It was definitely one of my “disability” days, the kind I struggle with a little more often than I would like. When I dropped something on the floor, couldn’t access something else on a high shelf in the fridge, and had an itch on my foot that I couldn’t reach to scratch, all within the span of a few hours, I just about had a meltdown.
I remember it well. Almost five years ago, I was overwhelmed and had nearly reached my limit. The phone rang across the room, and after a few minutes I got the following voice mail:
“Hey Lorraine, it’s Brandon. I know we have a dance lesson scheduled for tomorrow, but something came up and that time won’t work for me, I have some time on Wednesday. Let me know if we can meet then.”
I almost threw the phone out the window.
I wasn’t mad at Brandon specifically, just feeling woefully misunderstood.
Brandon was my new dance instructor. I didn’t know him very well at the time, and he also didn’t know me. Consequently, he didn’t’ know much about my schedule. Many people don’t think about it. Since I don’t drive, when I make an appointment with someone, I am not simply scheduling my time. I have to make sure that a caregiver shift is coordinated around it as well. That takes effort and can’t easily be adjusted. Last minute changes can become a nightmare in a heartbeat. All it takes is one break in that chain and plans that I was looking forward to take a nosedive in the dust.
I sat with my rage for a while, letting myself feel the frustration that fueled the fire in my belly. It wasn’t fair. Once again, the circumstances of my disability threatened to prevent me from doing something I wanted. My emotions said that everyone else got to hop in the car on a whim, and when schedules need to be rearranged, that only affects them alone. Why not me? Some might think that after being in my circumstance for decades, I would get used to the disappointment. But it never gets easier. Not even a little bit.
When my anger cooled, I decided to call Brandon and explain the situation, having hope that I if did so, we could avoid this aggravation in the future. As soon as I heard his voice the drama in my heart drained into the conversation, giving him details about schedules, caregivers, and circumstances.
He was quiet for a long time.
In the silence, my mind was going crazy. What was he thinking? Would he tell me to just get over it, that he was giving me all the time that he could? Since he couldn’t relate to my situation personally was he going to blow off what I said and politely disagree?
When he spoke, his words were unexpected. “Wow”, he said gently, “being that dependent on people is really difficult, isn’t it?”
“Yeah,” I said simply. “It is.”
“Will you tell me more about that?
I took a breath.
“It just gets old when I can’t put on my own shoes, need help in the bathroom and have to be helped in and out of bed every day. I understand that things are probably never going to change, but I fight feeling like I owe people something for providing me with assistance. I would owe something huge if I chose to have my disability, but I didn’t. As much as I appreciate the help that I am given, I feel strongly that I don’t have to be grateful for it. But sometimes it feels like I should be.”
Brandon took a minute to process what I said.
He spoke slowly. “I understand what you are saying, I really do. Let me give you a little different perspective. When I help you in and out of the car for a dance lesson, or put your feet on the footrests in your wheelchair, or push you up a ramp, I don’t keep a tally. I’m not doing those things with the expectation that you owe me anything in return. I do them because they help me be the kind of person that I want to be. That is my motivation. Anybody who tells you anything different is helping you for the wrong reasons.”
It is hard to describe how hearing those words made me feel as I soaked them in. Validated. Understood. Accepted. Like my feelings mattered.
As a woman with a disability in my 40’s, I have been too often patronized and patted on the head. People routinely talk only to those that I’m with instead of speaking to me directly or dismiss my feelings because they think they know better. Brandon made me feel important. In my world, that means everything.
In the years since that conversation, Brandon has become one of my best friends, serving as my dance instructor, mentor, and the younger brother that I have always wanted. He has helped me in countless ways.
At his wedding reception, Brandon rearranged the order of some events so that he could dance with me before I had to leave.
When a tree in my backyard was struck by lightning, Brandon and his wife rallied the youth group at their church and they raised money for its removal.
Back in March, I was hospitalized with a bowel obstruction two days before we were supposed to go to St. Louis for a dance competition. As I was being driven to the emergency room, I called Brandon, heartbroken. Through tears, I told him that the worst part of what I was going through was not my illness, but the fact that I wouldn’t be able to dance. I had been looking forward to it. Then it was gone. He gave me his word that day that he would find another competition that we could travel to; all I needed to focus on at the time was getting better. We entered a dance competition in Omaha at the beginning of June, having never done so before. Brandon found that event because I hadn’t been able to dance in March. He kept his promise.
And there have been so many occasions when Brandon has talked me through a struggle when my life just hurts.
When I try to thank him for his kindnesses, he usually shrugs it off and says something like “You are welcome. I’m glad it worked out.”
I cannot express the number of times I have turned over in my mind the concept of not keeping tallies since that initial conversation with Brandon many years ago. It has made me examine my own life and has slowly, subtly changed my ways. Even though I cannot do much to help people physically, I am more accommodating with my caregivers than I used to be and I now make a deliberate effort to give people compliments and make them feel good about the interactions that we have.
So the question is …who gets more benefit, me helping people or other people helping me? That is hard to answer. I would have to say it’s a tossup.
I don’t keep a tally.