I met my girlfriend, Marissa, online in early 2013. There was a certain unique and immediate comfort in communicating through email, chat and eventually phone right from the beginning. Before we even met for the first time in person our lives became intimately connected. After our first attempt at getting together to meet in person got postponed, I had to leave to go to New Jersey for the death of my second oldest brother.
The conversation and support that came through the phone conversations from this very new person in my life, conveyed something very powerful and important to me in a time of significiant difficulty. In one of the most difficult times in my life, she was there, and didn't run. That realization, along with her sharing the same birthdate as my brother who had just passed, were just a few of the green flags that started to go up.
Almost three years later, Marissa is now my very best friend, and the sharing the loss of my brother was only the first of several challenging and painful situations she has supported me through. And issues with CF has yet to be one of them.
I have always wondered, and not been able to ask, what it is like for friends and loved ones to be on the other side of living with CF? I found myself comfortable and confident in asking Marissa if I could interview her about these questions to better understand what it is like, as a partner of someone with CF.
When I shared my interview questions with Erin Evans for review, Erin also had some great questions she wanted to ask as well. So this interview with Marissa is somewhat of a tag team effort, and I hope will provide others a certain level of perspective and support in also considering their relationship and love with CF.
BC: Do you recall when I told you about my Cystic Fibrosis? What was your reaction when I told you about having my CF?
MW: I remember you mentioning having CF from day one, and being more intrigued by you because of it. I didn’t know much about CF until I met you. I remember spending hours on the internet researching everything about CF and getting increasingly worried and sad about starting a friendship with someone living with a chronic illness and possibly losing them sooner than later. Having just come out from a divorce, I didn’t want to go through another loss, another heartache, and my mind was fully aware that starting a relationship with someone who could leave me sooner than later once again didn’t seem like the smartest idea. But like they say, the heart wants what it wants and here I am, still by your side.
BC: How does my having CF affect your life? How do you feel it affects decisions you make or feelings you have on a day-to-day basis?
MW: From day one, your CF hasn’t bothered me. I thought it would, but it’s always been a part of our relationship so to me it’s normal. When you cough, when you do your treatments, when you take your pills, when you feel weak - I don’t think of you as sick. It’s normal to me. It’s makes you. It doesn’t bother me.
The one thing that worries me is that possibility of you not being there in the future, of this chronic illness taking you away from this world before we’ve accomplished and experienced everything we want to do together.
Your CF makes me realize that today is truly all we have. That I must take advantage of the present, that living life is not about postponing things. That feelings, experiences, choices must be faced now, not tomorrow. That we can’t leave anything for tomorrow because we just don’t know what the future holds, for any of us.
Your CF has been a constant reminder to seize the day and live it to the fullest.
Your having CF has increased my awareness and precautions to be preventative and proactive in staying healthy. When my girls or I get sick, I'm more cautious and try to protect you so you don't end up in the hospital. You telling me you almost died back in 2012 from getting the flu and spending 3 weeks in the hospital is something I always have in my mind when we get sick here at home.
I think I take better care of my own health since I've met you. I realize that what I take for granted you don't. I don't think twice about ever being short of breath. But now I'm more aware of it because of you.
BC: What are the hardest and best parts about my having CF?
MW: As mentioned before, the hardest part of you having CF is that you might kick the bucket sooner than later and that we might not have time to do all that we want to do together. At the same time, CF is also a blessing because you’ve taught me not to waste time, to live and enjoy the moment and to never take time for granted.
BC: How do you stay positive in facing life with me having CF? Are there tools or strategies you use?
MW: I’ve always been a positive person. Nobody wants to face loss. Nobody wants to experience it. It hurts, it’s painful, it pretty much sucks, but I’m not afraid of it. So even though I’m terrified of losing you from CF, it doesn’t stop me from wanting to be with you, from having faith, from hoping, from loving you.
In reality, chronic illness or not, nobody knows when their time will come to an end so an impending death shouldn’t be an obstacle to love someone living with a chronic condition. We are all going to die, some sooner, some later - it’s inevitable. I think love goes beyond that. That’s my attitude, that’s my strategy.
A glass of sangria helps too :).
BC: What is something you wish I would do differently in sharing my life with CF?
MW: I wish you listened to your body more. You’re an extremely hyper, on-the-go person and sometimes you overexert yourself when you should rest and take it easy. I think you’re a great advocate of someone living with CF. I think you do plenty for the CF community and I wouldn’t change that for the world.
BC: What do you think is the most important part of being a partner of someone living with CF (or any chronic disease)?
MW: I think the three most important things would be: understanding your chronic illness, sharing any struggles, and treating you as an equal partner.
I never pity you, never see you as anything less than the man that you are because of your "condition". Personally, I don't like to refer to it as a "condition". CF is not a "condition", it's just part of who you are, like any of your other medical issues, I accept you as you are, imperfect or not.
I believe it is important to be a true friend, someone you can talk to, about your CF, about anything. It is important that we're both in tune with one another when it comes to your CF. I understand that you're not always okay and that you're going to have bad days, and it is also important for you to understand that sometimes I just don't understand what you go through and I can get frustrated with this.
I guess what I'm trying to say is that perhaps communication is the most important part... but it also applies to being the partner of anyone, disease or not.
This is the hardest question ever.
EE: Is Brian the first person you knew with CF?
MW: Yes. I wasn’t too familiar with CF before I met Brian. You’d think as someone in the healthcare field I’d have more knowledge about this chronic illness but pharmacy school mostly concentrated in teaching us about the most common pulmonary diseases like asthma and COPD.
EE: What was your perception of CF before you met Brian and how has knowing Brian changed that perception?
After meeting Brian, I’ve come to realize that although CF is a serious condition, people living with it can: thrive and lead normal lives; maintain a positive outlook; be compliant with their treatments; and, incorporate exercise as part of their daily routine.
EE: What advice would you give someone who is starting out in a relationship with someone with CF?
MW: I would tell them that CF, or any other chronic illness, should not prevent them from getting to know these individuals. I’ve found that those living with chronic illnesses have a better outlook in life than most of us without.
Most of them are fighters. They are positive. Their faith is deeper and their connection to everything that surrounds them is more profound than the rest. Their perspective of living life to the fullest and never taking anything for granted is contagious and inspiring.
EE: How do you tell other people in your life about Brian having CF? What have people’s reactions been?
MW: I’ve never felt the need to hide Brian having CF. I don’t have to, and I don’t want to. CF is part of who he is and I accept him as he is.
When I first met Brian, some people were concerned that I was starting a relationship with someone with a chronic illness. I know those people were only concerned about my well-being, especially after coming out from a divorce and having my heart broken. People didn’t want me to suffer yet another loss by getting involved with a “sick” individual, or falling for a guy who would “die” soon.
The truth is, at the end of the day, I honestly would rather experience one day at a time with someone I find amazing in every single way, someone who inspires me, challenges me and most importantly, makes me laugh than spend the rest of my life alone or in a mediocre, boring relationship.
EE: What impact has Brian’s CF had on your life? Have you had to change your life at all to accommodate certain aspects of CF?
MW: The only thing I had to give up was a small space next to my couch to accommodate Brian’s therapy Vest when he stays over!
INSPIRED BY THIS ARTICLE?
Brian Callanan is currently 39 years old, and was diagnosed with cystic fibrosis at birth. He is the Founder and Executive Director of the CFLF, and practices an active lifestyle primarily through swimming and cycling on and off road, but also enjoys snowboarding, hiking, sailing and rock-climbing. You may email him directly at brian@cflf.org.
Connect with Us:
Add new comment