Monday, February 20, 2017
"Many places I have been, many sorrows I have seen. But I don't regret, nor will I forget all who took the road with me." - Billy Boyd
When I was eleven my brother was diagnosed with Mitochondrial Disease. A degenerative, genetic condition that has no treatment. When I was fourteen I was diagnosed with a disease that affects less than 45,000 people worldwide. When I was fifteen I was diagnosed with the same disease that is claiming my younger brother's life.
Originally, I was lost and scared, but I found my sisterhood among a group of mostly girls connected through social media. We all have different diagnoses, different stages of treatment (If there are any for our specific diagnosis), different locations across the world, but the one thing share is the sense of mutual understanding. There is nothing more special than being present with someone who knows what's wrong before you open your mouth. Even though, I have never met many of these girls in person I have shared more of my fears and worries with them than I have shared with my own parents. They are more than my online friends they are my family.
I still remember the nights following my return from traveling the number one specialist for my disease. After two surgeries and several procedures, the doctors walked into my hospital room and told my parents he was sorry but there's not much of anything they can do. He told my parents I would be lucky if I ever got better. In fact, I would probably only get worse. My parents didn't cry and I didn't cry. We were all numb and exhausted. I didn't say a word on the eight-hour drive home, but once we got home I called my best friend, Christine from our close knit group and cried to her until we both fell asleep on the phone together. I was devastated and angry but not for myself. I was devastated for my parents who now had to worry about not just one of their children loosing this uphill battle, but two of them.
Christine and all of the other girls have helped me through my darkest moments and cheering me through my greatest accomplishments. I believe that's the most important part of being in a sisterhood: Not only being there when life couldn't be any better but also being there in the darkest of times. Together we cry, we laugh, we pray, we celebrate, we hope, and we dream. We are all deep in the trenches fighting to stay alive, we are scared and suffering yet we still make time to lift each other up. We celebrate the success of the girl who's cancer went into remission while we pray for a miracle of our own. It's about being humble and not make everything about yourself. So many girls have come and gone since I joined this "sisterhood" and I am privileged to be one of the originals still breathing, still living and still fighting. Our lives have been anything but perfect but we have made something beautiful out of the imperfections.
Tuesday, January 3, 2017
While boarding a flight home from Iowa today with my siblings a little girl who couldn't have been much older than four was stopped in front of my seat. She stared at me for a second and very loudly asked her mother "Why does she have to wear that?" [For those who don't know I am immunocompromised and I have to be careful (especially during cold and flu season) to limit the contact I have with germs because my body simply can't fight off the simplest of illnesses. So I often have to wear a hospital mask in public to filter out the germs in the air I breathe. For me getting sick could very much mean a several day hospital stay. Plus I just got out of the hospital less than two months ago, so I'd rather not go back anytime soon.]
The mother was obviously mortified as most would be, but she was silent when (most parents I have met very quickly shut their child down from asking such questions.) I chose to take the opportunity to speak. Using an age-appropriate description I explained I have a disease that makes it hard for my body to fight off the germs I come in contact with so I have to be super careful and do everything I can to make sure I don't get sick.
The little girl was satisfied with the answer, the mother was relieved the question didn't make me upset and told the little girl that's exactly why we need to wash our hands often and keep our germs to yourself.
The point I am trying to make is to let your children ask questions. Don't force your child to be quiet and pretend as those your kids shouldn't know about "people like me." One day maybe your child or your grandchildren could be in my situation. People like to ignore issues simply to pretend as though those problems don't exist because they don't affect your family. Children are only curious and want to learn. Most adults wouldn't dare to ask a similar question for fear of hurting one's feelings. It's time we get comfortable with being uncomfortable.
Most of those like myself don't mind the questions because it's just another part of our everyday life. As for me and myself, I'd rather other people understand my life because it allows them to be more accepting and empathetic to my situation. It shows those people that I too am a real person just like one of them even though I've been diagnosed with multiple rare diseases. Plus the more people who know about my disease means the more awareness, education, research, and advocacy can be put together so we can be one step closer to a cure!