Perfectly Imperfecta

"A Different Perspective" will feature posts from those who are close to me. I thought this would be a great way to let you guys 'meet' people in my life and get a glimpse of the people who make me who I am today! This post is written by my older brother, he is currently a pediatric resident at Children's Hospital in Boston.

The heart monitor reads eighty-nine, beeping softly in the dark room. Sandy tries to turn to her left, but the cast on her right leg inhibits her movements. Only seventeen, my sister has endured more hardship than most experience in a lifetime. Born with the birth defect osteogenesis imperfecta, or OI, she has undergone multiple operations and bouts of physical therapy in attempts to strengthen her frail bones and underused muscles. Scientists believe that mutations in DNA encoding genes in charge of collagen formation are responsible for the disease. On this occasion, Sandy is having surgery to replace the metal rod in her leg that two days ago broke through skin and resulted in an open wound.

When I was younger, I would ask my mom questions like "what's wrong with Sandy?", "why is she still at the hospital?", and, the one that upset her the most, "why can't the doctors make her better?" Foolishly, I grew up convinced that the physicians who worked with my family weren't good enough or smart enough to know how to 'fix' my sister. I set out to become a better physician than those who had failed before me. As I grew older, however, I learned of the boundaries of medicine, and how science limited the treatment options available to the orthopedic specialists. By high school, frustrated with the lack of knowledge and choices for treatment in the field, I had abandoned all hopes and dreams of becoming a physician. My family and I had heard enough of their supportive words, their "we'll see what we can do's" and "we're doing all that we can's". Nothing they did seemed to make her pain go away or cure her of her disease. Instead, I aspired to become a researcher.

After high school, instead of attending an accelerated medical school program, I entered MIT, the research institution where I believed I could address this deficiency in information. Enrolling in the biology department, I sought to learn as much as I could about biology and human disease, both its latest advances and its ever-present limitations. As a freshman, I joined the Horvitz lab to study C. elegans and genes governing apoptosis. The following spring semester, I moved on to the Yaffe lab to examine proteins in the DNA damage repair pathway. This past June, we published a paper on the tumor suppressor BRCA1 and the effects of cancer-causing mutations in these domains. Yet, as much as scientists work to understand the body and its function, there remain people greatly affected by disease, both so-called normal people with the common cold or flu and extraordinary individuals who fight for their lives on a daily basis.

At the beginning of our sophomore year, a group of friends and I discovered an EMT-Basic class that the student-run, fully volunteer MIT-EMS was offering in January during IAP. The prospect of helping people in need was alone enough reason to sign up, but really, who can resist driving lights and sirens in Boston traffic? In class, we learned everything in the protocols, from doing CPR to using an SAED, from delivering a baby to when to call for the medics. What thrilled us the most was the immediate application of knowledge from the classroom to the ambulance. Taking every opportunity to ride 'third,' I became a full EMT for MIT-EMS as soon as I earned my certification.

As I gained more experience, I gained the crew chief rating and was even elected personnel officer. The other crew chiefs and I volunteer an average of 24 hours a week, providing basic life support for the MIT community. When I first joined MIT-EMS, I, like every other 'baby EMT,' dreamed of racing to the scene, lights flashing and sirens blaring, where we would scoop up the injured party, pound on her chest, pump air into her lungs, and miraculously bring her back to life. As I rode on the ambulance more and more, however, I discovered the quality that had been lacking in my search for truth and knowledge in lab: a caring word and the touch of a hand for an oftentimes frightened and nervous patient. By actually spending time with patients, I learned that the role of a physician is not just to treat or cure, but also to provide comfort and care, because sometimes not advanced medicines but words are in fact the best treatment. I realized that this is precisely what the doctors and nurses did to not only care for my sister, but also care for my family in our tough times. It is these times that are often most frustrating for patients and their families, but it is also these times when the world needs doctors to show compassion and understanding in the face of inevitability.

It is 2:21 in the morning before Sandy awakens. I slowly leave my chair and walk to the bed. I smile, silently greeting her return to the world. She returns the smile, but winces as her suffering begins again. I look into her eyes and see both her relief that I am there and her struggle against the agony. Suddenly, there is a knock on the door. My father has come to watch her so I can get sleep before school tomorrow. "Hey Sandy. We're here for you." She smiles, nods, and closes her eyes to sleep.

The posts in the "Different Perspective" series are submitted to Sandy but none of the content is changed by the blogger.

It could be to your friend, flight attendant, bus driver, or even a family member - but we've all done it, and done it MANY times: Explain how to fold the wheelchair. I have had manual wheelchairs that stay rigid and don't fold, wheelchairs that fold, and have even seen electric wheelchairs that collapse. It's a part of our lives and while we do it as automatically as someone else ties their shoes, to explain it to someone else can sometimes require the patience when teaching a 5 year old how to tie shoes for the first time.

This post won't go over specific details of how to collapse any wheelchair but instead give tips on giving directions to otherwise "clueless" folks who might not know the handlebars from the brakes.

Giving directions for medical equipment:

A few times I have been out with friends and needed a ride home late in the evening. Giving directions to someone who hasn't folded a wheelchair before, and never mind in the dark, can be quite the hassle. If this happens it might help to turn on all the lights on in the car and try to position the wheelchair as close to the passenger seat as possible so that everyone can see what they are doing!
Be patient. The individual is probably nervous about making sure s/he doesn't break anything and is probably aware of how expensive the piece of equipment is.
Think about it from their perspective! Imagine you are the one standing over the wheelchair and tell the directions from that point of view "so to your left there will be a switch that kind of looks like a fishing hook..." as opposed to "look for the switch, it's somewhere no the left."
I have always found it helpful that my friends and family first make sure the seat belt is untangled from the wheelchair frame. Safety is key and should always be your first consideration!
Take into consideration the size of the car or trunk that the wheelchair will be placed in. If necessary, do some planning in advance. Sometimes I have needed to take the foot pedals off of my wheelchair or with other trunks the tires have had to be popped off.
Don't use language from the instructions manual. Not everyone may understand the jargon from a manual so use language that is easily accessible and quickly understood - especially if you are writing directions for a flight attendant. Words like "seat is velcro and can be detached" as opposed to "remove adhesive from seat to collapse frame."
After you are placed into the wheelchair make sure everything "feels" right. It's important that wheels are not suddenly loose, or that the seat isn't securely fastened in. If something seems awry just calmly help the person figure out what seems to be amiss, but do so from a safe place! Fixing a loose tire while you're in the chair might not be the greatest idea.

Showing posts with label medical equipment. Show all posts

A Different Perspective #2

On Folding the Wheelchair

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