Let me tell you about one of the most quietly brave people I know.
My daughter has POTS and EDS. I will describe both of them a little more fully below, but the upshot for Shannon is that her joints pop out of place, painfully out of place, all the time. So a service dog to carry her books to class would be transformative.
Shannon rarely sleeps through a night due to the pain. While I did the Thanksgiving dishes, we chatted as she stood nearby and spent an hour working to get her joints back into place. “Yeah,” she admitted, “I do this most mornings, if I have time.” Most days, after she carefully works the muscles in her body to put everything where it’s supposed to be, she can be pretty active – but she can’t carry anything heavier than a plate without discomfort, and a backpack of books can be miserable.
There are days she can barely move.
But she is resilient; she is proud; she is resourceful. Shannon is bright, and capable, and working hard to make a life for herself. Her illnesses have delayed her scholarship, but she is an outstanding student making honors. I’m incredibly proud of her.
Shannon wants to be self-supportive. She works as hard as she can not to ask for help. She has refused to get a handicapped card for her car, because “there are people out there who need that parking spot so much more than I do.” So when Shannon asks for help, she really needs it.
Perhaps when you think about pre-existing conditions, you might think about people like Shannon. Think about someone who spent her formative years in social isolation. Who struggles with pain more often than not. Someone to whom I suspect the money may mean less than the knowledge that there are people willing to step up and tell her they care.
So in this season of giving, consider throwing a few bucks at a gift that will really make a difference. If you are even tempted to give, please give a little. Ten or twenty bucks add up quickly, and knowing that people are willing to recognize the uncomfortable realities of sickness and handicap means even more.
Shannon and I both freely recognize her privilege. Through her family, she has resources many dream of. If you are so inclined, there are many fine charities that could use support as well.
When Shannon was a junior in high school, she began having strange symptoms – headaches, nausea, lack of appetite, dizziness, fatigue. After many months and a battery of tests, we discovered a disease that few people have heard of but is surprisingly common (as many as 1% of American teens have it, mostly female). POTS (short for “Postural Orthostatic Tachycardia Syndrome”) is a dysautonomia, a disease that affects the autonomous nervous system. The body is a miraculous engine, doing a lot of things that make sense but you only think about when they go wrong. Consider the fluid dynamics of sitting up: when you are lying down, it is easy to circulate blood throughout your body, but when you sit or stand, gravity wants your blood to be in your feet – and few of us keep our brains down there. To make up for this, your autonomous nervous system constricts the blood vessels in your legs, making it easier to drive the blood up to your head. Unless you have POTS. For Shannon, as a junior in high school, the effect of sitting up was somewhat akin to what a jet fighter pilot feels doing a high-g roll: the blood rushed away from her head, and she got tunnel vision, dizziness, fatigue, and so on. The only remedy is bed rest, and so she spent a year fighting the symptoms. As you may remember, high school students are not known for their fierce loyalty to people who are different or sick, and so Shannon spent most of that year completely alone, except for her parents and siblings… and we barely count. Most people with POTS largely recover; some, like Shannon, may have significantly reduced symptoms for the rest of their lives.
EDS (Ehlers-Danlos Syndrome) is quite rare, although Shannon tells me that people with EDS often also have POTS. EDS is a genetic condition that affects the connective tissue in the body; extreme double-jointedness is a common symptom. It varies in intensity. I probably have it slightly, which in my case just means that I’ve remained pretty flexible as I’ve aged. In advanced cases, it can affect the integrity of the skin, the resilience of blood vessels, and worse. For Shannon, it means that her joints dislocate easily and continuously. When I say joints, I typically think of fingers and knees; when Shannon thinks about joints, she thinks of the rib cage and vertebrae. If you’ve ever dislocated a finger, think about what that might feel like if it was a rib near your heart; or a vertebra in your neck. It’s painful, and not a little scary. That’s Shannon’s daily reality.
