In 2012 one of my to-do’s was to start this blog. On January 4, 2012 I did just that. I thank everyone for being loyal readers, Facebook posters, and for your many words of encouragement and support. Beginning this online journal may not seem like a big deal for most, but sharing my very personal and intimate experiences and thoughts has, at many times, made me very vulnerable. This blog has removed some barriers that I had started to build, and the more I am willing to share the more CF loses its power and strength over me.
With the New Year and all the reflecting on 2012 and onward, I have of course thought a lot about my blog-not so much about the words but the messages that I am trying to convey to you. My intention of writing this for the world to see was to share insight into living with/being married to someone with a chronic disease. In doing that, I was also able to express myself in ways that I was otherwise not comfortable with. Some topics have been more serious than others; I know I’ve made some of you cry, which I never intend to do, but I also hope I have made you laugh. Most of all, I hope that I have provided you with understanding and new perspective on life’s surprises and the challenges it throws at you. And I hope that each of you knows how your support and love help Eamonn and me with each obstacle we face, big and small.
Over the past couple of weeks, I spent a lot of time rereading each of my posts. I am definitely my toughest critic. In looking back at my messages I realized something—I need to listen to myself more. It’s easy for me to write and tell you that you should not take each day for granted, that life is too short, and to appreciate each moment, but what about the hard part—to actually live by that advice. Though this is awkward, I want to publicly apologize to my readers for telling but not always doing. I wholeheartedly believe and stand by each of my posts but I now am challenging myself to do as I say—live and value each day because the “future is unwritten.”
The past week I have been thinking of quitting my blog. I know, I’m so dramatic! On top of feeling overwhelmed by school and work, I felt hypocritical as I was reading everything I have written. But, I have a lot more to say and share with whoever is willing to listen. All that I ask is that you challenge me just as I have you. If you keep on reading then I promise to keep on listening to and reflecting on my own words.
Onward and Upward January 16, 2013
Fitting Into Your Genes December 19, 2012
I grew up in a large family—I am the fourth of five girls (and don’t have any pity for my dad- he wouldn’t have changed a thing!). The seven of us, including my parents, have now become 20 when counting spouses, soon-to-be spouses, nieces, and nephews, with one more on the way. So it’s no surprise that as a kid I always wanted and assumed I would have a large family—I wanted 4 kids, avoiding anyone having to be a middle child, 3 girls and 1 boy. It did not matter in what order they came, but it was most important that they were all healthy.
I’m now 28 and married, with a very different family plan in mind. First, it’s important to say, primarily to my mom and mother-in-law, that Eamonn and I are not having children any time soon. Don’t get any ideas! But what I do want to share with all of you is an experience that I just recently went through, and that Eamonn and I will continue to think about as we decide when or if we choose to start a family.
As a woman, I have assumed that I will one day have my own children, experiencing the joys of pregnancy and becoming a mother. Since high school, before Angelina Jolie made it trendy, I also wanted to adopt children from abroad. After my trip to an orphanage in South Africa, that has since been questioned, but Eamonn and I continue to discuss domestic adoption. When I started learning about cystic fibrosis, having children was not on my mind—at all. At that point I was dating Eamonn, not thinking about marriage. As our relationship grew and I realized the probability that it wasn’t going to end, I started to really think about what CF meant for me, long term. I quickly came to understand the impact that it would have on us having children, which was far and away the topic that I have most grappled with since knowing Eamonn has CF.
What I most appreciated is how open and honest Eamonn and I were with each other as we began these mature conversations, which I never expected to have, nor think about until I was ready. For reasons that I am not going to explain I learned early that when/if we decided to have kids, it would not happen in a traditional manner. But what I could not control was the likelihood of having a biological child who has CF or carries the gene.
We all learn in freshman year biology about recessive and dominant genes. Actually, CF is a common example used by teachers/professors when reviewing this topic. Knowing that Eamonn has CF we are obviously aware that he has two recessive genes. To ensure that our children would not have CF I, then, cannot be a carrier. If I were a carrier, then our biological children would have a 50% chance of being born with the disease. For a long time this was hard for me to truly comprehend. I did not want to even be thinking about children let alone the concerns of their genetic make-up; I did not want to be having these conversations; I did not want to think about potential future decisions or choices Eamonn and I would have to make regarding having children.
Being that this was out of my hands, I could not allow myself to focus on it so much. I also didn’t want so much of my attention and energy revolved around our future, occupying time that we could be concentrating on the present. So I chose to put these matters to the side, knowing that someday, when I was more prepared to tackle them, we’d resume the discussions.
After Eamonn and I got married I realized that I wanted to know sooner rather than later if I was a CF carrier. More than I wanted to admit, I think not knowing was harder, feeling the burden of so many “what ifs…”. I eventually decided that I was ready to get genetically tested for CF mutations, along with other genetic conditions. However, it took me a long time to make the phone call to schedule the appointment with the genetic counselor. I think subconsciously while I no longer wanted to carry the burdens of not knowing, I was not prepared for what I did not want to hear.
I finally made the call and booked an appointment at the genetic clinic of Children’s Hospital, where Eamonn is a patient. Two weeks later Eamonn and I were meeting with the counselor. I thought the appointment would be relatively easy—I knew what I wanted to accomplish, it was clear as to why we were there, and I assumed that the actual blood draw would be the hardest part. Oh, how I was wrong. She asked so many questions, trying to understand our family’s backgrounds and explaining to us our options for testing, of which there were many. And though I was nervous from the get-go, learning that there was a 1 in 25 chance that I would be a carrier put a pit in my stomach (I thought it was far less likely). As the counselor explained everything to Eamonn and me, I fought back tears. Here I am, a happy 28-year-old woman married to the best person in the world, not yet ready to be a mom, but desperately wanting only the best for my children.
Two weeks after the appointment I had a missed call from an unknown number. I listened to the voicemail, not expecting the results so soon, shaking as I realized whom it was on the other end. We had decided that she could tell me the results in a voicemail so as to avoid phone tag. When I heard her say, “I have good news” I somewhat stopped listening to take a long deep breath. I know this might sound dramatic, but in the weeks waiting for the results, I tried to prepare myself for negative news—that I was a CF carrier, which meant there would be a 50% chance that each of our biological kids would then have the disease. I knew going into this experience that no matter the outcome Eamonn and I would deal with it together, but I simply did not want another hurdle to leap over.
Eamonn and I still have a lot to consider once we decide that we are ready to start a family. We have come to some resolutions—we do not plan for 4 children, it does not matter if we have boys or girls, domestic adoption is an option—but some questions and decisions we continue to ponder. Because I wish so badly that I could stop CF in its tracks, it is hard for me to know that our biological children will, no matter what, be carriers of this disease. But we are overwhelmingly thankful that we can feel more secure in having biological children who will hopefully grow up healthy (and happy). This experience has taught me, more than anything, to never take anything for granted. No one can assume their plans will turn out the way they expected—but appreciate what is given to you, and it might turn out even better than what you had in mind! My family, no matter the size, and no matter what imperfections it has, will be my world.
Jack Be Limbo Jack Be Quick November 13, 2012
When I was about 12 years old, give or take, I won the limbo contest at our Worcester Wahoo swim team end-of-season party. At almost all of the Bar- and Bat- Mitzvahs I went to when I was thirteen I was a finalist for the limbo, with the exception of my own. Not cool, Mr. DJ, not cool. Yes, 15 years later and I am still bitter. To be fair, I always had the upper hand because I was short, and incredibly flexible. Not anymore (well, I’m still short!). These days, however, I’d have no chance at a limbo contest. My glory days are certainly behind me. But, it feels at times like I am in my own limbo contest, with Eamonn right beside me.
Eamonn has now been listed for a lung transplant for just under 16 months. His health is stable, he’s gaining weight, and he generally feels good. 16 months ago, we both would have told you that by now Eamonn would have a new set of lungs, and would be on the road to recovery; but with the timing of his new drug, Kalydeco, he has been able to hold off surgery. With all that said, though, Eamonn’s name remains on the transplant list because once on it, there is no coming off of it.
So what does all this mean for us? I want to make myself very clear by saying that I am in no way complaining that Eamonn has not yet had a transplant. A transplant is a last resort, and it is ideal to put it off as long as possible until absolutely needed. It’s a great thing that at each 4-month appointment with his transplant team, he has not gotten higher on the list. It’s a great thing that he is staying healthy.
However, being listed with no answers in sight means that whether we like it or not, we are constantly in the unknown–what Eamonn and I refer to as being in transplant limbo. We are stuck in the in-between place of Eamonn being healthy and feeling good, while knowing that a transplant could be a phone call away, never knowing where you stand on the list, but wanting to live life the way we want to live it.
For the most part, Eamonn and I have not allowed his name on the list to stop us from doing what we want to do—specifically in the case of traveling. In the beginning we were not traveling anywhere more than a 4-hour drive away (those on any transplant list have similar rules) but as time passes we have begun to steer away from this rule, obviously making sure to notify doctors when we do take trips. But traveling is only the beginning. Because there are so many unanswered questions, one of our major concerns is family planning. Though we are nowhere near ready to start having children, we have a lot to consider once we do begin those real conversations. And never knowing when Eamonn might need a transplant is somewhat daunting. If he has not had a transplant when we start wanting a family, do we take the risk of moving forward still not knowing? Do we even want to bring children into that kind of life, or have them watch their dad as he struggles to get healthy? Or do we make our own decisions and not allow CF to get in our way?
As Eamonn’s wife, since the day that he was listed or even earlier, I have been absolutely dreading his transplant day to come. Sometimes I imagine the moment he gets called and what it will be like as I wait for him during surgery, but quickly try to stop my mind from wandering. There is just no preparing for your husband to have to get a lung transplant. So now almost 16 months of being in this limbo, and I have to admit that as the time passes, that day seems more and more unreal and harder and harder to come to terms with. It’s begun to feel like a distant reality, one that I can start to ignore and put behind us. Then I remember, this is not necessarily such a distant reality—Eamonn is on a transplant list, his name is not coming off of it, and someday he will get that phone call.
Eamonn does not keep many lists, but he does have one. He has been keeping a list of the activities he wants to do post-transplant, ones that he cannot do now because they are too physical for someone on 24/7 oxygen. Surfing, salsa dance lessons, blowing a shofar, to name a few activities on the list, but every day it keeps on growing. As much as I do not want his transplant to happen until needed, being in this limbo means waiting for Eamonn to get to live his life to his absolute fullest potential. Being in limbo means holding off on doing things he loves to do. I’d be lying if I said that was not terribly frustrating to watch him as he waits on the sidelines. I want him to get to do everything he wants to do.
Every 4-month appointment with the transplant team is a reminder—that though his health is stable it remains out of our control. It’s a reminder that there is so much we do not know and will not get answers for. It’s a reminder that we are waiting. While I am not as physically flexible as I was at 13 years old, I am learning that this new limbo requires a flexible approach to make it through life’s uncertainties.
A Day in The Life of Eamonn October 28, 2012
Recently, deciding to be wild and crazy on a Friday night, Eamonn and I watched the documentary, “Life In A Day.” This film explores people’s lives from all over the world on July 24, 2010. As a viewer, it opens us up to a world we are mostly unaware of, making us realize that each of our own lives are only a small part of a significantly larger whole.
This got me thinking–I have been sharing stories of what it is like to live/be married to someone with cystic fibrosis, but most of you really do not understand the life of a CF patient. So, Eamonn and I decided to document his life in a day. Lucky for you, it’s not his whole day, only the CF-related aspects of it.
This film, to the best that he could, shows how much time Eamonn spends taking care of his health in one day. He takes us with him as he takes care of himself.
I want to thank Eamonn for volunteering to document himself, and truly letting everyone into his life.
The Tyranny of the Tube October 8, 2012
Lately, Eamonn and I have been discussing a lot about adopting a dog. We would love a fury friend to join our family and household, follow us around the apartment, cuddle as we watch TV, and keep me company when Eamonn isn’t home, specifically when he’s in the hospital. In fact, a few months ago, while searching the internet, we found our dream dog, Mr. Bean. He was a dachshund-beagle mix and stole our hearts in one single photo. We visited that picture often and then one day Mr. Bean was no longer on the website. We can only assume that he found a loving, caring family that took him in, and that another dog just like him will someday, when we’re ready, come our way.
Though we do not yet have a dog, we do have something constantly following us around, actually it prefers to follow Eamonn—his oxygen tube. No it’s not fury and cuddly, but it insists on shadowing him everywhere he goes in our home. The tube that Eamonn uses around our apartment is just under 30 feet long. It extends from our doorway into our bedroom, allowing for him to move around easily no matter what he is doing. Since Eamonn is on oxygen all of the time now, having a long tube is quite convenient and its efficiency helps to make him feel like it is not as much of a hassle to be connected to something at all times.
If you have ever been lucky enough to visit our home, you probably noticed the tube, but for me it is just a part of our living. Yes, it follows Eamonn around, but it often feels like it is nagging me as well. In fact, I might argue that it becomes more of a nuisance for me because as it follows behind Eamonn, it’s not usually in his way. Whereas for me, a simple trip to the kitchen from say, the bedroom, is actually an obstacle course. The tube is always there, and depending on where Eamonn is, it is obstructing my route, trying to trip me up. My favorite is when Eamonn is picking out clothes from the closet, the farthest point from the door in our bedroom. The tube really needs to extend itself so often times it rests over the bed, creating a short tight rope. It is not uncommon for me to trip over this, especially when I have just woken up and am trying to get my bearings. A nice morning trip on my way to take a shower is just what I need to start the day!
It’s also very common to find a lone shoe somewhere in the foyer of our apartment, or perhaps right outside the bathroom. For a while, I could not understand why this kept happening. Usually it was one of Eamonn’s slippers, so I assumed he was just being weird, but then I witnessed it—it was the tube. When Eamonn walks around, he doesn’t notice that the tube grabs objects along the way, and as shoes are on the floor they fall victim to getting dragged around.
Sometimes, I try to use the tube to my advantage. If Eamonn and I discussing something, or when we’re arguing, and he walks away, if I feel we are not yet finished, I know how to stop him in his tracks. I just step on the tube so he can’t keep walking away. I know it sounds mean, but it works! And truthfully, it always makes us laugh which is the best way to end a silly marital conflict.
Though I don’t always love the tube, it is just a part of our home and lives. I can easily get irritated having to constantly avoid it and walk around it, but then again, I can always easily locate Eamonn! And though we do not yet have a fury friend who will fetch us our slippers, we can depend on our tube to fetch us a random shoe.
Shana Tova! September 16, 2012
When I was younger, for every New Year’s I committed to the same resolution—I wanted to be as cool as my sisters. I leave it up to you to decide if I accomplished this, but please keep your opinions to yourselves. I don’t want my sisters to be insulted! Nowadays, my resolutions have matured a bit, and I strive for different things, continuing to learn from my sisters, determined to be as great of a role model for them as they have been for me.
As I hope you all know, the Jewish New Year is upon us. Many of us will be spending time in services, singing prayers that we don’t always understand, seeing old friends we only see this time of year, or trying to keep our eyes open as we listen to longer-than-normal sermons. Many of us are also taking this time to reflect—on the year we are leaving in our past and the year to which we are looking forward. We are also reminded that none of us know what the coming year holds and that life is not to be taken for granted.
I know that I have not been around for too long and I have a lot to figure out about life—but as an almost-28-year-old I have been faced already with many challenges and lessons. It’s ironic how the things that try to keep you from living your life fully only make you want it more. CF has given me a gift. I am always reminded of how precious our lives are and how I cannot take one moment for granted. I know that tomorrow is not promised to any of us, so today I should make the best of what I have. I know to tell and show Eamonn how much I love him, even when I can’t stand to be around him (oh please, we all know it happens)! I know to make sure that our families know how much their support means to us—without them I honestly don’t know what I would do. I know to laugh often. I know to keep things in perspective, however challenging this is for me. Most of all, I know to share my love—as often as I can I try to tell those closest to me how much they mean to me, whether in words or action because as Eamonn loves to quote, “the future is unwritten.”
Cystic Fibrosis has taught me many new life lessons, good and bad. Far more than anything, though, being married to someone with this disease has given me appreciation and perspective on how I choose to live my life every day. Eamonn and I joke often about how lucky we are—that we have a constant reminder of just how vulnerable we all are. Eamonn has taught me to not focus on the negative, whether big or small, but to accept the cards we are dealt and make the most of our hand.
You don’t have to listen to this 27-year-old know-it-all, but just consider that none of us knows what tomorrow will bring. We all know that, but easily forget that, so sometimes a reminder can go a long way! Appreciate today and every moment you have with your loved ones. I certainly have to work on this as well, so for this New Year I am promising to be better and love more. I’ll also be working on making sure I am as cool as my sisters!
I hope you all have a very happy and healthy New Year, filled with love.
We all have our bad days… September 6, 2012
When I worked in retail, just a few years ago, my biggest take-away was improving my customer service skills. As a sales associate, I always had to bring a positive attitude to the floor with a big smile to last at least an eight hour shift. That was a piece of cake for me—I am always in a chipper mood, without any concerns in the world, and all I want to do is smile all the time. Yeah, right. Even if I was in a good mood all of the time (I try to be most of the time!), by the end of a long shift of catering to many customers with various needs, I was exhausted and sick of looking at the same articles of clothing and saying how great (or bad) they looked on the customers. But I could never actually appear that way. I could never let my true self out on the floor while selling clothes to strangers. Nobody was to ever know if/when I was in bad spirits. So now, knowing the importance and value of great customer service in any sales position, I am shocked when I encounter a sales representative who is visibly in the worst mood ever.
I love Starbucks—and usually I love the service at any given Starbucks, of which there are a lot! However, every so often I give my order to a very cranky worker behind the counter. Now I know that it is not easy waking up at 5am, or perhaps earlier, to prepare thousands of cups of coffee for complete strangers, but how is it that my particular coffee order has gotten you in such a bad mood? Well, when that happens, as much as I do not like rude people, or those who take their bad days out on me, I remind myself that it is not me that this person is upset with. I just so happen to want a coffee during their bad mood.
But what if it is more than just a temporary bad mood or cranky attitude?
Every one of us carries around baggage from day-to-day. We all have stresses of some sort, we all have experienced life’s ups and downs in different capacities. And we all deal with that baggage in different ways. Some people will talk to anyone, even a customer ordering coffee. Some become distant and appear stand-offish, which can often-times translate into rudeness, especially if you are the person behind the counter and can’t muster a smile for your customers. It’s up to you how you cope with stress and how you want the world to see you. It’s up to you to decide when you’re ready to share your baggage with those around you, and when.
I will never forget the moment when Eamonn told me he had cystic fibrosis. I remember it like it was yesterday. I don’t remember it because he was telling me about the disease, but because he was opening up to me. He was sharing his baggage with me. He was waiting for the right time and moment, when he knew he could trust me, to share this large part of himself. Eamonn was not, and is not, the type of person who walks around like CF is destroying his life. He is not the type of person that shares his life’s challenges with just anyone, or even indicates that he is having a bad day on his bad days. So I was quite taken aback at the news because there was no indication of this from what I knew about him, but I was also comforted that he felt ready to share that part of his life with me.
Ever since that moment I have completely altered the way I look at others—the driver of the car that cut me off, the waiter/waitress that took my order as if I had just asked for freshly caught giant-squid, the cashier at the grocery store who rolled his/her eyes because I asked for paper bags when he/she assumed I wanted plastic, or the woman on the train who wacked me with her purse and didn’t say sorry. Everyone has his/her secrets. Everyone is keeping something from the public. We don’t put everything out there for everyone to see because that would be weird and uncomfortable. But when do we start sharing? When do we start letting people in to truly see and understand what makes us “us”?
It has taken me a long time to figure out these questions for myself. Before Eamonn started to get really sick, it was rare for me to tell anyone that he had CF. Why should I? Why did it matter? In fact, it took a bit of time for me to tell my family members, with whom I am incredibly close. But, as soon as his health started to decline it was not as easy to bottle it in. For one thing, learning how to become a care-taker was very new to me, and still sometimes is, so I had a lot of emotions that I did not know how to deal with, and often denied. The days that he was admitted into the hospital, or when he had important doctor’s appointments, I felt overwhelmed with more unfamiliar emotions, which meant that involuntarily, and even subconsciously, my mood would drastically change. For a time, I grew more quiet, kept more to myself, and wasn’t sharing what was really on my mind. My coworkers in particular, as I am surrounded by them so often, could tell that something was different in my persona, but I wasn’t opening up, so I became more difficult to approach on my bad days, which was not me. Finally, I shared what was going on with my closest friends at work and it felt like a weight had been lifted. I told my boss because I couldn’t keep it in anymore, and I didn’t feel like always smiling when I was feeling nervous and anxious a lot of the time. My purpose in opening up to those who know me well is not to have a pity party. I actually hate pity and for me, that was the hardest part about telling people about Eamonn—I didn’t want those, “oh, wow, that must be tough” comments, or looks as if you told someone that Bill Cosby died. I just wanted to be honest about what was going on in my life. I wanted those close to me to understand me—to understand why I didn’t always want to laugh at every single little joke.
I am still very guarded at times, as I think I should and deserve to be in this situation. I have always been a great communicator—I think it is essential to any healthy relationship—but Eamonn’s health is not everyone’s business, nor does everyone want to hear about it. I still deal with the challenges and the emotions on my own time and in the way I feel fit, but knowing that I have a support system of family, friends, and coworkers who understand some of my baggage is comforting. It’s nice to know that if I’m having a particularly bad day that some people will understand why everyone else in the world is driving me crazy!
We all have our own struggles. Our own daily challenges that, for the most part, we can deal with in private, but that sometimes get the best of us when we’re out running errands, or serving coffee to customers. We may try the best we can to put a smile on our face, despite having a bad day, but sometimes that can get exhausting and you just want to be yourself, even amongst strangers. So next time your ordering coffee and you get treated as if you’re Tiger Wood’s mistress, just remember that he/she has a story behind that bad mood. It might be a little thing, but it might be a big thing. Everyone has a story that they’re only sharing with those closest to them, but which may result in emotions that get inadvertently taken out on others around them. You don’t know what anyone is going through at a particular moment, or on a particular day, so try to give him or her the benefit of the doubt and remember that you’ve done the same. It’s not an excuse, but it is human nature. So the next time a cashier gives you an eye-roll, try to offer a smile in return.
The Honeymoon is Never Over August 21, 2012
As I write this I am relaxing on the beach in Maine with Eamonn, as the last day of what I am still referring to as our honeymoon dwindles down. I am desperately trying to ignore the looming reality of tomorrow’s 6:30am wake up call, which I think everyone can agree is the most difficult part of a vacation (by the time I am posting this I have survived the wake-up call). On our drive up to Maine, Eamonn and I were sharing the mutual feeling of how our time in Brazil allowed us to press the pause button of our every day lives—stop thinking about the big and trivial concerns and enjoy two full weeks of experiencing a new culture, drinking beers on the beach surrounded by men and women in tiny bathing suits, with just the company of each other. We had an incredible vacation and it truly did live up to all of our expectations. And while we were able to leave our every day lives at home, we are never able to leave cystic fibrosis behind—the thing about having a chronic disease is that if follows you wherever you go.
Traveling with Eamonn was amazing. I cannot say that after two solid weeks of being side-by-side at almost every moment, that I love him even more than I did because I don’t know that that is possible (stop your oohing and awing, or eye rolls). But my trust, comfort, confidence, and appreciation have escalated more than my words can describe. With my lack of ability to speak even one sentence in Portuguese, I trusted Eamonn to speak for me—on the street, in restaurants and of course while shopping! I was comforted in knowing how much he planned ahead, preparing for anything that might happen.
Eamonn and I knew, and were ecstatic, that in visiting Brazil we would experience many “firsts.” What we were unaware of was that our visit would also seem to be a “first” for many Brazilians. As described in an earlier post, Eamonn’s 24/7 oxygen in-take invites many looks and stares. It has taken some getting used to, but as Eamonn says, “if you got it, flaunt it!” So upon our arrival in Brazil I was not surprised at the initial stares and looks of pure confusion. I embraced it and laughed it off. But that was only in the Sao Paulo airport. It did not take long, once we arrived in Rio de Janeiro and started walking around, to realize that as we walked down the street counting all of the females in thong bikinis, growing accustomed to that aspect of Brazilian culture, that they were all looking at Eamonn. Not just looking but keeping their eyes on Eamonn as we continued to walk by. I could feel the stares. I could sense the bewilderment. As the days continued and we visited the sites, explored the beaches, shopped in the markets, and moved from city to city, the looks were all consistent. Eamonn’s oxygen machine that he rolls in a small bag made him a spectacle, a site to see for many Brazilians. After a number of days, as a naturally defensive person, my frustration began to boil. I know in my heart that the stares were not malicious or even on purpose—they were looks of unfamiliarity—but it doesn’t make it more comfortable to feel like your husband is on display everywhere he goes. During our second week on the trip, while in Salvador, we went to a folkloric ballet which the New York Times has described as the best in the world. We sat through a 45-minute show full of riveting dance and capoeira, with sounds of incredible music that gives Brazil its unique and colorful culture. The show left me with my mouth wide-open in awe and wanting more! When we left the theater we were welcomed onto the street by fellow theater-goers who quickly turned their attention to Eamonn, the one-man show with tubes in his nostrils! There was only one thing we could do—we both started laughing. I looked at Eamonn with a profound realization and said, “I guess you’re the real show here!” As we were seeing so many amazing things there, Brazilians were also seeing something new, different and fascinating. So you can keep on looking, just don’t be embarrassed when you trip on the street because you aren’t paying attention to where you’re walking!
Eamonn’s oxygen not only caused endless stares, but it also caused flight delays. Well, our flight delays. Flying for us is more of a production than for most people and now we know what to expect when we travel. However, traveling internationally was different and a large chunk of Eamonn’s preparation for the trip was being sure that the airline we primarily flew (Tam) would accept him on each of the flights despite his need for oxygen. Luckily, we were made aware that Tam is more strict than other airlines and that they require many documents to be filled out along with a doctor’s explanation of his medical needs. Eamonn followed through with everything that was needed, made each of us copies of all of his paperwork, and organized it all in folders that we both carried in our carry-ons. Sometimes, what people ask for just isn’t enough. Each of our Tam flights (a total of 4) involved many questions, looks of concern, quadruple checking that he had extra charged batteries for the machine, seat changes to the first row on the plane, and in some cases a personal chauffeur through the airport. In most cases, once we and our fellow passengers were on the plane with seats buckled, the questions had been asked and the flight was prepared for a prompt take-off. Never get too confident, though! For our last Tam flight, flying from Salvador to Sao Paulo, approximately 2 ½ hours, our bags were checked, we went successfully through security, boarded the plane, and got buckled into our seats. Eamonn was never questioned for his oxygen—until then. A man, speaking only Portugueuse, approached Eamonn asking to see the “documentos.” I will not bore you with the details (or describe Eamonn’s tone at times speaking to the flight attendants) but after being questioned by all of the flight attendants about his batteries, an announcement from the pilot explaining that the hold up was to ensure the safety of a passenger on board that requires oxygen (at that point I knew enough Portugeuse to understand), Eamonn being asked to show his extra batteries which were in the overhead compartment, and a half hour delay, everyone was content and ready to get in the air. Of course I have left out the part about how I scolded the flight attendant for making Eamonn more of a spectacle than he already is, but once Eamonn was settled back in his seat we enjoyed a good laugh. There’s just nothing else to do!
Everyone has asked me the highlight of the trip and that is a very tough question to answer. But without too much thought, my most memorable moment was in Salvador, listening to Eamonn play capoeira music with a renowned mestre (master) on his
newly bought and hand-made (by the mestre) pandeiro (tambourine in my terminology). He lit up like a kid in a candy store and I will never forget that face. That moment was absolutely worth all of the stares, questions, and flight delays. Just slightly behind that moment was when Eamonn “played” a capoeira performer in the main square of Salvador. I was lucky to see Eamonn in a capoeira show once in Chicago, but since being involved in his group in Chicago and getting sicker he has, for the most part, not been able to do capoeira. As we were watching the performers I could just see how much he missed it. We walked away briefly, and then he looked at me and told me he had to go back and that he would regret it if he didn’t try to play just a little. So we went back to the group and for the second time I got to watch Eamonn do capoeira. It was one of those moments that I was overwhelmed with pride and love for him–I know how hard losing this passion of his has been on him but seeing his smile after catching his breath, I knew he felt a little more like his old self.
Eamonn and I will certainly never forget our vacation together in Brazil. We will forever cherish the laughs we had, try to replicate the food we ate, play music on Eamonn’s new pandeiro, enjoy the new pieces of art in our living room and be reminded of our memories with the over 800 pictures we have! For 2 weeks we were able to enjoy a care-free get-away together, without any doctor’s appointments, hassles by the CVS pharmacy or fights over the phone with health insurance companies. It was all left behind. And despite that CF is always with us wherever we venture to, it will not knock us down. We have each other to hold us up.
Going on Our CF’n Honeymoon July 31, 2012
A few months ago I wrote a post about the difficulties that Eamonn and I were having in choosing a honeymoon destination given his health concerns and realities. We had considered a number of options, which were, for the most part, not conducive to the restrictions we had because of CF and the limitations that meant for travel. One of the places I included was Brazil, a dream vacation particularly for Eamonn. In Brazil’s summer months, our winter, the weather is hot and humid making it difficult to breathe, which is obviously not an option for Eamonn. However, we decided to take our vacation during our summer making it Brazil’s winter. So I am very happy to update you all and tell you, in case you haven’t guessed by now, that tomorrow Eamonn and I leave for our honeymoon to Brazil!
We will be traveling for two weeks visiting Rio De Janeiro, Paraty, Salvador and Praia Do Forte—enjoy figuring out the pronunciation! After almost five years of being together, nine months of which we have been married, we are finally getting to go on a dream vacation that I don’t think either one of us imagined we would get to do considering the changes of the past couple years. We have had many conversations about this trip, as you can imagine, and most of them include the topic of how lucky we are to have this kind of opportunity. Together we have a couple years full of many ups and downs and I will be blunt in saying that we deserve a vacation. And going to Brazil, a place that Eamonn has talked about visiting since I met him five years ago is literally a dream come true for both of us.
Now, with all this said, to get to this point has been a lot of work. As I said in my previous post, planning a vacation is not easy and it involves many details. Planning a vacation for someone with serious health considerations is a whole other story. We booked our trip about 2-3 months ago and since then have been planning for it. But we still don’t know all of the sites we want to see, where the best restaurants are, or what types of daily activities we should be doing. The planning that we have been doing has mostly revolved around being absolutely sure that Eamonn has every detail of medical-related business taken care of, planned for, and, should anything at all happen while in Brazil, knowing how to react (and yes, we have our hotels, transportation, and flights all set as well). I have always trusted Eamonn and have pure confidence that he knows best how to take care of himself, but if I ever needed affirmation of that, planning this trip has certainly proven it. He has done a remarkable job in being sure that every small detail for him to stay healthy on this trip is taken care of. He has been extremely organized and efficient, all while staying calm and seemingly unstressed.
Before this trip I had almost no idea of the hassle that this type of vacation would be for someone with cystic fibrosis, or any other disease, so I wanted to give everyone an idea of what Eamonn has been doing over the past 2-3 months. Here are the details in Eamonn’s own words:
Before doing any planning, I had to discuss our travel plans with both my regular pulmonologist and my transplant team to see if they would approve. Once we got the green light from them, the real work began.
First, I had to check the voltage of Brazil’s electrical outlets. If my machines were incompatible, the trip would be much less doable. I needed to get a different air compressor machine for taking inhaled medications, as my normal one is only meant for our voltage range. This simple step actually took a few months and the combined effort of my doctors and me. I also had to find out what type of electrical outlets are used in Brazil and get adapters so that all this machinery will work.
Next, I had to get contact information for CF doctors in Brazil in case of an emergency. While this part only required sending an email on my part and following up, this task actually took my doctor a few months to finalize.
Patients on oxygen are required to use an oxygen concentrator, which is safer than bringing oxygen tanks on an airplane. However, as these devices are relatively new and expensive, my oxygen supply company does not carry them, requiring me to arrange rental with a third party. In order to bring the oxygen concentrator on an international flight, I had to ask our travel agent to speak with the airline to find out what the procedure is, then contact the airline myself to get directions to access the necessary paperwork, which both I and my doctor had to fill out, and which then had to be scanned and sent to the airline.
To go through customs, I needed to make sure I have hard copies of all my prescriptions, which required a bit of calling and following up with nurses at the CF clinic. I also had to inventory all my medications and refill any necessary to ensure an adequate supply for our trip. Additionally, I had to fill new prescriptions for antibiotics to take with me in case I get sick.
Many of these arrangements require an endless succession of phone calls, emails and follow-ups with doctors, nurses, insurance companies and medical suppliers. Over the course of several months I have spent countless hours making these arrangements in addition to the normal work that goes into planning an international trip. But tomorrow, it will all pay off!
We are finally ready and almost packed for our first vacation together! No matter where we decided to go on our honeymoon it would be the best vacation of our lives, but I am ecstatic and honored that I will be with Eamonn as he lives his dream vacation!
How I Became A Weight Watcher July 17, 2012
When was the last time that you rummaged through your closet to get rid of the clothes you no longer wear that just take up needed space?
I’m sure this will shock my mother, but I try to do this at each season transition (you would not guess this from the look of my closets in Worcester). For those of you who know me well, I don’t have to tell you how much I love clothes and building my wardrobe, despite how irresponsible I can be about it. As much as I love the clothes I have bought, I also love sorting through them and deciding what to give away when I feel I have made as much use of them as I can. Lately, however, giving away clothes is not always about choice.
This past spring I actually did not do my usual closet clean-out. I didn’t have to. Why, you ask? Well, it occurred to me that I had been getting rid of clothes sporadically over the past months because they simply no longer fit me. I am not complaining or saying I’m fat, but this is a fact. Giving away clothes has not been so much about what I no longer choose to wear, but more about the clothes not being right for me anymore. As I thought about the clothes I had in bags to bring to the local Goodwill, it occurred to me that most of them were clothes from before or while I was dating Eamonn (you may be thinking that it was time for me to get rid of them anyway!). It did not take long for things to click.
Weight-gain is a large component of having cystic fibrosis. Many CF patients have pancreatic insufficiency which means that they do not digest food properly, resulting in being very thin (I’m sure some of us would, at times, not mind having this issue). Case in point, Eamonn. For those of you who know him or have at least met him, he is rather small (funny for me because before dating him I used to be attracted to men with guts). Being that he is really skinny, gaining weight is critical to staying healthy. In fact, now that he is on the lung transplant list, there is even greater pressure to increase his weight specifically to ensure a better recovery, post transplant.
What does this mean for me? I think you guessed it—his weight gain has meant my weight gain. To be fair, I cannot blame CF entirely for how I have been taking care of my body and what I choose to consume. However, can you blame me for wanting to cook and eat dinner with my husband, even if this means cooking and eating fat and calorie-rich meals? Almost every meal that Eamonn eats is very intentional, meaning that he has to be sure that he has the proper nutrients and that he is taking in a lot of calories. To provide perspective, he drinks two, sometimes three, weight-gain shakes a day each containing 1,000 calories. I happen to think that this is a perk of CF because those milkshakes are really tasty! All of our dinners must have plenty of fat and until now it did not really occur to me how much this would affect my dietary habits as well. We also eat a lot of carbs: pasta, rice, and potatoes, are our staples. In one form or another, our largest meal of the day is loaded with calories, fat and carbs—and for anyone who has ever dieted before you know that fat and carbs are the first to go when losing weight.
Up until now, I honestly have paid little attention to my diet. My focus has always been on making sure that Eamonn is eating right and supporting his efforts to gain as much weight as he can while staying healthy (side note: because of CF he also has diabetes, making this far more complicated and challenging than eating a lot of junky, fatty food). However, though this remains my focus and priority, I am also trying to ensure my own good dietary health. Along with exercising more, I have started to eat a healthier, well-balanced diet. This does mean that Eamonn and I oftentimes prepare separate dinners for ourselves. But as long as we enjoy each other’s company, dancing in the kitchen while cooking, it doesn’t actually matter what we’re making!
Last month, as I was on my routine walk to my office, I got a call from Eamonn. He had just gotten out of a follow-up doctor’s appointment and the first thing he told me was that he gained two pounds, making his weight a record high! I could not stop smiling ear-to-ear—I would take a wardrobe full of tight clothes if it means that Eamonn is gaining the weight he needs to be healthy. I’ll tell you this, there is no better sight than seeing my husband’s gut hanging over his bathing suit, sitting at the beach in the summer!