By Mariah Ray
As high school volleyball season quickly approached, I tried my hardest to get in shape before practices began. I found this yearly task was more difficult than I remembered. The first day of practice hit me hard. The training hardly helped at all, and before long I was lagging behind everybody else. I pushed on though and made it through the year without any real issues.
At almost 20 years old, I have gone through my fair share of issues related to HHT. Despite my hurdles, I have been able to compete athletically at the collegiate level. I am now a javelin thrower for the University of Montana in my sophomore year – I never thought this dream could become my reality.
HHT was not something my family had really heard of until my third trip to the ER. During the summer between my freshman and sophomore year, the issues I first noticed during volleyball suddenly became much, much worse. I began passing out and having trouble breathing with the simplest activities. Sometimes, I would even be sitting down and I could feel my nose and hands go numb all of a sudden with no apparent causation.
One hot, summer day changed everything for me. I had an attack again and was sent off in the ambulance for the third time that year. This time, the ER doctor decided to take a closer look at the golf-ball-sized lump in my chest. She came into my room and gave my family the news: I had HHT and that lump in my chest was a pulmonary arteriovenous malformation causing a backup of blood and oxygen to the rest of my body.
One month later I was heading down to Denver to hopefully resolve the issue I had been dealing with for what seemed like an eternity. The doctor performed a routine embolization and before long the symptoms were fading. I could feel that huge lump in my chest dying away. The next year, we found there was some leakage still causing some issues, so, back down to Denver it was. I could feel the blood pumping strong in my body for the first time in my life and I felt like my old self was finally shining through.
When I returned to school and basketball season though, my optimism quickly drifted away. I was having trouble conditioning even a month after we had begun. My head coach repeatedly told me to work out on my own and that I needed to work harder because I was obviously out of shape.
Even after I told him about my medical conditions and surgeries, he refused to give me a chance. Every practice became a fight to stay on my feet and prove I had what it takes to be part of the team. My coach’s views on my health problems never changed, but I learned I could be my own support system. I know my body better than anyone else and I was no longer going to let coaches, teachers, family and doctors tell me my problems were not real and valid.
Five years after my first diagnoses, I am stronger than ever. My issues related with HHT have not gone away, in fact, each year it becomes harder and harder to work out. I have, however, found great support systems and people who care and understand.
I recognize my limits and symptoms better than ever before and have the ability to stand up for myself regardless of who the skeptics may be. Now, whenever someone tells me I just need to work harder, I have the confidence to brush them off and keep achieving any goal I set for myself.