Quick recap- I have a chronic illness called Postural Orthostatic Tachycardia Syndrome (POTS) that makes standing up (and sometimes even sitting up) rather difficult. So, instead of spending the rest of my life on the couch (which was definitely an attractive option), I decided to join my husband on vacations and excursions via wheelchair. My wheelchair has a name- Snooki, and Snooki seems to generate a fair bit more attention than I would like. However, the hilarity that typically ensues is definitely blog-worthy, so in an attempt to keep laughing at life (instead of crying, which is sometimes the only other option) here is my newest observation from my recent time spent with “The Snooks.”
Observation- I’m not sure I should ever hang out in Snooki alone.
Now, obviously, this can’t be a rule for all wheelchair users. In theory, it should not be a rule for me. One of the frustrating parts of chronic illness is having limited time alone, so when I’m in Snooki I feel a new sense of freedom. I like being able to tell Joe to go on into a store of his choosing while I browse through something nauseatingly girly. However, when I tried this recently it didn’t exactly work out.
The first interesting situation wasn’t too bad, but it made me laugh. Joe went upstairs in a store while I stayed on the main level in a tacky little t-shirt shop. While I perused the collection of tackiness, a man kept walking behind me offering to help me. Now, if I had been struggling with opening a door (due to my Snooki-boundedness, not because I typically struggle with doors), I can understand his offers. But he just kept asking if I needed a push which I would politely decline. After a few minutes of this the gentleman’s friend asks him why he keeps offering to help me (all within earshot of me), and the man replies, “I don’t know; the wheelchair is kinda hot.”
I about lost it. Here’s the thing. I wasn’t afraid this man was going to kidnap me and roll me away to a secluded place. We were in a very public area, but it was just so darn funny. I am thrilled that there are people who find mobility aids attractive. But . . . I’m not sure being overly helpful in souvenir shops is the logical way to have a love connection.
My other experience was a bit more traumatic at the time. Joe, Snooki, and I were walking through the downtown area where we were staying. We had two stops left for the evening- buying water and ice cream. Then it started raining. So, Joe went into a convenience store for water while I went next door for ice cream. Good plan, right? Um, no. As soon as Joe turned loose of my wheelchair (which he had been piloting until this point) I started rolling down a hill. No big deal. I just needed to grab the wheels and pull back- I’ve got this. Except . . . the wheels were wet from the rain, and I couldn’t hold on to them. I started rolling down the hill, past the store I was headed into, and toward the road. I couldn’t stop. Clearly, Snooki was demon possessed and had decided to throw me into traffic. I finally got her to stop by putting my feet down onto the sidewalk in front of the wheels (Ouch!). I was so absolutely mortified at this point that I kept my head down as I guided myself with my feet toward the ice cream store. Then I called Joe (in a voice quite similar to a wail) and asked him to come get me. The ice cream place workers apparently thought I had just come in to recover my runaway wheelchair incident, because they kept skipping over me taking people’s orders. I’m not sure I have ever been so relieved to see my husband walking toward me!
I started this post with every intention of telling five stories, but I realized this was going to get too long for anyone to actually read. So, I’m saving a couple for another day when I’m not still recovering from a trip.
Traveling in Snooki has given Joe and I a piece of our life back. After my illness began, I thought our life as a normal couple was over. I imagined a life of watching television and going to doctor appointments. And, while those are still large parts of our life together, using Snooki has allowed us to do other things. As for not being very capable of using Snooki on my own, who cares? Yes, I need to learn a few tips and tricks for when I am alone, but for the most part Snooki exists to allow me to keep up with the people with whom I want to experience life. If I have to ask for a push (or in some cases someone to pull me back from a downhill plunge), it’s not the end of the world.
Peace, love, and health, friends.