Doctor Nissa Marie Novas

WAY back in late February of 2022 Michie O’Day shared that her dear friend and our fellow NF2 warrior, Nissa Marie Novas’ battle was winding down. As it turns out, she had four and a half more years in her. Nissa took the last train to the coast this month — she was 51. 

Every NF2 (neurofibromatosis type2) case is different. The variations and severity of NF2’s symptoms seem endless (to me anyway). On reading a brief interview with Nissa at the Children’s Tumor Foundation, it seems like she got ALL of this damned disease’s manifestations. Here are a few:

• Vocal cord paralysis (causes swallowing issues, choking or coughing occurs when eating or drinking, and just generally creates difficulty with speaking or breathing properly) Over this past year I’ve started showing signs of this. *BIG FUN!*
• Vision problems (cataracts, severely dry eyes, retinal detachment)
• Facial nerve paralysis
• Muscle weakness
• Vertigo
• Tinnitus
• Severe headaches
• Loss of balance
• And, of course, deafness

Oh, we’re also at risk of developing of kidney or renal failure from all the meds versus NF2 itself. Funny that, eh?

Ya know, just when I was all set to throw a big pity party for myself and shit, I see what other people have to deal with. I’m just never gonna get to be a princess, now, am I … hmmmph.

Part of Nissa’s answer to the question What’s it like for you that people can see your tumors and the impact it has had on your life

“The truth is all forms of NF are ongoing, progressive, constantly changing, and without a cure. People associate NF tumors and their treatments with cancer, while there are certain NF tumors that can become malignant or cancerous, for the most part, NF tumors are very different. While chemotherapy, surgery, and radiation are all used as treatments, they are never curative and there is no remission. At best, treatments slow progression of symptoms, but it’s never over. It never ends.

It’s constantly destroying your life and you’re constantly trying to rebuild it. Everything is hard every day. And it gets harder. The losses and grief are continual. You are constantly hurting, struggling, questioning your self worth, adapting, fighting to survive. NF is not just a tumor disorder. It’s also a communication disorder. It’s a mobility disorder. It’s an emotional and psychological disorder. It’s a life disorder. Yet, somehow, we go on. We overcome against all odds. We are born warriors/fighters.” (source) 

Nissa was diagnosed sometime around 1993 – 12 years after my diagnosis – and remarked “No one knew much about it or seemed to be actively learning about it. My doctors handed me the diagnosis and gave me a good luck pat on the back and sent me on my way.” 

This reminds me of how abso-fucking lucky I was to have:
A) moved to Boston post-carnival life
B) been hysterically, theatrically nagged into getting diagnosed early (I was 23) by my cousin Carmel

Boston – Mass General Hospital – was, and still is, where the big research was done on NF2. I was – this doesn’t happen often – in the right place at the right time AND had an in to the best neurologists and surgeons.

Us NF2ers are like Sisyphus. We are forever rolling the boulder of surgery, recovery, meds, radiation, recovery, physical therapy, more fucking surgery, more physical therapy, ad infinitum, uphill only to find — oh, lookie there! Hello new fat, menacing tumor/complication/symptom! Welcome to the party.

Then there’s the fun symptom guessing games that, sometimes, even the best doctors in the world can’t answer — is this numbness/weakness/pain in my foot, throat, neck, back due to nerve damage? A new tumor? An infection of some sort? A vascular issue? Or am I old and just slept on it funny?

Every time a fellow NF2er bites the dust my morale takes a hit. Each death rings a bell and it takes a little longer for me to start Tubthumping again.

I get knocked down
But I get up again
You're never gonna keep me down 

Doctor Nissa Marie Novas was an Emergency Medicine Physician practicing in Prince Frederick, Maryland until NF2 robbed her body of it’s abilities to do the job.