Breathe In, Breathe Out

The Hills Are Alive With the Sound of CF May 3, 2012

Screaming and yelling.
Endless phone conversations.
The violin in a closet.
When the Saints Go Marching In” on the piano.
The trash compactor.
Ace of Base’s “I saw the Sign.”  

What do all of these things have in common? They were all familiar sounds of my childhood. Growing up in a family of 7, not to mention almost all over-dramatic females, I grew accustomed to noisiness. When it was quiet, it was weird. It either meant we were all doing homework, or that a fight just ended and no one wanted to break the awkward silence (though that was rare!). As an adult, I gladly admit that I can be loud—you can stop nodding your head in agreement. I do what I have to do to be heard, and I thank my upbringing for that. Having been surrounded by loud noises and voices for all of my life, I guess it just became a part of me, and little did I know this would prepare me for my life with Eamonn.

Now, my home is not full of so many voices, just Eamonn’s and mine, but that does not mean it is not full of many sounds and noises. Living with Eamonn I have gotten accustomed to new sounds—ones that make my skin crawl, ones that calm my nerves, and ones that wake me up during my sleep. These are some of the sounds of Cystic Fibrosis.

The first sound that comes to mind is when Eamonn is doing his physical therapy, twice a day. To describe the sound of the machine will probably do it injustice, but I will try. Imagine what a helicopter would sound like wrapped in a blanket–and it’s sitting on your couch. That is a sound that I fall asleep to at night and that I wake up to in the morning. Not to mention, Eamonn’s nighttime therapy is a good time for us to relax together and catch up on some of our TV shows, which means that the volume is turned to its maximum, disturbing our neighbor. Yes, he has knocked on our door a few times asking us to turn down the volume because he is trying to sleep. The loudness of the machine has also forced me to turn up my volume—it seems that I always have the most important topics to discuss with Eamonn just in time for the start of his therapy. In our old apartment, so as not to bother our random roommates, Eamonn had to do his jack-hammer-sounding therapy in our bedroom. Nowadays, in our current apartment, we are lucky to have a separate space for Eamonn’s loud routines, making it easier for me to, say, fall asleep.

As I mentioned in my very first post, another sound that I have grown fond of is Eamonn’s oxygen concentrator. Quite opposite from that of the therapy machine, this machine has a more calming, soft hissing sound that has actually become a sound of comfort to me. His concentrator is on for almost all of the time that he is home, so it has become the “norm” for us. When I don’t hear this noise the apartment feels strange and lonely.

Imagine waking up one morning, in a foggy, sleepy state-of-mind, to the sound of someone rummaging through your drawers, finding a bag of chips, and tearing them open. I wake up to these sounds most weekday mornings. Eamonn wakes up very early to start his therapy and this means grabbing all of his drugs. His drugs, which come wrapped in foil pouches, sound very hard to tear open. They are kept in our bedroom. Where I sleep.

An obvious part of Eamonn’s CF is his continuous cough. I consider this, often times, to have its perks. For example, when the windows are open in our apartment the sound of his cough echoes through our narrow street so I know when he is home. This is especially convenient when Eamonn is returning from the grocery store because it allows me to meet him downstairs to help him carry the bags. At the expense of sounding crass, I often times, however, can get severely frustrated at his coughing sounds. Most notably when he is getting into bed, cuddling with me while I am usually already sound asleep, and I am awoken by a loud throat clear directly in my ear. And Eamonn’s throat clears are not quiet—they sound like he is trying to push a kiwi out of his lungs. In general Eamonn’s coughing has become another background noise (though I do notice when he is getting sick and coughing more). Even though the coughs tend to interrupt us when we talk, I hardly notice them because they’re just a part of the conversation.

The sounds of CF are a part of my life now, making it hard to imagine my home without them. Even as I sit here, trying to concentrate and focus, I listen to the oxygen concentrator and it brings me peace of mind—it reminds me that Eamonn is only a few steps away, clanging the pots and listening to music, while making me dinner.

Be on the look out for a special post net time!

 

Let’s Get Physical April 18, 2012

This past Monday in Boston was a record-breaking 90 degrees. It was also the 116th Boston Marathon. Over 22,000 insane people, one of which was my crazy and courageous sister, Polly, ran 26.2 miles in the extreme heat. Kudos to her and all of the runners- you’re inspirational.

Exercise and sports have always been a part of my family’s lifestyle—not to be competitive but to stay active. My older sisters were avid dancers for their entire youth (we have the videos to prove it!), while Abby and I ventured out onto the basketball court, thinking that someday we would be starters in the WNBA (needless to say we’ve moved on). Other sports that we all partook in were tennis, field hockey, and swimming. As a kid, I’m not sure that I really appreciated the push I got from my parents to be active, but as an adult I realize the importance of trying to maintain a healthy lifestyle of working out and being fit, even though I’ve been slacking on this lately.

When I started dating Eamonn it was clear to me from the get-go that he too, liked to be active, though his idea of this was a bit different from mine. Eamonn’s preferred physical activities were capoeira, biking, and skateboarding, though I’m not convinced the latter counts as exercise. I had never heard of capoeira until I met Eamonn, so for those of you who are unfamiliar, it is a dance/martial art originated from Afro-Brazilian culture. Simply put, there’s a lot of kicking and head dodging. However, I have to say that I am very impressed with capoeira ever since I saw Eamonn in a performance with his Chicago group—I could never do it myself despite his persistence that I come with him to a class! Biking is his other love. When we lived in Chicago he would always bike the 4 miles to my apartment, giving him the exercise and relaxation he needed, while giving me anxiety for his safety. I do love bike riding, just not so much in busy, city streets. Eamonn thought this was especially hilarious when he witnessed me, for the first time, on a bike in the streets of Chicago (in fairness I was riding his oversized bike making me uncomfortable and wobbly).

One thing was always clear, Eamonn was happy when he was doing capoeira or on his bike. His activities were not just about having to be active to stay healthy, but it was about being happy, doing something that he loved, taking a break from all of his other health-related chores to do something he wanted to be doing. So when Eamonn’s health was declining, one of the hardest things for me to accept was that these activities would be taken away from him. Now that Eamonn is on oxygen all the time, it’s hard for him to take capoeira classes and get on his bike outside. Not only is it harder for him to breathe, but the weight of the backpack that carries the oxygen concentrator makes the exercise that much more strenuous.

For about two years now Eamonn has been forced to get creative with his exercise tactics. He primarily uses his bike inside on a stationary trainer. We also have an Xbox Kinect so that he can play different games, for example boxing, track and field, and my personal favorite, African dance (it is quite a workout). Of course Eamonn makes the best of it, by watching his favorite X Files episodes while on the bike, and challenging me to boxing matches, which I usually win. He also started a very successful after-school capoeira program, keeping him involved with the sport as he helps his students; he has also established a connection with the Boston capoeira group through their music class. Despite Eamonn’s positive attitude, it’s not the same as when he got to be outside, or participate fully in a class. I certainly can tell the difference—exercising has now become another chore for him to fit into his busy schedule to stay healthy. It’s no longer making him happy. It’s no longer something he loves.

So, about a month ago, when spring finally arrived in Boston, I convinced Eamonn to come with me on a walk outside, leaving his indoor activities behind. It took some tough love, but he agreed and we started our way around the Chestnut Hill Reservoir. I could tell that his breathing was becoming increasingly harder, so I did what any good wife would do: I took from him the backpack carrying the oxygen concentrator to relieve him of the extra weight. I played the role of Jillian Michaels, trainer from The Biggest Loser, and pushed Eamonn to keep going, even when I knew that he wanted to stop. Of course, when he needed to pause I let him.

Eamonn made it around the Reservoir and we have gone for a number of outdoor walks since. I know it hasn’t been so easy for him, and it’s still not his bike, but I am incredibly proud of his endurance, determination, and fight. I know that he will eventually be back on his bike and throwing kicks in capoeira class because that is just who Eamonn is.

On Marathon Monday, while we were eating dinner, Eamonn looked at me and said, “Some day I think I’ll do the Boston Marathon.” I believe it.