A Breath of Fresh Air

I first met Andrea (pronounced Ahn-dree-uh) Gavin Becker back in the late ’90s when we both were freelancing at a Boston ad agency. I remember two things about her in particular. She was feisty and didn’t think twice about changing my ad copy without even telling me. (She claims she didn’t know art directors weren’t supposed to do that. But I think she knew). Second, she had a bad, guttural cough that never seemed to go away. It was not until a few months later that I found out (not through her) that she didn’t have a cold, she had Cystic Fibrosis. CF is a lung disease that “causes persistent lung infections and limits the ability to breathe over time” — an odd way of saying that it kills you. How fast? I guess that might depend on how feisty you are. In this email interview conducted over the space of a few months, Andrea shares her story, her grit and her unique perspective on living life to its fullest.

TB: Do you remember that scene in My Cousin Vinny when Mona Lisa Vito is asked to prove to the court that she is an automotive expert?

AGB: Uh oh. I absolutely did not so I just watched it on YouTube and then I totally remembered! She was badass.

TB: That’s one of those movies that if I happen to come across when flipping through channels, I have to stop and watch. The reason I referenced that is because it was important for her to be established as an expert witness so that her testimony would be taken seriously. In the same way, I think it is important for our readers to understand how your battle with Cystic Fibrosis has given you a heightened awareness of mortality and the appreciation of life. So, to borrow from Mr. Trotter, the prosecutor in My Cousin Vinny, what makes you an expert? 

AGB: [I am so sorry about the lag time. I had a lung flare-up, but I have been really thinking about this a lot. It is a TOUGH question!]

When I was born I was given a life span of 17 years. Cystic Fibrosis is a brutal disease that causes repeated lung infections that over time scar the lungs until the only option is a transplant. Even then, it is not a guarantee and some people die waiting. There is no cure at the moment. You have to take meds, do endless rounds of IV antibiotics, inhalers, and chest PT [physical therapy]. There is major GI [gastro intestinal] involvement, you have chronic issues and I’ve had 2 obstructions and 7 inches of intestine taken out. You cough and cough green gunk all the time. As you get to end-stage lung disease you are unable to do most things that people take for granted like showering or making the bed. You are tethered to oxygen and stuck in bed while the world goes on without you. It is hard.

For me, it got really bad in my twenties, and I was listed for a transplant in 1996 at 26. I was doing pretty well until my lungs, full of infection, gave out on a plane bound for Detroit. I barely made it to the tiny airport hospital in time. But I did. What followed was 6 months in the hospital, sinus surgery while I was awake to prep for a transplant. I had to wear a cone-like dogs do to blow oxygen in my face. My doctor got me past the last few months with a compassionate need antibiotic. I could barely breathe, even on oxygen, my head hurt for a month after the sinus surgery, and I knew I was headed for a transplant with not so great odds. When I had my lung transplant I had a 50% chance of making it to 5 years.

During all that time, when I had to fight, I fought. I exercised even if all I could do was walk at shuffle pace on oxygen. I ate non-stop to try and gain weight to help my body. I was meticulous with my pills and working hard at PT. I ducked out of work at lunch and went to doctor appointments instead. I have done IV drips in my car and in the bathroom at a client presentation, For many years I held the 6-minute walk test record at MGH after my transplant (until someone with really long legs took the honor).

So you can imagine, when life is hard, in between all that you try to suck the marrow out of life. I go after what I want because I never know how many tomorrows there will be. And I have been on the edge there a few times. Many days I can’t do much more than try to be positive, and I can’t just go to Italy or ride a dolphin all the time or I would. But I do what I can, so I can leave this life with no regrets. 

TB: I’ve known about your Cystic Fibrosis pretty much since we met back in 1996.  But until now, I really didn’t understand the full scope of what your life is like living with this disease on a day-to-day basis. Honestly, it’s humbling. And it makes me feel a little ashamed when I think about the things that annoy me from time to time. And I’m sure that for you, it must make you crazy when you hear people complain about stupid things in their lives. You must just want to strangle them.

AGB: [In between these emails I had a surprise bronchoscopy that flattened my lung function, went home on oxygen, was told I likely would not get that much better, lobbied for steroids and got them, was told I needed to do chemo to level my immune system to help the rejection process and that I needed to go to Cleveland, ASAP, for another retransplant eval, declined the chemo, got better on the steroids and shocked all the doctors, then ended up in the ER last week for gastroenteritis and 2 more overnights at the hospital. Discharged Friday, in Wellfleet on vacation Saturday feeling great.]

OK so when people complain, and everyone does, myself included, I have to remember that if there is a complaining competition, 9 times out of 10 I will win. And really, nobody will ever be comfortable talking to you about their problems and anxieties, ever. I found people wouldn’t tell me things like they broke their ankle and it was painful because they felt it was insignificant “compared to what you go through”.

I tell everyone, tell me what’s going on with you, I want to know. Sometimes my perspective can help people, other times they just need a friend to listen and I want to be that person. And in a marriage, it’s the same. Nobody wants to be in a lopsided relationship. Your spouse needs to tell you about their crappy day at work or their migraine without feeling shamed. 

It’s different when someone is grumbling about the line at the bank or how their commute ruined their day. I try to imagine the person maybe has something going on like they just got bad news and have compassion for them. Sometimes I try to engage with them and point out it’s not the end of the world, and when we end up talking, most of the time, they are likable people. Other times, I just zone out. But I love people and connecting with people. That’s why I’m here on the planet.

TB: That’s a very gracious way to look at it. Suppose, though, that you were not on this planet. What would you tell someone from another world what your three most favorite things about this planet are?

AGB: 1) Dogs. Because they are pure expression of love and they don’t feel sorry for themselves. They are givers. 

2) Bearing witness to the planet’s majestic beauty. From the waterfalls of Hawaii to the curves in the Colorado River to the limestone islands like Capri — I get the same new feeling of wonder and amazement when I get myself out in nature. Also, 2A) gardening. Working with the earth and all it has to give, every day, every year, if tended and loved.

3) Creating art. Any kind. Pure creativity in action is true living for me.

TB: That’s really interesting. Can you tell me more about that connection between creativity and true living? And, what exactly do you mean by  ‘true living’.

AGB: True living, for me, is when we don’t let things we can’t control us. No matter what that is, and I find being creative in my life — whether literally by creating art, or by living with creativity and curiosity, I am much less likely to fixate on the negative and unwanted aspects of my day or my life. Creativity is using my brain for good. Worrying about outcomes, being anxious — these are using my brain for bad. 

TB: The expression “live like you were dying”, made popular by Tim McGraw’s song, is something that gets thrown around a lot. Do you “live like you were dying?”       

AGB: Honestly, it’s not realistic. You have to live —and for many who are *actually* dying this means taking toxic meds that leave you unable to get off the couch, never mind go skydiving. I guess live like you’re going to keep living isn’t as sexy. For me, it’s more like you try and make sure you have no regrets. That you can do from your couch if you have to.

TB: Do you think someone who has not gone through (or is going through)  a life-threatening situation can truly achieve that perspective?

AGB: Yes. Some people it stays with them, others it fades as the situation fades if they get better. It’s impossible to live in a heightened state of “there is a good chance I am dying”,  but you can learn how it makes you feel and what you want to do in that moment, and carry it with you if you are lucky enough to get back to health.

TB: But what about people who have never had to face death because of a disease or an accident – can they truly appreciate life the way you do?

AGB: I really don’t know. There are people I know who have faced death or live with terminal/life-shortening illnesses that don’t appreciate life, either because the illness drains it out of them or they just aren’t wired that way. I know other people that have never faced death who can suck the marrow out of life every day. I don’t think there can be a definitive line drawn.

TB: When I first approached you about doing this interview for The Bucket, we were still in development and you were going through an exceptionally tough time with your CF. Understandably, you declined. But on the day The Bucket launched last May, you sent me a message on Facebook that said, “Yes! I want to revisit our conversation from last fall. Let’s talk!” What made you reach out? Was it simply that you were feeling better physically? Or was it also seeing The Bucket’s mission in action?

AGB: In 2018 I was really, really sick. I began to look into a 2nd lung transplant and realized my pulmonary care team did not have my back. So I moved all of my day-to-day care from the hospital I had known all my life to a new one. I was evaluated for a transplant at a 3rd hospital in Cleveland. I was sick with the flu, parainfluenza and then RSV (Respiratory Syncytial Virus) over the holidays. Any one of them could have put me on the transplant list. I had to start telling people — my family, my friends — what was going on. Individually. It was exhausting. The treatments, the hospitals, the crappy doctors, the good doctors, the telling and the emails and missing events and holidays. I didn’t want to talk about it in a positive way because, frankly, it was the worst year of my life. 

Early this year, when I recovered from RSV (it took about 4 months) and had moved my care and felt confident I had done the best I could, I was able to reevaluate. Now I could be OK with what was happening to my body because I wasn’t calling the shots on whether I needed to go to the ER or change meds. A doctor was finally doing it. It was out of my hands, where I needed it to be. This allowed me to work on acceptance (again). It allowed me to be grateful again. And brought me right back to you.

TB: Well, I’m glad it did. A couple of times you have mentioned ‘sucking the marrow out of life’. There is that great quote from Henry David Thoreau which uses that expression. It goes:

“I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms…”

TB: Were you aware of that quote from Thoreau? And do you feel it captures the essence of your philosophy?

AGB: I wasn’t! I loved Thoreau in grade school when I read him and I strive to live deliberately. I grew up finding peace in the outdoors. And you REALLY appreciate the simplicity of what it offers you when you have known what it is to be confined inside a hospital for 7 months and you smell your first breath of fresh air, freed finally from the bells and dings of respirators and IV pumps. 

But I am an art director at heart. I like to make life and things beautiful and even sometimes fancy for people. I love sequins. I collect chain mail purses, milk glass, vintage gardening tools and sneakers. So I am not really exactly what Thoreau had in mind with living simply. But I think if he lived in this time, he might see that sucking the marrow out of life looks different for everyone.

TB: One last question. This one should be easy. What can our readers do to support finding new treatments or even a cure for CF.

AGB: A HUGE new treatment, Trikafta, was just FDA approved and entered the market for CF this month. It is a game-changer and could potentially change CF from a life-threatening disease to a manageable one. The CF Foundation is the best place to support ongoing efforts to cure this disease, which is so much more within reach now. For many like me, though, a lung transplant will still be the only option if Trikafta is just too late and you need or have had a lung transplant. And so what everyone can do, and it is FREE, is become an organ donor if you aren’t already. Talk to your loved ones and make sure they know your wishes even if you think it is assumed. And then talk to one friend or family member about them becoming a donor as well. Spread the word.