AFTER DOUBLING YOUR LIFE EXPECTANCY
In 2002, my father suffered from an aortic dissection. Even at the age of ten, I knew that it was bad. I had never seen my 6’8” mountain of a dad ever look so small. After 20 hours of surgery, he thankfully would survive. However, before I had a chance to feel relieved, I was taken to Stanford Hospital where I was poked, prodded, and tested. It turned out that I had the same life threatening condition that caused my dad to have his dissection know as Marfan Syndrome. From then on my life was turned upside down. It meant no more dance classes or sports. (Which at the time was my world.) It meant taking medications and wearing heart monitors to school. Kids were not the most understanding of these things and that only contributed to the isolation. Above all, I had to face the idea of my own mortality at a very young age. When I heard that my life expectancy was now down to 30 years old, I didn’t know how to process it, only that it was scary.
After meeting people my own age that also had Marfan and went through the same trials as I did, I felt some relief. That is, until I experienced my first loss of a friend with the condition. His loss was a wake up call to say the least and sent me into a spin. Even then I thought I could fight my fears and anxieties on my own. Spoiler alert, it didn’t work. I only pushed them deep down and forced myself to keep moving. It was this way, I thought, that I wouldn’t be seen as weak or dramatic or the infinite amount of adjectives that I used to describe my thoughts. Fast forward to 2014, where another reality set in. I was told that I needed to have surgery to prevent a possible dissection of my own. Now this was always a “when not if” scenario but at that time in an instant it was real. The preparations were intense but I continued to let my need to stay strong attitude guide my actions. I wrote a will, decided whether I wanted to be resuscitated, and gave power of attorney to my mother to pull the plug if I couldn’t come back, all before my 21st Birthday. But it wasn’t until I was watching an episode of a medical show that I can’t remember the name of that I had my first panic attack.
It hit me like a bus. Alone in my dorm room I felt trapped and I couldn’t escape. I somehow made it to my residential advisors office where I remember crying for what seemed like forever. It was then recommended that I see a campus counselor. I spent a few sessions keeping my cool and explaining that “I will be fine.” and “I’m ready for this.” Once again denying my chance to truly live in my reality and let myself feel my truth. Before I knew it, it was time for the surgery.I was fortunate to have a surgeon who didn’t give me too many details (at my request) and when it was over all seemed to be well. What I didn’t prepare for was the way it made me feel. Yes it was physically painful and I knew that it would be but, I didn’t expect the sudden rush of fear that I faced mentally.
Why was I afraid? I had more time now! With the surgery I had doubled my life expectancy. Then it hit me. That was exactly the point. I now had the time to worry. My life was going to be longer so now there was time to face my anxiety, and depression caused by this condition that had been piling up for years. This terrified me. It took me a while but I began my mental health journey by first opening up about my fears to friends. While that was great and I felt like a big step, it quickly became apparent that those closest to me, while supportive, weren’t able to fully understand how it felt to be in my position.
I later found my therapist by what seems like fate now. I was at a health clinic with a friend and while she was in her appointment, I walked into a wrong room and ended up being asked if I wanted to talk about anything regarding my health. After I explained I was there for a friend he still asked if I wanted to stay. It was in that session that I discovered that I had a lot to say. So many years of pent up anxiety and frustration that just came spilling out. After that, it was so easy to go back each week to talk more and more and now it’s a main fixture in my life. Now I’m not saying that therapy is what saved me, because I still have my demons and I’m still working on it. What I’m saying is that therapy is what made me understand that it’s ok to let myself feel. It’s what opened me to the idea that because my physical health was now in check, I needed to make sure that my mental health was taken care of. Even more importantly, this is a common problem for those in Marfan community. As medical discoveries become more advanced, life expectancies grow and more and more people are faced with the same feelings I had. So along with working on my own mental health journey, I’ve made it my vocation to help others break down the stigmas that they face and allow the belief that mental health is important sink in.
Like for many, this is a journey that will be ever growing and changing but what I celebrate about my mental health journey, is that I finally let myself thrive as much as I let myself fail. I don’t hold it in anymore. I’m not weak just because I don’t feel strong. I can be scared and still move forward. My emotions are not something to be ashamed of. They are to be acknowledged, lived, and celebrated. My Marfan journey and my mental health journey don’t define me but they did help me become who I am today. I wouldn’t change it for anything and I can’t wait for more, because as I may have mentioned, I now have time for it.
I celebrate: the beautiful mess! It's life, confetti, the mental health journey and more…You have time!
Dominga was diagnosed with Marfan syndrome when she was nine years old where she now works for The Marfan Foundation in its New York headquarters as a production specialist. A long-time Foundation volunteer, Dominga is the first staff member who has Marfan.
Visit Marfan.org for more information about Marfan Syndrome.