Airport Musings

I have always been a traveler. Partially because my Dad was a pilot, and flights were inexpensive in my youth. Mostly though, because I love to explore.

Before I got sick I had visited over half of the places on my “travel bucket list”. At 32 that was a pretty good feat. I’m not sure how many people that age could say the same. In fact, I was so grateful that I had, as traveling with chronic illness became less easy. Not so much the traveling with pain part (though it definitely factored in), but more because I couldn’t work anymore, so no money to explore the world.

These days most of my travel is around the country (New Zealand), to visit friends or take long weekend road trips. Once or twice a year I also go back home to Hawaii to visit the family remaining there. So while I don’t travel as much as I like, I still frequent airports.

Airports.

*sigh*

No one likes airports, let’s just say that right now. Crowded with people, long security lines, and overpriced mediocre food.

I dislike them even more now that I live with my disease. My pain isn’t usually visible, so I often don’t request wheelchairs when I really should. I push myself to walk the long halls to the gates, each step becoming more crippling, as I ignore the pain tweaks traveling up my spine. People scowl at me when I stop abruptly to stretch my sore limbs, not understanding why someone my age is clutching her back like that of an elder. They don’t understand the stress on my face when I finally get seated, muttering under my breath about the pain. But this has been my life for seven years now, and I’m used to treatment from others. My disease is invisible, and might as well not exist to those rushing past me to get to the gate, like a car speeding up to a red light.

Today I’ve luckily given myself ample time to get to my gate. I woke up with a terrible pain flare in my left knee/fibula. It has me walking with a limp, and I’m cursing myself for not bringing my cane, which sits uselessly in my closet at home. People have pushed past me in a hurry a couple times already, causing a few painful stumbles on my part. I see them now sitting at the same gate as I, annoyed at their rudeness.

*sigh*

In front of me is a wall with “Baggage Claim” posted on a sign with an arrow pointing westward. Amused, I wonder if that’s where I can find my illness insecurities. Perhaps they are making their rounds on the conveyor belt. Perhaps someone else will pick them up by mistake, maybe even take them home so I will be rid of them at last. How fortunate I would be.

I watch a hysterical child run around the gate like she’s been given candy to keep her quiet and it’s backfired. Her parents look tired and uninterested in her antics. As she repeatedly jumps up and down on the bag weigh machine, I pray it stops working so the anxiety of my bag being too heavy is alleviated, despite my knowledge of it being under already.

Airport anxiety + chronic illness = more pain. Hopefully it will cause me to pass out on the plane.

No one can do what I do

Today I was on a video chat with my dad and he said something that has really stayed with me.
We were talking about my disease, “the gift that keeps on giving”, and how despite the odds I’m always optimistic.

Yesterday I got out of the hospital again. It was my second hospital stay in two months, not a great average for someone like me.
In September I was in the hospital for six days, with an esophagus complication that was never really resolved. In those six days I developed a cold that I still have, and blood clots in my arm from a perforated vein via IV insertion.
The cold is annoying yes, but the blood clots ended up being a real shit. I had plans to go to a friends wedding in California, just a few weeks later, which ended up not happening.
My dad has planned to pay for my tickets but the clots caused him unease and he reneged on our deal. (I later found out I couldn’t have gone anyways due to not being able to fly with clots in my arm.) Unseen problems that turned into a big mess. Fairly sure I lost a friend or two over it. The ongoing cost of a disease I didn’t ask for.

Early Monday morning I woke up with a sharp pain in my right thigh. It was a confusing place for pain in my body to be, as it wasn’t near a joint. Rheumatoid Arthritis attacks the flesh around your joints, but this felt like someone was slowly sawing off my thigh bone.
When the pain became unbearable I took myself back to the Emergency Department. This time, unbeknownst to me, I had a clot in my leg. A very large one, deep in my thigh, known as Deep Vein Thrombosis (DVT). This was a serious matter as if the clot broke it could travel to my lungs or brain and I could die instantly.
After many tests and overnight observation, it was concluded that I must take twelve days of self injections in the belly (ouch!), followed by three months of blood thinners. No flying for me anytime soon..

Now out of the hospital, and limping around on a cane, I’m packing up my room to move this weekend. An unfortunate overlap in my current reality. I took a break and called my Dad on What’s App to check in and update him on my status.
After I told him about my hospital stay, the medication options available, and my recovery time, he looked stricken. I told him not to worry, I’d dealt with bad before, I could do it again.
He said “You’re right. No one else could do what you do.”

Huh..

That statement has really stayed with me.
“No one else could do what you do.”

It reminds me of a conversation I had with my partner the other day about ‘reality’. (We’d been watching American Gods, a show about the unknown of our world, and the idea of creating your own reality, your own fate.) I asked him if that were true, then why would I create a reality in which I was always in pain? Seemed a bit strange for someone to want to go through that on purpose.
It was an odd show to be honest….

That conversation stays with me too. Coupled with the notion of “no one could do that but you”, I’m left wondering.

People have told me before that they didn’t know how I could get through the things I have. Didn’t know how I coped with the pain, the depression, the unknown fate of someone with an incurable disease.
And I think about it too.
I think about it a lot.

When I was a kid I was such a wimp. Paper cuts would end in tears, a scraped knee would be the end of the world. I couldn’t lift weights like others in high school during PE. I wasn’t a very physical person at all.

Now it’s been almost six years that I have lived through pain that most couldn’t conceive. Bearable pain that I live with daily would send most people to the Emergency Department. I live with things that I never imagined I would have to. I’ve been in hospital more times than I can count. I’ve experienced heart attacks, survived lymphoma, survived cervical cancer, and broken several bones from hugs.
I live with Rheumatoid Disease, Osteoporosis, Fibromyalgia, Lung Disease, and Lupus, daily.

“No one else could do what you do.”

Maybe he is right. Maybe they all are.
I may not have been ‘born for this’, but I live with it on a level that many could never conceive.
Because they will never see it on my face. I wear my Disease like a smile on my face. I stay optimistic, I stay positive. Because I have to.

No one else can do what I do.