I really appreciate the support people have shown me throughout these last six months, for helping me keep the faith.
As I mentioned in my first letter, I was encouraged to write about my experience by people who were around me as the illness unfolded. In great part, I realized I wanted to write about my experience with RSD because of those months when I was very alone in the process, and terrified about what was happening to me. It was also a time when, unfortunately, the health care system itself was but one big locked building, lights out, and no one inside who could help me. I just want that one person out there, who may be entirely alone in this process, to have someone who knows what they are going through. It was people who shared their stories that helped me face the terrifying circumstances.
I remember forcing myself to go vote last November, a month after I was injured. It was a chilly. S.F. late fall afternoon, I waited for the bus, and tried not to cry from the pain in my arm by the bus’s movement. In the late nights when I could not sleep, I had studied how I was going to vote on everything except the President, that one I knew by heart. I tried to vote as quickly as possible and not grunt so much with pain. I got myself back outside, and stood on the corner for the bus. The street in front of the fire station where the neighborhood voted was otherwise dark.
The cold S.F. wind picked up even more, each second felt like an hour. RSD impacts the body’s nerve regulator, cold can be excruciating, and that night, it was enough to bring me to tears as I waited, and waited, and waited – not for a chance to vote – but for SF’s notorious Muni, which pulled up an hour later. Also not a city known for a reliable taxi system, forget catching a cab. I knew I would not be able to walk back home. I had never felt so stuck after just exercising the greatest of freedoms.
Now, I am super careful about finding myself outside in the SF chilly air, and about getting around. I try to make sure I don’t get stuck again.
These last days have been warm here, near Spring, a reminder of Summer. The warm weather makes it possible to actually move my legs, even if painful, I CAN move my legs. I think about moving to warm regions where I will always been at walking temperature. I think about 365 days of near sunshine.
Rain is predicted for tomorrow.
I am happy to report that the MRI has been moved up! I never thought I’d be so happy to have an MRI, but I am – greatly. We’ll learn whether there is anything in the brain or neck that might be causing the walking difficulties. I always have hope in these times, just before the tests, just before another explanation.
But, as I mentioned in my last post, apart from the health care system, I need to find another way. There’s gotta be another way, a way that makes sense to me. A way to health that seems to actually be in touch with my whole being, my spirit, mind and body. I intuitively sense this is the only way. Its why I have been approaching my experience from so many fronts, from making healthier lifestyle choices, to dealing with the stress through relaxation and mediation -which comes very much in handy at times of extreme pain – and meeting with a therapist to talk through the stress and frustration over what happened from the day of the injury till now, and connecting with healing people who share similar spirits.
I need a health care system that connects the dots, in addition to our excelling at individuals specialties. My intention is only to share my experience, my opinion as a result, but not to criticize the medical profession which is clearly filled with people who work hard, and are under incredible pressures that are often not based in medicine or healing.
I have begun to work with a new healing technique which I look forward to sharing here. I believe this system may very well have some of what I am seeking in my healing process, and may be useful to you too.
More about this soon.