Wed, 11 February 2015
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/
Category:general -- posted at: 3:18 PM
Wed, 17 December 2014
**Please be advised: do not consider anything in this blog official medical advice. Medical advice can only be given by a certified medical physician. The contributors on this blog may not be held responsible for any damage that may result from using the information in this blog without permission from a medical doctor.
Take it, or leave it, these are my answers to a few of the questions I have gotten since I added the “Ask Gunnar” feature at GunnarsBlog@Esiason.org
Before we get going here, let it be known that this is my first attempt at answering questions in this kind of setting. So, if I suck at it, this will also be my last attempt at it for a while before I can rebuild the courage to try again. It is also VERY important to keep in mind that I am in no way a medical or scientific expert meaning that this cannot be considered medical advice. Unfortunately, I am not a doctor. You can just ask my senior year astronomy professor from BC about my scientific expertise, or I guess, lack there of. Also, my last disclaimer: let’s not forget that I am only 23 years old, and well, to be honest a large portion of my motivation and concern that I have in my life revolves around my ability to pick up chicks at a bar, so with that being said, let’s answer some questions.
Question from a “germaphobe” mom in New Jersey who has an 8 year old with CF:
“[do you have any]advice for parents of younger kids with CF, what would it be? Is there something that your parents did that just really affected you as a kid, that you wish they didn't do? I would say that we hide our anxiety somewhat well from him, but sometimes it's impossible to do. I know he feels different sometimes, but I tell him that "everyone has their own something, and we just have to do what we need to do for now."
I really like what you tell your son, because it’s true, we do all have something, and in your case (and his) that something is CF. He can never forget that. My dad, really both my parents, always made a conscious effort of trying to share the disease with me when I was younger. They wanted to make me feel like I was never alone. Whether that meant sitting and watching cartoons with me while I was doing my treatments or making sure I felt safe in the hospital, they were always with me.
I also think it’s important to make sure CF doesn’t entirely define his life. I largely credit the way I look at life and how well I am doing to my parents. They let me play sports, have sleepovers with my classmates when I was younger and really do anything a normal kid would do. Well, I guess my mom wasn’t too happy about me playing football because she was worried her little baby would get hurt, but I won that battle. On the flip side, though, they also drilled a sense of responsibility into me. When I was younger, I was allowed to do all these great things only after I got all of my treatments done. It was sort of like a task and reward system. My mom always tells the story that if I wasn’t willing to do treatments at a given time, Santa was only a call away or Tigger (yes the cat from Winnie the Pooh) would be very mad at me.
Basically, what I am trying to say is that I don’t think you should restrain your child at all. He needs to do what he likes to do. It will help him grow into a fine young man, someone who lives a normal life despite having CF, at the same time though, there is a very fine balance that you and your husband will need to find for him. How can he maintain his responsibilities? For me, at a young age, it was thinking that CF was like a game – a game that I wanted to win.
As far as your germaphobe fear, I am totally a germaphobe too. Hand sanitizer is my best friend – it should be your friend too.
Here’s a question from Uncle Jonnie:
“…My best friend has two daughters who are afflicted with CF. They are like my daughters and I have referred to them as my nieces since they were toddlers. They have called me "Uncle Johnnie" since then...My question is this, how can I be a better influence on [my teenage “niece”]? How do I convince her that she can have the life of a teenager and still treat her CF?
Ah, teenage years, the glory days. If I could go back, I totally would. I felt like my life in high school was right out of the movie American Pie. I always liked to remind myself that I played quarterback, had long hair, had a hot girlfriend and drove a cool car. I definitely peaked in high school. Take it from me, though, CF patients can 100% have a normal life in high school. It is important for her to know that she can ONLY have a normal life if she takes care of herself, though. I definitely struggled with that at times, but I think I quickly learned that I wasn’t going to be living a normal life if I was constantly missing football practice because I was sick. I think you, as an uncle, need to impress upon her that she can totally live a normal life if she wants to earn it. She can have a million friends and deal with all the teenage drama that girls deal with (I have a sister, I totally get it). Unfortunately CF is a burden, but her loved ones around her are there to help. No one is going to be a perfect patient, believe me, I am certainly not a perfect patient, but I understand the difference between being healthy and being sick. Now with that being said, no teenage wants to actively seek help for anything, or at least, I never wanted to actively seek help for anything when I was 16. I think you should encourage her to accept her disease, maybe even tell her reach out to other people with CF. I had (and still do to an extent) a relationship with a few other patients back in my high school years through Facebook. They told me all about their good and bad days. That definitely inspired me to focus on my good days, but learn from the bad. I think repetitive positive influence, maybe even some war stories from your high school days and a family viewing of American Pie might help. Well, maybe not the American Pie thing, but the other two for sure. Let her know a normal life is there, it’s just waiting for her to seize it.
This question comes from Mike in Newton, Mass:
“Gunnar, great stuff you’ve got going here, but I’ve got a question. If you had to choose hockey or football to be a pro in, which would you choose and why?”
Well, this is different, but thanks for the question. I would choose hockey. Now, I know you were a goalie back in the day, Mike, but I have to tell you goal scorers do get all the girls, or, well, that’s what I am led to believe after watching Youngblood. There’s nothing like shooting and scoring top shelf where mama keeps the thin mints. Bar-down, hands up, celly into the night. It would be pretty cool to play for the Rangers, lift the Stanley Cup and be loved by New York City. The Bruins suck, by the way.
The last question comes from a 19 year-old college student with CF:
“…You see, my freshman year of college, last year, I got sick, like really sick. I stopped taking care of myself because I was just so sick of doing the same thing everyday and I guess in some way it was my teenage rebellion coming to surface… The first month of school I was hospitalized in RI for double pneumonia, blood infections, lung infection, and even the commom cold. You name it, I probably had it. I was even on oxygen. Gross…Apparently I was gray! Anyways, It was just the sickest year of my life. But that wasn't even the kick in the pants I needed to get back on track with my treatments. So, I guess what I’m asking is, how do you do it? Treatments day in and day out? I've tried so much and so hard to get a routine but it's like I have this mental block that prevents me from taking care of myself.”
Believe me, you are not alone in dealing with the tough transition from high school to college inside the CF world. I was right there with you. Towards the end of my freshman year, I actually had to cut out a few weeks early and get myself back on the saddle. Here’s the deal, though, you have to ask yourself: do you want to enjoy college? If the answer is yes, you MUST own your disease (see what I did there, I used the title of the blog in one of the posts). There are a few ways to help you do that.
The best piece of advice that I ever got before going away to college actually came from another CF patient who had just graduated college. She told me that NO MATTER WHAT I had to complete my daily treatments, regardless of whatever I would be doing. If I wanted to enjoy college, I had to do my treatments. She made me promise her I would listen. I didn’t really think anything of it in the moment, but now I totally get it. She told me that it was the first thing I needed to do when I woke up, whether it was 6:00am or 2:00pm, because let’s be honest, not all college kids are waking up before noon. She didn’t stop there, though, she went on to say that I 100% need to do my night time session as well. I agree with her. I made a point of doing my treatments before I ever went out with my friends at night or before I went to bed. I knew that if I was going to be out late, there was no chance I would do them after getting back to the dorm. My friends understood that too. They were just as helpful. They would make me feel comfortable spending a little extra time in the room before we went out. There was never a rush, because frankly, they never wanted me to rush through them. Now with that being said, if I felt like I needed to throw the vest on for an extra 20 minutes after getting home from a bar at 2:00am, then I did the vest for an extra 20 minutes. Honestly, there’s so much free time in college, there’s no reason to not do your treatments. For us, we would kill time by playing Halo or NHL 13 on Xbox. You can only play so many rounds of Halo before it gets boring. Oddly enough, treatments helped fill some of the time.
Here’s my other little trick. Set attainable goals for yourself. Whether those goals have to do with your PFT’s or day-to-day life. If you set goals that you can achieve, you will feel an overwhelming sense of pride. For me, every night before I go to bed regardless of what I did that day or how I am feeling, I bang out 100 pushups, 200 sit-ups and 200 flutter kicks. I know that’s not a lot, but it’s still something, and when I finish it I still feel like I accomplished something. It gets me into a better mindset, and it sounds like that’s what you need. You just need to get your mind focused on the task at hand. I wish I was back doin
Category:general -- posted at: 3:30 PM
Mon, 8 December 2014
I always get asked how I am able to stay so optimistic all the time. The truth of the matter is that there are some tough days. There are some really, really tough days – days when I look at myself in the mirror and I’m just like, “here we go again.” The kind of days when nothing is easy at all, not even the most mundane tasks, like getting from bed, down the stairs to the couch. Those days are the worst. But for every bad day that I go through, there are hundreds of good days.
This past month has really been, I don’t know, not the best, for lack of a better phrase, within the CF world – at least my CF world. Through whatever medium of social media, I feel like I have seen a picture of a different person each day tied up to an oxygen tank. For some reason, I can’t break away from the feeling that an oxygen tank is an ugly symbol of the ever-present CF threat. I have been there before and I hate whenever I am oxygen dependent. It crushes me.
This past month, I was also the sickest I’ve been in awhile, a really long while. I’m better now, but this was an ugly taste of it – I probably could have used a little oxygen in hindsight.
Beyond that, though, two CF patients I had a connection with passed away. I can’t say that I knew either of them very well, but I did know them – one through a fantasy football league, Chris, and the other through a BEF event, Ellie. I knew about their fights, just like they knew about mine. It is nearly impossible to overlook whenever something like that happens. The worst part, for me, was feeling totally helpless – unable to do anything about it.
As much as I hate being labeled a “cystic,” “fibro” or “patient,” there is a very special bond that we all share. We all know what it’s like to wake up in the morning looking for a deep breath of air that isn’t coming. Really, we all know what it’s like to have spent countless hours sitting on the couch doing treatments day after day looking out the window waiting for the day to come when we wont have to do our treatments anymore. The bond becomes a little tighter when CF patients fall to the disease. I can only hope it’s not so hard for them breathe anymore. In fact, I know it’s not so hard for them to breathe anymore.
So, how do I stay so positive when I go through stretches of time like this? There definitely are times when I can act like CF isn’t a part of me at all, but months like this past month remind me that CF is very real. I would be naïve to think that nothing bad could ever happen to me. The hard truth is that cystic fibrosis is a killer. It’s nasty and it doesn’t care who or what it takes.
I owe my resiliency to CF patients that came and went before me, and fought just as hard as I do, or really, any of us do. I know what I am capable of and how to push myself. My positivity stems directly from my ability to dream and constantly want more. Although cystic fibrosis may be considered terminal, I am able to overlook that fact. To me, CF is something that can be fought.
These days, there is nothing I hate more than having to miss a day of work. I like to think of myself as an active member of society, so when I am able to accomplish something for both, myself and the people around me, I am wrapped in a sense of joy. Although I may be sick, I am still productive. My optimism comes from the fact that I know I am able to do whatever I want to do – that very statement is true for you too, whoever you are reading this. If you put your mind to it, you are capable of achieving greatness.
I do whatever I can to keep myself healthy, so when the day comes that I won’t have to do treatments anymore, I’ll be able to take a deep breathe and enjoy what I have created for myself. Really, maybe more importantly, I’ll be able to throw back a couple Budweisers without having to deal with a 4-day hangover. I cannot wait for that day.
The picture at the top is from the album Reach for the Sun by The Dangerous Summer. I actually only like one song on the entire album (“The Permanent Rain” thank you Pandora radio), but for some reason I think I like the idea of reaching for the sun.
I have also found that reading definitely helps me get lost in a different world. I’m not talking about the crappy books I was assigned when I was in school about God knows what, rather I’m talking about whatever I want to read, freely. Here’s my reading list over the past six weeks:
The Only Thing Worth Dying For – Eric Blehm
Killing Patton – Bill O’Reilly and Martin Dugard
Catcher in the Rye – J.D. Salinger
Outlaw Platoon – Sean Parnell
No Hero: The Evolution of a Navy SEAL – Mark Owen
Remember, if you want to see me write about anything specifically or want me to answer your questions in my next blog, you can email me at GunnarsBlog@esiason.org
Category:general -- posted at: 8:16 PM
Fri, 21 November 2014
Once college graduation rolled around, I knew it was time to find a job. I had this huge plan of going to law school and becoming a big time lawyer and stuff, but my health sort of got in the way. I drove myself into the ground towards the end of undergrad, as many college kids do.
So, I had to improvise. I took a look at some of my skills and decided to put them to use.
In this podcast you’ll see how I have learned to become an active member of the workforce despite having cystic fibrosis.
This video podcast/vodcast was made possible through an unrestricted education grant from Chiesi.
Direct download: Gunnar_Esiason_-_Life_after_College_with_Cystic_Fibrosis.mp4
Category:general -- posted at: 3:17 PM
Wed, 29 October 2014
CF is often called an invisible disease. It’s invisible in the sense that you can’t quite see what’s going on underneath my skin. If you saw me walking down the street, your first thought might be, “wow that guy looks like a stud!” not, “wow that guy looks horribly ill.” While I may consider myself a stud (hopefully chicks around the world do too), I probably do fit the “horribly ill” description to an extent. It is certainly not bad that CF is an invisible disease, but it can be misrepresented as a result, so here is my list of 7 things that go on inside a CF patient. I chose 7 because 7 is my favorite number, and the CF gene is located on the 7th chromosome, duh. Science.
1. I am not a sick kid
Yes, I do realize that having the cough of a 60-year-old smoker, taking dozens of pills daily, doing hours of breathing treatments and occasionally coughing up blood doesn’t quite define the word healthy, but it works for me. As far as I am concerned, I can really do whatever the hell I want. While I do have some limitations, they are not necessarily set in stone. My body does handle the rigors of everyday life pretty well. Thank you science. Seriously, though, if CF kicks my ass one day, I damn well expect myself to get out of bed the next morning and carry on with my day. If there is anything CF has taught me, it is that hard work pays off. I can immediately see results when I am an active go-getter or a lazy bum. It’s up to me to decide who I want to be.
2. If I look exhausted, I probably am
Sleep can be very hard to come by. Have you ever had a cold or what we call “a cough,” and haven’t been able to fall asleep? I know Drew Brees has because he does those Nyquil commercials all the time. Imagine that feeling quite a few times throughout the year, but for days or weeks on end. Sometimes, that could be a regular feeling for me or anyone with CF. I’ll be the first to tell you, a persistent cough is a pain in the ass. Further, though, when I am sick, I’m usually up late into the night doing an IV infusion, then getting up real early to follow up with another IV infusion. It’s funny, whenever I’m sick, I’m always told to get as much sleep as I can. Hell, I’m always told to make time for rest even if I’m not sick. Not really the easiest thing in the whole world. The fact of the matter is that a CF patient is constantly fighting infection, and it weighs heavily on us. By the time it’s 5 or 6 in the afternoon, I’m usually exhausted looking for my second wind.
3. Stress is unavoidable
CF is as much of a mind game as it is a physical challenge. I find myself constantly playing out scenarios in my head. Just like anyone with or without CF, my decisions can have unintended consequences. Unfortunately, I found that out the hard way in college. When I was a freshman, or I guess, maybe a sophomore too, being up three or four nights in a row until the crack of dawn wasn’t the worst thing in the world, but as I got older after years of beating myself into the ground, that changed. Consecutive nights of that kind of behavior now, would lead to weeks of being sick. Not fun. That epitomizes some of the decisions I have to make, though. I am 23 years old; I am supposed to get myself into all kinds of messes, but I have to know what that can do to me. I find myself getting pulled in a million different directions from time to time. Should I really be getting up at 5:30 in the morning to go to the rink tomorrow? It’s my best friend’s birthday tonight; can I stay out until the sun comes up? I didn’t get home from my football game until 1:30 last night and didn’t finish my treatments until an hour and a half later, should I really be going out and doing much today? Here’s the deal, I am very much the kind of person that loves to do anything whenever I have the opportunity to do so, but I deal with an immense amount of frustration and stress when it comes to not doing something that I want to do. I know that I am not letting down the people around me in my life when I have to say no, but it feels like I am when I have to shut it down.
4. Sometimes pain is a reality
I know it’s a cliché, but pain really is weakness leaving the body. There are times when I don’t have any clue what is hurting, but whatever it is, it hurts. The pin pricks, stitches, and needle sticks are one thing, but chest pain and general aches are in a whole different category. Sometimes there’s no better way to deal with pain than to just ignore it. If I allow myself to be consumed by one thing, no good can come of it. I’ll tell you what; I will not allow myself to be consumed by pain of all things. It comes and goes, from time to time, but in the grand scheme of things, it does do a hell of a job of toughening people up. For me, or anyone with CF, it’s just a part of life.
5. Being admitted to the hospital isn't all it's cracked up to be
There’s this show on Fox called Red Band Society, and to be quite frank, it’s horrible. If you actually enjoy watching it, I seriously question what you consider entertaining. I really think it would be a small miracle if the show gets renewed for a second season. For those of you who haven’t watched it, or don’t know what it is (sadly I can’t include myself in that group), it is a show about a bunch of teenagers that live (?) in a hospital. Yeah, I don’t really get it either. Anyways, each kid has a different issue ranging from cancer all the way to cystic fibrosis. Normally I would say any press is good press when it comes to awareness around the disease, but not in this case. In the first episode, my man with CF is seen in a closet smoking the weed. Here’s the honest truth – I would be six-feet-under in about five seconds if I ever did that, so I’m going to go out on a limb and say that this show sends the wrong message about CF patients, but I digress. What really gets me, though, when it comes to this show is how
6. No, I do not include myself in the Ebola panic in New York City
While I realize that Ebola is an extremely dangerous virus and it is not something to overlook, I do not wear a surgical mask on the subway here in New York City just because there is an Ebola “scare” here in the city. Someone looked me straight in the eye the other day and said, “don’t you think you’re overreacting a bit, buddy?” I laughed and kept walking. The truth of the matter is that I am far more likely to be in direct contact with someone that has the flu, than I am to have even the remotest of ties to someone that has been exposed to the Ebola virus. I can confidently say that I am not going to get Ebola, and neither are you. The flu, however, can be horrible for a CF patient, even life changing, so to be completely honest, I don’t really care what people think of me when they see me walking through Penn Station with a surgical mask on. Here’s the deal, I have things to do, people to see and job commitments to live up to, so I don’t have time to come down with the flu or any other virus for that matter. I’ll wear my surgical mask whenever I want. It usually gets me my own seat on the train, too, so that’s a major positive, I think. No one wants to sit with a sick kid, duh.
7. I'm actually just a regular guy
It’s not like I am a part of an exclusive club or cult or something. I just have a genetic disease – that’s about it. I say that with some sarcasm, but really it’s not taboo or anything to talk about cystic fibrosis with me. Many CF patients are open about their disease, obviously I am too, but I very frequently sense hesitation when the subject is approached. There’s nothing wrong with it. Beyond CF, though, I have my hopes, dreams, passions and desires just like everyone else. I also realize that sounded very mushy and weird, so for the record, I do go out drinking and go to football games and put steaks on the grill and stuff like that with my buddies too. In all seriousness, for the time being CF may be with me, but it is not the whole story.
While it may seem like some of these things underneath the skin of CF may suck, and they do, I have made it this far in life and managed to be pretty happy. For me, dealing with cystic fibrosis is all about balancing things out and outweighing the negative with the positive. Whether we like it or not, life is full of challenges – It’s just a matter of whether or not we choose to overcome them.
Category:general -- posted at: 7:02 PM
Mon, 20 October 2014
Jerry Cahill, my CF hero, and I sat down and had a talk about how he has gotten so far in life. He is quite the inspiration. He’s now 58 years old and living post-double-lung-transplant. Some of us around the foundation call him “old man.” Here’s the deal, though, having CF at 58 years old is quite the accomplishment, so he takes it like a compliment, or so I hope.
His life very well could be the basis of a novel, so I hoped to dig a little bit up and see what he had to say.
In the podcast, Jerry explains why exercise has been such an important part of his life both before and after transplant. He thinks exercise is “good for the mind, body and spirit.”
He also shares with me why his life’s mantra is “You Cannot Fail.”
This “Own it” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.
Thu, 2 October 2014
It was brought to my attention earlier this week that people with cystic fibrosis, specifically young adults, have a tough time making new friends and maintaining friendships that they already have. I am not sure how I feel about that idea as a whole. With that being said, I guess I can understand it. There certainly are times when the disease is consuming. All I am thinking about is making it from one day to the next, but to be completely honest, I have always had a friend, coach or family member in my ear getting my mind off the sh*tty side of CF. Sure, there have been times when I have had to say no to a wild party night, or THE BEST NIGHT EVER, but, quite frankly, THE BEST NIGHT EVER seems to happen pretty frequently, so I don’t really mind if I miss one every once in a while.
I can’t make it sound like I don’t get frustrated when I am sick, because I do deal with a ton of frustration. It’s just one of those things that I have to overcome in my life. I just have to accept that I am not going to have to typical New York City young professional “work hard, play hard” lifestyle.
Truly, though, if I see the inside of a club, maybe once or twice a year, at ABSOLUTE most, I am a happy person. If I don’t see the inside of a club at all in the next 12 months, then that’s totally fine too. That is just not my idea of fun.
All joking aside, I have been very fortunate that my group of friends understand that about me. They know my days of staying out until the sun comes up are probably over for the most part. I had a good run in college, but, unfortunately, for me, I have always had to be a little ahead of the curve when it comes to growing up. I mean, at five years old, I had to recognize the difference between an antibiotic and an Advil. Now, if I am at a New York City bar that is open until 4:30am, I know I have to be out of there by about 1:30 if I don’t want to be paying for it for the next month.
My friends know that, they don’t hold it against me and they make it work for me. Sometimes they give up a little to get a little, and when I say get a little, I mean a lot, because they freaking get to hang out with me. WHO WOULD NOT WANT TO HANG OUT WITH ME??
Just kidding, but not really.
In all seriousness, though, that’s never been an issue with my friends. The hard truth of the matter is that if I tried to live a “work hard, play hard” lifestyle like my friends can, I would be driving myself six feet under pretty quickly, and my friends realize that. I think that might be something that scares some CF patients. There is this idea that they have to keep up, or they will be left behind. I am here to say that is not the case. There are times when saying no is okay, and maybe I am not around as much as some of my friends would like (Lynda, that’s you J), but they 100% understand why.
So, if you are a CF patient reading this, I don’t want to tell you how to live your life, because I am not all-knowing, but listen to me here, make that connection with your friends, they will support you, that’s why they are your friends.
I, obviously, can only speak from my experiences, but I can easily say that I could not have grown up with a better group of friends at every point in my life so far. From kindergarten and on, my classmates all knew about my CF. Any new friend that I make quickly learns why I cough so much and take an endless amount of pills each day.
My buddy David from high school went on to be one of my college roommates for all four years at BC, and he essentially got a taste of living and learning CF with me. In the ten years I have known him, he’s been there for quite a few of the good times and the bad. From the time I was coughing up blood on the football field sophomore year in high school to the freshman year college dorm room when we disastrously tried to shotgun cheap beers, we have gone through a lot of firsts together.
For many of the bad times, David was the first responder as well. I have to say that probably wasn’t what he signed on for when we thought being roommates might be fun. With that being said, he certainly hasn’t lost it yet when I have been down for the count with pneumonia or something. He usually figures out a way to bring me right back up.
All my friends have always wanted to be apart of my fight against the disease. A lot of them look forward to our BEF events and fundraisers every year. Dozens of my friends from grade school, high school and college have run for Team Boomer in the Boston, New York City and Chicago marathons as well as numerous half-marathons, or triathlons across the country. It’s hard to credit all of my friends and how much they have done on the fundraising front, but two of my best friends, Vince and Brian come to mind right away. Vince, another of my college roommates, raised over $15,000 when he ran the Boston Marathon our sophomore year at BC. Brian, one of my closest friends, and maybe even one of my first friends since age 2 or 3, raised an incredible $30,774 when he ran the New York City marathon last year. They, along with every single friend that I have, take everything I deal with in stride and try their best to make it a little easier for me every day.
Maybe most importantly, though, I’ve always had friends that are ready to step up and jump in front of a questionable situation that might be in front of me. The perfect examples are all of my college roommates. They knew my health always came first for me during our time at BC. If we were at a house party, they always knew I had to have my own cup regardless of how hard it was to get one. Because, as we know, cooties come from sharing cups at college parties, and that is a major concern for CF patients. As a freshman dude in college, there is probably no harder feat to achieve than getting your own red Solo Cup at an upperclassman’s party, but somehow my friends always managed to make it happen for me.
There were times when an idiot or two would try to light up a cigarette (or a drug that’s illegal in 48 states) indoors. Without fail we would be out the door and headed down the street to a new party to escape the smoke. If my friends and I were ever out, and there was even an ounce of danger directed at my lung health, I very rarely ever had to say something – the situation would just get handled.
I can remember back to this one time, junior year (at least I think it was junior year, it’s all kind of like a blur), and I was in line for a bar with my two other roommates, Carmen and Flynn. It was almost like someone flipped a switch, because the next thing we knew the students that were around us in line all suddenly started smoking. It was gross, but apparently that was the cool thing to do. We were very much stuck in the line, and I was totally willing to suck it up for a few minutes, but Carmen and Flynn went to work putting out the cigarettes one by one until we got into the bar. I didn’t get one dirty look from anyone around us, so I don’t even know what those two guys were telling people. It worked, though.
I realize that isn’t the craziest of stories, but things like that did not go unnoticed.
I never once felt like I was alone in college. My friends always had my back in college and still do. There’s always a watchful eye over me, and I think my parents and sister are grateful for that, I know I am. It’s not like I go around always making terrible decisions, because that’s not the case, but on the off chance that I do, someone is always there to say, “Gunnar, is that the best idea?” That extends far beyond my health too. There’s always someone that wants to get on the ice, go to a movie or grab a drink at a bar with me. Just like there’s always someone stopping me from pushing myself a little too far or downloading Tinder on my phone.
I don’t think I would ever trade my life for a different one. As far as I am concerned, the friendships that I have made along the way have really shaped who I am, and I really do like who I am.
I know all of my friends respect everything that I have to go through and know exactly how far I can take things. Obviously there are times when the rules can be broken and my limits can be pushed, like my 21st birthday, but I do know for a fact that a lot of them try to make things easier for me. Not that any of my friends would ever admit to it, but it is pretty easy to tell that’s what’s going on – because I can definitely tell CF isn’t as much of a struggle when some of my buddies are around. All I can say is thank you.
****If you are looking for something to read about friendship, teamwork and toughness, check out the book Fearless by Eric Blehm. It is the story of fallen Navy SEAL Adam Brown’s life. It is probably one of the most inspirational and motivational works I have ever read. One of my fellow football coaches recommended to me, and I am glad he did.****
Category:general -- posted at: 6:27 PM
Fri, 12 September 2014
Yesterday was the thirteenth anniversary of the September 11th terrorist attacks. In 2001, and for several years prior, the Boomer Esiason Foundation headquarters was located on the 101st floor of World Trade Center One inside of donated office space from the financial firm Cantor Fitzgerald. Thankfully, none of the BEF employees were in the office that day. The picture above features a Cincinnati Bengals football helmet that was one of many fresh out of the box on September 10th,2001. It survived the collapse of the towers and was found during the rescue efforts in the days that followed.
I was young, but I vividly remember the days before the attack when I was up on the 101st floor looking out over New York City through WTC1’s enormous windows. It was truly one of the most breathtaking views imaginable.
Every year around this time, I try to think about what is important in my life, and if I’m actually living my life to the fullest, because, quite frankly, there is a lot of s*** going on in the world. There’s also quite a bit going on in my life. Sometimes it isn’t the easiest thing in the whole world to keep my head straight on my shoulders, but I do my best.
There’s never an easy day when it comes to living with CF, but what I am talking about is much bigger than that. The seemingly endless of list of BS that goes on day in and day out is hard to articulate, but it all compounds into one word, stress. A five-minute conversation about politics is enough to wind someone up. Add that to being stuck in traffic, missing a commuter train, dealing with an illness, fighting with a friend, feeling lonely, being cheated on, losing a bet or anything that could bother any one of us. What does that all add up to? Well for one, a headache, but any combination of those things is nightmarish. More times than not, the things we worry about drive us to the brink of going crazy.
I am here to tell you that you can find peace. We can all find peace through the things that are important to us.
Anything that is truly important in my life can take me away from everything else that goes on in the world. The kind of things that have led to some of the best memories I have.
Obviously, the first thing that comes to mind is family time. I have already written about the roles my sister and parents play in my life. Very simply put (and if you don’t want to read those posts), I think there is nothing more important in my life than my family. I think that is only scratching the surface, though. It goes without saying that spending time with my family, friends and my (nonexistent) girlfriend are cherished moments, but we all need something else – something that drives us individually. Or, really, what makes Gunnar get out of bed and go every morning? What do I look forward to? What do I strive for?
I am all about fun. No, that doesn’t mean I love going out to the club “with my boyssss.” Fun, for me, is when I am happy – a few things come to mind. There’s nothing quite like playing pond hockey in the middle of the winter, Friday night high school football or talking about nothing for hours on end with someone.
Pond hockey is one of the most liberating experiences there is. The pond does not have boundaries. The air is crystal clear and there is a rock hard ice surface that allows the puck to slide forever. Only the sunlight dictates how long the day on the pond lasts. It is freedom in every sense of the word for a hockey player.
High school football is probably the purest form of football that exists. I love coaching these games because it is amazing to see the amount of pride all of the high school kids have just to put on their school’s jersey and play underneath the lights. It is a genuine celebration of hope, athleticism and community. Winning makes the night even better.
Finally, human interaction is not obsolete. Texting is one thing, but actually talking to someone and hearing emotion rather than trying to decipher emojis is a whole different ballgame. Last night, a college buddy of mine, Max, called me asking about a fantasy football trade. Before we knew it, it was an hour later and we were talking about our junior year at BC. It’s easy to get lost when you’re actually talking to someone.
Getting lost is a good thing. It separates us from the rest of the world. It allows us to think independently and confidently about anything we want, rather than getting caught up in the inevitable stress the world throws at us. It’s okay to slow down.
Find peace in your life.
When it comes down to it, we are only going to get so many opportunities to do what we love – the kind of moments that draw personal happiness, and that is important. It is always a sad time of the year right around now, but I try to spin it as positively as I can. If being so close to the September 11th tragedy, perhaps one of the most devastating events that’s ever happened, has taught me anything, it is to live, because everything and anything can change in the blink of an eye.
Find out what is important for you. Find out what gives you happiness and draw every little last inch out of it until your heart is full.
***I want to dedicate this post to Timmy O’Brien and Michael Seaman – lost on September 11th, 2001, but always with us.
Category:general -- posted at: 7:16 PM
Mon, 18 August 2014
The truth of the matter is that I just don’t have time to be sick, or I guess sicker than normal. Between working at the BEF, coaching, trying to have a social life and a million other things I have going on day to day, there’s just no left over time to deal with being sick. Unfortunately, as with any chronic illness, there’s really no choice in the matter.
Things were going pretty good for a while, but my CF popped up the other day, probably just to remind me that it was there. I woke up with a pretty nasty cough this past weekend. Who knows where it came from – my guess is the bacteria in my lungs, but what do I know.
For me, it’s pretty easy to tell when my health is about to go bad. First, the texture of my lovely green mucus changes. Normally, it’s thin, the way snot is probably supposed to taste and feel. When I’m not feeling so hot, like this past week, my mucus feels like yogurt. It tastes like **** too. Next, I might see a little blood mixed in with my mucus. That tastes pretty terrible also. Think of having a brick of iron in your mouth, but red, and not solid. Thankfully that doesn’t always happen, and didn’t happen during this flare up, but it’s definitely a sign things are going downhill pretty quickly. This time around, though, fatigue set in pretty quickly followed by my loss of appetite. Those are the, “time to get help” signs. I can deal with the mucus tasting bad and the inevitable increase in my awesome sounding cough, but feeling tired 24/7 is no fun. That’s where I draw the line.
Of course this all happened a week before high school football preseason starts up here in New York. So, it was decision-making time. Either try and fight it the old-fashioned way, you know, by letting my body take care of the job or call in the heavy hitter, the PICC line. As Darwin has taught us all (or so he thinks), only the fittest are going to survive, so modern science takes over where my body leaves off just about every time something like this happens.
The need for a PICC this time around probably wasn’t completely dire, but it made sense. In the CF world, especially at my age, we go for tune ups, or clean outs. Think of it like changing a car’s oil – a car can only go so far before getting serviced. I can only go so far before needing a little boost.
I went in Monday for a PICC placement, which is where I got the great selfie at the top of the post. It takes about 20 minutes to get the whole thing done and stitched into my skin. I realize I’ve now said “PICC” three times without actually explaining it, so for those who don’t know what a PICC line is; it’s essentially a longer, more permanent IV. Like I said, I get mine stitched in place. In first or second grade, I nearly had one fall out of my arm during a course of antibiotics, so I have decided to play it on the safer side ever since that little issue. This time around, the line is 40 cm long. It looks like a little worm when it gets pulled out. Or, I guess a long worm, because what worm is 40 cm long?
Here’s a fun fact about me: I used to do this weird thing when I was younger where I would keep all of my pulled PICC lines. I don’t really have much more to say about that, other than I used to have a little plastic bag full of PICC lines until my mom threw them out a few years ago. It was totally weird and gross. I guess I sort of felt like it was the equivalent of someone keeping his or her tonsils in a jar after getting them removed or something. Looking back, I now realize that I wasn’t even in the same ballpark.
Either way, the line is in now, and I went home to start antibiotics right after it was placed. I know some CF patients find it easier to stay in the hospital for a course of IVs, but that’s just not my style. I have always done home IV courses, with very few exceptions, and even then, to this point, I have only ever been hospitalized for a few nights at a time. Knock on wood. As far as I am concerned, I have a life to live, even if I am feeling sick. If I am feeling well enough to stand on my own two feet and walk around without any help, then I can do whatever the hell I want to do. I have a busy few weeks coming up, so I don’t have time to be sitting in a hospital bed. I have a few remaining responsibilities at the foundation this summer, football starts on Sunday night and then Hockey in two weeks. I don’t have a problem coaching, or even skating with a PICC line in. When it comes down to it, it’s just another little tube in my body. I already have one in my stomach, so it isn’t anything new. In fact, it looks like I’m connected to the Matrix or something when I am sleeping. I get totally wrapped up in all the tubes.
My prescribed antibiotics obviously change from course to course, but I typically spend around six hours a day hooked up to IV meds or fluids. That’s on top of the three hours I already spend doing my normal treatments, so it’s very much a full day process. I end up having to stay up late every night to finish a med and then get up early in the morning to keep the process on a timed schedule. Sleep is a little difficult to come by, but whatever. My mom doesn’t love how I sometimes handle it because I don’t sleep a whole lot, but if I feel like I really need some help with doing early morning or late night infusions, I’ll ask for it. With that being said, I have gotten to the point where I don’t really like asking for help with the PICC. I feel a little more independent when the PICC line works on my schedule. Come to think of it, my dad has accidentally pulled the cap off of it a few times, so he has lost his IV privileges all together. It’s okay, though, I probably wouldn’t be able to see the cap either if I was old and my eyes were starting to go.
In all fairness, my mom is the one who taught me how to keep a tight schedule, so I think I’ve really learned from the best. We have it down to a science. As soon as I start one infusion, everything, from the flushes, to the alcohol pads, to the next med, gets prepared for the subsequent infusion. Preparation makes everything easier in the long run.
I realize I am talking about this like it’s nothing, because for me, someone who has had like a million PICC lines, it really is nothing, but truly, the entire process must be sterile and very controlled. Whenever I am infusing, I move through the progressions very slowly and methodically. The end of the PICC line itself is right next to my heart, so God forbid the line got infected, or something went wrong during an infusion, disaster could strike in a heart beat (see what I did there?). Safety is my primary concern when I deal with the PICC, so I take nothing for granted. I have never once felt like I have put myself into any sort of danger. My golden rule is that if there is any question as to what I am doing, I close the line, wash my hands and start over. My time is valuable, but going into cardiac arrest isn’t on my list of things to do, so I can spare a few extra minutes here or there.
Dealing with a PICC line is very easy, though. In college, I used to infuse in the middle of class. The home healthcare service that covers me has these great little self-pump IV bags that are super tiny, so I could be sitting right next to you, infusing, and you would never know. I’m sure there were a few people that may have gotten a look at me during school and thought I was some sort of druggie, but whatever, I could hardly careless. I was getting the good stuff. I needed it to survive. People can think whatever the hell they want – it doesn’t bother me, it never has. I have even brought a PICC line with me on college spring break one year. That’s a story for another time, but I did it, and everything worked out totally fine.
In all seriousness though, next week during football preseason, I’ll bring three medication doses with me to the high school each day and complete them in between practices, during film sessions or in offense meetings. All of my players know what’s going on, there’s no secret. One of my keys to success is everyone being on the same page. I’ve got nothing to hide from my players, so I just go about my business teaching offensive schemes or breaking down films while I’m infusing antibiotics. It’s really just another day at the office. During the season, my biggest concern is how to exploit different defenses on a week-to-week basis. I can’t be thinking about what I may or may not look like while I am infusing an IV antibiotic in public.
The world does not stop when I get a PICC line. The antibiotics may eat up some of my time, but life is going to continue with or without me. I would rather be a part of it than sit on the sidelines watching. I have nine days left until I have complete freedom from the line, but until then I think I am still pretty independent.
Category:general -- posted at: 2:11 PM
Mon, 28 July 2014
My sister’s birthday is coming up, so I thought now would be a better time than any to write about her.
Sydney, my only sibling, is a year younger than me, just about to turn 22. She does not have CF, nor is she a carrier of the recessive gene. Thank God. She just graduated from Boston College and the world is definitely her oyster. Like we always say, it’s Sydney’s world, we’re just living in it.
Sydney is easily my best friend. We’ve definitely had our moments, like the time in high school when I picked her up and threw her across the room after she spent a half hour straight of annoying me, but I think we’re past all of that now. We love spending time together, especially when it’s just us. We don’t really get those opportunities as often now as we did before we both graduated college, but we definitely value every moment together.
As tough as things have sometimes been for me, they haven’t been much easier for her. I think it’s fair to say I probably received more attention from our parents when we were growing up for two reasons: first, my health has always been a priority for the whole family, and second, the more important reason, I was the perfect child, duh.
I don’t think she realizes it, but she has never once complained about anything, including her role in our family structure.
I think she may play arguably the most important part in my support system as a CF patient. My parents are obviously an enormous part of that, but as Sydney and I once decided, it is we two versus the world. Since we both went to the same college and our parents weren’t there with us, she would always go out of her way to make sure I was set with anything I needed. Whether it was a rack of Gatorade during a bout with the stomach flu, someone to talk to after a break up or someone to go shopping with for a formal dance (because I have no idea what to get if I am on my own in that department), Syd always answered the call of duty, and still does as a matter of fact. If I was ever sick, she was the one driving me into downtown Boston to see the doctor, or in some cases carrying all 6’3 of me into the Emergency Room.
My G-Tube once fell out, which, evidently, happens from time to time, and driving a car while my stomach was spilling out of my body wasn’t really an option, so at the crack of dawn on a Friday morning (not the easiest of times for any college student), Sydney had to come over to my room, help me plug the hole in my abdomen and then drive me down to Boston Children’s Hospital so I could get the tube replaced. I’m not sure if you have ever been in a position to smell (or plug, for that matter) the inside of a stomach, but it’s pretty gross. It doesn’t hurt at all, but it’s horrifyingly disgusting. Actually, it’s like dealing with vomit, so enjoy that picture in your head. Anyways, Sydney handled that one like a superstar.
During our time at BC, Syd had to drive us down to the hospital a few times, but those certainly aren’t the only memories we share. We did our best, or I guess I should say, she did her best to make sure I could take her out to dinner at least once a month. She’ll say it was great bonding time. I’ll say it was great bonding time too, up until the point when I had to play the part of the ATM. The first thing out of her mouth was always, “How have you been feeling?” and the last thing out of her mouth was always, “So, you’re paying right?” Even after college, I always have to pay. Always. She knows that first question, though, has been an easier question to ask when it’s just us without anyone else around. During my senior year of college, I actually found out that question, most of the time, was really coming from my mom, but Syd has always been genuinely concerned about me too, so I can’t take all of the credit away from her. Here’s the thing, Sydney and my roommates were all like little spies for my mom while we were all away at school and mom was home. My mom always felt like I would never give her an honest answer about my health because I never wanted to go home and get checked out by the doctor. Sydney, on the other hand, would always get an honest answer from me.
Aside from asking how I was feeling, Syd would always make sure I was doing okay socially. She is like a self-proclaimed social coordinator for me sometimes. She has always made sure that I have something to do, so that I’m not sitting on my ass. She loves to get out and have fun, so she wants to see me doing the same thing. It’s really a bonus for us when we end up at the same place with all of our friends. As a result of this, though, she has sort of asserted herself as the person who gets the last word on any girl I even think about taking out on a date or something. That’s a good and bad thing. It’s good in the sense that she can keep my standards up, as well as making sure I’m not hanging out with some idiot, but it’s a bad thing too because mega-bitch Sydney can come out and scare away any potential girlfriend candidate. Mega-bitch Sydney very rarely comes out, but it has happened before…. The one that got away…. Sorry Syd.
In all seriousness, Sydney has been a real champ. She deals with a crazy amount of stress and frustration because of me. It’s never fun to see a sibling laying in a hospital bed or coming out of anesthesia. Unfortunately for Sydney, she has seen that sight far too many times. She tries to have fun with it, though. If I am coming out of anesthesia, she knows I am like an open book. She always loves to ask me tough personal questions, just so she can get any sort of upper hand on me. I have to say that because of her little fun that she likes to have, Sydney (and consequently my parents) now knows all of my darkest secrets. It’s really great.
I guess it’s hard to know how Sydney actually feels about all of this, but whether she likes it or not, big brother is always watching. I think I have a pretty good sense of what’s going on in her life and I am very grateful that she doesn’t have to deal with cystic fibrosis, physically, like I do. She has everything I would ever want in life without CF, good looks, athleticism, energy and a very bright future amongst other things, and I have no problem with any of that. Syd has her life, and I have mine, we both succeed with the cards we were dealt. She unconditionally gives me the only thing I would ever want from her, and that is the best friend I could ever ask for. Without Syd, God knows I would be totally lost when it comes to anything outside of school, work or medicine. She shows me how to live a normal life, or…well… not so normal since she still thinks she’s a little princess, but I love her anyway.
Category:general -- posted at: 2:54 PM