There’s a special bond between sufferers of any chronic illness. We share one another’s fears, frustrations, triumphs and the every dayness of it all.
Due to the need to keep C.F. patients physically apart, my friendships have been stunted. It wasn’t until the internet age with facebook, and blogging culture that I ever upkept any social contact with CFers, and transplantees for that matter.
Well, one day on-line I was “friended” by a girl named Bree who suffered a similar illness to CF and was also waiting for a lung transplant. We bonded over our shared experiences in waiting for, receiving and rejoicing in new lungs. If a technician at the hospital was being unhelpful, if a prednisone pill dissolved on my tongue (the horror!), or if a lung function was particularly glowing, low, or noteworthy, she was the one I texted, and likewise. We gossiped, we were scared together for sick friends, we laughed and were ridiculous and silly. We sent cards to each other. She was good. She was spunky, a wonderful writer, baker, reader, piano player, & an animal lover, with a dry wit and killer good looks.
Was. Because today the world lost Bree. A strange affliction overtook her — a mysterious, nasty, and swift moving neurological illness. I last spoke to Bree on the phone a week before my launch. We laughed about puppy pee, and stepping in it. She’d gone blind just shortly before the puppy was set to arrive. But she was so positive, so strong willed and determined. A superwoman. I think we all just assumed she’d beat it: and MY how she fought till the very end Her deterioration was swift, and really very mysterious. The Docs still don’t fully understand what was the root cause of this…. just another “weird illness” swooping in and taking a tx patient away.
My few consolations are that she is no longer suffering. I remember texting her at midnight on new years eve and she’s pretty much been miserable since then. I cannot imagine the pain and torment. My other consolation is that Bree lived her post transplant life (1.5 years aprox) TO THE FULLEST. Her joy was palpable in her writings. She wrote beautiful letters to her donor’s family: I *know* if there “is* a heaven that she’s up there thanking her donor, patting her dog, reuniting with lost friends.
But it’s very sad, and also very scary. And on WHAT planet is this fair? (so yes, I might be a little angry too!) I channeled it tonight into riding which felt good. I rode hard, because I could. You just must live each day fully and try and do the things you love. Not to be morbid, but you never know when your own personal apocalypse might happen. Waste no time — create, experience, do do do!
Words sort of fail me. God life is scary. Bree –you are missed by many….