What follows is a text written by Caitlin O'Hara and read aloud on her behalf in February at the DPH's Public Hearing. We share this today both for the power of Caitlin's words, and because Caitlin is a very special person to our cause and in very much need of all the love and support you can send her right now.
There are a small number of people behind SaveProuty.org and the Friends of the Prouty Garden, some of whom you may know, others who stay quiet out of fear. Caitlin has always been vocal and public in her efforts, and without a doubt she has been one of the most central and integral parts of this fight, truly instrumental.
Caitlin is fighting for her life in Pittsburgh right now. She is desperately in need of a lung transplant. She is on life support and is at the top of the national transplant list. Her doctor said today, she is the sickest person in the United States right now in need of lungs.
So we ask you to send prayers of love and healing and most importantly right now, prayers for lungs, so that she may be transplanted as soon as possible. Direct donation is possible. She is O+ and 5'2" (small). More information on Caitlin is available on her mom's blog, 9livesnotes.com.
Sweet, dear, wonderful Caitlin, stay strong and get well soon.
I can’t be here today because I’m in Pittsburgh, waiting for a lung transplant. I have cystic fibrosis. My lung function is at 20%. I’m on oxygen 24/7. I sometimes use a wheelchair. I have a list of other complications, heart, bones, digestive problems, that stem from 32 years of chronic infection. I am in a lot of pain and discomfort. As much as I dislike listing off my ailments like this, I relay it all to illustrate that I truly am a long time patient, and I know what it is like to be a very sick child.
I was diagnosed at Children’s in 1985 and have been seen there ever since. I have spent endless weeks on 9 and 10 East, looking out over the grim collection of rooftops, startling awake from the loud whirring of the MedVac helicopters descending on the landing pad. Life in the hospital is a surreal weird tunnel of heightened moments—beauty, anguish, anxiety, love, humor, dark weird humor, apathy, and clarity. That’s what being stuck in a hospital, really sick, is like...it is the extreme emotions of life, all smashed together and turned up a notch.....reality is distorted. You find calm in the Prouty garden, and also vitality. You remember what it is like to be part of the world, in real nature, and it's invigorating. It’s special and sacred, and I feel anger towards those who claim the right to say they know what’s best. I hope no one has to experience the kind of pain that some of us have, but then I also think, it is kind of a gift, to understand how sacred the Prouty is...... and I can't make anyone “get that.”
I know what it is to have a rooftop garden, there's one here in Pittsburgh, there's one at MGH. There's not time enough now to go into how woefully inadequate they are in comparison to the Prouty Garden, and that argument has been made, compellingly, before. Bottom line: they cannot claim to be called healing gardens.
Even worse though, is having no greenspace at all, and that is what would happen while
the new building is being built. The hospital administration now says they will unveil a rooftop garden in the summer of 2017, a consolation to soften the blow of losing the Prouty Garden. A year goes by fast for a real estate developer. But there are patients who will live, and suffer, and
die in that hospital during that year. What will the lack of any greenspace do to their health, to their spirit? What does that say about the administration's ability to make the right decisions?
Maybe it should come down to a vote. But who votes? Do the kids who have died in the garden get to vote? Do their parents? Do the doctors who have come and gone already get to vote? Does Mrs Prouty? Do I, in Pittsburgh? There are too many people, so we have to turn to public opinion—and precedent. FOUR decades of administrations avoided razing the Prouty garden before now—a tempting half-acre in crowded Longwood. Did they just forget it was there? Of course not. They knew that it was untouchable, a thing to be preserved, an asset to their hospital. 17,000 people have petitioned to save the garden. A growing force of patients, world renowned doctors, and families have been arguing this for FOUR YEARS, saying: guys, this is the wrong move. The people who they are fighting against? A small group of 3 or 4 major administrators, and a board of 19 trustees. That small group has all the power because of their position, their money, and their connections—does that make this right?