Not Disneyland

Some people want to gather up their families and take them to Disneyland. I want to gather mine up and take them to the Undiagnosed Disease Program at the National Institutes of Health which opened in Washington DC in 2008.

Mother, sister, at least one brother, maybe both, and the maternal grandmother if she were alive. I can’t tell, maybe the aunt and uncle need to come too. Maybe the paternal grandmother and the father. I don’t know. The levels of suffering in my family are so high, that I don’t just have my own suffering I also have the pain of having watched the suffering of others.

Sometimes now when I notice how I move or how my face frowns with gravity, how I sit with the heating pad pressed into me, I think “Oh my god I am my mother’ (sorry Mumsy) and I love my mother, but she had been living in severe and chronic pain for so long, with spiking blood pressure nothing can resolve, and I am afraid for her, and afraid of being her. I want her to be her happy joyous creative talented enthusiastic self of younger years. By which I mean her 40’s. She has spent her 50’s in chronic pain and in and out of hospitals and doctor’s offices. Her diagnosis, only, ‘uncontrolled hypertension’.

Somehow the bomb went off in me a decade earlier.

But my twenties were no piece of cake either. And my sister also suffered her entire twenties with severe pains and distress and no answers. And now my baby brother who is in his twenties has high blood pressure and high cholesterol, even though like all of us he has eaten fairly well and stayed fairly lean and remained very active. There is some possibility that we all have some sort of adrenaline secreting tumor which has not been located but I don’t know. We have all been subjected to so many tests and nothing is ever found. And we are not all exactly the same. Those three have low thyroid and I do not. My sister does not have high bp though the other three of us do. (Well, mine is only high when my pain levels rise, or is it that it spikes spontaneously and then so do pain levels? No one knows.)

At this Institute people sometimes learn horrible news. But the weird thing is that the patients who were interviewed were still so grateful and happy for the help, even when they were given news of a death sentence. It seems contradictory, who wants bad news? But there is something empowering about knowing. Like you can know, and then you can move on. You can make decisions, you can do what is next, you can prepare the best you can.

My life is constantly struck by lightning. There are grass fires. The zebras run off. I feel like a person not who has some horrible disease for which even modern medicine cannot come up with a cure, but like a person who has some horrible disease which modern medicine cannot even identify yet, much less cure.

Without a diagnosis, there is no real prognosis.
There is just hope, and sometimes the lack of hope.