On Traveling With a Shitty Spine

First things first, let me tell you how I feel about Frontier Airlines charging for a seat reservation and a carry-on bag: like a fucking idiot. Duped. If I’d have known, I’d have gone ahead and paid for a more expensive airline. Never again, Frontier. You and I are finished.

OK. Phew. Now that that’s out, in the interest of illuminating one aspect of daily life for a person with a (sometimes) invisible disability, let me tell you about my flight:

• I flew from Denver to San Francisco. This is a non-stop flight of about two hours that I was super excited for because dear old friends and a city I love awaited at the other end
• I walked into the airport with a backpack, my specialized back cushion that I take with me everywhere I go to extend the amount of time I can comfortably sit in chairs, and a carry-on sized suitcase that I have to check because a) rolling it behind me causes uneven pressure on my spine which makes my ribs want to pop out of place, b) I can’t lift it into the overhead bin, and c) I know I’ll barely be able to walk at all at the other end of the flight.

*Let me back up a minute to clarify that I have a genetic disorder of my connective tissue that makes my joints unstable and of low quality (hEDS). I have had a lot of surgeries, I have a lot of titanium in my spine, and I’m in pain all the time every day. You cannot tell this by looking at me. I have ridiculously fabulous posture (because my ribs/hips/pelvis will dislocate if I don’t), and I can walk really well and for a long time. All this to say, if you saw me walking into the airport yesterday, you’d have been more likely to assume I do yoga every day in soft pants and strappy bras than that I am a person with a disability.

Me, dressed as Tank Girl, showing off my fabulous posture

• I checked in my suitcase and took a beat to decide whether to get wheelchair assistance. Here are the factors I weighed — I didn’t *need* a wheelchair because at that moment I could walk with ease. But, walking with the weight of the backpack and the awkward pad was going to sap my strength quickly and standing in line for security and the related bending, twisting, and lifting required to get through the line would both amplify my pain and increase my risk for my joints dislocating. Hmmmm. I decided to walk. Bad choice.

*Digression point two. Being in the wheelchair, even though it helps a ton to save my energy for what I know will be a debilitating experience, sucks. It makes me feel more disabled, it turns me into an object with wheels rather than a person, and my native tendencies toward both people-pleasing and introversion put me into the impossible position of wanting to entertain the person pushing the chair at the same time as I want to pretend what’s happening isn’t happening and turtle into a tiny ball.

• In the security line, I stood behind a mom with two young kids who were running amok, she was frenzied and harried. “Can I please help you?” I asked her, “I’ve done this — traveled alone with two babies. You want a buddy?” She smiled and declined. I felt good about offering and relieved she said no. I had momentarily forgotten I could barely get myself through security, let alone her double stroller.
• I arrived at the gate right on time and confirmed with the gate agent that there would be a wheelchair at the other end. God bless her, she didn’t blink at the request or ask any questions. I walked onto the plane, staring down the long thin aisle to the second-to-last row I doomed myself to by being unwilling to pay extra for a seat up front.
• I happened to be right behind an elderly woman who didn’t speak English and I helped her find her seat. She had a sweet old-fashioned needlepoint covered suitcase like Mary Poppins and she motioned for me to lift her bag into the overhead bin. I lifted her bag. It was shockingly, unreasonably heavy and the lowest rib on my right side slipped, just a little. I smiled at her graciously and silently berated myself for being so stupid all the way to the back of the plane.

*Digression point three: Seriously, put yourself in my shoes. In what world can a healthy-looking young(ish) woman say ‘no’ to helping the sweet old lady who doesn’t speak English?

• Of course, when I got to my seat I found that the person in the middle seat had a broken ankle. I felt shitty for making her get up to move so I could scoot over to the window. Having just spent all my good Samaritan allowance on the old lady, I resisted the urge to offer her the window seat because I require the 4 inches of extra room between the seat and the airplane’s wall so I can pull my feet up onto the chair. But I did resign myself to dehydration because I didn’t want to make Broken-Ankle get up to pee. Not only would that potentially hurt her, but because she’s not allowed to keep her crutches in our seat, it would also mean bothering the flight attendant to bring her crutches. Never mind that the pain medication I take to tolerate the flight makes me impossibly thirsty. Sigh.
• I spent a few minutes unpacking absolutely everything I might need for the flight (phone, earphones, book, glasses, extra pain meds, socks, sweater) because after about 15 minutes in the tiny little seat I knew I wasn’t going to be able to bend over to get whatever else I’d need out of my bag.
• I settled in, as much as I can settle. There is nothing worse for me than sitting upright in a chair and sitting still. Commenced fidgeting as much as possible to fight the pain and muscle exhaustion and the desire of my ribs, pelvis, and hips to fall out of joint from the weight of my torso. My shoes came off, my socks went on and I started shifting. Feet up, feet down, feet under the tush. Turning this way, looking that way. All within the tiny sphere of space allowed by this cheap-ass airline next to a suffering woman in a cast. Ugh.

**Denotation of time passing.** Pain worsening. Shooting pain down my right leg signals the loss of sensation in my foot. It’s similar to my foot falling asleep, except more like it’s being pulled down by a weight. Try not to think about how that feeling will last an hour for every minute I’m in this goddamn chair. Shooting pain down the left leg starts a few minutes later, signaling the same thing on that side. Rib displaced by lifting the lady’s suitcase slips all the way under the rib above it. I take another pain pill with half a sip of water. I start having a hard time concentrating on what I’m reading as the discomfort worsens. I endeavor not to look at the time. I order a bourbon even though I’m on pain meds because it fucking hurts and alcohol really, really, helps. I try some more not to look at the time. I degenerate to playing solitaire on my phone. Try not to let my fidgeting bother the woman next to me or the guy in the seat in front of me even though I have to move my feet up and down and onto his arm rest. I hold back tears of relief when the “20 minutes till landing” announcement comes on. Don’t think about my bladder. Don’t cry out when the jolt of the plane touching down further displaces the rib that’s already out.

• All the way in the back, I had to wait, wait, wait for the plane to clear out. I assured my broken-ankle seat mate I’d be slower than her walking down the aisle. I gathered my things back into my bag and shifted it onto my back, gingerly pulling my seat pad in front of me. I Ignored the quizzical looks from her and the flight attendants that the same woman who walked so easily onto the plane is now hunched over like Quasimodo and shuffling my feet worse than the old woman with the needlepoint bag. I limped my way down the aisle, supporting my weight on the seats on either side. I stumbled over the lip of the plane where it met the hallway into the airport and fell gratefully into the waiting wheelchair.
• I held in my whimpers with each bump and movement of the chair. I no longer worried about the wheelchair attendant because the pain was taking up 95% of my brain function. I asked to use the bathroom and reveled in the sensation of getting to pee after holding it for so long — there are parts of my body that still work right.

A special shout-out here to wheelchair attendants. They make shit money and work really freaking hard. Tip big, people!

• I called the Lyft, got in the car, and closed my eyes through the car ride to my friend’s house. Dreamt of pain meds, unlimited water, and being horizontal. Reminded myself that the pain will pass and that the joy of being here will outweigh it. Put a note in my calendar to get the damn wheelchair assist on the way home and not to help any little old ladies.