I will never willingly choose to “miss out” on life because of my conditions. I’ll go down with a fight before I let these illnesses prevent me from living my life: and that includes travel. But that doesn’t mean that it is always easy. Read on …
While I’m still sick fairly often with frequent migraines, flu-like symptoms, nausea, fatigue, and muscle aches, the excruciating and debilitating joint pain and swelling that is RA has, at least temporarily, left me alone for the most part as of late. My “bad knee” has just become a part of who I am; I walk with a mild limp, but at this point, most people don’t notice all that much, because they’re just so darn used to it.
What I’m saying is that I don’t typically look like anything is wrong with me, save for some dark circles under my eyes which I like to call my Prada bags. (Ha ha.) I myself feel things and notice things — skin rashes and redness, easy bruising, brittle hair, scars — but these aren’t things that cause the outside world to take notice. No one is going to stop and stare because I look tired, or frail, or clammy. Often my gait probably just looks like my feet hurt. With the punishing shoes that many women wear, this wouldn’t be a surprise. And so, I blend. I blend in like a “normal” even though I know that, at least on the inside, I’m not. Typically, I’m happy to be looked at, because it usually means that I have on a nice outfit, am carrying a killer bag, or am looking a little extra pretty, or dare I say, sexy, on any given day.
On Saturday it was different.
This past weekend, my husband and I went to Florida for a little getaway. We’d decided to do Disney’s Magic Kingdom on Saturday, and, man, was it magical. Truly, I felt like a kid again, but only in the very best of ways. We had fun together, creating memories that will last a lifetime. One memory, though, that I’d like to erase is the end of the night that Saturday. I was being looked at for all the wrong reasons. Gone were the smiles because of my sequined Minnie Mouse ears. The smiles were replaced by looks of pity, worry, and curiosity. I don’t know the last time my knee has bothered me so badly. I know that in my lifetime, it has gotten to that point, but not in recent memory. Limping would be too weak a descriptor. I was well-beyond gimpy. Literally struggling to walk, each step caused excruciating pain as I practically dragged my right leg alongside me. I kept on keeping on, though, as I always do. I smiled through the pain but winced in the shadows. I was careful to tread gingerly, but to keep a brave face. After all, it is embarrassing to be stared at for the wrong reasons. I much prefer when I’m rocking a little black dress and feeling fierce, to barely being able to walk and feeling broken. The worries flooded through my brain: what if my knee locked up or gave out? Would I have to get a scooter? Would Mike have to carry me out of Disney World? What if this was a literal breaking point and I’d need to go to the hospital or worse yet have an emergency surgery? I didn’t know what to do, but I wasn’t about to let it ruin our trip. Luckily, it didn’t. I got through the night mostly-unscathed, and after a good night’s sleep and some meds, was relatively okay the next morning.
But that next day, the situation still lingered on my mind. It’s such a helpless feeling, being in that much pain, or physically unable to move your body in the ways you want it to move. Why can’t our bodies just follow the rules and work like they are supposed to? It is such a stark juxtaposition to be in the happiest place on earth, looking to the naked eye like a happy-go-lucky, vibrant, fashionable young woman, but to feel like you are crippled. Everyone seemed to move better than me: not just younger, healthier, or fitter folks … but everyone, from elderly couples to overweight people and beyond. I felt ashamed and I felt that my husband was probably embarrassed. He said he wasn’t, and deep down, I’m sure he’s telling the truth … but that thought kept creeping in: that the way I was walking (or, rather, trying to talk,) was embarrassing to not only me, but potentially to him, too. He said he felt bad for me, but wasn’t embarrassed. While I appreciated the sympathy, it’s also hard to hear that people feel bad for me. I’d rather be viewed as strong and capable, healthy and fit, full of life and full of fortitude, rather than the perennial sick girl, inviting pity with each health mishap.
Of course, my knee bugged out twice more on the trip. But you know what? It didn’t ruin the trip. In fact, it’s one of my favorite vacations that I’ve been on. I think that’s a parallel to these illnesses overall: they can temporarily put a damper on things, or may be an inconvenience, but they don’t have to ruin your life, tarnish happy memories, or prevent you from doing things that you want to do, need to do, or love to do. Yes, my knee has problems. Yes, my knee made the end of our night at Magic Kingdom a little more difficult. But I still had a blast, enjoyed myself, and made it through. My knee problems and my health overall are a nuisance. But they’re not a be-all, end-all. I’m still here, I’m still alive, and I’m still thriving in my way. My physical health struggles won’t define me. I’m going to continue to make memories, and I’m going to choose to focus on the positives. How do I do that? Easy. It’s an active choice. Here were my options and the ways in which I chose to view the situations at hand: At the Magic Kingdom, luckily my knee didn’t “give up” until towards the end of the night. To me, that was a gift and a blessing — the “silver lining,” if you will. Could you imagine how much worse it would have been if it was acting up all day? The same thing happened the next day: it wasn’t bugging me until the evening when we were walking around Downtown Disney. It stunk, but at least I made it through most of the day prior to that walking somewhat like a human being. Yes, it hurt a bit on Monday, but you know what? We were traveling home. I wasn’t missing out on anything fun. No one is happy at the airport, so I wasn’t the only one suffering fatigue, misery, stress, and boredom. The most important positive is that I wasn’t alone. I had my husband who both literally and figuratively supported me. He helped me carry shopping bags at Downtown Disney and luggage at the airport. He was holding my hand or linking arms with me at the Magic Kingdom, anyway, so I was able to — again, literally and figuratively — lean on him. That made it all just a little bit better.
And while it was a stark reminder that, yes, I’ve needed and qualified for a knee replacement for years and will one day undoubtedly have it done, I will not look back at photos of this trip and see sickness or pain. I will only see happy smiles, love, and the magic that is Disney.