Lessons Learned from Living with a “Handicapped” Brother

1) BE GRATEFUL.

For as long as I can remember, my brother’s chair has been off limits. That’s just the way it was and the way it always has been. My parents never really denied me anything…except the right to sit in my brother’s chair.

In fact, I took the rule so seriously it was the cause of my first “fight” as a young kid in preschool. One of my classmates thought it was okay to relax in my brother’s chair. I disagreed. He wouldn’t listen. Things got rough. In our young minds it was a showdown between Ali and Frazier, when in reality we just rolled around on the ground.

Gratitude is the first of the lessons, for I know I will never forget learning it. I distinctly remember being at home as a kid and deciding it would be fun to roll around in Roque’s chair. He wasn’t using it at the moment and I was bored. No harm. No foul.

Or, so I thought. When my mother entered the room, I immediately knew I was in the wrong. Yet, to my surprise there was no screaming that day. There were no harsh words. Not a single one. Instead, my mother raised a question.

“Jacob, can you go get me a glass of water from the kitchen in that chair?”

Though it caught me off guard as an odd request, I complied with the challenge. I wheeled myself in the chair to the kitchen. Right up to the counter I glided to retrieve a glass from the cabinet above. That’s when I encountered the first problem…there was no way I would be able to reach the cabinet door from my sitting position in the chair.

I tried once, and I tried again. All in vain, for the fact was simple. The cabinet was beyond my reach.

My mother observed silently from across the room, knowing from the beginning my attempt would prove futile. But, she wasn’t done. There was still a point to be made. My mother walked over to where I was, grabbed a single glass from the cabinet and handed it to me encouraging me to continue my task.

From this point I put the glass in my lap and wheeled over to the refrigerator to fill it with ice and water as requested. The glass now full, I turned to face my mother who had returned to her place at the dining room table and was waiting patiently. As I considered my options, I once again found myself caught in a dilemma. How do I wheel myself over to my mother without spilling the glass of water?

I struggled for a while, but eventually figured out an unconventional method that would very slowly but surely take me across the room. Without the use of my legs, the task wasn’t nearly as simple as I first anticipated. The challenge completed, I silently waited for my mother to speak.

“Now, do you see why we don’t sit in your brother’s chair? Was it fun to struggle like that for a simple glass of water? I know it may seem like it, but that chair is not a toy, Jacob. It’s not a plaything for fun. It’s a necessary aide for your brother. Do you understand?”

In that moment, for the first time I truly did understand. Suddenly my eyes were opened to what I failed to see before. In the past, my young innocence and ignorance led me to believe the chair was a toy. A luxury. I mean, Roque never had to walk anywhere. I remember being a small child not wanting to walk and I felt envy towards my brother who was wheeled around everywhere.

How foolish I felt now.

This experience, my first in the virtue of gratitude, hit me like a bag of bricks. It was something so simple that, until then, I had never quite understood. My mind began to flood with the incredibly long list of things I had to be grateful for. Starting with the unconscious capabilities that allow me to live the life I live. Until then, it never occurred to me that my brother would do practically anything to be given something I overlooked and never even considered a gift: the ability to walk, if even for single day.

From that point on, I’ve made it a point to do my best to use all of the gifts I’ve been granted to the best of my ability. From walking to talking. From reading to thinking. The abilities entrusted to me were given for a specific purpose and failing to exercise them is the waste of all wastes, because someone somewhere would trade anything for that which I have been freely given.

The bottom line is, I’ve already been blessed with immensely more than the masses of the world. While I may believe I deeply desire certain luxuries day in and day out, my wants are easily eclipsed by the desire many men have for the simple things I already posses. So, I’m of the opinion that even on what I consider my worst days I still have no real right to complain. If I were to spend 24 hours per day each day giving thanks for all I’ve been given, I wouldn’t even put a dent in the list and it would remain unexhausted.

Sometimes I fail, but I try my best to steer clear of complaint and feeling sorry for myself. All because when I stop to think about it, there’s countless others out there that have real reason to complain. The real kicker though? The individual I know that actually has a legitimate cause for self-pity never sinks into the pity pit. He stands tall happy with what he has and grateful for what he’s been given.

The man who taught me to be grateful is named Roque Lira, and he is my brother.

2) EMOTIONS ARE OKAY.

Growing up I learned early on to hide my emotions. Like a stonewall I stood in all situations. Happy, sad, excited, frustrated or angry, it didn’t matter. Nothing showed. The entire range of human emotion boiled down to one expression of indifference. That’s just the way it was supposed to be. “Boys don’t cry,” is what society would have us believe.

I wish I could tell you that over time this habit has faded into my adolescence. That as I grew into young adulthood I embraced the fact I felt, but more often than not I still keep most of my feelings to myself. Feelings fizzing just below my outer façade.

Luckily, I have a brother that pushes me to embrace my emotions, because he shows me that emotions are okay.

Of all the people a I know, I consider my brother to be the most genuine. Without exception, Roque is genuine. He does not hid what his feelings. He does not hide his thoughts. When he is joyful, you know. When he is angry, you know. There’s no guesswork needed and no mystery to be solved. He feels and he expresses.

I think that is a beautiful thing!

Wouldn’t be great if we started being a whole lot more honest, first with ourselves and then in turn with those we interact with? I think so. I mean don’t get me wrong, I’m the first person to admit there’s a lot of people who wouldn’t be happy with me if I suddenly became 100% transparent with how I feel.

But, I’m going to go out on a limb here and suggest that we do much more long term harm by hiding our true feelings.Keeping how we feel hidden hinders us from creating deep, meaningful and trusting connections with those around us. Over time, it begins to breed frustration and resentment. Think about it. Do you have someone that angers you simply because you never quite know what they are feeling or thinking? Despite your best attempts, their walls remain impenetrable? If you know me personally, I’m probably that person in your life. I know, and I’m working on it.

So I know feelings are scary things to some of us, but at the end of the day emotions are what set us apart in this world. Our abilities to feel, to understand our emotions and to freely express them are defining characteristic of our humanity. This is precisely why we should not fear our emotions, but rather consciously choose to harness them in an effort to positively impact our environment.

When was the last time you explicitly expressed your excitement for a friend’s achievement? When was the last time you allowed yourself to be open and honest with your co-worker about your frustration with their work? When was the last time you took time to express that gratitude we mentioned earlier towards someone in your life you are truly thankful for?

If you have to think about it, my opinion is it has been too long. There’s no better time than now to begin again. So, here’s the challenge. If you’re happy, smile! If you’re sad! cry. If you’re frustrated, vent! If you’re joyful, shout!

A last thought before moving on. If you’re unsure where to start, start with love. A loving life is worth living, so live a life worth loving. I believe love is more than just a feeling. It’s an action. A verb. Even if you believe you aren’t a lover, you are. We were made to love. The question is, what are you loving? But, I’m getting ahead of myself. That’s another topic entirely. The bottom line here is, emotions aren’t all that bad. In fact they are liberating.

The man who taught me to feel is named Roque Lira, and he is my brother.

3) WE ARE WHO WE ARE.

Now for the third of the big lessons my brother has taught me. This one is simple and short, but profound and powerful. It is simply: we are who we are.

My brother is unapologetically Roque Lira. 24 hours a day and 7 days a week each and every week of his life. He is who is he. He knows it. He accepts it.

Roque has this stunt he pulls from time to time where he very deliberately brings light to the fact that he is disabled. For example, once we had some friends over hanging out. We were in the living room when one of the guys got up to go get something from the kitchen. He asked my brother, “Do you want anything, man?” At that point, my brother says, “Well, yeah! I could use something to drink, since I can’t get it myself. I mean it’s not like I can walk!”

Silence.

I mean when you’re talking to a kid in a wheelchair, how in the hell do you respond to that? This guy had no idea and stood frozen unsure what to say, if anything. Luckily I started laughing and broke the pause, because I knew what Roque meant. Otherwise, those guys probably would have wallowed in embarrassment all night.

See, I knew what they didn’t at the time. My brother was joking. Roque has reached a deep understanding and acceptance of his condition. Instead of letting his disability hold him down, he embraces who he is and it raises him up. Instead of a crippling circumstance, cerebral palsy is a key part of who he is.

That’s why I love the kid with everything I have. Roque understands who he is and is okay with that. That doesn’t mean there is no room for improvement, change or growth. There’s always room for that. It just means there is no room for self-pity. He embodies everything I wish I was more of. From the outside looking in, to some it appears he is missing something. Missing strength. Missing coordination. Missing intelligence. But what they don’t know is that he is completely whole in all the ways that truly matter in the long run.

The man who taught me to be who I am is named Roque Lira, and he is my brother.

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