Dysautonomia International knows how to party. They know that #GivingTuesday is the best, and want to make it last every day of December.
I used to think of charity in the abstract. I participated in service projects, I bought wristbands, I practiced my vocab to donate grains of rice. I gave $5 here and there as a kid to my church humanitarian fund, I read books to some kids, and I baked some cupcakes. Y’know, charity.
But none of these left a lasting impact on me.
But now that nonprofits like Dysautonomia International are one of my major support networks, I’m learning how important it is to find one that means something, anything to you, and to be involved in any way, shape, or form. And whether it *is* buying a wristband, whether it’s baking some cupcakes, whether it’s donating $10—as long as it’s FOR something greater, something that means something to you, that’s meaningful.
I’m giving what I’ve got to Dysautonomia International for #GivingTuesday and the month of December because they’re looking to expand their physician education programs, and I’m really excited about that! I cannot wait for the day that all of my doctors are familiar with dysautonomia and POTS because despite all of my studying, I do not always understand medical terms, I can only guarantee that I understand what I feel and experience in my body. I cannot wait for doctors to be educated so that other people can get diagnosed quickly and will not have to wait a decade like I did. Physician education is such an exciting project, because it brings us one step closer to everyone’s goal: a cure for dysautonomia.
First things first: I hope you all had a wonderful Thanksgiving! I got to see some of my best friends from high school when they came home for break and we TORE IT UP. (By that, I mean we went out for sandwiches and watched television together. Exactly like we did in high school.) As for Thanksgiving, my family celebrated with great friends and we had a lovely time eating turkey and cornbread with people who like/tolerate us. Unfortunately, mom had to bow out because she was struck with tachycardia. (Gee, I wonder if POTS is genetic?)
A week before Thanksgiving, I had a very serious #throwbackthursday and actually threw my back out while shopping at Wegmans. I squatted down to get some marshmallows and nothing has been the same since I stood back up. I’m still in a lot of pain on and off two weeks later (I think I might have sciatica) but people are being very kind to me and letting me take it easy.
As tacky as it sounds, throwing my back out has been a little bit of a learning experience. I might be one of the cockiest people in the world when it comes to asking for help. I generally equate going to therapy and going to my other eight million doctors as “asking for help.” But I’m full of crap, because I forget that there are so many other opportunities in life to ask for help that everyone should take advantage of in order to be happy and functional human beings.
There have been a few opportunities where my back was hurting more than I thought possible, spasming out with every step I take, and my mind has been screaming “ASK FOR HELP. TELL WHO YOU’RE WITH THAT YOU CAN’T KEEP WALKING.” but for some reason I just didn’t. There was such an internal war going on that I thought about for a long time afterwards—I was with people that I knew cared about me, why didn’t I tell them just how bad things were? Why didn’t I tell them that the pain made me think I was going to throw up? Why didn’t I speak up?
I realized that it was all out of fear. I was afraid that they wouldn’t understand. What would happen if I got vulnerable, told them how much pain I was in, and they didn’t care? In one of those moments, I subconsciously decided that I wasn’t prepared for the potential pain of them not understanding me and went to suffer in silence aside from the sharp inhales of breath I couldn’t contain.
In retrospect, given the people I was with, I wish I had spoken up. I was with people who loved me. I was with people who have taken the time to understand me, understand my pain. And worst case scenario, if I asked for help, if I told them I was in pain and they didn’t get it, would the world stop turning? Would they stop caring about me? Would it mean we don’t have fun together? Absolutely not. It would just mean that this isn’t one of the things that we are all on the same page together on. And that’s OK. Because none of us are going anywhere. What matters is that I know I have the option of speaking up and asking for help when I need to.
Because this is my blog and I have a million thoughts and feelings, I give you a break from our regularly scheduled chats on life with autonomic dysfunctions and bring you chats on people talking about this infamous sweater from Target:
There are several ways people are reacting to this sweater.
Does Target have to do that? No. But customers always have the right to ask.
A lot of people are upset that we’re too sensitive or too politically correct lately. As a child of the 90s, I’m kind of used to it. When people my age complain, “you can’t say anything anymore!” I roll my eyes because it was our parents and teachers that taught us to be sensitive in the things we say. At what point did 20-somethings ever have full license to go around saying insensitive things without repercussion?
Facebook, Twitter, and the news are full of ranting adults whining about how everyone needs to suck it up and take a joke, but has anyone ever taken a moment to step back and question why the object in question is offensive to someone?
But here’s my guess about why the OCD shirt is offensive to so many:
We still don’t know how to have appropriate cultural empathy about the impact OCD has on peoples’ lives while reserving a place for humor for those of us who want to be able to laugh about it. Humor helps so many of us cope—but my coping mechanism is not your punchline.
OCD manifests in so many different ways, some are seen and unseen. And because many are unseen, those who aren’t first party to someone’s personal experience are privy to dismissing a person with OCD’s experiences. I’ve had a lot of people deny my diagnosis because they have never witnessed me completing any rituals. Well,
OCD can manifest in obsessive thoughts that never. go. away.
I don’t owe anyone an explanation.
OCD does not look the same on every person. Any episode of My Strange Addiction will tell you that. And recovery does not look the same on every person. One person can go through a few months of cognitive behavioral therapy and achieve recovery. Others will battle this illness for decades.
As far as Target’s shirt goes, I’m more disappointed in the fact that it’s lame. I know it’s in the category of “Ugly Christmas Sweaters” but it’s just a weak design. Additionally, the “joke” is unoriginal! Tons of other companies have used it on their products. Unfortunately for Target, they’re the biggest … target. (I’m sorry for that. But it was too easy. Just like poking fun at OCD is, apparently.)
So I guess before screaming “STOP BEING SO SENSITIVE YOU’RE TOO PC!!!” at someone who says they’re offended by the shirt, maybe remember that there’s a reason that they’re offended, there’s a battle that they’re fighting, and for the love of all that’s holy, it’s almost the holiday season, please don’t be angry at other people, be angry at faceless organizations. It’s just better for everyone.
My dogs are the loves of my life. The day we brought them home was the happiest, scariest, most exhausting day I’d ever experienced. When they do what I ask, they are the greatest joys of my life. And the other 99% of the time, they drive me nuts.
For as spectacular as dogs are, they don’t “get” chronic illness. And how could they? They’re animals. They’re mostly occupied with following whatever smell is most interesting and getting their butts scratched.
But over the last four years, my boys and I have grown together and their behaviors have also helped me treat my dysautonomia or at least make me feel all warm and loved inside.
They remind me to drink water.
Filling up the dogs’ water dish is a reminder to fill up my own water bottle. The boys love to hydrate (and possibly over hydrate) and are a good and timely reminder for me to drink more. Casey needs water? I need more water. Thanks for the heads up, pup.
They get me up.
They say it’s always good to have someone to hold you accountable when you start a new diet or lifestyle change. Here’s the ultimate in accountability: if I don’t get up at a certain time on the days my mom works, there’s going to be a disaster waiting for me to clean up. My body is screaming for more sleep, but Duke and Casey need to be let out. And they also need some love.
They get me outside and moving.
I’m still not in good enough shape to take them walking, but they still have me moving constantly. My boys like barking, and sometimes the only way to get them to stop is to get up, go outside, walk down the steps of the balcony, and get their attention by clapping my hands a foot away from them. Whatever it takes to stop the mania.
Casey waits for me.
Duke will dart up the stairs, presumably to root through garbage before I can stop him, but Casey climbs each flight, pauses at the landing, and waits for me to join him before continuing. I’m slow and he waits for me. He does the same thing when I go to the bathroom before taking him downstairs or stop to talk to my mom.
Duke keeps me warm.
Duke is our Little Man and loves to cause trouble and then snuggle. His preferred spot is in the crook of someone’s legs, resting his tiny head on top of their knees, soaking up their warmth but also giving off his own. He’s the most useful animal in the winter when he decides you’re worthy of his embrace.
They are the world’s best prewash.
I try my best to never give my dogs table scraps or leftovers and I’ve done a pretty good job—they know not to bother with me when I’m eating because they’re not getting anything. But when I occasionally cook, I’m usually exhausted from doing so and have barely enough energy to do my dishes. That’s when it’s a godsend having the world’s greatest prewash: two golden retrievers who will not stop until they get the job done. I have a list on my phone of dog safe and non-dog safe foods and try to make sure the prewash is the highlight of Duke and Casey’s week. It usually is.
They help me connect.
It was so hard watching my friends continue their lives off at college and getting jobs while I stayed at home working on getting better. But every time I shared a picture of my dogs through texts or Instagram, I’d get “so cute!” or “so jealous!” comments because (1) my dogs ARE the cutest; (2) everyone misses their pets; (3) animals are the common ground to connect through.
That’s why we get dogs, right? Because we want to love and get love back? These two animals have literally licked my tears away when I’m in pain. Those big, goofy golden retriever smiles have carried me through flare ups and I hope I can make them as happy as they make me.
I know that I’m not the best dog owner. And I know that some of these things will make good dog owners and trainers cringe. But I do my best to make things work—to make dysautonomia and to make Duke and Casey work. Because one of them I can’t get rid of, and one of them I refuse to get rid of. BECAUSE THEY’RE SO DARN CUTE LOOK AT THOSE FACES JUST LOOK AT THEM.
And yes, this post was partially an excuse to post pictures of my dogs.
If you’re not already familiar, #GivingTuesday is an awesome program that encourages people to give to charities on the Tuesday after Black Friday and Cyber Monday to get back into the true spirit of Thanksgiving.
This year they’re holding an essay contest called #MyGivingStory and the winners could get up to $5,000 donated to their nonprofit of choice. ($5,000 could mean research! Physician education! Resources for newly diagnosed patients!)
The 15 essays with the most likes will be the ones submitted to a panel of judges–so now it’s crunch time.