Yesterday I saw one of my biggest fears. As I sat in the front passenger seat of my car, waiting for my husband who was in the store, I saw everything I have been afraid of since I learned what hemiparesis meant. When I woke up in the hospital two years ago, it took me a while to register the full extent of things. I knew my left side didn’t work anymore. I knew I couldn’t feel it, I knew I couldn’t just will things back to normal. I don’t know if it was denial or some form or degree of shock that sheltered me mentally and emotionally from this new “chronic” deficit for those first few weeks but for whatever reason, I seemed to accept things as they came. I really think the morphine had a large role in this ability to blind myself from the real issues at hand versus the ones I questioned and fretted over.
Was my first worry, “will I be able to hold my baby if I’m able to have him?” The answer is no; that was not my first nor my biggest worry. My first concern was Black Ops. We had just downloaded the latestest map pack. . I was good; I was addicted. I miss playing still. I look away from commercials; I torture myself with G4 and their game/gameplay updates. I shutter with the fantasy of holding a PS4 controller with two hands one day. My first occupational therapist never gave me hope that I would be able to play. My rehabilitation medicine Dr. (whatever his “lab coat” said his title was) was concerned about seizures and confused about why I was not worried about seuizures. Truth was, I never had one before that I knew of. Why would I worry about seizures? My first physical therapist knew how I felt. We talked about gaming a little. He was awesome. Out of the three PT’s I’ve had, he was definitely the best.
One day during therapy, Pierce ( my first PT’s name), told me I needed to start squats so I could maintain muscle if anything. I didn’t know what he was talking about. My legs were still in good shape. “As soon as I start walking on my own again, I won’t need to worry about muscle tone.” Pierce gave me that look all doctors give you when they really don’t want to shed false hope upon you and they are considering ripping what little hope you have away from you. I don’t know if they do this so you keep in touch with reality or to be mean to you in your fragile state, but it’s a look I learned early on how to read and understand. My chances of “walking on my own again” are actually pretty slim. It’s a hard realization but it’s one I’ve either learned to shove away or deal with. I’m not sure which because sometimes thinking about it really tears me up inside but I also know some things just are the way they are…but there’s always hope; right?
What Pierce meant was that eventually, over time, my muscle in my left leg would thin out from non-use and I’ll have a skinny leg. Anyone being told this, I don’t think would really consider what is being told to them. But then again, my mind is different from a lot of people. I didn’t instantly imagine myself as a woman with one bone-thin leg and thigh that even a starving zombie would turn down. No; what I saw in my still throbbing and foggy mind was me with one super hulk-sized thigh, a steel calf and one average, eh-sized leg beside it. I was more worried about my right leg bulking up than my left leg slimming down! Like I said, my mind is different from a lot of people.
Time goes by and things happened and situations changed. I kept up for a good while but I am too easily discouraged and when I have a setback, it is always huge regardless of the actual size, cause and/or effect of the setback. Outside of physical therapy I realized I had a lot more limitations than I ever thought possible. Life can be very difficult for a disabled person. I lived until I was 27 as a somewhat “normal” woman and suddenly I was with a new body that I couldn’t control. It’s not an easy transition. What made my biggest setback so brutal yet so important to let pass was that it was entirely in my head. My emotions ran wild, my mind had no boundaries, no rules, no filters, no processes. It was like learning to not only be a functioning part of society (my household) but to do it with the mindset of an adult. It was tragic to say the least. I went through immense pain emotionally. A total collapse of my being but it had to happen.
Because of this “setback,” which really feels more like an implosion that destroyed the lesser functioning structure of my mind; kind of like seeing an apartment with little space and you discover it’s because there’s too many walls so you decide to tear them all down, creating more space. Instead of acheiving this methodically or with proper guidance, the walls just came down, wind rushed in and scattered everything around. I couldn’t focus on my therapy when my head was so cluttered and in such disarray.
Here I am now with only a handful of attempts tried since to mend myself with my own hands. Wouldn’t you know, it’s not that easy? I don’t know what I’m doing and neither does my husband. He offers to help all the time but never offers when we actually have time (it’s always late at night or some rare time we actually have something to do). I love him to death but he doesn’t seem to understand what “can you make sure I’m aligned?” means. So, I would prefer him not to help anyway (ha-hah). I found this site a few weeks ago, I’m not sure when, and it got me to thinking again about the whole “be your own hero” crap people toss at you when they have no answers and thank God it’s you and not them with the problems. So I started doing some quick and easy things like the squats and some shoulder rolls (whatever you want to call them) in the morning after I put on my bra. It’s oddly the most convenient time of day.
Coincidentally, because, alas, everything in my life is either coincidental or ironic, only days after starting this quick new rountine, I find myself in the parking lot of our local Cricket store in the car with the kids, waiting for my husband to finish a quick stop there and what do I see? I see a man backing out of the stores door pulling at the handles of a wheelchair. Now, (I’m sure this has always happened but I’m just more aware of it now) since my own brief life on wheels, I am always analyzing, trying to diagnose every wheelchair user I come across. The man reached the sidewalk and turned the chair so he could roll her down over the huge step (why no ramp? I have no idea). Right away I saw the signs. A hemi! Just like me! Of course, my eyes become tiny as they investigate the scene before me from my front passenger seat of the car. I notice her leg, the first clue. Her left leg was positioned high and over the right leg and it was damn skinny. She was damn skinny. Her left arm just laid limp in her lap. She looked like how I feel on my “tight days.” There’s days where I feel like there is just bone. My whole limb is just solid and rigid as if the flesh and muscle and all the meat that holds everything together is no longer there. This woman in her wheel chair looked like that and I found myself torn between the idea of sitting there and staring at her while my mind battles with scenarios and possible reasons why and connections and getting out of the car and hobbling over to them with my wooden mans can to ask the many questions stabbing at me. How long ago did it happen? What happened? Has she had therapy? How long was she in therapy? Did she give up or did they tell her to give up? So many questions that were so rude and wrong to ask, especially to a stranger to whom it might appear as though you may have been stalking them to some degree, however minor. Plus…I had the kids in the car with me. I couldn’t just leave them there while I went and dug my nose in where it didn’t belong.
So there I sat, no I’m not down, keep reading. So there I sat, questioning whether or not they might feel me staring at them; wondering if she thought sitting there so awkwardly in her chair was less noticeable or better than actually sitting in the chair as it is designed. I noticed the guy pushing her was young. Maybe her son or home healthcare worker. I noticed her chair was new and it was also the kind meant for us one-handed folk as it had that extra bar in the wheel to make turns with one hand and without using your foot (lucky lady). I watched him open the door for her. And then I saw it…..my biggest fear since my stroke; since finding out if I wasn’t going to be like this my whole life I was going to be like this for a long time. This woman had to be lifted out of the chair and practically placed into the car.
A lot of people don’t know what it’s like to have a physical deficit and I’m jealous of those people but not entirely envious. Everyday I feel like I am fighting to prove the same things over and over and every day I am reminded of my limitations but every now and then…I find that because I have tried so many different times, I eventually overcome something. Sometimes it’s something little and sometimes it’s something so big I feel like I actually topped a mountain but it really doesn’t matter the size because it’s all about accomplishing something when everything and everyone tries to force you out; and pushing yourself forward; and determination and challenging your fear and saying fuck but getting the job done any way you can because you know you can…one day.
I wonder how long it was before she gave up so completely. How long do I have left before it really is too late? I have more hope than confidence and I’m not sure that’s entirely a good thing. I just don’t want to be like that woman butso I better not lose my hope but when exactly does hope become false hope?