At this crucial time in history there are a lot of events shifting our lives. This week especially we watched Baltimore tear itself down and it’s citizens come together to clean it right back up. We cheered on a mother for pulling her son from the riots and figuratively and literally slapping some sense into him repeatedly on live television. But for young woman across the country, this week caused a stir in our lives and our hearts for another reason. That being the untimely and brutal death of Dr. Derek Shepherd also known as McDreamy on Grey’s Anatomy. Young girls and women everywhere were heard crying as they were shocked to see their favorite character of the television series killed off the show. The following day I read article after article and watched several news reports almost poking fun at the disapproval of the shows creator’s choice to kill Patrick Dempsey’s character. Fans immediately went to social media to post about their anguish and inability to comprehend and accept Dr. Derek Shepherd’s television death by auto accident (audible sigh of relief from husbands and boyfriends everywhere). I had a little bit of a different reaction to the death of McDreamy.
No one really talked about the raw reality that the show illustrated about physician error and the dying process. One of which I thought was very rare for the show and should be noted. After all, McDreamy did survive a plane crash and being shot during a mass murder. What goes through a person’s mind while they lay there, helpless and in agony, unable to speak or communicate. Any of us who has ever been in the hospital, as Dr. Shepherd so eloquently played, unable to communicate his wants and needs, can attest to the show’s authenticity. I can. As a patient and a clinician.
“I’m going to die because these people haven’t been properly trained”. That’s the line that stayed with me as I was just discharged yet again from another hospital stay only one day ago. Every time I go to a MD I enter with some version of that sentence in the back of my mind because I am always a threat to doctors and I know that the majority of them are not trained to deal with me. I scare them. None of them know what to do with me because I have such a rare disease all normal evaluations and treatments do not apply to me. I’m used to being ignored. So I in turn often ignore my symptoms until they get so bad that they are in fact an emergency because when you tell an MD “I have a pain” they often reply with “It’s probably muscular” or my favorite “Well you’ve been laying here for a while” instead of taking my complaints seriously and probably preventing said emergency. I’ve always had to find a physician that can think outside of the box or even better who knows and understands what my disease is. Both are a rarity. This has been my routine for the past 12(ish) years.
Derek knew he needed a CT scan (he plays a Neuro-surgeon and it is… TV!). But he also had aphasia due to traumatic brain injury and lost all expressive language so he had no way to advocate for himself and had to rely only on the treating Dr’s abilities to recognize the fact that he couldn’t speak and most likely had a brain injury. He was silenced. He was ignored. If I had been completely ignored, I would have died 10 years ago, the first time I went to the ER.
“I’m going to die because these people haven’t been properly trained”. August 2004 I slept through my alarm for the first time in four years and awoke to my phone ringing. I answered to my boss on the other end saying he was about to call the cops and have them come to my apartment he was nervous something happened. I immediately hung up the phone, jumped in a cab and went to work. Half of my face felt frozen and was swollen to the size of a watermelon, but it was already noon and I had to get to work. I knew something was very wrong as the day continued, but I pressed through and got through the day. The following morning I awoke and my face only got bigger. My mouth felt like I had gotten a Novocain shot and was throbbing. I felt that doom feeling we all hear about. Physically I had no idea what was happening to me. Until then I’d only dealt with the flu and chronic sinus infections. I took myself to Manhattan Eye and Ear’s Hospital at the recommendation of one of my MD’s and after waiting for what felt like an entire day, I was brought into an old room with an even older MD who barely looked at me. I sat in what looked like a dentists chair as this awful man poked around in my mouth with a tongue depressor and I cried because it hurt so much. I remember it being a Friday afternoon because I was supposed to call my friend to let her know if I was going to make it out to our Hamptons house that weekend or not. The MD gave me a prescription for some antibiotics and sent me on my way. I begged him saying, I don’t know what’s wrong, but I do know it’s Friday, and whatever it is, I need more than antibiotics. He refused. As I walked into the hallway, my mother had just gotten there and we went to the nurses station for our follow up report. I pleaded with the nurse knowing that if I had gone home with a simple antibiotic I could die. Lucky for me, she heard me. She heard me because I could speak for myself. And she was willing to listen. She called Lennox Hill Hospital ER just around the corner and told them to expect me. I was admitted to Lennox Hill by midnight and stayed through the weekend. I had an oral abscess that was clearly severe and needed to be drained and on IV antibiotics or my brain could have been infected and I could have died.
This is just one example of many times I have been misdiagnosed, mistreated, maltreated, neglected by physicians. But it comes with a caveat. Maybe I was not communicating my illness/symptoms/etc. efficiently and maybe the MD’s were not listening effectively. Communication is a two way street with a speaker and a listener. For communication to be effective, both must be willing and functional. Medicine is a tricky business. MD’s, clinicians, therapists, are not miracle healers. Every once in a while they can be. I certainly am proof of that as I am a survivor of a coma. However, for treatment to be effective, and most prolific both the patient and the clinician must advocate and communicate their wants and needs with each other and the caregivers in a successful professional and helpful manner. Maybe if someone was there advocating for McDreamy, he'd still be alive???? Wishful thinking I guess!
Amy Reinstein, M.S., CCC - SLP