I never studied writing, other than scientific and medical writing. And like quite a few of my colleagues I wasn't overtly enthusiastic to write papers. I enjoyed much more the clinical work and research itself. But, when I myself became ill, I found writing to be the major form of communication available to me. I found myself writing in the world of patients, instead of working in the world of physicians.
But, this writing although it helped me make some sense of the life that was forced upon me, was centered around my illness, not around my life or work. Those were only the background scenes.
Having a rare and hard to diagnose and manage illness, forced me to put it in the center of my world much more than I would have wanted or thought I should. Much more than I would have advised any of my patients to do.
Only, after I met a physician who was ready to take responsibility over my care, was I gradually able to put my illness aside and give it less place in my life. I was able to take a step backwards and appreciate the insights I have gained struggling with my illness and dealing with the way it was managed by quite a few of my colleagues. I realized that as a physician it was an invaluable learning experience, I could incorporate into my life and professional life.
Unfortunately, despite excellent supportive and symptomatic care, my illness took its course. My physician was reluctant to treat me, for reasons that are still obscure to me. I realized that if I want to save what still remained of my productive life I not only have to put this illness back into the center of my life, I have to do much more than that, I have to actively become my own physician.
So, being nearly bed-ridden and requiring more and more frequent respiratory support, I found myself using my cell phone to search in the medical and scientific literature for anything that could possibly help. I sadly realized how little research there is on my illness- MuSK myasthenia or even on the more common form of it.
But, this only motivated me more to do something about it, not only for myself but for other patients suffering from rare forms of neurological diseases. Many of whom, as I have sadly realized over the years are not even seen as being "truly" ill, but rather suffering from a very ill-defined psychiatric illness called "functional neurological disorder".
With the help and support of my family and friends I fought to receive adequate treatment, just like I would have done for any of my patients.
With the help and support of my family and friends I fought to receive adequate treatment, just like I would have done for any of my patients.
Alongside extensive research and using myself as a "guinea pig", gradually finding the optimal treatment and getting better, I also realized that I have to publish what I have learned for the sake of others. Some of it involves harsh criticism regarding the field of neurology and also medicine in general, but I hope it will be seen as productive criticism, which will eventually lead to improvement in the way diseases like the one I have are managed.
It also involves appraisal of the advances of science and medicine, which when used wisely have the potential to improve and prolong the life of people who would otherwise be in a nursing home or even die from their illness.
This Blog will discuss academic issues, while my new blog will tell my story.
A story about the nearly impossible struggle of one physician to lead a productive life (with) and also receive adequate treatment (for) a rare neuromuscular disease, that repeatedly refused to fit the "box".
For better and for worth-A story about struggling for better treatment, while leading a life of worth.
http://forbetterandforworth.blogspot.co.il/
