Nissa Marie

My friend and fellow NF2 (Neurofibromatosis type 2 ) warrior, Michie O’Day has a friend whose battle with NF2 is winding down. She’s graciously allowed me to share her words.
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NF2 is not a disease; it’s a rare genetic condition. Those of us who have it are missing a tumor suppressing element on chromosome 22, and therefore we grow non-cancerous tumors in our central nervous systems. Because there’s no “off” switch, we grow these tumors all our lives (usually beginning in our 20s). Surgery and radiation have been the only treatments for decades; now chemo therapies are being developed and showing promise, also gene therapies are in a very early stage of testing. If something else doesn’t end our lives first, NF2 is our exit route. It is slow, for some people it is physically painful, and it’s just so sad. I’ve witnessed it twice when my mother and younger brother died long ago.

But there are many sad endings in this world, which has had a bellyful of them since COVID struck. Tonight I need to tell you about one person.

My friend, Nissa Marie, has been fighting NF2 for over 20 years. She is indeed a warrior, and is extraordinary in her kindness, humor, faith and love for others. (The list keeps going). Knowing her diagnosis, Nissa proceeded with her goal to graduate from medical school and become an ER physician, which she did successfully until deafness (part of the NF2 experience) forced her into early retirement. She remained active caring for her nephews and others, between surgeries and other treatments, and her inevitable progressive disabilities.

And Nissa bakes! She makes cakes and cookies, with the help of her 4-yr old nephew, Maverick, to give to friends, and has won baking competitions. I love how Nissa continues to find ways to heal.

But now, medicine has done all it can do to keep Nissa functioning, serving and being a joy to the people she loves. Her remaining choices revolve around end-of-life care. She wrote and asked for my prayers and asked me to ask others, which I am honored to do. I’ve been through rough times & losses due to this genetic horror story and can speak with enormous gratitude about the power of prayer that comes from your inner circle and beyond.

If you pray, please remember Nissa in yours too. She is really special.
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The closing bell comes at a different age for each NF2-er. My mother lived to be 84, my cousin Carmel lost her battle while in her 50s, friend Felicity was in her late 40s, her father was in his mid 60s.

Paraphrasing my buddy John Donne:

No man is an island, entire of itself; every man is a piece of the continent, a part of the main; if a clod be washed away by the sea, earth is the less…any person’s death diminishes me, because I am involved in humankind, and therefore never send to know for whom the bell tolls; it tolls for thee.