Some Days You're the Dog...

     ... and some days you're the fire hydrant.  This relatively well known phrase is one of the many that my wife has put her own spin on. Her penchant for creating malapropisms is one of the innumerable things I love about Kayla. One day, she was trying to remember the dog / hydrant phrase, and she said, "Some days you're doing okay, and some days you get pooped on by an animal."  During my first trip to the beach in three years, my wife's phrase applied to me in the most literal sense. 

     The nine other people in my party and I had just gotten settled:  sun screen, towels, sun glasses, and cold beverages.  While my son dug in the sand near the water, I stepped into chilly Lake Michigan and reminded him that this was the first time I'd been able to do this since he was three years old. I didn't go all the way in the water for a variety of reasons, among them the temperature of the lake and my inability to swim. But even if I were an Atlantean, I wouldn't have submerged myself, since my doctors have told me it's still too soon post-transplant to be taking a dip in anything other than filtered and chlorinated pools. No matter- I went to relax on my towel next to where Kayla was sitting, along with my in-laws and nieces. I had been on the beach a grand total of five minutes, and then it happened...

     We are still asking each other, what are the odds?  The vast majority of groups who go to the beach leave without anyone getting pooped on by a seagull. And of the ten people in our party, it had to be me: the immunosuppressed person who has been ordered by his doctors to avoid aviaries and lizard exhibits at zoos.  I never asked why exactly, but I know it involves their droppings, and that was enough for me.  Maybe if I were an ornithophile this limitation would have been upsetting, but "avoid bird poop" seemed pretty easy to accomplish. 

     I sat there frozen after I felt a "plop" on the top-left side of my head. Before I could utter a word, I felt another, this time on my lower back near my hip. It must have been quite an angle of release, since I was sitting down. For a split second I thought (wished) that someone had tossed dirt in the air, but I knew the grim truth. I called out to my family in a panicked tone, "I got pooped on by a bird and I need help because I'm not even supposed to be around birds!"  My good natured mother-in-law asked, "Just now?" 

     "No, four months ago, but I just realized it..." 

     Maybe I become a little mean after I've been defecated on by a seagull. 

     The collective scurry to grab paper towels has peppered with astonishment and laughter. I helplessly sat there while Kayla wiped the poop from that wretched winged freshwater rat off of my head, shoulder, back and hip. She then used all of the hand sanitizer in the little bottle I had brought and rubbed it into my hair and everywhere else that had been hit. Soon enough, the poop was gone, but I knew I wouldn't feel "clean" until after I'd taken a shower. 

     The rest of our time at the beach was without incident, though we remained incredulous at what had taken place and were still laughing about it at various intervals.  Because it is not in my nature to let small things like getting crapped on by a seagull sour my mood for too long, I was the embodiment of a slightly tweaked version of my wife's quote: "Some days you're doing okay despite getting pooped on by an animal."

Can't Thank You Enough

     Yesterday I returned two items to Old Navy. The cashier seemed to be happy about scanning the items and crediting me the money back, even though I'm willing to bet she wasn't exactly having the time of her life. But she put a fun and energetic spin on something as mundane as a refund, without being sarcastic or fake about it. I was about to mention her attitude and thank her by saying something beyond, "Thanks," but didn't, lest I seem weird or something.  (Not that that's bothered me in the past.)  But this little situation reminded me that all too often, the "above and beyond" actions displayed by others go under appreciated.

     When I spoke to the Gift of Life Michigan staff at their meeting yesterday, I concluded by noting that teachers and those who work at GOLM tread the common ground of being chronically under appreciated. Not because we aren't thanked for our efforts, but because no amount of gratitude can match the significance of the work we do. That work is very different, to be sure, but the impact the people in the meeting yesterday have on others-- often during heart-wrenching moments-- cannot be undervalued.

     Though I have not been teaching these past two years, I still feel the sting of news reports and political efforts which undermine the importance of effective educators. Ultimately, we should not base our worth on those things, but rather on the responses of those we serve. We must remind ourselves that when we do hear a heartfelt "Thank you," it is representative of more than just that individual. If we regard these shining beacons of gratitude (such as my brief speech yesterday or the college application letter a student wrote about me) as the norm rather than the exception, the path to satisfaction, to knowing we have done good work in our time here on earth, will be extraordinarily bright. 

     I will close this post by thanking you-- as of yesterday, these blog posts have been viewed over 3,000 times in less than three months of existence. I realize that doesn't translate to 3,000 people, but no matter how many of you are reading this, know that you are providing me with the motivation to work on (and soon (?)) finish my book. And then comes, as my mentor and friend says, the most important job an author has-- rewriting! Don't worry, I'll keep the blog from becoming a writer's workshop once that time comes. 

Using those hand gestures I teach students about in Public Speaking as I talk to the Gift of Life Michigan staff.

What Ifs, Lasts, and Goodbyes (?)

     Thursday was the last day of summer school-- my attempt at "dipping my toe back in the water" to see if I can return to teaching in the fall.  While I had every intention of having a decision made before summer school ended, a few pieces of the puzzle were still missing prior to my last day.  As such, I invited everyone I'm friends with on Facebook who is connected with me through teaching to attend what may have been my last day of teaching.   

A Message from the Past, a Prophecy of the Future

     This video is something I made to officially explain to my students that I would not be returning to teaching in the 2013 school year.  It seemed like all of the kids (and everyone on staff) were hoping, wondering, and worrying, so I made this and had my substitute show it to all of my classes.  I didn't write down any notes, just turned on my webcam and spoke.  

Cars 2

     Taking a child with CF to events which, at first glance, seem totally family friendly, does not always go as planned. My parents learned this when I was about eight years old on the night they took me to see the dirt track races in a town near my home. As we sat there watching cars whiz past, kicking up massive amounts of dust, my parents became worried about the environment they had brought me into. 

     The air quality was the second thing that made them question bringing me to the races that night. The first was the man in front of us, who had been swearing almost constantly since the moment we sat down.  Packed tightly in the stands, we didn't have many options but to stay put, and for a little while, my two brothers and I were exposed to a whole new vocabulary. As the noise of the cars drowned out the sailor-mouthed man, we settled in and enjoyed the roaring vehicles and sliding left turns. It wasn't until we got back to our car and were waiting in the jammed parking lot that my parents had a dual realization: they hadn't done my fourth "pounding" of the day, and I'd just been inhaling dusty air for several hours. They had never failed to do four percussion & postural drainage treatments on me per day, and they weren't about to let that change. We arrived home well after 11 pm, but they still did it, and fell asleep on one of their laps in the final downward slanting position. 

     A few years later, we had another situation where cars and CF clashed. My family went to the Kingston Burnouts, where a small town street is blocked off for one night and motor heads bring their tricked out vehicles to show off their aesthetic appeal and horsepower by spinning their tires and squealing down the road.  We arrived and found a small restaurant to have dinner at before the burnouts began, and our seat by the window let us see when the action started. 

     As soon as we stepped out of the restaurant to take a position to watch from the street, I could tell this was no place for me. After a few cars the air was already becoming saturated with the smell of rubber and the haze of exhaust. But we were trapped. Though we could see our vehicle down the street, it was on the other side and blocked off by barriers-- not to mention the cars flying past the excited onlookers.  We had initially turned to walk up the street to where the cars were starting their runs, but my mom and dad had us turn around to return to the restaurant. With a respite from the foul air, we decided to leave immediately and walk all the way down to beyond where the cars finished their runs so we could cross in a safe place. We walked back up the street to our station wagon and I felt a pang of guilt, being the sole reason why my parents and brothers couldn't stay and enjoy the evening's event. But nobody said a word to make me feel worse, and the "it's no big deal" mentality, the blip of me and my illness taking us off our normal path, was forgiven and forgotten without a word. 

     Situations like this were a hallmark of my childhood, which helped tremendously in making me feel like I was no different than anyone else in my family. It wasn't sad, or frustrating, or horrible that we didn't get to see the Kingston Burnouts, just as it wasn't sad, frustrating, or horrible that I was born with Cystic Fibrosis. It just "was," and life moved on-- as far as I was aware-- without turmoil, handwringing or fear. 

Rope. Swing.

     Though my family has visited my sister-in-law's cottage a few times since I went on the transplant list, our visit this past weekend afforded many opportunities that weren't on the table over the past two summers.  We played two epic volleyball games, with everyone in both families, including my six year old son, enjoying a highlight reel moment or two.  And though I'm not a fan of going fast or of heights, it would have been a crime to pass up a chance at using the rope swing...

I'm King of the World!

In lieu of a movie quote befitting this photo, I just made something up... ;)

In all seriousness, this weekend was another reminder of how lucky I am to be able to do new things, like travel further north than ever before in my life and take a boat ride to see Pictured Rocks. It was an amazing experience that wouldn't have been possible the previous two summers. 

From the Archives: "...The More They Stay the Same"

Same song and dance as yesterday... today's post was originally from the third or fourth day of the blog's existence, so it's probably new to you!  Back to totally new for everyone posts next week...

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I wrote the following in December of 2014, and it was previously published in the April 2015 edition of the University of Michigan CF Newsletter.  I referenced this essay in the speech I gave last Wednesday when I mentioned having already written about the "the rest of the story" regarding my transplant and recovery experience.  If you are looking for extensive details about the transplant experience, this is it.    

From the Archives: Grand Slam

     As I face a hectic week and a half of finishing summer school, I'm re-posting a blog entry from early May, one that only about fifteen of you have read.  I have been added to the CF Blogroll and many more people have started reading the blog over the past month and a half, (thank you!) so this will probably be new to most of you!  I imagine I may need to do this a few more times before summer school ends, but I hope to sprinkle in new posts along the way as well.
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     On Sunday, my son walked around the house holding his baseball mitt.  He climbed on a stool to get mine, which hangs as decoration on the wall in his room, beneath his grandfather's glove.  He quietly searched the house for a suitable ball, finally deciding the one normally used for roller hockey was soft enough to play with.  I did not witness any of this.  All I saw was the culmination: a six year old standing at the back door with his arms full-- "Hey dad, want to go play catch?"

Everything Working in Concert

     My favorite music group is Dave Matthews Band. They are the band I requested to be played as I entered the OR prior to my transplant. I have seen them five times in concert, and starting three years ago, I'd made it my vow to see them every time they rolled through Michigan on their annual summer tour.  However, in 2013, I was still adjusting to being on oxygen, which I either had to carry or drag behind me on its little luggage cart style stand.  I was in the process of getting a scooter when the tickets went on sale, and I decided it was just too much to try to go to a venue where I wasn't even sure about the accommodations they have for disabled people.  I remembered vividly that when I went in 2012, the walk to the entry gate was long, the stairs were extremely steep, and the bathroom was down another huge flight of stairs.  So, after missing the concert in 2013, I was committed to making it work the following summer.

How Could I Forget Green Family Robinson?

     In all the excitement and mishegoss of returning from Disney World and the start of the summer school, I left out one of my favorite moments from our family vacation.  In all of my previous trips to Disney World with my wife and son, there is one thing I skipped each and every time.  There was barely any conversation about it; the large structure loomed, with the promise of twists, turns and stairs.  On the first few trips, I knew I could have made the climb, but it would have required stops and rests, and probably triggered a few productive coughs-- none of which are a pleasant public experience when alone, not to mention in front of one's child.  It was the safe decision, but with all the other fun experiences, it was small potatoes, and a logical choice so I wasn't worn out for the other parts of our journey.

Video of my Speech at CF Family Education Night 2015

     I am very happy to share the video of my speech at the CF Family Education Night.  U of M created a social work focused website with a Cystic Fibrosis subsection, and they have linked the video there.  By going to this link and clicking Part 2, you can see my entire speech, including the question and answer session which followed.  As far as I can tell, the speech will play on mobile devices as well as regular operating systems.  If you already read the speech when I posted it, you will see that I pretty much stuck to the script, with a few notable exceptions.  I am so grateful for having had the chance to speak at this even and for all of the great questions people asked after I spoke.  I also can't thank Dr. Simon enough.  He was my pulmonologist for 14 years prior to my transplant and gave me a better introduction than I could have asked for.  Feel free to let me know your thoughts or ask any additional questions in the comments section, or by contacting me through Gmail.  

Medical Trials Without the Tribulations

     I have been fortunate enough to qualify for a variety of Cystic Fibrosis medical studies over the years.  All of them were done through the University of Michigan, and though not all of them went smoothly, they were a fascinating window into how new medicine is approved and the level of commitment that is needed to make strides in finding new and better ways to treat CF.

Beautiful Explosion of Hope

     On July 2nd, the FDA announced that it had approved Orkambi, the Vertex-made drug that offers an unprecedented treatment option for people with the most common CF mutation (which happens to be the one I have).  This article contains all of the relevant details from the press release.  The words in black and white represent a level of hope for almost one third of Cystic Fibrosis patients that surpasses what many ever dreamed possible.

     Innumerable people whose lives have been touched by this disease view Tuesday's announcement as a long awaited trumpet which will sally forth a new era in CF care.  With the medicine being shipped to pharmacies as I type these words, I can't imagine or express how it would feel to be the parent of a child with CF, for whom this announcement must seem tantamount to a redefined future.  But as always, I am mindful of the other perspective:  the parents of the ten year old whose child has the mutation (double delta F508) this medicine treats, but is two years away from being allowed to take Orkambi, since it is currently only approved for those 12 and older.  Or the parents of the pre-teen who doesn't have the CF mutation treated by this new drug or Kalydeco, which works in the same way and was approved in 2012.  The gaps in who these incredible medicines can benefit within the CF population, along with the efficacy of the drug, are preventing everyone from using the word "cure," but a quick glance at recent posts here at the CF Blogroll demonstrate how positively most people are reacting to last week's wonderful news.  This one in particular captures the sentiment of a person with CF very well...

     But what about someone like me, whose lungs do not have and will never have the genetic flaw of Cystic Fibrosis lungs?  I have no clue.  The day the announcement was made, I was seeing my pulmonologist, blowing my highest FEV1 yet (95% Wo0t wOot!) and totally unaware that the approval was happening that day.  When I'd asked about Orkambi a few weeks ago, I was given a relatively canned answer:  that they don't like to theorize on giving people medicines that aren't approved by the FDA yet.  Which I can understand.  I also realize that the odds are very slim that anyone with transplanted lungs took part in any sort of trial leading up to the approval of Orkambi.  I will inquire next week about what the drug might mean for transplanted CF people such as myself, and happily volunteer to be in any studies, which I've done before and always had a positive experience with. 

     For now, though, the weekend's fireworks were, in the lives of a large number of CFers and their families, as much about the prospect of breaking free from the restrictions imposed by Cystic Fibrosis as they were about America's enduring freedom.  We continue to hope that Orkambi is one step on the road toward every single person with CF celebrating his or her independence from pills, puffers, and pulmonary problems.  

     

Spidey Swings by Camp Michitanki

    The time I spent last Friday at Camp Michitanki, a week long sleep-away camp for kids who have received an organ transplant, was the most enjoyable volunteer experience I have ever been a part of.  Probably because I was dressed as Spider-Man for most of the time.  I'm going to go into a lot more detail than would ever be necessary for the book, but that's okay, because I want to have a record of every amazing moment that I was able to witness and be a part of last week.

A Closer Look in the Magic Mirror

     Going to Disney World (and Land) is unlike any other vacation experience for a variety of reasons.  One of the most visible is that people are encouraged to make a public declaration of their reason for being there.  The parks distribute buttons which indicate what a person is celebrating... first visit, birthday, family reunion, anniversary, or honeymoon.  The last of these is also frequently made apparent by mouse ears or a shirt indicating "bride" and "groom."  All of these proclamations are encouraged by Disney, and if you are celebrating something they don't have a specific button for, their generic one allows guests to write on the button to explain what the special occasion is.  So, my wife, son, and I each made a button that said something about my lung transplant.