Student, Teacher, Husband, Father: My CF Journey
by Evin Green
When I was told that during this 30-minute speech, Donna and Dr. Simon would essentially like me to tell you my life story, I realized I would have to make certain that I included the most interesting thing about my life thus far. The hard part would be determining what that is. Is it the fact that when I got my first job as a high school English teacher, I was only two years older than some of the seniors in one of my classes? Is it the anecdote about how my wife and I actually met in Preschool, and before falling in love during our first year of college, we dated each other’s best friend in high school? Or could it be my reign as Pumpkin Prince, when for two years in a row I grew (along with the help of my Grandpa Mooney) the largest pumpkin in Tuscola County? But then, I realized all of those tidbits ignore one key thing: you, the audience. This is not the first time I’ve spoken publicly about my life with Cystic Fibrosis, but it is the first time I’ve ever spoken to a group that is so knowledgeable about the disease. Virtually everyone in this room knows what it’s like to make sure you have enough Pulmozyme and a large enough cooler before leaving on a week-long vacation. You have all asked the question, “Did you take your enzymes?” Each of you has listened to someone you love coughing in another room and wished that you could somehow spare them from needing pills, inhalers, or IVs to remain healthy. So when I considered why I was asked to speak here tonight and what the most interesting thing about my life is to you, it’s this: that you have every reason to believe that your daughter, or your husband, your wife, or your son, will have a life that’s just as ordinary, just as remarkable, and just as ripe with opportunity as mine has been.
My CF journey began partly because of television. I was the first born in my family, and when a public service announcement declared it was Kiss Your Baby Week in the early months of 1983, my mom, along with thousands of other new mothers, did just that. Since she and my dad disagreed on just how salty their 3 month old tasted, a few more relatives were brought into the fold, and the consensus was, yes, something was amiss. Not long after, my parents took me to the doctor because of a respiratory infection, and I was later admitted to the hospital, where my mom told the doctors about my savory forehead flavor. When the test came back suggesting I did have CF, I was transferred to Detroit Children’s hospital. After about seven days there, I was discharged with a formal diagnosis of Cystic Fibrosis, and once home, my mom and dad began all of the requisite treatments: Pre-digested formula and eventually enzymes in the applesauce, along with percussive and postural drainage four times a day; basically everything that was available in 1983.
I have never known an existence without CF, but I have very few memories of the illness impacting my life in my elementary school days, apart from going to the office to take my enzymes before lunch every day. I also do not recall when I began doing inhaled medicines, but I was around 11 years old when Pulmozyme was approved and the hum of a nebulizer graced my home at least once each day from that point forward. I think the fact that I have so few memories about having CF as a child it is a testament to how my parents normalized the realities of being a kid with chronic illness. Having CF wasn’t a secret, or something that made me brave, it just “was.”
The earliest example of have of how I processed being a kid with CF is in the form of a book I wrote for a class assignment in 2nd grade called “I’m short and have CF.” Both of which are still true, as you can see. It is filled with what I now recognize as misinformation about the disease. My lung collapsed when I was born, and at age eight, I believed that was why I had Cystic Fibrosis. I also focused on my height, which I completely blamed on CF, not realizing it was in fact my genes that made me short, just not the mutation on my delta F508.
Two years later the book I wrote for school focused on CF Camp. Some of you out there might be familiar with Onkoi Benek… * do Beaver Gesture * Where are my beavers at? Though we are now far more aware of the risks of CFers eating, playing, and bunking together, the importance of having a social bond with adults and kids who knew exactly what my life was really like cannot be understated. CF was something I was always willing to talk about and explain to my friends, but nothing could compare to people who inherently understood that “my parents pound on me every night” was not a reason to call Child Protective Services. And that idea of a familiar bond is why we are here tonight, and why we are so lucky to have social media and other forums that allow us to be part of a community without having to be in the same room. I still have letters I received from fellow campers and staffers, and they remind me of how these relationships gave me a “you are not alone” confidence, the value of which is immeasurable. One of the staff members, James L. Myer, a priest and lawyer who some of you may know due to his deep connections within the local CF community, became a mentor to me and would eventually be a part of my most important life events.
Another reason that my childhood memories of CF related situations are sparse is that I was not hospitalized again until after high school. Missing school for a check-up once every three months is one thing, but not facing a missed week of school or a stressful course of IV treatments in those formative years delayed for me a realization that everyone has, and most CFers probably have because of their illness: life is not fair. It is such a trite phrase, but I’d imagine we all have a story that encapsulates when this truism crystallized for us. Mine was in my senior year, when I tried out for the Varsity baseball team. I had been playing baseball with my younger brothers in the back yard since they were old enough to swing a bat, and had been involved in organized baseball through the Caro Baseball Federation since I was six years old. I had always looked forward to playing in high school, since I knew my solid second base skills and single up the middle hitting abilities meant it would be highest level I would ever play at. After two years on JV, Varsity tryouts came as the snow began to melt in 2000. I went and had a physical done at a local doctor, and was eager to advance to the next level along with my fellow JV teammates from the previous year. When the coach started the fist tryout by having us run lap after lap around the gym, I didn’t think much of it, but knew keeping up with everyone wasn’t possible. I ran at my own pace, coughed quite a few times while I ran, coughed even more when I was done, and was quite exhausted when it was time to move on to fielding drills. At the end of tryouts, we ran a series of sprints, and that went about as well as you would expect. When I showed up the next day for the second part of tryouts, the head coach took me aside and said he couldn’t allow me to continue to participate. My illness, which he admitted he knew very little about, was too big of a risk. I told him that I had a physical on file, and I wanted to point out that I could easily handle running down to first base and waiting there during the next at bat, and the furthest I’d ever have to run in a game would be from the outfield back to the dugout, but decided there’d be no way to convince this sixty year old Army vet that I was anything more than an equipment manager, which is the job he offered me before telling me to get my gear and call for a ride home. I clearly remember telling my dad the story though tears in the car as we left. That was the day that I lost competitive baseball, and the first time I felt like Cystic Fibrosis had robbed me of something.
Now, life may not be fair, but it is interesting. Instead of playing baseball that year, I landed a small role in the school play, something I’d never really been interested in before. As I would later go on to minor in Communication & Theater Arts, teach Drama and Speech, and run an Improv Club at Canton High School, I think it’s safe to say that I’m happy with how things turned out. I also recognize that my “Life’s Not Fair because of CF” realization was a pebble compared to the rockslides that many young CFers face. For so long I had it so easy and didn’t fully realize it. The biggest CF challenge of my entire childhood was when I was diagnosed as diabetic right before Halloween of my sophomore year. It added a new daily pill, and eventually insulin shots multiple times a day. Statistically, about a third of CFers will have to deal with this aspect of the disease, but hearing statistics certainly didn’t make me more accepting of this change. I initially fought hard against having to stick myself with needles every day, but eventually realized that instead of saying, [exhale / tone]“One more thing” I should lighten my tone and add “Just” to the front of that sentence. That approach continued to be the way I dealt with all aspects of CF from that point forward.
Even though I didn’t use this term then, because, to be honest, I just made it up for this speech, around that time I adopted a philosophy of proleptic hedonism. Rather than simply living for the moment, consciously or unconsciously, all of my decisions were predicated on doing whatever it took to ensure my future happiness. I first learned of a CF related life-expectancy statistic when I was in high school preparing for a speech about the digestive aspects of the disease. The Internet was this new thing the school had recently gotten, and I got an eyeful about many aspects of CF, including complications with regards to reproduction. A teenage kid staring at a computer screen in a school library, feeling waves of confusion and frustration. This is the sort of thing that should only happen when a student is trying to write an analytic essay on Macbeth, not gaining insight on defining factors of one’s life. I couldn’t help but wonder, “Why didn’t anybody tell me this stuff? Well, because I didn’t know to ask the questions.
But now I knew the answers, and while the circumstances were less than ideal, that day was the genesis for a basic tenant in how I approach life—“What can I do right now to make sure I’m happy with how everything turns out?” Despite the statistics I saw on the screen that day, I didn’t view my own mortality as being defined by CF. I began operating under the perhaps dark assumption that anyone, at any time could get hit by a bus, or a falling tree, or a bus swerving to avoid a falling tree. And like anyone, I didn’t want to have any regrets or feel like I wasted any time in reaching my goals. I was aided by the fact that, having started school age four, I was the youngest among my school’s graduating class. In tenth grade, I had decided that I wanted to teach high school English, so when it came time to apply for college, I sent all of my information to several universities with good teaching programs, and was offered three full academic scholarships. I chose Eastern Michigan University for two primary reasons: it had the most diverse student population, and it was very close to the University of Michigan, the hospital to which my doctor at the time, Debbie Todor, was going to refer me. As a 17 year old, I had no clue I was making a decision that would pay dividends right up until this very day.
Starting college was not without its complications, and the one I was most worried about was making my blindly assigned roommate comfortable with the idea of living with a guy who coughed a lot and took a bunch of medicine. I had no doubt I could manage my care on my own: Eastern’s fabulous on-campus pharmacy and over a decade of being responsible for doing my medicine under the watchful eye of my parents were on my side—but a one in a million coincidence revealed itself when I called my would-be roommate Chris for the first time. He sounded nice enough, and after some basic chit-chat, I told him I had Cystic Fibrosis and asked if he’d ever head of it. He had. His younger sister had it and she’d passed away a few years earlier. I don’t know what I said after hearing that. Probably all of the wrong things, because I was completely flabbergasted. Ultimately, Chris and I never became close, and I always wondered if it was because I represented a life that his sister never got to have, or if it was simply due to the fact that he and I viewed college very differently. At that point, my girlfriend Kayla, who is now my wife, was at Michigan State, and my primary concerns were spending time with her and doing well in my classes. After that first year of college, I proposed to Kayla. We recognized that both of us being 18 made the situation a little atypical, but we planned for a three-year engagement, which made her parents and mine more comfortable with the whole thing. After all, knowing each other for 14 years only accounts for so much. Looking back, we both agree that it’s quite likely that our haste to be a permanent couple was influenced by me having CF. But at the time, we just knew we were in love and wanted to be married- it was that simple. She joined me at Eastern that fall because, as luck would have it, she also wanted to be a teacher, and Eastern would allow us to be together while still pursuing our educational goals.
Proleptic hedonism drove me to finish Eastern’s four-year teaching degree within three calendar years, which was possible because I began taking as many Spring and Summer courses as I could. This is how I came to be employed at Ypsilanti High School in the fall of 2003 as a 20 year old, teaching one class of seniors who saw me as a barely older brother. After three months of teaching English classes while the usual teacher was on an extended maternity leave, Ypsi High saw fit to keep me on to help write a grant proposal for a major project they had their sights set on. So, while I added experience to my resume and earned a steady income, I could also focus the wedding, which in March of 2004, was a little over two months away. I distinctly recall walking to the Michigan Student Union to meet with our former classmate and prospective wedding ceremony piano player when I stopped to cough. Blood. 21 years, and this was a first. I was pretty terrified, but also wanted to press on. We had so much to prepare for, and I had no time to be sick. Having never been hospitalized prior to this, I was ignoring a lot of signs that I needed to take care of myself instead of the wedding plans. I was also ignorant, because I had never been seriously ill—I genuinely thought the pain in my torso was from the stress of coughing, so I would put icy hot patches on my chest and back. It didn’t dawn on me that there was literally something deeper going on.
I went to the ER at U of M once Kayla and I realized this was much more serious than we’d hoped. In addition to me being new at this, Kayla was seeing me deal with a significant CF exacerbation for the first time. I was admitted to the hospital but only spent one day on 6C before I was placed in the ICU on bipap. The pneumonia in my right lung was severe. As you can imagine, my family was extremely worried, but we were very lucky to know someone who had seen situations like this more times than some pulmonologists have—James L. Myer, or Jimeyer, as he is commonly known. While I was on bipap, my wife remembers Jimeyer coming to see me to perform the anointing of the sick sacrament, and basically saying, “What’s all the fuss, this kid is fine.” With our wedding less than a month away, the comfort he provided was invaluable. 11 years ago this week, after a total of 13 days in the hospital, I told the discharge nurse that I would never see her again, because this “me getting hospitalized” business was just a one time thing. This kind of attitude kept us from worrying, but was also a defense mechanism I used to avoid acknowledging that I nearly lost my wedding day to Cystic Fibrosis.
I returned home on oxygen, but was soon weaned from that and was able to return to work. Things settled back down just in time for the wedding, and though my tux was a little oversized as a result of typical in-patient weight loss, on May 22nd, 2004, there was otherwise no sign of the fact that just a few weeks before I had been given Last Rights by Jimeyer, who married Kayla and I that day. In a way I am very grateful that I got so ill prior to the wedding, because I don’t think a person marrying someone with Cystic Fibrosis typically does so without fully confronting the realities of the disease, and had I not gotten so sick, that could have easily been the case. When Kayla said, “In sickness and in health…” that day, she, for the most part, fully understood what that entailed. We didn’t know exactly the hows or whats or whens, but we understood a mutual commitment to making our lives wonderful regardless of what health issues came my way would be crucial to a successful marriage.
Being hired at Canton High School three months after our wedding was a dream come true. Most teachers would do anything to step into a position like the one I did, and for me it was especially poetic that I was a tenth grader in high school when I decided I wanted to teach English, and now my job was primarily teaching American Literature to sophomores. I was told I was the youngest teacher anyone could remember the district hiring, but at least now I had five years on the 16 year olds sitting in the rows in front of me. I carved my niche as the teacher who educates with humor and passion, one who is just as likely to dress up in a costume as he is to lead a serious discussion about racial equity. I strove to make sure that my health issues did not define me, but I did address them with each class at the start of the year. I told them first about being diabetic, and explained that if I was lying on the floor when they walked in one day, that was not me creating an elaborate and engaging lesson- that was me desperately needing sugar. Of course, this never happened, but I found it helpful to humorously describe the most dramatic situation possible to simultaneously portray the seriousness of the issue without freaking the kids out. I would then tell them about Cystic Fibrosis, which many kids had heard of thanks to biology class. When it came to explaining CF, my main goal was students understanding that although I may sound like someone who has the flu and needs to go home, my coughing was normal and they weren’t at any risk of catching something from me. I described my lungs as “the party house”-- that home in the neighborhood where the parents don’t pay much attention and stuff happens there that really shouldn’t be happening in a place where kids are. Based on the knowing glances I received, it was an effective metaphor. With those two issues covered, I could go about the business of teaching, and that’s what I did for nine and a half years.
At the start of my fourth year, I was, for the first time, both a teacher and a father. My son was born in August of 2008, and it was at that time that my life took on new meaning. Particularly because, as is typical with people with Cystic Fibrosis, having our son took considerably more planning and effort than did the conception of my wife and some of the other happy accidents in this room. I had been aware of my desire to be a dad for a long time, but after learning about the issues CFers face with reproduction, I had long ago accepted that my students may have to be my surrogate children, and I told myself I could live with that. But, having Henry six years ago made me see that even more than being a teacher, being a father to him is the reason I live and breathe each day.
As he got older, I got sicker. Such is the nature of chronic illness, and despite phenomenal care from Dr. Simon, my exacerbations were more frequent and I was less able to bounce back from them. While my son was still young enough that my illness didn’t impact how he saw me as a parent, I recognized such a day would likely come. I made every effort to keep my health from affecting my role as a husband, teacher, and father. Teaching posed the most obvious challenges, but I refused to miss time from the classroom unless it was absolutely necessary. On several occasions, I did IV medication during my lunches at school. This did not seem extreme to me; I wouldn’t put my ultimate well-being above my career, but I also wouldn’t be at home if there was any way I could be in the classroom. I later asked some of my colleagues what they thought of this. One said that she did worry that my health could be negatively affected by my decisions, but understood my need to keep working because of my passion for teaching. Another said that I did almost too good of a job of making the circumstances seem like no big deal. She found my commitment admirable, but also worried that I might not be putting myself first. Students weren’t aware of my lunchtime IV drip unless one of them needed help with an assignment during that time, and I’m sure it just perpetuated a well known fact: The words “normal” and “Mr. Green” don’t belong in the same sentence.
The day before Mid-Winter break 2013, I knew I was sick. I could tell I needed to go on antibiotics and I figured the week off would be just what I needed to be back to my usual self. I was oh so wrong. I was in the hospital that Sunday, on IVs and fighting off pneumonia, but certain I wouldn’t miss a day of work. I focused on the positive: even though I was on oxygen, at least I wasn’t in the ICU on bipap like I had been ten years prior. I would be back to my normal self in no time. Then, near the end of my stay in the hospital, a doctor who was completely new to me, and I’m assuming, new to treating CF patients in general, came in the room and told me, and I quote, “You have terrible lungs.” This doctor is lucky my wife doesn’t know his address, or his house would still be getting egged on a weekly basis. Thankfully, this was our only instance of bad bedside manner that we’ve really ever encountered at U of M. Not long after that, we spoke with Dr. Simon, who confirmed that my poor lung function was largely due to scarring from years of infections, and the most recent one had been the tipping point. When he used the phrase “lung transplant,” it was certainly not the first time I’d heard it, but it was the first time I realized that that my CF journey was headed in a direction that I had never really expected.
Coming home on IVs and on oxygen was bittersweet. I wanted to believe both were temporary, just like they had been when I got sick right before my wedding. I didn’t want to confront the fact that needing supplemental oxygen would fundamentally change how I functioned as a father and as a husband. But the large oxygen concentrator in my home was there for the long haul. Things I had taken for granted like showering, taking out the garbage, or playing “hallway hockey” with my son were now difficult or impossible because of how little stamina I had, even with the portable oxygen concentrator. Everyone agreed the best option was for me to go on medical leave for the foreseeable future, and I had to close off the notion that I would teach again any time soon. At this point, it would have been easy to retreat inward, and see only what CF had taken away from me. But our family mindset was that this was only temporary, and I needed now to focus on feeling better and getting approved for the lung transplant list by going to the litany of appointments that are required to verify that one’s body is capable of handling such an extreme procedure. My colleagues and former students showered me with support, but nothing was more crucial than knowing that my immediate and extended family were going to be with me on this journey.
After three months, I was placed on the lung transplant waiting list. Something as monumental and emotional as cleaning out my classroom and seeing that the mural of Homer Simpson that once graced one of its walls had been painted over somehow lost its significance when I knew that it could be interrupted by a phone call saying that a donor match had been found. One of the most crucial elements for me was the mentorship that I had in preparation for the surgery. Someone I met at CF camp and had remained close to had a successful lung transplant three years prior, and he and I kept in close contact as he graciously answered my questions about both the mundane and strange things that happen when one is on the transplant list. Additionally, Jimeyer has known more CFers and counseled them though their transplant experiences than he could even count. These two, along with my family and medical team at U of M, kept my mind and body right, and were committed to doing so as long as it took for a donor match to be found.
It turned out that my wait would be long, and yet sadly, also typical. We made the best of a year where every holiday, birthday, and vacation was a reminder of how my life had been impacted by this new status quo, and yet we were grateful for all of those occasions as well. I scootered all around Disney World, my wife and I enjoying every magical moment with our son, trying in those moments not to surrender to the thought that this could be our last family vacation. As we neared the one-year mark, no amount of optimism and cheer could override the emerging truth that I was getting worse even though I was now in the expert care of both Dr. Simon and Dr. Tammy Ojo, who would become my pulmonologist after the transplant. I remember getting used to hauling my portable oxygen backpack and then noticing, as I neared the one year anniversary of going on the list, that I was starting to need more oxygen than the portable system could provide. The thought of such limited mobility terrified me, but I knew that I would be willing to do whatever necessary to be healthy enough to have the surgery once the call came.
Now, I have a small confession… as much as we prepared for the transplant and made a plan…we didn’t over-plan. We only skimmed the transplant book, we finished packing a week before we got the call, we did little to no research online- and this is not at all like us— We are currently 80% packed for our Disney trip in June and my wife has read every Disney blog known to mankind. But this was the approach we needed to survive and thrive during the wait. Even though my health was declining, somehow my family had never been happier. We had more time to be together, less stress from work, and we appreciated all the mundane activities that we had previously pushed through. Getting new lungs would save my life, but waiting for the lungs gave my life new meaning. And on August 20th, 2014, that wait was over.
That morning, the phone rang. Jenny and Cathy were so glad to finally get a hold of me, as I had not heard my phone ringing during breakfast. I blame the Frosted Flakes. I could sense the elation in her voice as she told me that a prospective donor match had been found. The rest of that day was a parade of pokes, prods, preps, and most of all, waiting.
Even as I lie there in the Operating Room, there was still a potential for a “dry run,” and that the lungs would not be viable for transplant. I used humor to remain calm: a phone range in the OR, and I couldn’t make out what was being said. When the doctor hung up I asked, “What was that, a wrong number?” My biggest fear was waking up and finding out that they had not been able to perform the operation. With my favorite music playing over the speakers, I pushed this concern aside, and drifted off into darkness with an extremely deep sense of warmth, positivity, and love.
The biggest misconception about a life saving surgery like this is that the person being operated on is the heroic one. I didn’t deserve that title in those first days. All I did there was lie in a bed and let a machine help me breathe for two days while I was unconscious. It was my wife and her sister, along with my mom and dad, who had the difficult job on those days. First the uncertainty during the 16 hour surgery, then watching monitors, looking at me with so many tubes and lines coming out of my body, worrying and waiting for me to wake up and breathe on my own. And I was blissfully unaware. When I did wake up, I was out of bed and walking on the same day, thanks to PTs like Emily, and realizing that I needed to learn how to breathe again, with the help of Jason, a seven foot tall respiratory therapist. If you’ve read the latest CF Newsletter, you know the rest of the story. I’ll be happy to answer any questions in a moment, but the nuts and bolts of it are that my recovery was pretty typical, perhaps aside from the hallucinations induced by the medicine and the migraines. It was a small price to pay to be able to breathe room air just two weeks after the surgery, after having been on oxygen for over a year and a half. Before going home, I was well educated on how to handle my new regimen of daily pills. Cathy and Dr. Ojo assured me that I could call if I needed anything and that there was no such thing as a silly question. And call them I have!
Today, I am living a life I only dreamed of. I can no longer wear Adult Small shirts. Last Saturday at my nephew’s birthday party, my son’s helium balloon was blown out of his hand, but I chased it down before it disappeared into the sky forever. I can literally run like the wind. I’ve been able to participate in two fundraisers for Gift of Life Michigan that Canton High School held in my honor. Starting in June, I will be teaching half-day summer school there to help gauge what the best plan is for my professional career. My wife and I look forward and see a brighter future than either of us could have reasonably hoped for. My life has become immeasurably better in every imaginable way because of my family, myriad doctors and nurses, and the decision of one person whom I will never meet and never be able to properly thank. In lieu of that, I have begun a “gratitude crusade,” telling every person I know, and even a few strangers, like the nurse in Washington DC who was behind me in line waiting for coffee, how much I appreciate them. I have contacted my donor family and hope that at some future time, I will be able to thank them in person.
One of the novels I taught every year to sophomores, The Great Gatsby, famously ends with the quote, “So we beat on, boats against the current, borne back ceaselessly into the past.” Now, that was never my favorite novel, and I actually can’t even swim, but inasmuch as all of us are boats in the ocean of life, we each set a bearing toward where we want to go. However, unlike Jay Gatsby, those of us in this room are not obsessed with reliving days gone by. We are focused on adding tomorrows.
A life with Cystic Fibrosis is not going to be smooth sailing, but what I’ve learned in my 32 years is that you are better off not fighting the current. From the fiercest wave to the smallest ripples, when we roll with what comes our way, adapt to new challenges, and embrace exciting opportunities, we get closer to shore. Where that shore is and what awaits us on it is different for everyone in this room. But what is true for all of you is that there will be times when the person who is the reason you are here tonight cannot captain his or her ship alone. In such times, your strength, your faith, and your encouragement will fill their sails and be exactly what they need to stay the course.