the worst-case scenario happens when you do nothing, and when you think that there’s nothing you can do. And in the case of a spinal cord injury, you may be able to qualify for studies that have an exercise component to them (such as the Reeve Foundation’s NeuroRecovery Network). Yes, there are waiting lists for these programs, but that’s no excuse for not telling a patient about them. There’s also Project Walk, and if you’re in the NY/NJ area, my gym, Push to Walk, which provides financial aid to help defray the cost for those who wouldn’t be able to afford workouts there otherwise.
I understand where my doctor was coming from when she said that my quality of life would be lower than it would be if I didn’t have a disability. People with disabilities have a higher unemployment rate than those without disabilities, and they face stigma and stereotypes. And the first two years after my injury were rough. But then I picked up hobbies (e.g. learned guitar), socialized more (those guitar lessons actually came in handy), and found communities of people of various abilities who thought I made for fun company. I am pretty disappointed that my doctor never once mentioned adaptive sports, though, especially since she knew I was on the track team in high school.
Please understand that I am not trying to paint a rosier picture of life with an SCI, and I am not saying that my doctor should have played down the realities of SCI. It’s difficult. It requires resources that unfortunately not all with SCIs have. And I know that I speak from a place of privilege because I bought my own physical therapy equipment (with money raised from my high school fundraiser and my parents’ insurance) and can spare the time to go to an SCI gym in New Jersey when I’m not at school. I have a support network that has made the past nine years productive and worthwhile. But regardless of my background, my doctor should have told my parents the worst-case scenario, and then told them how it could be avoided.
And so I’m asking current and future doctors who have patients who have recently sustained a spinal cord injury (if any of you read this), please tell them what the worst-case scenario is and how it doesn’t have to end up that way. Tell them about communities of people with disabilities who form positive relationships with each other and with the able-bodied. Tell them that, if they’re in high school, that they can go to college (but they will have to contact that college’s disability services office in advance to make sure it’ll be a smooth college experience). Tell them that they can stay healthy by joining adaptive sports teams, going to SCI gyms like Push to Walk, and going to NeuroRecovery centers. Encourage them to start fundraising, because life with an SCI gets expensive. But most of all, tell them that they do have some control over how their life with an SCI plays out.