As promised, here is the written version of my speech that I gave for the CF Foundation's Spring Gala. If you have CF, I hope it encourages you to know you aren't fighting alone. If you are the loved one of a CFer, I hope my words assure you that even with CF, life is worth living. If you know very little about CF, I hope I motivate you to learn more about the disease, and maybe even donate to the Cystic Fibrosis Foundation to help fund research for a cure.
And most importantly, I hope that through my clumsy words, the beauty and perfection of the one in whom I put my faith, shines brightly.
Since tonight is Spring Solstice, I’d like to share with you a poignant quote by C.S. Lewis, one of my favorite authors and theologians:
He wrote: “The future is something which everyone reaches at the rate of 60 minutes an hour, whatever he does, whoever he is.”
In other words, our lives are bounded and measured by time; none of us knows how much time he or she has. After all, any of us could be hit by a bus at any time, right? Wrong! I looked up those statistics once. Did you know that the odds of being struck and killed by a bus are only 1 in 10 million?
By stark contrast, the odds of a person with Cystic Fibrosis dying before reaching age 37 are 1 in 2.
I have cystic fibrosis. When I was first diagnosed, the doctors told my parents that I may not live to celebrate my 10th birthday. As you can clearly see, I’ve beaten that statistic, but I’m still in a fight for my life, and it’s a race against time. In order to give you a better picture of what this fight looks like, I’d like to describe some of the ways that cystic fibrosis not only steals my breath, but literally takes away the precious hours of my life.
My fight begins each morning before I even get out of bed. As I lie there beside my husband, my breathing sounds like crackling cellophane because of all the mucus that has collected in my lungs during the night. I spend the first 5 to 10 minutes of my day just coughing—coughing so that I can breathe well enough to get dressed and get moving.
Then of course there’s all the medication I need just to function as well as possible. Medications like:
I take no fewer than 11 separate medications to manage my CF. I wish this meant that I only had to take 11 pills, but that’s not the case. I take approximately 50 pills each day.
Each enzyme, each multivitamin, and especially each inhaled medication, is a brazen reminder that my body is held hostage by a disease that has no cure. And even with all this, there’s more. Inhaled medications can take up to 3 hours total during my day.
In addition to the medications, a day in my life with cystic fibrosis is hardly complete without a big dose of lung clearance exercises. These are designed to loosen up the mucus so that I can cough it out easily. One thing that I do is play French horn. That was actually my parents’ idea back when I was in elementary school. I wanted to join the school band and play the xylophone. My parents said “No way, kid. You’re going to play something big that takes lung exercise—because you’re not doing too great in P.E.!”
Ever since, the horn has not only provided method of helping me with my lung capacity, but it serves as an enjoyable creative outlet. Music is a very special bond that my husband and I share. Aside from our common foundation of faith, it’s probably the only thing that CF will never diminish in our relationship.
All of the elements of my life with cystic fibrosis take up a lot of time. Every minute I spend doing my inhaled treatments is a potential trade-off for what I hope to be infection free weeks or even months.
The most frustrating and exhausting part of having CF is how much time everything takes to stay healthy and how much time I lose whenever I get sick. Cystic fibrosis stands in the way of forming certain friendships. Because of the risk of cross infection, people with cystic fibrosis are not permitted to physically be around each other. Being denied the chance to support and be supported by someone who knows exactly how much this disease gets in the way of being “normal” is one of the unkindest cuts of all.
Even though much of my management of cystic fibrosis requires adherence to routine, and a great deal of self-discipline, each day can still be wildly variable. No matter how well I try to take care of myself, eat right, etc., sometimes I will fall prey to a lung infection anyway. That's just the reality. Someone once described it as "CF didn't read the book." CF doesn't know that I'm doing everything I'm supposed to in order to stay healthy.
Even when I'm feeling "well", I cannot forget that I have CF. I have to pace myself so that I don't deplete my energy. There are times (quite often, in fact) when I would love to do many activities, take on multiple projects at work, and try to be Super-wife at home, but the physical reality is that I cannot do those things.
Having CF demands that I evaluate my priorities, and make wise decisions about how I spent my days. If a project at work will require an early morning meeting, I have to be sure to go to bed on time the night before. If my adoring husband (whom, by the way my respiratory therapists have dubbed "Mr. Phenomenal") wants to take me on a date, we need to plan ahead so to work it around my medication schedule and my available energy.
Given my limitations, we try to remain flexible enough to accommodate those limitations as the need arises. Even with flexibility and an upbeat attitude, there are disappointments.
For two and a half decades, this disease has forced me to be absent from major events and occasions. My mom had to celebrate her first mother’s day without me in her arms, because I was recovering from major surgery.
Twice, I missed friends’ weddings because I was too sick to attend, let alone walk down the aisle as a bridesmaid, like I had been invited to be.
For the last 13 years I’ve been hospitalized at least once a year because of various lung infections or pneumonia. Each of those hospitalizations has been for a minimum of a week, followed by 2-3 weeks of home infusion therapy. Five of the last eight months I’ve been hospitalized; in and out, in and out. I spent my wedding anniversary in the hospital. I ate Thanksgiving dinner there. Even as recently as Valentine’s Day, I was an inpatient over at UCSD Thornton hospital.
I’m telling you all of this because this is the reality of the disease that I fight not just on a weekly, daily, hourly basis--sometimes it’s even a minute to minute fight. Such was the case in December when I lost consciousness due to oxygen deprivation, and had to be revived by a team of doctors while my husband could only watch and pray.
I would give anything if it meant I didn’t have to fight like this anymore. But I find comfort in knowing that I do not fight alone. I believe in a God who is big enough to number the stars in the sky, yet personal enough to breathe in me each morning, and sustain me for every day that is yet to come.
The Cystic Fibrosis Foundation uses the phrase "adding tomorrows every day" as their tagline. I am deeply appreciative of all the work that the CFF does and for the ways that their fundraising efforts are enabling researchers to make "GREAT STRIDES" toward finding a cure for CF. The Foundation has lived up to its motto, and has done much to add many tomorrows for those of us who have CF. Thanks to the advancements in modern medicine and a broader knowledge base about the disease, doctors and healthcare providers are seeing a new generation of CF patients—adults like me.
I consider myself extremely blessed. I have gotten to do things that were once considered an impossibility for people with CF. I am married to a wonderful man, I work a full-time job, I have enough lung power to play the French horn, and best of all, I'm living in an age where others with CF have reached adulthood.
Unfortunately, adult patients like myself, and our doctors alike are stymied and frustrated by the lack of information and understanding about living with CF beyond the pediatric and adolescent years. There is an unmistakable gap that has yet to be filled for us. Tomorrows have been added, but now what?
There is a need for increased awareness of the issues that concern adults with cystic fibrosis. Our quality of life can grow more difficult as each today becomes tomorrow. Today there is a need that must be filled. Today we need the funding for research that will not only add tomorrows every day, but research that will ultimately result in a cure.
Next month I celebrate my 27th birthday. As I said before, the odds that I won’t get to celebrate my 37th birthday are 1 in 2.
I don’t want to die waiting for a cure—I’ve waited long enough.
So at the end of the evening, when you set your clocks forward and think about the hour of sleep that you’re missing, please think of me and remember how much of my time has already been unwillingly relinquished to cystic fibrosis.
