Debbie Downer Raises Awareness
October is Dysautonomia awareness month. Every year I struggle with what to do to raise awareness. I ponder and deliberate and really put a lot of thought into it. So much so, in fact, that November comes and I still haven’t decided what to do. This October came and I thought, Oh great! Quick, I gotta do something! And then a brilliant thought hit me … I already have. So, I will most definitely, for sure, absolutely, 100%, without a shadow of doubt, have good intentions to post excerpts from my book Chronic Blessings throughout this month. I will try to choose excerpts which give a quick glimpse into what life with dysautonomia—or invisible illness in general—can look like.
And if November rolls around and this is the only post to have hit the world wide web? Well, it’s the thought that counts, right? I’m over beating myself up for not being able to do it all.
(BTW, if you haven’t read the book then shame on ya! Oh no, I mean, then not everything will make perfect sense as this is just an excerpt. In this section, Greg and I are leaving a busy church service at a large camp on a hot summer day.)
Quote from Chapter 5
Mommies Are Lazy and Daddies Work Hard
… As the crowd was surging behind us, we headed down the steps to where several golf carts were lined up. Greg was holding my arm as I headed around the back of one of the carts to sit behind the driver when a healthy-looking woman about my age approached from the other side. The driver announced to her and the rest of the crowd, “At this point, we are only taking elderly and the handicapped!”
I stopped in my tracks and looked at Greg helplessly. Even though it was evening, it was still hot; I was dizzy, and the cabin was so far away. But, I was neither elderly nor did I look handicapped.
In the sternest tone I’ve ever heard him use with me, Greg insisted, “You get on that cart!” Then he pulled my arm toward the seat I had been headed for. I plopped down behind the driver, and Greg promised he would meet me at the cabin after he got the kids. I felt humiliated, and as elderly and disabled people started to fill up the carts, I felt ashamed that I was taking someone else’s spot. What little old lady was going to have to wait in the heat because of me?
I leaned forward and said to the driver, “I know I don’t look disabled, but I truly do need to be on this cart.” He said okay. However, after dropping everyone else off at their doors or vehicles, he dropped me at the end of the rows of cabins and did not attempt to take me directly to my door. I didn’t say anything, as I felt pretty certain that I was okay to go the remaining distance … but sometimes I wasn’t. I never knew. And I was too embarrassed to ask him to take me the rest of the way.
I get it. I don’t blame the man. He was rushing back to pick up more people and was trying to transport as many as he possibly could. He didn’t know the alter-universe that is POTS. He didn’t understand that I truly live in a different world than he does.
In my world, the heat is a dangerous predator that creeps up behind you. Even when you are on the lookout, it will pounce on a single moment of weakness. In my world, the pressure of the atmosphere can alter balance, trigger a migraine, or make the room spin. In my world, I can’t tell my kids that I will go do something fun with them ahead of time, because I won’t make them promises that I simply don’t know if I can keep.
In my world, I had to choose between eating and being able to stay upright, because they both could not happen simultaneously. In my world, every invitation is viewed through the lens of POTS, and accepting takes extensive planning. In my world, energy is like money on a very fixed income; it has to be budgeted as it is in limited supply. I can’t run out before the next paycheck, because when it’s gone, it’s gone. In my world, life as I knew it had completely changed … I had completely changed. I wasn’t even sure I knew who I was anymore. Did I, as I knew myself, even exist in this world?
What about my kids’ mother? Surely the mother they used to have didn’t exist in this world. That was one of the things that I struggled with the most; the fact that my kids didn’t seem to remember who I once was. I was the mother who went nonstop from morning till night, accomplishing so much. In this world, all they see is the mom who fatigues quickly, the mom who has to stop and rest all the time, the mom who occasionally tries to play with them, but gets so short of breath that they have to stop the game and wait for her. After all, Noah once said, “Mommies are lazy (he meant tired), and Daddies work hard.”
Ouch.
Unfortunately, in this world, they also see the mom who is short-tempered and constantly asking for quiet. In this world, if I did something extra in my day, the kids had to pay the price as well. I may power through the extra work or activity, but in turn, I feel worse in the evening and am too weak to take care of their needs. I’d jump or involuntarily scream at their every noise, and their movements messed with my balance. In this world, chances are, if outsiders happen to see an active, smiling mom during the day, my children will see an unavailable or grumpy, unkind and snappy mom at night.
In my world, I tried not to think about what was happening to us too much; otherwise, grief reigned supreme. Sure, no one had died. But grief applies to so much more than death. In any case, it felt like my old self had been put to death, and I didn’t realize how much I loved her till she was gone.
So, since this might be your first sampling of Chronic Blessings, I thought I’d give you an extra uplifting section to start you off. Your welcome. What can I say? I can rock the Debbie Downer role just as well as I can the second-most-sarcastic-sister-in-the-family role. (But ya gotta admit, you may understand the world of someone with invisible illness just a wee bit better.)
Until next week’s excerpt … or Novembers … or Decembers. (Let’s not getting nitpicky about the details, mmkay?) Debbie Downer. Over and out.