Two days to go before my first appointment with an MS specialist, which will be at the Judith Jaffe MS Center, part of the Weill Cornell Medical College in New York City.
A month ago, when I received this diagnosis of PPMS and was desperate to find out more, I wanted to get to a specialist immediately. I would have walked (even with my gimpy foot) to New York if I thought it would get me in sooner. I wanted facts, predictions, treatments. I’m a planner. I wanted a plan.
Now that the time has come for this first appointment, I wish it would go away. I’m worried — very worried — that it will force me to confront realities that I have not wanted to face.
In many ways, this disease is much harsher than what I’ve let myself think about so far. Everyone goes through his or her own journey, but there are plenty of people in their thirties and forties in wheelchairs, or who have trouble speaking, or who have cognitive difficulties or changes in their vision, or who are bedridden. These changes can come as quickly as two or three years after the initial diagnosis.
I’m not saying my progression will be as swift, but I have to accept that it could be. I’m no less likely to face those harshest realities than the next guy with spots on the brain. There’s no fairness to it.
I wish I could put my head in the sand and live for just a little bit longer like this isn’t happening. But it is happening. And it will be managed somehow. Life each day is an exercise in adjusting expectations and finding the most positive and joyful way move ahead. But tonight and tomorrow night will be long nights, while I wonder what the next adjustments will be.