3 Things I learned about Purpose from a Mentally Handicapped Brother
The case for a life driven by purpose
A little over a decade ago, my family celebrated my older brother Kevin’s 21st birthday. My parents splurged for this celebration — there was a catered meal for him and his friends, a booked out event room and a guest list of over 100 people. Gold ribbon decorations hung on the walls and cakes with presents were lined up on a banquet table like it was someone’s wedding.
Truth be told, it was a little unfair. I’m pretty sure my parents didn’t even realize when I turned 21 a few years later.
Prior to the event, we had helped Kev prepare a speech to give to everyone. After a prolonged period of him hiding in a corner out of shyness — his face lodged firmly between the intersection of two perpendicular walls — he was able to finally express his joy in words.
“You are all my friends. You are gorgeous (his favorite word). I want to keep you all forever. Thanks mom and dad, let’s have fun!”
After grinning from ear to ear he promptly proceeded back to his place of comfort at the intersection of the walls.
Not bad for a guy whom doctors said would never live to see his teen years. Not bad for a guy doctors said would never walk, talk, or ever be able to communicate effectively with other people.
Not bad at all.
My brother’s condition has only been documented 21 times in medical history. So although I would have loved a catered meal for my birthday, I can see why his was more deserving of a special celebration.
In many ways, I came at our family’s story as an outsider. I was last to join, after all. Though I considered my childhood challenging, once I began to learn what my parents went through I quickly changed my tune.
My mother’s recollection:
My son underwent surgery for hernia the first month he was born. He was tube fed that entire time and his weight decreased from an original 6 ½ lbs. to 5 ½ lbs. For the parents out there, imagine seeing your child lying in an incubator, isolated, motionless, and obviously suffering.
Our emotions and feelings fluctuated violently that first year. My husband and I tried to replace all our anguish and desperation with love and hope but it was like banging our heads against a brick wall, and there was no end in sight. Every day was a struggle; it was mentally taxing to understand that this would not be a temporary issue, but an indefinite one. We fought our emotions and tears and tried hard to see a silver lining, we really did.
I still remember that day when the diagnosis was released. The doctor at the Children’s hospital approached us with a solemn face.
“Mr. and Mrs. Lee, your son will be moderately to severely handicapped — for life.”
We would have to face the fact that the doctor’s firm, direct answer implied our son would never succeed in society, never have a wife or kids, and would be forced to depend on some form of a caretaker for the remainder of his existence.
He would never function like a normal child, and there was nothing we could do about his diagnosis — nothing in the world could save him from his mental retardation.
Amongst all my learnings, one big thing stood out to me about my parents. After they had my brother, they had options. They didn’t have to keep him. They went from arguably the highest high in life — conceiving a child into a loving family — to arguably one of the lowest lows. All they had to do was sign a sheet of paper, give him up to the government, and those lows would have disappeared. Faced with a doctor encouraging them to sign, they made a decision:
We couldn’t. We loved him. We brought him into this world and it wasn’t his fault that he was born with this condition; he did not deserve to lose his parents without even knowing them.
And so, they decided not to sign. They decided at that moment, that trying to raise him to have as normal a life as possible — that was a purpose worthy of the rest of their lives.
Growing up, I used to envy Kevin. His life is so simple — wake up, listen to Avril Lavigne, eat, hang out with friends, sleep, rinse and repeat. He needs so little to be happy, and has care provided for him without having to lift a finger.
How many people would lust for Kev’s life? It’s easy! Honestly he had me pretty jealous.
Me on the other hand, I worked tirelessly because I wanted to try and make something of my career. I wanted the works — money enough to retire early, achievements to mark my positive impact on the world, two and a half kids with a white picket fence, and a lovely vintage record player with Sinatra on repeat. This was my purpose.
1. Purpose is a privilege
Tony Hsieh in his book Delivering Happiness discusses why his company Zappos is so successful.
He understands that when employees dread going to work it’s because they do the same thing every day, with very little progress towards an overarching goal. Tony feels this so deeply that he instigated a movement to give his employees reasons to better their skills with weekly and even daily goals, leading to pay raises.
The employees at Zappos would feel a constant sense of purpose because they knew that what they were doing was not only making themselves better, but also the company.
The company in turn, by helping employees progress, progressed itself. The most successful organizations in the world are the ones who have everyone aligned with a common, important purpose—a purpose which drives them to progress towards a goal.
I believe much of the fulfillment of life revolves around this very principle — having a purpose that drives you to achieve things you would otherwise have not.
Which means, having a purpose itself is actually an incredibly valuable thing — a thing that not everybody has.
My brother, he’ll probably never be given the opportunity to be driven by a purpose like that.
For this reason — I realized that Kev’s life is not actually as sweet as it seems. Some people find a purpose for themselves, others like my parents have it thrust upon them. Regardless of either, having a purpose is a privilege. If you have one, use it to drive you— just as my parents did.
2. Live a purpose driven life
Being more heartful
I know, heartful isn’t a word. Even Medium is telling me it’s not a word. It has one of those red squiggles underneath all the “heartfuls” I’ve typed. It’s hard to define what I’m trying to say, so I’ll illustrate with a story.
A few years prior to my brother’s 21st birthday my parents were out of the house, and they told me to walk with Kev to the neighborhood restaurant to meet them. They were only a ten-minute walk away, so I got Kev to put on his shoes and jacket and we began walking.
While on the sidewalk, my brother tripped on an uneven segment of pavement and fell. He scraped his knee and it began bleeding. He started crying. He’s bigger than me, but I was able to help him limp back home where my mom was waiting — I had called her and told her what happened.
She was extremely concerned and got out the hydrogen peroxide, the polysporin and all the other ointments that a cautious mother owns to fight infections. She began applying it, and asked me why I wasn’t looking out for my brother. “You know his condition, you know that he requires constant supervision,” she said.
I stood there, watching my brother sniffle his tears, wincing on occasion as my mom carefully applied all the medication with Q-tips. My heart had never felt worse. I felt so guilty, so pained that my brother had hurt himself, and it was because I was lost in my own thoughts, not caring or paying attention to him while walking. It was because of my negligence and ignorance that my brother would now be walking in pain for the next few weeks.
I can’t really explain the feeling that arose from that incident, perhaps it was a determination to, from this day forward, never again let him suffer on my behalf. Perhaps it was that I cared more for his well being and was more aware of his weakness than I had ever noticed before.
Perhaps, it made me just a smidge more heartful.
Being a bit less selfish
My purpose used to be solely self-serving. Since I’ve matured, I realize now that there’s a catch to my life. I’ve come to the realization that my parents will one day no longer be here, and there will come a day when their purposeful journey will come to an end.
When they leave, no doubt I’ll be in a lot of pain. But guess what, hopefully by that time I’ll have a family, a stable income and support to help me continue trotting along in life. My brother will feel the same pain, but he won’t have the same figures to turn to — the loving parents who gave up their lives to see that he would have as good a living as possible.
My mom won’t be there to put his seatbelt on or hold his hand when he crosses the street. Nor will she be there, frankly, to pay his bills. When that day comes, my life will take on a very different purpose.
I took a gamble with my career because I accepted the fact that my choice came with financial risk, and I was ok with it. But my brother shouldn’t suffer because of the decisions I’ve made. Which means my once simple purpose of chasing my dream will have another, more practical catch — to provide for him. Physically, mentally, and financially.
A purpose makes you unstoppable
As we know from movies — especially the ones with action tag lines like “There’s nothing more dangerous than someone with nothing to lose” — when people find a purpose it’s hard to stop them.
When Kevin came into the world it was incredibly hard on my parents. Could you imagine? First time parents, excited to bring new life into this world, ripe with possibility and endless potential. Maybe he’d grow up to be Prime Minister (we’re Canadian), or cure cancer or do something incredible with his life.
They quickly realized that instead, they got a child whom they would have to care for for the rest of his life, and their own.
Over the years, the school system would kick him out time and time again. Friends, even family weren’t always receptive of his arrival. But my parents, they took these cuts, this pain they were shocked with and found a purpose to bring up him up with a relentless love and uncompromising determination to give him as normal a life as possible.
Though we don’t all have handicapped children or siblings I know we all have our own wounds and scars. From divorced parents to addictions, from abusive spouses to financial problems, we will all feel down there at some point, and we’ll deal with our problems in our own ways.
What I offer is the thought to see in your setback a purpose you can focus on.
Live for someone or something, just as my parents live for my brother or others live to make the world a better place. Live for a purpose.
How far we’ve come
At my brother’s 21st birthday party my family put together a video of us growing up together. As I watched the video I saw footage of my parents wearing those large framed glasses that were popular in the 80's, myself before I was aware of my surroundings, and my brother as he grew from a baby to a man. There was footage of him incapable of rolling onto his back when placed on his stomach, still learning to walk at age 4, and opening his mouth as a kid in excitement — but with ensuing silence.
I saw Mac, our large English Sheepdog that my brother and I loved dearly who passed away many years ago. I was around 1 at that time, and my brother 6, as we both buried our faces into the sides of the gruffy canine, grabbing his long white fur with both fists and clenching on for dear life.
Mac, who’s eyes were hidden by the amount of fur he had, let us ride him, grab him while screaming and put him through all sorts of abuse as he sat there with his tongue out, happily complacent. Next was a picture of Mac staring straight into the camera with a blank stare (eyes hidden) and Kev sitting right next to him, an equally blank stare on his face, and a wad of hair more on end and frayed than the dog’s.
There were pictures of him grinning as a baby, hugging a balloon that was bigger than him with “I LOVE YOU THIS MUCH!” written on it. There was a video of Kev pinching my ear and me crying like a little whiner and running to mom to tell on him.
Footage was shown of Kev’s proper high school graduation in a full gown and hat, walking across the stage as the principal called his name. He joined the rest of the graduates on the left side of the stage and quickly looked around to find mom and dad. When he had figured out which camera dad was holding amongst the other proud parents he cracked a smile. He was lifting his graduation portfolio so the camera could see it and pointing at it, saying something the camera couldn’t catch because it was too far away.
His high school graduation. I wish the doctor who said he would never walk or talk could have seen him then.
Sometimes, when you dedicate your life to something good — something beautiful comes of it. I’ll tell you, there wasn’t a dry eye in the room that day.
3. What doesn’t kill you gives you a choice to be stronger
Scars will never fully heal, that’s why they’re called scars. Even when people think they’ve erased their past completely, memories often leak through the cracks to find their way back.
Most self-help books you’ll read will have the authors citing exciting inspirational things like “it was tough, but we never regretted it, not once!”
Would my family take it all back? If we had a choice, would we ask God to take away Kev’s condition? It’s a noble thought, but after having yet another caregiver quit on my parents and my father hospitalized from stress, I don’t believe it’s that easy to say we’d choose the same path if we were given the choice again.
Personally, if you asked me if I could have a normal brother that I could talk to and rely on — I might honestly take you up on the offer. Not because I don’t love him the way he is, but because of the very real burden he put on our family.
Could someone who grew up without parents honestly say he or she wouldn’t want them back if he or she had a choice? So I’m sorry, I’m not going to sit here and pretend to tell you “I wouldn’t have rather it happened any other way.”
But what I will say with my head held high is that if you find a purpose from the deepest setbacks you encounter in life you will find constant sources of strength you didn’t know you had. The scars will become reminders of something that gives you reason to fight harder, instead of shackles that frighten you every time you see them.
My wife went through a different, albeit just as difficult situation with her father when she was growing up. She constantly tells me she wishes things turned out differently, how even a decade later the setback still plagues her family from time to time.
She chose to find a purpose from what happened though instead of letting it cripple her, and I have nothing but the greatest admiration for the strength that has come from it.
When we said our vows on our wedding day, I told her that both of our families had gone through unique challenges. The fact remained though — she was who she was because of what had happened.
And who she was, that day standing in front of me, was the woman I fell in love with.
Not a version of her who had grown up with a great father, but one who had been dragged through the dirt and still chose to stand up after. Setbacks will shape who you are today, whether you like it or not. But what you choose to do in light of them — that will shape your tomorrow.
Everybody has a choice. You can let setbacks define who you are, or you can rise to find a purpose and have that define who you are.
My brother taught me that.
There’s so much more I learned from my brother, and I’m sure the greatest learnings are yet to come. I’ll stop here for now though, otherwise this would be a 180 minute read!
I haven’t given up on my career ambition to change the world — in fact, that ambition is now greater because I know the larger purpose of caring for my brother will soon come.
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