I have to apologize – it has been a little while since my last post. I feel like my life revolves around a handful of rinks here in New York, and I haven’t had the chance to sit down and write as much as I would like. I am going to do my best to post more frequently, hopefully every other week or so.
The past few weeks have actually been quite the ride. I was going to write all about a few trips I have taken and some really great experiences (tune in next week for that one), but I suddenly caught myself mid-blog and decided to go in a different direction for this one.
I guess what I am trying to achieve with this website is to capture the essence of a person with cystic fibrosis, or a person with any chronic illness for that matter. You can be the judge of whether or not I am doing a good job of that.
It hit me today that there is really just one simple fact that sets CF patients a part from the rest of the population – the comparison between the time it takes for something to go bad with the time it takes to answer that problem.
I agree, that can happen with anyone in life, but in the CF world, this problem typically revolves around significant medical issue.
It is alarming how quickly things can take a turn for the worst compared to how long it can take to even attempt to fix the issue. I could very easily be at work or hanging out with my friends or something that I love, and in the blink of an eye I could be right back in a hospital room, laying on a table getting ready to have another PICC line inserted (and kept there for WEEKS at a time). It’s also a very real possibility that I could wake up tomorrow and be spewing blood from my lungs. I would be lying to you if I said that hasn’t happened to me. The problem is, though, is that I know there is no chance that I will wake up tomorrow feeling like I am suddenly cured. In a weird twist of irony that is difficult to articulate, I think that is why we all fight. I think that is why we do have hope. Although I know that I will not wake up tomorrow and magically feel better, I do maintain the thought that one day, it could happen. Maybe that is just me being stubborn, or maybe that is just me being optimistic.
The bottom line, though, is that the fact remains, so how can we change it – not just me, not you, but all of us. How can we create answers as quickly as problems manifest? That is your million-dollar question.
In my mind, that is also the root cause of any concern or frustration that I may have while dealing with cystic fibrosis. Anything that may come up in my life circles back here. Let me give you an example: I still live with my parents. I have come to call them my roommates at this point, and they are actually really great roommates – I get my laundry done, free rent and home cooked meals. Despite all of these benefits, I have considered moving out and being on my own again just like I was during the college days, but I just haven’t been able to. There are times when I feel so great that there is hardly anything holding me back from looking for my own place to live, I guess other than the fact that I have no idea where I would want to live. I mean I have saved up a good amount of money and I definitely consider myself responsible enough for the change in scenery (other than the time I almost burnt down my dorm sophomore year of college while trying to grill a burger on one of those George Forman things). I think I would be crazy not to think about moving out at my age, but without fail each time I do, it seems like just a few days later my health gets turned upside down. I have gotten pretty sick a few times recently and so dependent on aid that living alone or away from home is the furthest thing from my mind and in a way, almost completely terrifying. The road to recovery is very taxing and can take weeks at a time.
Several other stressful thoughts come up just about every day as a result of the time it takes get well again. A few of the things at the top of that list revolve quite a bit around social interaction. Just like moving out into the world is a step towards social freedom, friends, significant others and general relationships or day-to-day interactions are all apart of moving forward in life. This is in no way a cry for help as I have developed techniques, that both succeed and fail, when it comes to dealing with these issues, but there are times when the task of creating a normal life does seem incredibly daunting. There have also been times when I can’t help but feel like I have been left behind when am I totally sick and can’t get out of the house. The problem isn’t the challenge – that is never the problem. Challenges are created so we can take them head on. The problem is that there isn’t a great answer.
Constantly starting from zero creates an enormous amount of stress, and I am not afraid to admit it. Take this: last week I was on an incredible trip with my parents and a buddy of mine to the Super Bowl because I was fit to do so. Now, five or six days later, it is a struggle to get to the rink to coach a game, not skate, but coach. Struggling to stand up straight and bark orders across the ice is probably not a good sign. See, I know for a fact, I am going to be dealing with this issue for a few weeks, but I have made several commitments along the way, some more important than others. The thing that I hate most in life is when I let someone down, and this past weekend, I had to. I told my dad that there was no way I could play in a charity hockey game he was hosting for a young man that suffered a spinal chord injury in a high school hockey game. A few weeks ago, when my dad had asked if I wanted to play and what the cause was, I didn’t think twice, I just said yes. Fast-forward to this past Saturday and I was calling my dad to tell him that I didn’t think I would be able to make it to the rink and skate. He obviously understood and told me not to worry, and had my mom reinforce that point, but I felt awful for not sticking to the plan.
While the cold that started this problem is behind me, the lingering effects within my lungs and, if you must know, my digestive tract J, have left my energy level at essentially nothing. Was the risk of traveling on an airplane (GERM FACTORY) worth it? Yeah it definitely was, I got to see one of the best football games in the history of the sport and have an amazing memory for the rest of my life, but as predicted, I am suffering for the decision to go to Arizona.
Recovery is a nice thought, and I know it will come, but the time it takes to get there and return to normalcy is unnecessarily enormous. I mean, I don’t care what you say, but I know I am going to be missing out on any number of activities or potential blossoming relationships over the next 10 days or so. The one thing as a person with CF that I am missing is a perfect answer to this issue, and believe me, this issue comes way too often.
Now, with all of that being said, if you have been reading this blog long enough, I think you should have a good understanding of my attitude, and really just about any person with CF’s attitude towards life – I, or really we, will not let this challenge get in the way. Guess what, my high school hockey team has a playoff game tonight and I made a commitment to the players, family and school at the beginning of the season to show up regardless of the situation, so I will be there. I will be living my life despite the s*** in my lungs, and everyone else with CF should too.
My reading list since the last post:
Why Football Matters – Mark Edmundson
The Men in Green Faces – Gene Wentz
War – Sebastian Junger
Also, please take the time to check out the “Mikey Strong” website, the beneficiary of the charity hockey game I mentioned above. http://www.mikeystrong23.org/