For those new to our blog, welcome. For those who have been around, thank you for continuing to give this tiny blog a piece of your time. I believe that life is worth reflecting for the purpose of processing and growth. This post is a little heavier (and longer) than the normal positive posts I enjoy writing.
Though invisible, there is no facet of our lives my autonomic dysfunction does not touch. It is in the effort of Dysautonomia awareness that I share these no longer private thoughts surrounding this facet of my life.
Kyle and I recently traveled home to Texas for his cousin’s wedding. Now, I don’t know about you, but I LOVE weddings. Trust me, I realize the irony of this as I write it. For those unaware, Kyle and I eloped. Another story for another day. Back to…I LOVE weddings! They are chaotic and messy. Emotions are high, matched by complaints and frustrations. And then, it really begins. You’re all together, celebrating the union and no one remembers the chaos prior. No one remembers that Grandma almost didn’t make it. And no one cares, because she did. Because we are all together in love, celebrating this young, adventurous new couple who brought us all together for food, laughter and memory making.
Traveling with my dysfunctional body does offer various frustrations and embarrassments. My GI doctor has been phenomenal in helping us combat the additional symptoms and struggles that accompany air travel with Dysautonomia. Even with preparation, there are some things that only experience can teach. For example, trial and error has taught us that sometimes, carrying my own backpack stabilizes my dizziness and other days it can be enough to tip me over. There are some things for which you just can’t prepare.
Upon arriving at the wedding, I immediately moved my belongings from the car I arrived in to the car I would be leaving in. Remember that chaos I mentioned? 🙂 It was in this dance that the wedding planner so sweetly offered her help. I so sweetly in my Southern drawl (that seems to linger a little slower, a little longer when I’m home) declined her offer. When I am strong enough to do things on my own, I like to. It offers me some valued independence and craved normalcy. And why not exert the tiny sense of independence I can control? And then, the sweet wedding planner returned, this time almost begging permission to help. From her point of view, she was watching someone shake, tremor, and sway as they tried to move bags from car to car. For me, I had to sting back tears as I firmly and sweetly told her I was grateful for her offer and that I was happy to allow her services be put to better use elsewhere because I had this under control. I have grown immensely in learning how to ask for help when I need it. I just did not need it in that moment. It was later that Kyle told me this warm-hearted woman genuinely expressed her apology to him and communicated that it was coming from a place of concern and she did not mean to offend me. We hope we smoothed out any lasting concern following the wedding.
This experience made me stop and think. In my fierce determination to relish what tiny bit of independence I find in my days, I unintentionally made someone else feel bad. She doesn’t know me, or my illness. She doesn’t know that I am, now, somewhat good at asserting help and laying down boundaries. Rather than declining this big-hearted woman’s help, I should have communicated differently, better, more clearly. I am still unsure how as I continue to learn to navigate the waters of preserving my dignity through chronic, invisible illness. I am open to your suggestions and pinpointed prayers. Next time, I hope I can do better to preserve myself while also respecting and appreciating kindness from others.
In traveling, I make sure to mark the indicated boxes for pre-boarding. I used to carry paperwork with me, until an airline representative informed me that it was not necessary. While pre-boarding Sunday, I could feel my tachycardia quickly taking over. Blood was pooling in my extremities, signaling lack of oxygen to my brain. Lightheadedness and dizziness quickly followed. There was much confusion buzzing around the pre-board area, which led to prolonged standing in place. Marching in place to try to pump blood to my brain, I could feel my patience thinning. It is important for me to be aware of these emotions to prevent them from outwardly manifesting. With Kyle holding me upright, we made it. When I finally handed over my boarding pass, the woman gave me a look of condescension, telling me that this was pre-boarding only. I told her that my boarding pass was marked for wheelchair and handed my boarding pass back to her. After looking it over, she rolled her eyes, scanned it and told me to go ahead before noting, “By the way, that did not say wheelchair.” I wish I had not braced myself on the wall and my husband to turn around and show her. I wish I had not smartly thanked her for arguing with me about my physical limitations (further exacerbating my symptoms by prolonging standing in place). I wish I had silently moved forward. But that is the smaller part of me that didn’t win. The bigger part was screaming at me to kindly say something that would make this woman second guess condemning judgement upon another for something she doesn’t know anything about. People see an image of health. If I lift up my shirt, you’ll see abs as ripped as my collegiate days (though not as full). No one knows that is from sometimes hours of daily vomiting and dry heaving. People see a young “fit” woman. People see youth. It is all this harsh and unwanted judgement that has made learning how to ask for help so hard. I do assert help and set boundaries pre-boarding only to be met with condescension and disgust, as if I am working the system. I can only hope that situation Sunday at gate C9 makes that airline representative stop and think the same way the interaction with the wedding planner made me stop and think. I hope that young woman can grow from her moment of hurting someone else.
To be fair, this airline’s in-cabin personnel continues to set the bar high with their service and humor. I have mailed in hand written letters to flight personnel that have cared for me when I’ve been uncontrollably sick in the air. I only wish their ground personnel had the same level of sensitivity training for mobility disorders they cannot see.
In the name of awareness, I am asking, begging, please share this. However you deem appropriate, whether it is at the dinner table, on social media, over coffee with a friend, a story with your children to teach compassion, however, but please, please help raise awareness. Mobility disorders and chronic illness are not always visible. You may see a vision of health. Sometimes, we want to feel normal too. I believe we deserve that. And that may mean faking wellness in some moments. It would be great if the world would encourage us instead of judging us. Our bodies do enough of that.
To all of you reading, to the bride’s wedding planner, and to the woman at gate C9, Vaya con Dios.
(The airline in this article has contacted me in an effort to collaborate further. It is out of respect that I have redacted their name. If you read this article prior to the redaction, I ask that you please do not comment with the airline name.)