Friday, May 26, 2017

CF Awareness Month Day 26 - In Memoriam

For today's post, I thought I'd share a post I wrote back in spring 2015 about the passing of my friend, but never posted.  Even though we weren't particularly close at the time of his passing, he holds a special place in my heart because he was one of my first friends in this life.  His death was a very difficult one for me to process because he was the first person with CF I personally knew to have died from the disease.  Thankfully, two years later, he's still the only friend I've lost to cystic fibrosis, though I have watched from afar online as two other CF warriors documented their fight on social media for years until CF finally claimed their lives, too.  I'm so grateful I've not had to see more friends pass away from this disease, but that doesn't make these passings any easier.

And so, without further ado, my unpublished tribute to James from April 2015.

In Memoriam -

By some miracle, I made it to almost 29 before losing a friend to cystic fibrosis.  James was one of the first friends I ever made in life.  Our moms met at our local CF clinic when we were about 2 and 3 years old, and they became close friends and avid advocates for the CF patients and CF parents at that clinic.  And while our moms met on a regular basis and fought to save the world (or at least to give us a fighting chance at a successful, healthy, normal life), James and I got to play.  We got to be two normal kids. ("Big Bird is your favorite?  Yeah, me too." "You like sliding down stair banisters?  Let's race!" "Oh, you have to lean down on your mom's lap while she beats on your back and chest several times a day?  No biggie - I do, too."  "You have to take little pink pills when you eat?  Cool.  Me too.") I remember on more than one occasion discussing with my mom how I planned to marry James so that we could remind each other to take our enzymes.  Really, it only seemed logical.

That memory makes me chuckle now, but I think beneath its humorous casing is a deeper insight into the bond that forms between people with CF, even if those people are only children.  As an adult, I sometimes struggle to relate to other people my age, because it feels like so much of my life is just so different because of how it is impacted by CF (that's a post for another time, though).  And even back then, within my innocent, limited, child's perspective on the world, I recognized that there was something that separated me from other kids - namely, taking medicine every time I ate.  It was kind of a frustrating chore, sometimes, for a five year old.  But you know who else understood?  James.  Even from a young age, my little mind and heart saw the distinctions that made us separate from others but alike to one another, and a bond was formed.

And I think that is a bond that never really dies.  James and I drifted apart as we got older, as both our lives and our mothers' lives got busier.  Then, of course, eventually came all the strict cross-infection protocols, which meant CF patients really weren't supposed to be anywhere around each other unless absolutely necessary.  This meant that aside from our early childhood friendship, James and I had little-to-no contact during most of elementary, middle, and high school.  Thanks to Facebook, however, we were able to reconnect over the electronic interwebs during college.  At a time before CF blogging had really taken off, and also at a time when I was trying desperately to compartmentalize my CF and keep it contained to a tiny corner of my life (which meant almost never discussing it and certainly not knowing any friends with it!), reconnecting with James on Facebook was fascinating for me - what an encouragement to see this old friend who was also still living and thriving despite cystic fibrosis.  As a senior in college at the time, the role of CF in my life had grown a lot more sinister and complicated from the days when all I had to worry about was taking enzymes when I ate.

But I still was not alone.  James understood.  James was making it in life.  James was defying the statistics.  And therefore, I could, too.

For the next six years, our friendship was limited to occasional Facebook messages and comments.  But then, in the summer of 2014, while I was in the hospital during one of the most frustrating health periods of my life up to that time, I noticed a familiar-looking name on the door of the room next to mine.  After doing an about-face in the hallway, I peeked into the room to see if it was really him.  And sure enough, sitting on the hospital bed, doing his vest like a good little CF patient, was James (looking about 20 years older than the last time I'd seen him...).

During this difficult spell of health, both physically and emotionally, my heart was uplifted to see that I had a friend right next door, fighting the same good fight.  All those tears and frustration, wondering why this disease had to be my burden in life?  James, my CF buddy, understood in a way no one else really could.  Those frustrations I felt when a nurse or RT didn't do their job right in a way that could seriously damage my already fragile health?  James understood.  That determination I felt to go to the hospital gym to exercise every day, even when I really didn't want to and even if it was only walking on the treadmill for 10 minutes at 2 miles an hour because every little bit of strength counts?  James understood.

Looking back, I'm so grateful that God orchestrated that chance for James and I to cross paths and be friends face-to-face again (granted, there were usually masks and a 10-foot infection buffer zone involved, but hey, it still counts).  When, after two and a half weeks, I left the hospital before he did, we made some joke about how it was good to see each other again, and how we should do it again "same time, same place, next year?"  Sadly, even if we wanted to follow through on that slightly macabre joke, we never got the chance.

James passed away on March 20, 2015, due to complications from his cystic fibrosis.  After a dramatic downturn of health in November, he'd fought back from the brink of death several times.  For about two months, he was even wide awake and able to walk, eat, and interact with the world - so much so that most of us following his story were convinced he had made it back and was on the long but sure road to recovery.  It came as a heartbreaking surprise, then, when his health once again deteriorated quickly due to the recurrence of a nasty infection in his already severely damaged lungs. He passed away peacefully and painlessly a few days later.

I am so grateful to have such wonderful support system in my life - my family and my husband, in particular, are the most amazing cheerleaders I could have prayed for.  But there is a special kind of encouragement that comes from friendships with other CF patients who are fighting your same battles with the same fears and same desperate hope that you yourself are fighting with - these friendships form a special kind of bond that is always present, despite the lack of physical proximity or even large gaps of time in communication.

James, I am so grateful for the bond of friendship we shared, both as "first friends" and as fellow CF warriors.  You will be missed.  Breathe easy, brother.

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