I’m going to ask you to look through your mental archive of 1980′s sitcoms. Anyone remember the show 227? Remember Pearl Shay, the grandmotherly neighbor who would lean out her window day after day, sticking her nose in everybody’s biznaz? Well, that was me during my last hospitalization, standing in the doorway, iv pole in hand, wanting to talk to anyone. This felt strange, as I don’t usually go to the hospital to make friends. When I’m thrown in the hole, I opt for solitary confinement. My goal is to get out asap, and I’m not there to socialize. But somehow, this time, I morphed from Oscar the Grouch to Pearl Shay.
There was a respiratory therapist who I enjoyed talking to, and because she was coming to my room four times a day for treatments, I had frequent opportunities to learn about her life. She and her husband sold their belongings, bought a boat, sailed from Mexico to San Francisco harbor, and decided to make the boat their home. I loved hearing her stories and having the opportunity to imagine this adventurous life. She also recommended a local pizza place, Patxi’s. One of the many nights there, my mother and I devoured a spinach, mozzarella, chunky tomato sauce, and whole wheat crust pie. That night, I slept peacefully, dreaming of sailboats and blue, my belly full of deep dish. The Ambien might have helped too.
Unfortunately, that’s where my list of Friends I Made In the Hospital ends. I had loads of time to think, while I waited for the antibiotics to wage war on my colonized (read: not going anywhere, ever) bacteria. So I thought about the reasons why I never made friends with other CFers, and how even my closest friends knew very little about what goes on when I’m sick. I also thought about the fact that since I didn’t have a single friend with CF, I had no idea how other people deal with the things that must be dealt with. Self-imposed solitary confinement in the hospital, and outside of it too. I needed to find a way out.
In the last post, I mentioned a perfect explosion. This was it. Different elements of my life during that hospitalization, beginning with my lowest lung function score ever, coming together and exploding to lead me to a completely foreign place: the CF community. When I was sent home, with iv antibiotics, a rigorous treatment schedule, and the question of whether I’d be able to get better, I spent a lot of time googling “cf”. I was looking for a crystal ball to show me what this frightening decline was going to look like, and I quickly learned that the falling apart (or, keeping it together) is different for everyone. I didn’t even know there was such a thing as a CF blog– why would people spend their valuable time writing about their disease, their medications, their treatments, their mucus, their desperation, their hope? And look at me now. Ah, the twists and turns of life.
In my desperate search for information and fortune telling, I came across a few blogs that changed me forever. The first was a blog written by a CF “celebrity” who is no longer with us. Her name was Eva, and she was a tremendous force in raising CF awareness. I was captivated by her words and beauty. Until I found her blog, I believed that CF and beauty couldn’t exist in the same body. Eva was stunning, but beyond that, I couldn’t get over her complete lack of shame, self-pity, or bitterness. Reading her blog, watching the videos she posted (many from a hospital bed), my eyes wondered if my tears would ever stop. She recorded her last video knowing it would be her last. The doctors told her there was nothing more to be done. How did she accept that? How did she press “stop” on the video camera the last time?
The other blog is written by Piper Beatty, a double lung transplant recipient. Piper blogged her way through the transplant process, openly dealing with the relentless demands of the disease, and allowing others into that struggle. Every time I feel panic creeping up around me as everything seems to fall apart, I think of Piper, and the way she handles it, without self-pity, regret, shame or anger. This grace astounds me, as I stumble and bumble my way like a klutz down this path of chronic illness. I think of her grace and humor, and I think of Eva’s immense love, and I try to place my steps on the path that they have each laid down. Although I’m unknown to them, they are both my teachers.
CysticLife is another site that sent me spinning. It’s a social network site for people with a connection to CF. The site is the brainchild of Ronnie Sharpe, who despite living with the daily hardships of CF, oozes positivity. Ronnie was onto something when he realized that there is strength in numbers. And that’s the power of these sites: they help us crack open the window, allow us to poke our heads out, reach our hands out for some help, or perhaps, offer a hand to someone that needs help.
Unfortunately, though, there’s always another side to becoming involved. In the first three months of exploring this newfound territory, 6 people (that I know of) died. Each was around my age or younger. Some were waiting for transplants, some were not. How could this be? How is it possible? I think I actually asked that a few times on forums because I was so stricken. The long time forum members probably thought I was a nutcase– does she not know how CF works? Does she not understand why CF is called a fatal genetic disorder? It was a quick and dirty initiation. And it still stings.
But the sting is worth it. The gifts I’ve received from being part of this community, from simply connecting with some of these incredible human beings, have piled up in my heart. Contact with the CF community has become as vital to me as my treatments. I’m grateful that I opened the window a crack, or that life cracked it open for me. Leonard Cohen was so right: the crack is how the light gets in.
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For those who come into our lives, and for those who leave.
Today’s Poem: (click on link to read poem in its entirety)
Salt Heart by Jane Hirshfield
I was tired,
half sleeping in the sun.
A single bee
delved the lavender nearby…
