I will never forget the feeling of despair.
It was October 2011, and I was sitting in my neurologist’s office, staring blankly at the floor, devastated. I had urgently scheduled the appointment after recent developments in the progression of my muscle disease, Limb-Girdle Muscular Dystrophy Type 2B (also known as Miyoshi Myopathy). Two weeks prior, I had fallen for the first time in my life, at the ripe age of 25. I was walking to the store when my right knee gave out and I crumpled into a heap on the sidewalk. I thought that moment was devastating in its own right, but I had no idea the worst was yet to come.
The neurologist, whom I had seen twice before, was overall a nice guy. However, in my moment of vulnerability and fear, his words were anything but comforting. After I detailed my fall, he nodded and proceeded to tell me how my life would have to drastically change. “You are probably going to have to move out of your apartment,” he told me dryly. I was living with my best friends in a two-story walk-up, and was starting to struggle on the stairs, so although it didn’t necessarily come as a shock, it was still tough to hear. I was going to miss my friends terribly.
Unfortunately, the news got worse. “You’ll also probably need leg braces,” he said. Leg braces? All I could think of was Forrest Gump, and how, while standing in the road with his braces, unrepentant bullies hit him in the face with a rock. The news I was hearing that day felt like the rock. When I pressed my neurologist on what I was to expect in the future, he sighed and said, “You will probably be in a wheelchair by 30. It is not a guarantee, but that is the likely progression with this condition.” I looked at my parents, who were with me, and could see the color drain from their faces. “I wish I had better news,” the doctor told me when the appointment was over. “Just hang in there.”
I left that appointment despondent. It wasn’t a death sentence, but it also wasn’t a ringing endorsement of the rest of my life. I have five years left of walking, I thought. It was all too much to process, made worse by the fact that he offered no positive encouragement to soften the blow.
Already down on my luck going into the appointment, I spiraled further into depression. What can I reasonably accomplish in life if I’m going to continue to get weaker every day? Are any of my goals and dreams realistic now? Will I have the courage to deal with the difficulties to come? My life, for all intents and purposes, felt like it was over.
A few months later, while desperately searching online for any shred of hope, I came across a neurologist based out of Worcester, Massachusetts who was well-versed in my condition. I quickly scheduled an appointment for June 2012. I figured, at minimum, he could explain the science behind the disease, and keep me up to date on any progress on the drug front. If I was lucky, he might even be personable and sympathetic.
In the first ten minutes of my appointment, he told me more about my disease than all my previous doctors combined. I knew I was in good hands. Yet it wasn’t his knowledge that ended up making the difference that day.
After examining my muscle strength and telling me about the latest scientific progress, he started asking me questions I didn’t expect. What are your dreams? What do you want to do in life? I hesitated, saying that I wanted to go to business school someday, but didn’t feel I could go through with it. I told him that I had aspirations of working in the healthcare sector, helping patients, but with my declining strength and energy, I didn’t know how I’d be able to hold down a job long-term.
After listening intently, he gave me one of the most important pieces of advice I’ve ever received: “Don’t let this disease prevent you from achieving any of your goals.” He then proceeded to share an example of one of his patients who had battled ALS while attending Harvard Business School, and another man with my condition who was a businessman and who traveled frequently all over the country. “It might take some extra planning, but this disease doesn’t have to dictate what you do with your life,” he said. “It is only a part of your life.” I left that appointment feeling a sense of hope and a renewed optimism that I hadn’t felt in forever. I remembered thinking, maybe my goals aren’t so unrealistic.
Six years have passed since that appointment, and I think back on that moment often. I took my neurologist’s advice and went back to school, graduating in 2016 from the fulltime MBA program at Boston College. Today, although my goals and dreams have changed slightly since that appointment, I am well on my way towards achieving them, even though my condition has progressed significantly. I used to obsess on losing my ability to walk by age 30, but I am happy to say that I am now 31 and still on my feet. Although a wheelchair is in my near future, it is not something I fear anymore. If anything, I look forward to the freedom it will bring. Having goals and dreams to work towards has been instrumental in the acceptance of what is to come.
I share all of this because I have seen firsthand that dreams often get overlooked in the patient experience. As healthcare professionals, you are taught to diagnose, to treat, and to show empathy. And you do a great job! If I can offer one piece of advice, I would say to take the time to ask patients about their lives – what their goals are, what they dream of being someday, or what they want to do with the remaining time they have left. Really get to learn what makes their heart sing.
Dreaming is part of what makes us human. For patients diagnosed with a disease or dealing with a life-altering injury, our dreams oftentimes get dashed. Our hopes for the future evaporate into thin air. If you can help to open the doors that have shut in your patients’ faces - even just a little bit - it can make all the difference in their lives. They trust you, they believe what you have to say, and in those vulnerable first moments post-diagnosis, they are looking to you to gauge what is still possible in their lives.
If you can give your patient the permission to dream again – there is no better cure.
Chris Anselmo is a 31-year old writer and motivational speaker living with an adult-onset form of muscular dystrophy called Limb-Girdle Muscular Dystrophy Type 2B (LGMD2B). A Connecticut resident, Anselmo writes about his patient journey on his blog, Sidewalks and Stairwells, www.sidewalksandstairwells.com.