This past Tuesday, I had the honor of sharing my patient story at Spaulding Rehabilitation Hospital in Boston, one of the great medical facilities in the country. In my talk, “Partnering with Patients on the Road to Acceptance”, I chose to focus primarily on my interactions with various healthcare providers over the years. Just like anyone else dealing with a chronic disease that involves a revolving door of doctor’s visits and specialists, I had many heartwarming and nightmarish stories to share with the audience.
This day had been in the works for several months. It all started when I was connected, through my friend and mentor Dede, to Oz Mondejar, a Senior Vice President at the hospital. After discussing my interest in advocacy and public speaking, Oz connected me to Colleen Moran and Cheri Blauwet, who work on the Spaulding Council on Disability Awareness, an advocacy group within the hospital comprised of employees and members of the disability community. I was thrilled to have the opportunity to speak at Spaulding, as rehabilitation and patient care is near and dear to my heart. Spaulding is also where I first tested out the scooter that I now own, and where I received a splint in my shoe that helps me to keep my balance.
This talk was originally supposed to have taken place back in January, but, as is the story of my life, it was postponed due to inclement weather. Note to self: winter in New England is not the best time to schedule talks! Thankfully, Mother Nature cooperated this time around, although it poured on the way home. As long as it wasn’t snow or ice, it was a win in my book.
For those who are unfamiliar with the Boston area, Spaulding Hospital is a beautiful facility located on the waterfront in Charlestown, a historic neighborhood in Boston. Only a short distance away is the Tobin Bridge and the Charlestown Navy Yard. The view of the harbor and the downtown skyline from the front of the hospital is breathtaking. Also on the premises is a fully accessible playground, enabling any child, no matter their level of ability, to have fun and be a kid.
Spaulding Hospital has a tremendous reputation; after all, they invited me to speak there (just kidding). In all seriousness, Spaulding is known for its world-class facilities, groundbreaking research, and above all, compassionate and knowledgeable staff, treating anything from a routine sports mishap to a catastrophic injury. In 2013, Spaulding made headlines for helping many victims of the Boston Marathon bombings recover from their injuries.
As a result, I knew going in that my audience would consist of professionals who understood the patient condition, but who still valued hearing new perspectives.
In my talk, I described the arc of my patient journey, from being symptom-free for the first 21 years of my life, to falling for the first time, all the way up to today, where I spend most of my time outside the house in a wheelchair. I described what it was like physically and emotionally to have a degenerative muscle disease, and how my life was turned upside down to the point where I feared for my future. Intertwined throughout my story, I described my interactions with healthcare providers and how they inadvertently contributed to my feelings of hope and despair.
More specifically, I shared anecdotes about my first neurologist who seemed apathetic to my fears, a physical therapist who, although well intentioned, was adamant that I push myself physically to keep the strength I had (a terrible idea in retrospect), and, more recently, how my current neurologist enabled me to dream big and not let my disease stop me from achieving my life goals.
While recounting these stories, I wanted to be mindful of my audience, who see patients on a regular basis. I prefaced my talk by saying that these were merely my experiences, and not indicative of all doctors and healthcare professionals. I explained that my hope for the talk was to impart on them a piece of knowledge or a perspective they may not have considered. I was definitely not there to tell them how to do their job. As a result, I think it helped to build a connection with my audience from the outset, and made them more comfortable when it came time to ask questions.
I received a lot of great questions, ranging from how to approach patient conversations under severe time constraints, to how doctors could best enable patients to achieve their goals. More specifically, I was asked how to tell a patient that they will not get better, without crushing their hopes and spirit.
The truth is, it’s a very delicate conversation to have with a patient. For someone who suffered, say, an irreversible stroke, or who has a muscle disease like mine that isn’t going to get better without medical intervention, how do you disclose to someone that the future is going to be hard, without sounding emotionless or detached from reality?
As I write this, I realize I could write a blog post on that one question alone. The short answer is to be honest with the patient on what they can expect, but also not to abandon them! A doctor who is a source of support for the patient, who sincerely cares for their concerns and encourages goal-setting, can be a life-saver. A lot of times, doctors don’t realize how a simple act of compassion and positive reinforcement can inspire a patient to keep fighting and persevere. In my own life, my current neurologist, Dr. Brown at UMass Medical School in Worcester, helped me to frame my disease in the proper context, and it has made all the difference for me. He was the one who, after listening to my doubts, encouraged me to still apply to business school.
All in all, it was a great day. I got the sense that I brought up issues they had not considered before when dealing with patients, which was the goal of my talk. The way I see it, if I can help even one doctor or patient, then I have done my job. The way healthcare is today, both doctors and patients are overwhelmed. Having authentic conversations is, and will always be, the most important first step to take in successfully navigating the complexities of healthcare. When a doctor feels like they are making a difference in a patient’s life, and when a patient feels like they are genuinely understood and cared for by the doctor, that is a beautiful thing.
There are many people I’d like to thank. First off, I’d like to thank my friend Dede for making the initial introduction. Thank you also to Oz Mondejar, Cheri Blauwet and Colleen Moran at Spaulding for helping to organize the event, and for everyone who took time out of their busy schedules to attend on their lunch break. And lastly, a huge thank you to my dad for driving me to and from Boston, and wheeling me around despite an injured wrist!