One of my friends from high school became a bone marrow donor this week. He signed up for a registry a while back and got a call that he was a match. Someone is going to get a new chance at life because he had the good nature to get swabbed and offer himself to someone in need.
Knowing that he did this moved me deeply, and not just because I know him and he’s a nice guy. Anytime I see people donating blood or platelets, I tell them, “Thank you on behalf of the rare disease community.”
We currently have a blood shortage in the US that is dramatic enough to require cancellation of many elective procedures in some cities. Donors who are type O-, B- and A- are especially in demand.
The Red Cross needs about 15,000 blood donations A DAY to sustain the amount used currently around the US. Blood can be donated every 56 days and platelets can be donated every 7 days. So if you’re looking for a way to help out the rare disease community, please consider donating. You can visit redcrossblood.org for more information.
Anyway, this got me thinking a lot about how much people like me rely on the good nature and willingness of others to help us out. These allies make our lives safer and easier, and they are truly the unsung heroes of the rare disease world. People tell me that they are moved by my tenacity to live life, but my tenacity wouldn’t get me very far without the help of my family, friends and coworkers.
So here’s a shout out to the people behind the scenes:
My sister, Kristin. I think that it’s harder to be my friends and family than it is to be me sometimes, and I think it’s probably harder to be my sister than anybody else. This past year has been one fast progressing mess and she’s always there to reassure me when my hair falls out and watch bad tv while I have a bowel obstruction. She brings me puzzle games when I’m in the hospital. Also, she has great hair.
My parents, Big Mike and Big Gail. My dad drives me to work most days (I’m still not strong enough to take the train both ways without reacting) and deals with the general nonsense in my life for me, like getting my car inspected and dealing with my air conditioner when it’s not working right. My mom listens when I complain about my life, hangs out when I need to use my Epipen, washes my dishes and is generally the best. They make sure I am awake for the important stuff so I don’t sleep through my entire life.
My cousins and extended family. Just the fact that Matt and Jacqui just got married is enough to keep my mind good for a while. In all seriousness, you guys drive me around, make sure I don’t get my PICC line wet and accommodate me constantly even when I’m sure it’s annoying.
My dog, Harry P. Harry never judges me when I need to sleep all day or throw up a lot. If I am not feeling well, he puts his face in my face until I feel better.
My friends, including, but not limited to, Alli, Cory, Margot, Alicia, Nichole, Ariel, Katie, Christina, Andrea, Tommy, Jimmy, Rob, Alyson and a whole bunch of others. These people all know how to use an Epipen and do lots of things that make my life easier.
My coworkers, who are amazing in the way they support me and make working largely from home possible for me. I have never worked anywhere with this level of compassion and I feel lucky to work there every single day.
In the way that it’s hard for people to relate to us in our struggles, it’s important to remember that the people we love have their own struggles with our illness. And even when it’s hard, they still love us and help us.
So to all our allies, I just want you to know: We notice you. We appreciate you. Thank you.
Seriously, though. You guys are killing it.