Global Story: Why I am a #LetMeBeYourLungs Partner
My brother and I grew up in a little town in Belgium in the eighties. We were an average family, our father was working as a specialist brewery mechanic. Our mother, a seamstress, stayed home to take care of the kids. As normal siblings we lived our lives, sometimes close to each other, sometimes with a little more distance.
Tommy was the sporty one, and I was more creative. Growing older, we became closer, especially when we both were renovating a house at the same time. That was also around the I started to have problems with my health. Renovating our house became very difficult and even though Tommy had his own project, he tried to help us where he could.
When I was diagnosed with pulmonary hypertension in September 2009, after a quest of two years, I was relieved at first. Finally, the doctors could tell me what the problem was, and in my belief, it was now a question of going through a treatment and everything would be back to normal. Everything was coming back under control and in my own hands. But slowly reality was setting in. This was indeed a turning point, but the direction was not entirely in my own hands.
From now on, my body was the chief manager of my life and would set a lot of limits for myself. It took me a couple of years to say goodbye to my former life and goals and search for new ones. This journey taught me to let go of things in life you can’t control, and focus on those you still can. It showed me most of all that it is important not to be a victim of what is happening to you.
When my brother joined Team PHenomenal Hope asked me if I wanted to be part of the #LetMeBeYourLungs program, I immediately loved the power of this program. It doesn’t turn the patient into a victim, but an active and equal partner in the journey to create awareness for pulmonary hypertension. Tommy and I, we are a team, both searching to give meaning to this disease that hit our family.
He is the lungs of our team, I make sure his training and effort gets publicity through media, social media, and website management, and make connections with other partners in this battle to create awareness, like the local patients group. The team is even bigger than both of us, my partner Erik and Tommy’s best friend Steven are also part of it. I feel so honored that my brother is using his talent for cycling and Erik and Steven are using their talent to organize things, to create awareness. Together we are a strong team!
On April 28, 2018, Tommy will ride in the Race Across Italy as part of Team PHenomenal Hope to raise awareness and funds to beat PH. When Tommy leaves for Italy, I will stay home and follow his journey online. But I know that he is in good hands with Erik and Steven by his side and I know we will be thinking of each other all the time.
Read more about Tommy Vansteenkiste’s efforts at www.teamphab.org/donate.