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Wednesday, May 21, 2014


For the first time evah, I'm finding that I'm actually really. truly, stratospherically pissed about the Nf2. You know, the family curse that I’ve written about here, here, here and a few dozen other places. Yup, that’s one.

This isn't a wrist to forehead, woe-is-me or a Nancy Kerrigan-esque WHY ME kind of a thing. Nope it’s just straight up anger.

Yup, I'm a little slow. Why wasn’t I in a fury 33 years ago when Parker and Ojemann gave me the news?

Shock? Fear? Lost in wondering what this all meant, how my life would now play out?

Yes plus I was always focused on coping.

In my 20s, I was trying to survive that first surgery and Stan’s leaving me while I was in the hospital. I was attempting to duck my cousin Carmel’s well intentioned yet spectacularly bad advice and wretched example (only GOD can heal you. Don’t have the operation. Come with me to the faith healers! Yep, she died early and nastily from this). When the print shop where I worked in Cambridge folded, also while I was in hospital, I needed to scramble to find a new gig that would give me health insurance that wouldn't turn me down for this brand-y new to me, stunningly large pre-existing condition.

So then, my 20s were pretty action packed with the coping shit.

During my 30s, my symptoms weren't so bad — some headaches but not bad as long as I wasn’t weightlifting, only a miraculously, minor-ish hearing loss from that first surgery, my balance wasn’t so awful and I had a good shrink to help me through the emotional minefield of dealing with everything. Oh yeah and The Amazing Bob and I were a big going concern.

I was able to do pretty much anything that anyone else could (except ditch my job and run away, insurance-less, with the circus). The Nf2 seemed sorta distant-ish — certainly not as pressing.

So I kicked up my heels and started solo traveling (Scotland! Eastern Europe! Amsterdam! etc.) and taking in as much live music as possible — after all, my hearing had an expiration date. I’d hit the local clubs (T.T.’s, Jack’s, The Middle East, The Rat!) at least once a week.

My 40s were, again, about coping. I clocked in at seven major surgeries, plus some near debilitating radiation, in that decade. TAB, Jen, Oni and my awesome sister Celeste were there, supporting me throughout. I wasn't alone this time.

I still traveled but not as much, still took in the occasional show but not like before. This being due to an evolution cocktail of getting older, not being as vibrant due to all the Shootouts at the MGH Corral and, eventually, living in the suburbs — Valhalla by the Sea — versus Cambridge.

Now, in my mid 50s, I'm deaf, tippy as all hell, have a funny face and get nasty-ass headaches if I bend over too much but, all in all, I've a pretty damned fabulous, happy life.

And now I'm pissed off? C'mon...NOW?! I don’t quite know what to think of this. Maybe I just never had the time or space to be angry about me having the family curse before? Dunno.

What to do, what to do?

Today’s gonna be sunny and in the mid 60s. A nice long trike ride, for starters, seems like a good plan.


  1. Donna you are such an incredible trooper! I don't know why you weren't angry before (?) Maybe you were too busy living life, which you'll be doing again, and have many more lovely moments of forgetting... But I'm not here to downplay anything, gosh you've really had to fight all these years. And you're winning... xo

  2. Thank you Della. Yeah, I think I just didn't have the time, energy or space to be angry before. Dunno what to do with this pissedoffed ness. Seems useless and doesn't go with anything else I own.

  3. I think your great , I have nf2 since I am ten , just found out I have a brain tumour last Tuesday , I still flew with my kid to see my mam in the usa , don't know if its cancer, or nf2 tumour

    1. As nasty ass as the schwannomas and meningiomas are, I sure as hell hope that's what your is versus cancer!