I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.
~ Anonymous
I’ve always tried to be strong, unafraid and unfazed, always moving forward to meet the challenges of 48 bazillion scary surgeries AND, at the same time, maintain my warped sense of humor. I’ve done this not just for me but for my younger sister who also has the family curse, Neurofibromatosis Type 2.
Warum? I motherfucking REFUSE to let this rat bastard, shitheelian disease consume my life. Yes, the last couple years have been action packed (the battles, it seems, come in clusters – a few years in my 20s. My 30s were quiet, My 40’s were WAY too fucking busy (one spine slice up, three brain ops and my hearing took the last train for the coast). NF2 left me mostly alone until my late 50s. Since hitting 60, I’ve had two spine surgeries, almost lost my left eye and, so far, just one craniotomy. And I just turned 62 – all this excitement is one hell of a challenge to my cynical yet weirdly buoyant state of mind.
I don’t want Celeste or my young pal Felicity to despair or define themselves by Nf2. My friend Michie, who’s my age and also a painter, is much like me. She’s a partner in FUCK this Nf2 shit – I will enjoy all that I can/while I can and I will laugh. Nf2 is NOT the boss of me!
If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.
~ Martin Luther King Jr.
Right, the fuck, on!
On those days when I can’t even crawl, I rest. Yesterday was one of those.
Resting is not laziness, it’s medicine!
~ Glenn Schweitzer
If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.
~ Carmen Ambrosio
That’s hard to keep in mind and, more challenging yet, to give myself credit for those small bits. It’s necessary to keep me keeping on though. This morning I've brushed my teeth AND flossed. I walked down the stairs. Later, I’ll take a shower and wash my hair (standing up, if my legs feel strong enough). I won’t be able to walk down to the seawall every day but I will again and, in a few months, maybe I’ll even be back to my regular mile and a half morning rambles. I can see that happening!
Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.
~ Kelly Hemingway
I don’t like freaking out or swimming in the Sea of Despair. Who, the fuck, does? We all gotta feel what we feel ‘cause it ain’t gonna go away if we push it down into that steel lock box in our beans. What’s BIG important for me is to know that sadness and panic are temporary.
I just need to breath deep, eat a cookie and, maybe the same day or maybe tomorrow, reboot my system.
Life is either a daring adventure or nothing at all.
~ Helen Keller
TELL it, mi amiga!
I often say now I don’t have any choice whether I have Parkinson’s, but surrounding that non-choice is a million other choices that I can make.
~ Michael J. Fox
Right on, mon frère!
Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.
~ A. A. Milne
The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.
~ Anonymous
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