Warning : This blog post contains profanity: not intended to be read by minors or good Christians.
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FFFUUUUUCCCCKKKKKKK!
That’s what I feel like shouting at the top of my lungs right now. The great Lara Borowski died on Friday after a hellish three weeks on a ventilator fighting for another chance to breathe, yet ending in the way we dreaded. I just can’t believe it. I am numb yet I will cry at the drop of hat with any reminder of Lara or any sappy song on the radio. Lara was my best buddy, my partner in crime in this crazy journey of CF and transplant, with its ultimate highs and pitiful lows. Tom, Isa , Lara , and I were the four muskateers- grabbing onto our new lives post lung transplant with a drive to exercise, enjoy the great outdoors and see the world with zest and eagerness. Together, the four of us exemplified adventure, strength and joie de vivre among the Stanford lung transplant clinic.
Lara is the eighth CF/Transplant friend of mine who has died in the last year (seven died in the last six months). So I am exasperated, pissed off and need to vent. So I’m sorry if there are minors or good Christians or folks living between the Rockies and the Appalachia who may be offended by my foul mouth. But truthfully a little profanity is justified right now in my opinion. Though I loved and miss the seven others greatly – Emily, Monique, Pat, Judy, Barb, Anna Devane, Lori- I have to admit that for each of them I thought at the time of their passing, “at least it’s not Lara” since I am closer to Lara than any of them… and now it IS Lara and I am raw. What the fuck just happened? Is it ok to be angry at God?
In late March, we were running at the track together. I never imagined she would get sick and go downhill so quickly. I feel like a fucking endangered species, like all of us are on the brink of extinction. Instead of “Save the Whales” we should have our own “save the lung transplant recipients” campaign. Shit. It’s as if our lives are one big fucking tease that will end when we least expect it.
Isa and I were honored to be with Lara and her family and closest friends until the end, and we were able to witness her peaceful passing into another realm. I do really hope that all they say about the afterlife is true- that she is no longer suffering, that she is with her grandmother and our other friends that have passed, that she is in a better place. I hope to God that it is true, because if it’s all fraudulent bullshit I’d be really pissed. I guess that’s why they call it faith. I guess I have to wait and see myself. Lara, be free now, and run like you were naturally born to run, and breathe freely finally.
On Saturday night, a raccoon came up to my porch door and tapped on the glass. I have to say this is extremely unusual since I live in the eastside urban ghetto part of Redwood City near the freeway. Call me crazy, but I believe it was Lara visiting. My Yoda-like friend, Nahara, agreed, stating that “American Indians called the raccoon a trickster: bright, clever, and lively… A Raccoon totem has a long influence in your life. It … will stay with you for a long time… The Raccoon’s message gives us the power of the mask to create change healing and transformation.” If that’s true, then it does fit Lara. I want to believe this and hope it’s not just a coping strategy.
My third grade teacher was right. He told us that the most important thing in life is TIME… more than love and money. So many of us would do anything to get more time, especially Lara. She was only 31, had just finished graduate school and gotten a job and was a shining example of youth, beauty, maturity, determination, zest for life and love. Together we had many wonderful years hiking, doing the Bike For Breath charity ride each year, going to 2 transplant Games and cheering for each other, going to the Indigo Girls concert together, attending dinners and parties too numerous to count, celebrating milestones like weddings, graduations, birthdays and re-birthdays, and supporting each other with all the bullshit of living as a medically fragile endangered species. We shared clothes, meds, sinus rinse recipes, food, hospital horror stories, and gold medals at the transplant games. Lara was a dedicated member of our transplant boot camp, meeting weekly to work out at Stanford track even if she was limited by lung capacity or a recent hospitalization. No matter what complication was the flavor of the month, Lara kept such a noble attitude, with her strong spirit and amazing sense of humor. We shared in our foul mouths, cussing and laughing at every cruel aspect of CF and lung transplant complications. Her death has left a canyon in my heart that will never be filled. She was a soul cyster- our disease brought us together but we had so much more in common than just those damn delta F508 CF genes.
My mother suggested that I start hanging out more with non-CF friends so I don’t have to experience so much loss. I realize that I am totally enmeshed in the CF / Transplant community because that is where I feel most at home; that is where I relate most to people and can connect the deepest. I’m an alien to the outside world and the CF/transplant community is my spaceship. So I’m not sure I can do what mama said. With this incredible connection and love, comes loss and grief when people die. It is the ying and yang of our community, but as one of my CF/transplant friends said years ago, “It is better to have said goodbye than never to have said hello.” Amen to that.
Sorry to bitch and moan in my blog. Perhaps people will understand a bit more about Isa and I, and why we run around the country frantically, why we indulge in so many opportunities and obsess about volunteering and why we never rest. It’s because we have to grab onto everything right now with a sense of urgency to see, do, give back and live as hard as we can while we can until our time comes and we can be reunited with Lara again. We’ll rest when we’re dead. WTF.
Thank you for listening.
ANA STENZEL
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Ana,
I share your anger and frustration. I am new to being so involved in the CF community, and new to death in CF. I am naively hoping that this has just been an exceptionally bad year?
If this is a normal year, I am not sure I am strong enough.
Lori and Lara were too of the strongest fighters I have ever met, and not just in CF. Their smiles withstood anything and everything.
I understand your mom’s instinct for you to have more friends without CF or transplant, but I also feel most at home with that group as well. I think in the end we would never give up the memories and support, but it does seem easier without the greif and loss…
I just wanted to offer you the biggest hugs through this impossible time.
Kriss
Hi. You don’t know me, but I am one of a number of people whose lives Lara touched through her work. As part of my job, I co-facilitated an online workshop for people with chronic conditions back in February/March, and Lara was the “mentor” observing and supervising the workshop facilitators. During the last week of the six-week workshop, Lara had to go on medical leave, but since everyone involved with the workshop had a chronic condition, I didn’t think anything of it. I didn’t know her well enough to know the details of her illness, and medical leave is a common thing for those of us with chronic illnesses, as you well know. When I heard yesterday that she had died, I was shocked and horrified. I didn’t know her well at all, and certainly not outside of a professional context, but she was an incredibly sweet, energetic, encouraging person. I googled her name so that I could learn a little more about her as a whole person, and I found several blog entries of yours. I hope you don’t mind. You paint a beautiful picture of a wonderful person.
I’m neither a minor nor a Christian, but as far as I’m concerned, you’ve got plenty of reason to swear and no reason to apologize. Your heart is broken. As a disability activist, I completely understand wanting to be around other people who “get it”, and indeed so many of the heroes of my movement also die young. It sounds like you’re no stranger to grief these days, and it’s just not something one gets used to at all. For whatever it’s worth, I will keep you and the rest of Lara’s family – and chosen family counts – in my thoughts. And if it’s at all helpful, my guide dog Brodie sends comforting snorfles. She’s good that way. Hang in there, and take care of you.
-Rachel T., Cambridge, MA
I think that even more profanity is justified here Ana. I am so sorry for this huge loss….and all your losses along the way. You and Isa are both amazing….but please know that it is ok to be human too. I will be throwing f-bombs around up here in Oregon in your honor!
Ana- Thank you for your blog. Allison Stockley passed it on to me. I think many people feel the exact same way when we lose a loved one, but many don’t want to talk about the pain. They keep it all bottled up inside. Thank you for speaking out! This is exactly how I felt when Charlie died in 2006. My very best friend whom I used to talk with every Sunday night on the phone was gone. I wanted to scream at the top of my lungs and let people know how hurt and angry I was, that he was taken so soon just 3 months before his wedding. He was the reason I wrote my book “Charlie and Me” I wrote it not only as a tribute to Charlie, but I wanted children who have this disease to know that they are not alone, and most importantly to spread awarness about organ donation. I feel that if there were more organ donors, Charlie might still be with us. Not only is this my passion but has now become my mission. I feel that if my book will lead just one person to sign up to become an organ donor, then my book has been a success. I feel so grateful to have met you and your sister while I was visiting Charlie at Stanford Hospital. You were a breath of fresh air, and I could tell, you brought so much love and peace to Allison at such a difficult time. Thank you to you and your sister for all you do to help make people aware about CF and organ donation, and for spreading the message. I feel so blessed that through Charlie our paths crossed. I know Charlie and Lara are up in heaven smiling down on all of us! Please know you are in my thoughts and prayers at this difficult time. If you think you know of some CF friends or families that might enjoy the book “Charlie and Me” feel free to pass along the website to them. Thank you for being the wonderful person that you are, and know that Lara continues to be with you each and everyday. Blessings to you! -Kathryn
Great post,Ana. My sentiments EXACTLY, every word of it! We love Lara and are grateful for having her in our lives…for too short a time!
Heartbroken,
Allison
“And their beats go on..”
http://www.charliestockley.com
http://www.charlieandmethebook.com
Hi Ana,
I’m a friend of Allison Stockley – she passed your blog on. I can’t say that I know what you are going through, but I’m so sorry for your tremendous loss. Your honesty and use of the f-bomb… no need to apologize for it. Raw truth is what touches and inspires people. Your strength, courage, and spirit come through with every word.