12th GTBAD Letter

October 22, 2009

 In most ways this year has been fairly ordinary and normal.  In other ways this year has knocked me flat on my bottom.  You might be thinking well what’s new in that?  Let me explain a little bit about my life.

For those who know me intimately, you know that I despise mornings and absolutely despise waking up so much that my family take turns waking me up because it’s an experience that rivals facing the late Mongol ruler Genghis Khan in battle.  Once I have actually woken up enough, I assess the state of my body.  Do I have a headache?  How did I sleep?  Are there anymore than normal complaints?  Most mornings the answer is “yes” to the headache, I slept poorly, and often I have something that is not normal.  EVERY morning I wake up tired.  I’ve learned there are infinite degrees of tiredness, and I’ve felt most of them.  Rarely, do I feel like today is the day I can accomplish what I want.  Some days I get out of bed, which usually helps.  Other days I physically cannot get out of bed.  It’s not worth it.  All of this is only at the very beginning of my day.

1st year for the Colorado Springs HBA team at the Courage Classic

Beyond the normal day, there are what I shall term the occasional health requirements.  Every week I go to the hospital for IV fluids and labs―the IV fluids to help me keep hydrated since I’m on more diuretics than I can keep hydrated with and the labs to help make sure I’m balancing my electrolytes which the diuretics help balance as well.  Always there are doctor visits for those continuing health issues or the new ones that are always cropping up.  Thankfully, hospitalizations are now only very rare occasions like the most recent one in August.  I was hospitalized due to pulmonary issues caused by my desire to at least try to be an average rider at the Courage Classic.  I ended up finding out while in the hospital that I most likely had HAPE, high altitude pulmonary edema.  Despite this I ended up riding 130 of the 157 miles of the ride. 

2009 Courage Classic Crew. From left: Dad (Allyn), me, Denise, and Travis

When people ask me what I do, my automatic answer is that I’m a student, but the fact is that I’m a patient.  My health is always right there at the forefront, and it is what I spend most of my time “doing” ― watching, controlling, bringing back, etc.  My health does not leave a lot of room for other life activities, things that I would much rather do:  being finished with school, having a career, dating, skiing, cycling more, rock climbing, camping, traveling without having to worry about oxygen requirements-medications-medical emergencies, or being completely independent.

Most of the time, I accept life for what it is, and I make the most of it. I have adapted the things I love to suit my physical needs.  I’ve taken it slow in school.  I cycle using a tandem instead of a single.  I live at home because it’s easier physically and mentally to have my parents to share the burden of daily life activities.  In past letters, I’ve said that being glad to be alive means being accepting and aware of the bad parts of life and still choosing to be happy.  This is still true to me.  I’m not saying it’s always the easiest choice, and sometimes it’s okay not to be okay with how life is going.  In the past few months, I have not been the happiest person, nor have I been okay with how my life is turning out.  Just ask my mom who is stuck in the car with me for at least four hours a week driving to the hospital during what over the years has turned into the “dashboard confessional”―our sacred place where anything and everything can be discussed with no recriminations.

Not being in the best place today doesn’t mean tomorrow is going to be as bad.  In fact, it’s looking brighter and better by the day.  And who knows, in the next ten years we might start finding cures, therapies and better medical procedures to help those of us with health problems.  So in the mean time, I’m going to take it day by day.  The mornings will always be ugly thanks to genetics, but the days will gradually stop seeming as long and trying.

Today, I’m more than giddy about life.  I LOVE IT.  I’m appreciative to have it. I feel like celebrating it.  So now it’s time to “get bad”.  You might be asking yourself what I mean by “get bad”, and I assure you, I am not trying to get you to lead a life of criminal activity.  A year or two ago, my sister-in-law Yvonne informed me that this is what my brother Scott calls my Glad to Be Alive Day.  Looking at the abbreviation of the title, it makes sense, GTBAD.  Now when this time of year comes around, I think, “It’s time to get bad.”  So on October 22, if you hear shouts of joys and cheering, it’s just me living it up and “getting bad”.  I sincerely hope you will be too.  It’s one of the things that brings me joy ― knowing there are other people out there who love life with as much passion as I do and who are willing to let the world know.  Go have fun with your friends and family.  Do something that pushes you outside of your comfort zone.  Live a little, and “get bad!”

Happy 12^th Glad to Be Alive Day!!             

And so Get Bad was born in this letter. I hope you join me in getting bad this year. For the original version of this letter, click here.