It is absolutely possible that the nerve sheath tumor on my right sciatic nerve is isolated, completely unrelated to the condition that ultimately took my father’s life. I know we’re not supposed Dr. Google our mysterious maladies but sometimes it’s all you can do to keep afloat in the uncertain time before diagnosis. Also, sometimes Dr. Google gives you unexpected reassurance in the form of some other rare and strange condition that you’d much rather have.
Awhile ago, before I even went to my doctor about the mass on my leg, I was searching for possible explanations while simultaneously researching advancements made in Neurofibromatosis type 2 treatment since my father was paralyzed. I found this: A rare cause of chronic sciatic pain: Schwannoma of the sciatic nerve. It says right there in the discussion: [o]ccurrence of multiple schwannomas is rare and not necessarily correlated with neurofibromatosis. Not necessarily correlated with neurofibromatosis.
Not.
Necessarily.
Now, it’s entirely possible that I have this rare nerve sheath tumor completely unrelated to the rare genetic condition that runs in my family. It may be more likely that this tumor is a manifestation of Neurofibromatosis type 2 and that I have tumors in my brain and spine, but this one tumor on my leg is not necessarily a diagnosis. I don’t have to take this partial information I have and expect what I fear the most.
Also, even if this is Neurofibromatosis 2, even if I have multiple brain and spine and nerve tumors undetected, that is not the end. My dad had the surgery that paralyzed him in 1986 or so. In the thirty years since his surgery, the medical advancements in diagnostics, surgery, and disability accommodations have made it so that I can have a much better life with NF2 than my father ever had.
I have been afraid of this possibility my whole life. And now that it’s here, now that I’m grappling with the very real likelihood of a Neurofibromatosis type 2 diagnosis, I am of course still afraid. This is scary, scary shit I am not going to lie. I cry every day. I don’t know who wouldn’t. But I also breathe, come back to center. Reevaluate. Remember.
My dad was given three months to live when he came home from the hospital to die. He lived for three years, instead. I could do a lot in three years. There are so many possibilities.
And I, for one, am going to use them all.
image of figures created in plastic with a 3-D printer, taken by Berillo D via Wikimedia Commons
