After the emotional chaos of 2013, I have a good feeling about 2014. I now have objective evidence that my strength is slowly returning. First I was able to lift my right arm above my head, then I was able to lift one pound, and then two. A recent neurological power exam showed some modest improvement as well. The fasciculations, which had relentlessly persisted for the first several weeks after my surgery, have finally started to decrease in frequency, and now I only notice them after I exercise. For the first time, I am convinced that ALS is off the table. That is worth celebrating. Yes, I still have significant weakness and atrophy in my right shoulder and arm, and I will probably never recover to where I was before. But I believe I will recover to the point where I can practice medicine. I feel like I have been given a second chance at life. It feels good to have a goal: to regain enough strength to return to my residency training and become a Neurologist.
Above: me at the ruins of Apamea, Syria, on our 2008 London to Cape Town motorcycle adventure. Photo by Tom Smith.
The emotional impact of facing my own death, and worse, becoming trapped in my own body, has forever changed me. I am not the same person I was before. I think how I feel now compares to the feeling that comes after a motorcycle or snowboarding crash: a lack of confidence, a sense of fragility instead of invincibility, and overall tentativeness. I have been reminded of how fleeting health, and life, can be.
My views on doctor-assisted suicide have also been shaped by believing I would die a slow horrible death from a degenerative neurological disease. I firmly believe that we should embrace doctor-assisted suicide as a society. I know this to be the right choice – not because of specific legal or ethical arguments, but because I felt it to be right when I faced my own death. There is no expunging a feeling that powerful. And as powerful as empathy may be, I don’t believe that a person can truly know how it feels until they face it themselves. I am excited that 20 years after Sue Rodriguez brought her case to the Supreme Court that another case may be heard soon arguing that the prohibition of doctor-assisted death in terminally ill patients is unconstitutional. Maybe the law will yet be changed.
There is no way that my experience as a patient could not impact me as a doctor. I always cared; I was always empathetic – but I think that this experience will only enhance those qualities. I have also witnessed the awesome power of a correct diagnosis first-hand. I was diagnosed within 48 hours of my first presentation to the EMG lab (thanks to Dr. McNeil and Dr. White). If I had not been a Neurology resident working at at tertiary care centre, how long would it have taken me to be properly diagnosed? Would I have been properly diagnosed at all? Reading similar case reports to my own case, I have found that no one was diagnosed correctly initially. In some cases the correct diagnosis took many years. I have been lucky enough to have had a surgical repair of my dural tear within a few months of first noticing my symptoms, which started 8 years after my initial CSF leak! How different would my life have been had I not been inspired to apply to medical school after my initial dural tear 8 years ago? A delay in surgery would almost certainly mean less chance of recovery.
I am looking forward to 2014. I am excited to get back in the saddle. As with every crash I’ve ever had, I expect my confidence to come back. It will just take some time. I am so thankful for the love and support I have received from my friends and family, and even complete strangers who have come across my story.
Looking back at my blog, I see that last year at this time I was concerned about the deteriorating humanitarian situation in Syria. Syria has always been one of my favourite countries because of the warmth of its people and the richness of its history. Last year I made a video montage of photos from our trip through Syria (which we rode through on our London to Cape Town motorcycle adventure in 2008). I will share it again now, because as bad as it was last year, it is even worse now. My heart goes out to the people of Syria. They have suffered so much death, and millions are living day-to-day in refugee camps. The destruction of their country is a tragedy on an astounding scale.