Brotherly Love

I went for a walk with my brother outside the other day. I’m still using the walker for outside environments–some days it seems I make more progress than other days, which is perfectly fine. Hopefully soon I can get to using my Loftstrand crutches again for the outside environments. Oddly it can sometimes feel like I’m falling behind. Weird, right? Especially since every SDR journey is different and goes along at its own pace. I would only be falling behind on the goals I set for myself, rather than those goals set for me. Every day I tell the voice in my head to be gentle. There’s a good chance I’m doing better than I think I’m doing.

My brother went ahead of me up the sidewalk, and I called out to him. “You can’t leave me unaccompanied.” In my experience, using the walker inside is very different from using it outside. The sidewalks are uneven, the walker’s front wheels can get caught in different grooves in the pavement, and I can fall easily. Falling is a big no-no, at least the way I see it. So, if I’m walking outside I need someone to be beside me. I also should be wearing a gait belt in case I do fall, but admittedly I forgot this time around. My bad. All the more reason my brother should’ve walked alongside me, right?

He walked back over to me and said, “Why not? It’s a challenge.”

There’s definitely a chance that during any other time and in any other context, I would’ve agreed with him. I understand that perhaps he was trying to push me a bit. Maybe this was his way of being encouraging. Maybe he was helping me be unafraid. But, since I’m currently recovering from major spinal surgery, I went ahead and led with a firm and resounding NO.

“It’s not a challenge. It’s a safety issue,” I told him, hands securely on my walker. He proceeded to stand by his own point, and then I added, “You should really trust my authority on this.” It wasn’t the first time I’ve had to voice such concerns, but it was among the first of doing so with a member of my immediate family. Honestly, I wish I could say that in general and as a whole, my family “gets it.” In other words, I wish they understood what I see as some of the most basic concepts that go into living with cerebral palsy: how much energy I expend getting from place to place, the reality that the energy I expend is probably much greater than a non-disabled person, how certain tasks that others may view as “simple,” are just a tad more complicated for me to perform, like carrying an open cup of water across a room….or walking with anything in my hands, really. If you make my hands/arms occupied or unavailable, you’re removing my defense mechanism in case I lose my balance or my knees, legs or hips give in, causing me to fall.

My family has been beside me my entire life, seen me through countless obstacles, supported me and cheered me on, my brother included. So, knowing all that and since they’re my family, they’d “get it,” yes? Nope. Here’s what they don’t understand….

My recovery from surgery adds an extra, very important layer to all this. It feels like everything has been reinvented from the ground up…body mechanics, the exposure of muscle weakness due to absence of spasticity…the list goes on and on. Nothing is as it was. I don’t mean that in a bad way at all. It’s like my body’s rewiring and learning how to communicate effectively again. With all this adjustment, I still feel extremely fragile and vulnerable. I would say that I’m almost back to my baseline, where I was before surgery. Maybe. A hard maybe. Could it be that I’m in a better place physically than I’m giving myself credit for? Am I underestimating myself? Perhaps. I do that a lot. Could it be also that my fear of falling and getting hurt is holding me back? Pretty big possibility there. I wish that fear weren’t so real, but it is. I mean, I’m probably gonna fall eventually. I just don’t want that day to be today.

Let me just say that I love my big brother. He’s one of the goofiest, kindest, gentlest souls around. He’s always been my guardian and protector. But in this case, he was wrong. He was wrong to leave me while I walked up the sidewalk, and he was wrong to pose it as a challenge when I viewed it as a threat to my safety. You’d think that after nearly 26 years living with a disability, my judgment of situations and scenarios like that one would hold some kind of weight. If he was trying to push my limits, fine, but understand that I know how far I can go, and that should be the final word. If he were trying to make me brave, I appreciate it, but don’t force the issue after I told you no once already.

My SDR journey has taught me so much, three months in. The biggest lesson might be that this experience in particular is a tough one to relate to if you haven’t gone through it yourself. That’s ok. It’s just tough when the person or people misunderstanding you are the ones you thought understood you the most.