Post-transplant day #666. Dis-Belief.
"I don't believe in organ donation."
I heard that from the rotund, grey-haired, well-dressed man in front me. As a volunteer yesterday for LiveOnNY's state-wide Registration Day, I was helping man a table in the lobby of NYU Lutheran. This man had come down with a companion who was at the moment engaged by another volunteer. And while the woman was warming up to signing a donor registry card, the man was hanging back. I caught his eye and asked him if he was a registered donor, or would like to register today perhaps? And then that sentence dropped out of his mouth: "I don't believe in organ donation."
Mentally, my jaw hit the floor. I wanted to respond "Well, organ donation believes in you! It might save your life some day, asshole!" But that kind of comeback doesn't help anything. I pursued the issue a little bit, introducing myself as a recipient, noting the fact we wouldn't even be talking if it weren't for an unknown soul generously saying YES to this very request. Well...I just couldn't get through to him. Even his companion began to razz him a bit, but he stubbornly kept his distance and his silence.
Now, this man was not a patient. He was not a janitor or security guard or an administrator or technician. He was a doctor. And he "doesn't believe in organ donation".
The only higher amount of disbelief I encountered yesterday was my own, when I heard him drop that little bomb. All of us at the volunteer table were having a hard time not showing our reactions; incredulous to the last volunteer. We've all done events before. We've all been told "no" before, and in no uncertain terms. Often quite bluntly. But we can mentally write it off as a consequence of misinformation, fear, superstition, religious constraints, or cultural influence.
When confronted with a person who flat-out says "no", we're trained to follow up by asking what "concerns them" about organ donation, just to satisfy our curiosity, and maybe we could answer some questions they might have. It is all very polite and positive. But it is amazing how many people, even highly educated people, even medical professionals -- YES, EVEN DOCTORS -- hold misconceptions or irrational fears. Often we can at least get our information leaflet into their hands and get them to expose their minds to the idea of it... but not this time.... not this time.
I quite disbelieved I'd heard him correctly at first. Later, I couldn't quite believe our team had had that interaction at all. Was it a test? Was the man an actor and we volunteers were being throw a curve ball as some kind of in-the-field training? I'd been through RA training in college and the simulations of serious college student problems we were trained with then felt much like what was happening at that moment! Flabbergasted is a good word here. And I felt betrayed. The physicians are supposed to be on OUR side! Not on the side of whatever phantasms and ignorance makes a person refuse to become an organ donor.
Earlier, we'd had a Reverend come through and he didn't seem to want to sign up, either. His reservations may have been based in religion, I'm not quite sure. Was his belief stopping him? Had he simply not searched that part of his heart? I could see a struggle between emotion and logic in his face as he took the info and promised to come back. (We got a lot of that, actually, and really don't expect people will come back later. After all, we all know the tactics for disengaging from an uncomfortable conversation, yes?)
But... just before we packed up to move to a different venue, the Reverend came back. And he had filled out and signed the form! I got the sense this was a breakthrough moment for him. Yesterday, we actually changed someone's mind about organ donation; dissuaded him from whatever belief held him back. We walked away from the day with 39 new registrants, contributing to over 1000 new registrants gathered that day by LiveOnNY, but that was maybe the most meaningful one. Thus, the day was redeemed by one of our last sign-ups.
Yesterday was important in another way, too. On October 6th, 2014, I used a bus analogy to talk about who does or doesn't get a transplant and the maddeningly arbitrary nature of it all. As it happens, I showed the post to a fellow volunteer, Samantha, whose sister had unfortunately become a donor a year ago. Her sister saved four people's lives because she was registered as an organ donor. (But not even Samantha's story could sway some people, dammit.)
Anyway, I noted in that post that Kenna Taylor was denied transplant and was that day in ICU. One year ago yesterday. And then, one year ago today, I recorded in a Facebook post that Kenna had passed away. (You've been gone a year, Kenna, and I think of you often. You had a hell of a spirit.) I also noted that Eryne Shan had received her transplant, so the day was mixed and bittersweet. I was so thankful Eryne was finally on her way to health. I didn't know yet - and nobody could have predicted - the complications that would beset her and eventually kill her. I miss both of these ladies' presence in the CF internet world. And I just can't believe it's been a year already.
Why do I volunteer for LiveOnNY, especially when it means a lost day's worth of income? Because I must. For all those who have been turned down for transplant because the one common thread in all the Gordian Knots of transplant is that there simply aren't enough donors! I must get out there, man the tables, speak to strangers, shake hands sometimes (and then sanitize), and repeat our stories over and over because... well because my animal mind tells me if there had been just one more donor registered and one more set of lungs used instead of thrown away, maybe Kenna would have been accepted into transplant and lived.
It would actually take a tripling or quadrupling of available organs for transplant centers to cease picking and choosing, but you can't tell your Id that. The Ego knows the science, the Id doesn't believe in numbers and statistics. It goes by the heart. Unfortunately, it is my Id versus Mr Doesn't-Believe's id. It is my Ego versus my Id. It is my Belief versus my Dis-Belief.
Today, I am reminded that I can't bring back Kenna Taylor or Kyle O'Neil. As I told a reporter yesterday, 39 new registrants may seem like a drop in the bucket -- but a drop is measurable and each one increases the volume in the bucket. And I believe if I get enough people signed up over the course of my remaining life, maybe I'll be directly instrumental in saving one more person's life who would otherwise die waiting. Even just one more!
October 7, 2015
August 10, 2015
Forward
Post-transplant day 611. Forward.
I made a new friend last week at my local gas-station. Now I know most stories that begin like that don’t usually end well — usually with waking up in a bathtub filled with ice in a dingy hotel and a freshly MIA kidney — but this one is only in its first chapter. I kinda hope the story ends up being dull, routine, and anticlimactic, for my friend’s sake.
So before I elaborate further…let me back up a bit to where my thoughts have been since getting back to 100%.
My rank and status in the field of combat may have changed, but the battle rages on. Today, at 20 months out, I am in some ways healthier than I’ve been in my entire life, but in others have a lot of catching up to do to 33-year-old me, the one that ran the Flying Pig. I can keep weight on and good lung function (“lungction”?) up, but I struggle to get my legs under me. Such is the nature of getting older I guess.
But in this suspect maturity, and in moving on from the biggest crisis of my life, I find myself wanting to make my life count for something more than average. And volunteerism is the way to do it; at least for now, for when I don’t have time to go on multi-week epic adventures. I’ve gone through volunteer training with Live On NY, lower-NY-state’s organ procurement organization. These entities, the OPO’s, are the official state-by-state registries and organ clearinghouses brought into being along with the federal oversight board, OPTN (Organ Procurement and Transplant Network) via the National Organ Transplant Act in 1984. I am officially part of the enormous machine of people, laws, history, cause, and effect that saved my life a mere 611 days ago.
April and I have already been out manning a table at an event. We didn’t get many people to sign up, but we were working with an historically difficult demographic to get signed up and I think there were a few we reached who now will more readily sign up when approached again. My next gig will probably be a four-hour shift at the DMV. Better find my #1400 t-shirt!
But this kind of volunteerism is somewhat impersonal. Though April and I can readily help strangers put a face and a name to organ donation by telling our stories, we nevertheless remain strangers. But there are people out there who are not such strangers — and we must stick together. I would like to tell you about two people I know whom I’ve been talking with; people who need new lungs and whom I might be able to help. Owing to general traditions of medical privacy, I won’t use their real names until and unless they give me permission. They’ll know who they are when they read this. :)
The first is a friend of mine since we met years ago at a fundraiser she used to throw annually for the Cystic Fibrosis Foundation. She was a powerhouse then. Today, she is looking a bit deflated and is very sick. She is in the process of getting listed at NY Presbyterian for a double-lung transplant (of course). Earlier this year, when we began talking on Facebook and then over the phone about her status, it dawned on me that she doesn’t have the kind of support I had, and knowing what I do about NYP’s requirements, if she has any hope of getting listed, she needs Support. At least two, maybe three people who will commit to staying in New York once she’s listed and waiting and to providing care before, during, and after transplant. I’ve seen for myself how draining this role can be, having watched dozens of mothers, fathers, wives, husbands, and children shepherd their loved ones through transplant.
When we came to that point in our conversation…parents? sister? boyfriend? all unsuitable support for various reasons…. well, it took me less than a heartbeat to offer my full and unconditional support. I’ll do everything. I don’t want to see her turned down just because she doesn’t have stabile enough Support - how absurd would that be? And yet…I’ve seen it happen. And so, it’s my turn to cook, clean, chauffer, change dressings and IVs - whatever’s clever, man.
And to be completely honest, I do this knowing that I put myself at some risk. She does have CF, after all. But we both wear masks and use hand sanitizer liberally, etc. She has another support person, but that lovely woman lives near the hospital, not out here in Brooklyn. So she works on getting accepted, and we all will work on laying plans and contingency plans. In the meantime, she knows she can call on me anytime, 24/7, for anything. I’ve walked far more than a mile in her shoes; I don’t want her to experience any more hardship than necessary.
We've already been to her first meet-and-greet with her assigned transplant pulmonologist. It was a long and informative day, to say the least.
The other woman is my new gas-station friend. I know, I know…just…bear with me. So I turned around from getting my change after purchasing some Gatorade and I see a woman waiting for the ATM with her kid. She’s on oxygen. I can’t resist striking up a conversation in the most awkward way possible. I sidle towards her and she asks if I’m waiting for the ATM and “No, I’m waiting to talk to you, actually” just dropped out of my yapper. So as I’m mentally patting myself on the back for my suave and subtle introduction, something clicked for her faster than for me and she asked if that was my car parked outside. She said she’d noticed the Donate Life plates before, since she lives in the area (quite close as it turns out) and was I the person with the lung transplant? At the same time, I was asking her, “is that LIQUID oxygen you’ve got there??” (Unbelievably, because the companies won’t take new liquid O2 orders - only for existing customers.) Yeah, we had a few things to talk about. She’s been on O2 for five years - and may have another five years before she finally, really needs her transplant. Despite that, she is in the program at NYP, attends the meetings, etc. She talked about the difficulty of always having someone attend with her - and of course I gave her my card and said she could call on my anytime. I’d be happy to help her fulfill her requirements. As with friend #1, I am more than happy to lay out time and energy for friend #2. People did for me, after all.
We chatted a LONG time. I think the bodega owner was getting sick of us. But eventually I had to get on with my day. I hope we have a chance to chat again soon.
So is this a “Pay it forward” thing? Or just paying it back? I don’t know. I hope that my efforts bring honor to my donor’s spirit and maybe a little peace to his family; that the coffers of human kindness that have sustained me and the cocoons of love that have protected me are refilled, repaired, and ready to restore another soul.
Today, at 20 months, I am reminded that while I can never fulfill my debt to my donor, I CAN fulfill my obligations to my fellow humans - *explicitly because* my donor made it so.
I made a new friend last week at my local gas-station. Now I know most stories that begin like that don’t usually end well — usually with waking up in a bathtub filled with ice in a dingy hotel and a freshly MIA kidney — but this one is only in its first chapter. I kinda hope the story ends up being dull, routine, and anticlimactic, for my friend’s sake.
So before I elaborate further…let me back up a bit to where my thoughts have been since getting back to 100%.
My rank and status in the field of combat may have changed, but the battle rages on. Today, at 20 months out, I am in some ways healthier than I’ve been in my entire life, but in others have a lot of catching up to do to 33-year-old me, the one that ran the Flying Pig. I can keep weight on and good lung function (“lungction”?) up, but I struggle to get my legs under me. Such is the nature of getting older I guess.
But in this suspect maturity, and in moving on from the biggest crisis of my life, I find myself wanting to make my life count for something more than average. And volunteerism is the way to do it; at least for now, for when I don’t have time to go on multi-week epic adventures. I’ve gone through volunteer training with Live On NY, lower-NY-state’s organ procurement organization. These entities, the OPO’s, are the official state-by-state registries and organ clearinghouses brought into being along with the federal oversight board, OPTN (Organ Procurement and Transplant Network) via the National Organ Transplant Act in 1984. I am officially part of the enormous machine of people, laws, history, cause, and effect that saved my life a mere 611 days ago.
April and I have already been out manning a table at an event. We didn’t get many people to sign up, but we were working with an historically difficult demographic to get signed up and I think there were a few we reached who now will more readily sign up when approached again. My next gig will probably be a four-hour shift at the DMV. Better find my #1400 t-shirt!
But this kind of volunteerism is somewhat impersonal. Though April and I can readily help strangers put a face and a name to organ donation by telling our stories, we nevertheless remain strangers. But there are people out there who are not such strangers — and we must stick together. I would like to tell you about two people I know whom I’ve been talking with; people who need new lungs and whom I might be able to help. Owing to general traditions of medical privacy, I won’t use their real names until and unless they give me permission. They’ll know who they are when they read this. :)
The first is a friend of mine since we met years ago at a fundraiser she used to throw annually for the Cystic Fibrosis Foundation. She was a powerhouse then. Today, she is looking a bit deflated and is very sick. She is in the process of getting listed at NY Presbyterian for a double-lung transplant (of course). Earlier this year, when we began talking on Facebook and then over the phone about her status, it dawned on me that she doesn’t have the kind of support I had, and knowing what I do about NYP’s requirements, if she has any hope of getting listed, she needs Support. At least two, maybe three people who will commit to staying in New York once she’s listed and waiting and to providing care before, during, and after transplant. I’ve seen for myself how draining this role can be, having watched dozens of mothers, fathers, wives, husbands, and children shepherd their loved ones through transplant.
When we came to that point in our conversation…parents? sister? boyfriend? all unsuitable support for various reasons…. well, it took me less than a heartbeat to offer my full and unconditional support. I’ll do everything. I don’t want to see her turned down just because she doesn’t have stabile enough Support - how absurd would that be? And yet…I’ve seen it happen. And so, it’s my turn to cook, clean, chauffer, change dressings and IVs - whatever’s clever, man.
And to be completely honest, I do this knowing that I put myself at some risk. She does have CF, after all. But we both wear masks and use hand sanitizer liberally, etc. She has another support person, but that lovely woman lives near the hospital, not out here in Brooklyn. So she works on getting accepted, and we all will work on laying plans and contingency plans. In the meantime, she knows she can call on me anytime, 24/7, for anything. I’ve walked far more than a mile in her shoes; I don’t want her to experience any more hardship than necessary.
We've already been to her first meet-and-greet with her assigned transplant pulmonologist. It was a long and informative day, to say the least.
The other woman is my new gas-station friend. I know, I know…just…bear with me. So I turned around from getting my change after purchasing some Gatorade and I see a woman waiting for the ATM with her kid. She’s on oxygen. I can’t resist striking up a conversation in the most awkward way possible. I sidle towards her and she asks if I’m waiting for the ATM and “No, I’m waiting to talk to you, actually” just dropped out of my yapper. So as I’m mentally patting myself on the back for my suave and subtle introduction, something clicked for her faster than for me and she asked if that was my car parked outside. She said she’d noticed the Donate Life plates before, since she lives in the area (quite close as it turns out) and was I the person with the lung transplant? At the same time, I was asking her, “is that LIQUID oxygen you’ve got there??” (Unbelievably, because the companies won’t take new liquid O2 orders - only for existing customers.) Yeah, we had a few things to talk about. She’s been on O2 for five years - and may have another five years before she finally, really needs her transplant. Despite that, she is in the program at NYP, attends the meetings, etc. She talked about the difficulty of always having someone attend with her - and of course I gave her my card and said she could call on my anytime. I’d be happy to help her fulfill her requirements. As with friend #1, I am more than happy to lay out time and energy for friend #2. People did for me, after all.
We chatted a LONG time. I think the bodega owner was getting sick of us. But eventually I had to get on with my day. I hope we have a chance to chat again soon.
So is this a “Pay it forward” thing? Or just paying it back? I don’t know. I hope that my efforts bring honor to my donor’s spirit and maybe a little peace to his family; that the coffers of human kindness that have sustained me and the cocoons of love that have protected me are refilled, repaired, and ready to restore another soul.
Today, at 20 months, I am reminded that while I can never fulfill my debt to my donor, I CAN fulfill my obligations to my fellow humans - *explicitly because* my donor made it so.
April 24, 2015
100%
Post-transplant day #500. 100%
I had a great checkup yesterday, 499 days after my transplant. Several tests and several doctor consults. The upshot is that I haven't been this healthy in many years. My PFTs, the OFFICIAL ones, not the ones off my SpiroPD, have significantly improved: I'm at 96% FEV1 and 96% FVC. I am so close to 100% on the numbers that it doesn't even matter. Functionally, I'm there. 100% operational. Green lights across the board. Sure, it could all come crashing down around my ears in a week, a month, a year; it's a constant, but managed, risk. That's transplant life.
On the day-to-day level, 100% means I can work efficiently throughout the day, moving from one task to another, without the huge amounts of rest I used to require between every task, even mental ones. It means I have energy enough at the end of the day to go to the climbing gym for an hour or go jogging for 30 minutes. It means I have enough energy and strength to break in my new motorcycle with a 1500 mile trip. It means that while I'm in the Triangle dealing with medical stuff, I still have the time and energy to give my girlfriend her due attention, go out and catch up with friends, take my Mom to an appointment, work on a refinance, and start a light plot for the next play I'm lighting. All while living out of a T-bag.
What 100% means is that I can once again juggle all that I need to. It's delicious. I hope it lasts.
#500 has turned out to be memorable and special without forcing it, beginning with a long ride up to Winston-Salem last night (with April and Karen leading in April's car) to meet my friends Greg Williams and Alice Neff. We ate at Bib's BBQ - an adventure in itself - and talked over old transplant topics and where to go from here. As a founding member of the LRLR, this year's ride is the next Big Thing on my list.
This morning started with phone calls and texts at 8 in the morning and hasn't let up. But I got to start things off right with a nice breakfast at one of my favorite breakfast places, Another Broken Egg, with sweetie and my friends Pete and Jen Eisenmann. They have just finished moving to this area in advance of Jen's inevitable final decline and lung transplant. It gives her time to focus on her health (she's already back to using oxygen part time instead of full time), get to know the various CF and transplant programs in the area, and make a new home in a very hospital part of the country. I've broken bread with Jen before, but this was my first time meeting Pete, who has been an avid supporter of my athletic efforts over the years. Lots of coffee and lots of laughter. Quite the morning!
A couple hours later and I was opening the door to a mortgage closer, a notary public who makes sure everything gets signed. I think I wrote the long form of my name a couple hundred times. But it is done. I am refinanced at a lower rate and saving hundreds on each month's payment. It takes being at 100% to even start a refinance, much less hang on through one.
To cap off my day, sweetie and I rode over to Lowe's to have a copy of a key made. That's right: April got on the back of my bike, suitably attired in my leather jacket, full-face helmet, and gloves. Coming back, she tried my half-helmet and liked it more. This outing was her first time ever on a motorcycle. She's already looking at changes I could make to increase her comfort! I think the bug has gotten suitably under her skin.
So it is that on day #500, I felt the arms of my love wrapped around my waist as we rumbled through the pleasant outskirts of Raleigh. It's all I ever wanted, really.
Is the long nightmare over? While struggling along and enduring transplant, I often had to remind myself that "this too shall pass." Today, with spring's bright dawns and a bright future ahead of me, I am reminded that ... well, it has. And while this pleasant state may also change, will change....must inevitably change, it's worth breathing in the air and turning my face to the sun while I have the chance.
I had a great checkup yesterday, 499 days after my transplant. Several tests and several doctor consults. The upshot is that I haven't been this healthy in many years. My PFTs, the OFFICIAL ones, not the ones off my SpiroPD, have significantly improved: I'm at 96% FEV1 and 96% FVC. I am so close to 100% on the numbers that it doesn't even matter. Functionally, I'm there. 100% operational. Green lights across the board. Sure, it could all come crashing down around my ears in a week, a month, a year; it's a constant, but managed, risk. That's transplant life.
On the day-to-day level, 100% means I can work efficiently throughout the day, moving from one task to another, without the huge amounts of rest I used to require between every task, even mental ones. It means I have energy enough at the end of the day to go to the climbing gym for an hour or go jogging for 30 minutes. It means I have enough energy and strength to break in my new motorcycle with a 1500 mile trip. It means that while I'm in the Triangle dealing with medical stuff, I still have the time and energy to give my girlfriend her due attention, go out and catch up with friends, take my Mom to an appointment, work on a refinance, and start a light plot for the next play I'm lighting. All while living out of a T-bag.
What 100% means is that I can once again juggle all that I need to. It's delicious. I hope it lasts.
#500 has turned out to be memorable and special without forcing it, beginning with a long ride up to Winston-Salem last night (with April and Karen leading in April's car) to meet my friends Greg Williams and Alice Neff. We ate at Bib's BBQ - an adventure in itself - and talked over old transplant topics and where to go from here. As a founding member of the LRLR, this year's ride is the next Big Thing on my list.
This morning started with phone calls and texts at 8 in the morning and hasn't let up. But I got to start things off right with a nice breakfast at one of my favorite breakfast places, Another Broken Egg, with sweetie and my friends Pete and Jen Eisenmann. They have just finished moving to this area in advance of Jen's inevitable final decline and lung transplant. It gives her time to focus on her health (she's already back to using oxygen part time instead of full time), get to know the various CF and transplant programs in the area, and make a new home in a very hospital part of the country. I've broken bread with Jen before, but this was my first time meeting Pete, who has been an avid supporter of my athletic efforts over the years. Lots of coffee and lots of laughter. Quite the morning!
A couple hours later and I was opening the door to a mortgage closer, a notary public who makes sure everything gets signed. I think I wrote the long form of my name a couple hundred times. But it is done. I am refinanced at a lower rate and saving hundreds on each month's payment. It takes being at 100% to even start a refinance, much less hang on through one.
To cap off my day, sweetie and I rode over to Lowe's to have a copy of a key made. That's right: April got on the back of my bike, suitably attired in my leather jacket, full-face helmet, and gloves. Coming back, she tried my half-helmet and liked it more. This outing was her first time ever on a motorcycle. She's already looking at changes I could make to increase her comfort! I think the bug has gotten suitably under her skin.
So it is that on day #500, I felt the arms of my love wrapped around my waist as we rumbled through the pleasant outskirts of Raleigh. It's all I ever wanted, really.
Is the long nightmare over? While struggling along and enduring transplant, I often had to remind myself that "this too shall pass." Today, with spring's bright dawns and a bright future ahead of me, I am reminded that ... well, it has. And while this pleasant state may also change, will change....must inevitably change, it's worth breathing in the air and turning my face to the sun while I have the chance.
April 15, 2015
Breathe Easy
Post transplant day #491. Breathing easy.
Today, April 15th, is a momentous day, and will always be so. In the national brain, not only is it the ever-grim Tax Day, but it is also the much more grim anniversary of the Boston bombings. In one week, Dzhokar Tsarnaev will be sentenced, most likely to death. In the national mind, this is justice. (As a side note, I find it exquisitely ironic that his brother, Tamerlan, seemingly the mastermind behind the bombings, was killed not by police bullets, but because his own brother RAN OVER HIM in an attempt to escape. Not once, but TWICE. Thanks, bro.)
But in my brain, April 15th will forever be the anniversary of one of my dear friends and cysters, Ellie Alexandra Levy, getting her second double-lung transplant. It was the beginning of a period of time in which, after extensive recovery, Ellie finally breathed easily, without assistance, without oxygen, without coughing. And I can tell you from experience, it's those first weeks free of all that, able to take deep breaths and laugh with abandon, that feel like the greatest mitzvah our donor could do us. Extended life is wonderful, but just finally being able to draw breath without effort is in some qualitative way the more precious gift.
In the CF community, when asked what it's like, we sometimes challenge the questioner to breathe through a straw for several minutes, until they can't take it anymore. That's like the restriction we experience daily and forever -- until a day like today. Until a hospital says yes, a donor's family says yes, a recipient says yes please. All the struggle to breathe and stay alive gathers up into a single moment in a pre-op bay, like a firework waiting to explode, until the word comes back that the lungs are good. Then a beautiful chrysanthemum of fire blooms, sending nurses and doctors scuttling every which way, and the chrysanthemum expands and expands over time through surgery, ICU, stepdown, recovery, and finally -- as the chrysanthemum fades from the night sky leaving it as clean as it was before -- a life regained with effortless respiration.
Today, as I sit here sipping coffee and taking deep and regular breaths, my chrysanthemum long since seen and applauded, confident that my exercise will be harder on my legs than lungs, and once again able to fully enjoy my life, I am reminded that Breathe Easy is not just a send-off salutation for the dead. It is a wish for the best possible outcomes, as simply and sincerely said as Happy New Year to the living, whether respirationally challenged or not. For Ellie, and Heather and Jerry and Katie and Piper and April and Michael and Eryne and Jen and Denise and all of us pre and post, living or no, on April 15th my day-long prayer is: Breathe Easy.
Today, April 15th, is a momentous day, and will always be so. In the national brain, not only is it the ever-grim Tax Day, but it is also the much more grim anniversary of the Boston bombings. In one week, Dzhokar Tsarnaev will be sentenced, most likely to death. In the national mind, this is justice. (As a side note, I find it exquisitely ironic that his brother, Tamerlan, seemingly the mastermind behind the bombings, was killed not by police bullets, but because his own brother RAN OVER HIM in an attempt to escape. Not once, but TWICE. Thanks, bro.)
But in my brain, April 15th will forever be the anniversary of one of my dear friends and cysters, Ellie Alexandra Levy, getting her second double-lung transplant. It was the beginning of a period of time in which, after extensive recovery, Ellie finally breathed easily, without assistance, without oxygen, without coughing. And I can tell you from experience, it's those first weeks free of all that, able to take deep breaths and laugh with abandon, that feel like the greatest mitzvah our donor could do us. Extended life is wonderful, but just finally being able to draw breath without effort is in some qualitative way the more precious gift.
In the CF community, when asked what it's like, we sometimes challenge the questioner to breathe through a straw for several minutes, until they can't take it anymore. That's like the restriction we experience daily and forever -- until a day like today. Until a hospital says yes, a donor's family says yes, a recipient says yes please. All the struggle to breathe and stay alive gathers up into a single moment in a pre-op bay, like a firework waiting to explode, until the word comes back that the lungs are good. Then a beautiful chrysanthemum of fire blooms, sending nurses and doctors scuttling every which way, and the chrysanthemum expands and expands over time through surgery, ICU, stepdown, recovery, and finally -- as the chrysanthemum fades from the night sky leaving it as clean as it was before -- a life regained with effortless respiration.
Today, as I sit here sipping coffee and taking deep and regular breaths, my chrysanthemum long since seen and applauded, confident that my exercise will be harder on my legs than lungs, and once again able to fully enjoy my life, I am reminded that Breathe Easy is not just a send-off salutation for the dead. It is a wish for the best possible outcomes, as simply and sincerely said as Happy New Year to the living, whether respirationally challenged or not. For Ellie, and Heather and Jerry and Katie and Piper and April and Michael and Eryne and Jen and Denise and all of us pre and post, living or no, on April 15th my day-long prayer is: Breathe Easy.
April 4, 2015
Waking the dead
Post-transplant day #480. Waking The Dead
Coming back to life has been a long haul. It is more than rehabbing the body; it also involves rehabbing one's life.
As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many. First I couldn't climb anymore. Then I couldn't motorcycle. I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling. It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs.
The transplant itself, while not uncomplicated, is a fairly straightforward event. A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event.
Once the damage is done, the body slowly comes back to life and the mind follows. I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling. Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.
Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride. It was a brief return to motorcycling. Sort of a litmus test as to whether this was still for me. Was I still interested? Could I still handle the rigors of biking? It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.
But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T. I feel I'm once again a biker.
Some of the neighbors don't like Harleys. They think they're unnecessarily loud. Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble. But most people change pipes or at least the mufflers in a bid for more power. They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion. These pipes tend to be ... more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing. I hope I chose well. I'm not trying to be a bad neighbor, honestly.
Now, my first bike had a name, which she earned after my first and only accident on that bike. "Roxie." (After the murderess Roxie Hart, of course.) Many people name their vehicles. Heck even my bicycles have names, which they whispered to me after a period of time.
I wasn't going to name this bike yet. Wanted to break her in and see what bubbled up. But something happened two days ago, when I signed the final paperwork at the dealership. I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant. He asked what organs I'd gotten and said double lungs. He then asked a question most people don't usually get around to asking at Question #2: what was the underlying condition? I told him about my CF. Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie. She is young, owns her own Sportster...and has CF! We stood a respectable distance apart. She sees my old CF doc. And she is far, far from transplant. She could be my age or older before she'll need one.
But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones. And Katie and I had both been friends of Brian Jonson, who founded the CF Riders. Perhaps it is our burden to take up - we who are living on after him. We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths. Those who you just want to reach out and hug and say "I'm so thankful you're alive!"
On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again. I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.) "I'll certainly need an angel watching over me as I enter this next phase of life," I thought. And it became clear I had to name her after a CFer. The name of my new bike had suggested itself to me.
But dare I name a bike after a dead woman? I mean it as token of respect; a pledge to never forget. Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin. Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals? After all, we name our KIDS after dead relatives; this could hardly be more creepy. Could it? Fuck it; I stopped worrying about it.
And so it is that yesterday afternoon I received delivery of my new baby, Ellie. This afternoon, Ellie and I will go for a long spin together, given decent weather. We will start to get to know each other. And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.
Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather. The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road. And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name: "Ellie..."
Coming back to life has been a long haul. It is more than rehabbing the body; it also involves rehabbing one's life.
As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many. First I couldn't climb anymore. Then I couldn't motorcycle. I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling. It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs.
The transplant itself, while not uncomplicated, is a fairly straightforward event. A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event.
Once the damage is done, the body slowly comes back to life and the mind follows. I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling. Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.
Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride. It was a brief return to motorcycling. Sort of a litmus test as to whether this was still for me. Was I still interested? Could I still handle the rigors of biking? It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.
But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T. I feel I'm once again a biker.
Some of the neighbors don't like Harleys. They think they're unnecessarily loud. Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble. But most people change pipes or at least the mufflers in a bid for more power. They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion. These pipes tend to be ... more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing. I hope I chose well. I'm not trying to be a bad neighbor, honestly.
Now, my first bike had a name, which she earned after my first and only accident on that bike. "Roxie." (After the murderess Roxie Hart, of course.) Many people name their vehicles. Heck even my bicycles have names, which they whispered to me after a period of time.
I wasn't going to name this bike yet. Wanted to break her in and see what bubbled up. But something happened two days ago, when I signed the final paperwork at the dealership. I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant. He asked what organs I'd gotten and said double lungs. He then asked a question most people don't usually get around to asking at Question #2: what was the underlying condition? I told him about my CF. Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie. She is young, owns her own Sportster...and has CF! We stood a respectable distance apart. She sees my old CF doc. And she is far, far from transplant. She could be my age or older before she'll need one.
But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones. And Katie and I had both been friends of Brian Jonson, who founded the CF Riders. Perhaps it is our burden to take up - we who are living on after him. We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths. Those who you just want to reach out and hug and say "I'm so thankful you're alive!"
On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again. I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.) "I'll certainly need an angel watching over me as I enter this next phase of life," I thought. And it became clear I had to name her after a CFer. The name of my new bike had suggested itself to me.
But dare I name a bike after a dead woman? I mean it as token of respect; a pledge to never forget. Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin. Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals? After all, we name our KIDS after dead relatives; this could hardly be more creepy. Could it? Fuck it; I stopped worrying about it.
And so it is that yesterday afternoon I received delivery of my new baby, Ellie. This afternoon, Ellie and I will go for a long spin together, given decent weather. We will start to get to know each other. And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.
Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather. The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road. And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name: "Ellie..."
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