There are so many things to be thankful for in life. One of those special gifts to me was my brother, Mike, who took to painting angels later in his life.
Last month I knew his birthday approached before we flipped the calendar to June. It’s hard to explain, but even though he faced many challenges and passed away a few decades ago in his 30s (also during June), he touched my life in so many important ways. His memory lives on.
Mike started losing weight and began painting angels in ethereal watercolors in his early 30s and after a few years of writing off his lethargy to his intellectual disability, doctors discovered his kidneys were failing. By then, the disease had progressed and my parents received assurance that treatment options were limited. They scheduled dialysis and he commented about how painful and disruptive treatments were for him. He asked them to quit treating him to end the pain, but my parents refused.
Meanwhile, I lived a few hundred miles away and my parents didn’t share any info on his progress so I didn’t know how much he suffered. When I asked, mom would say “Mike’s okay. I’ll tell him you said hello.”
Before the funeral, my mother told me, “We know how hard you work and didn’t want you to worry about Mike. Dad said because of Mike’s intellectual disabilities, the doctors frankly explained he would never make it to the top of any list for donated kidneys. The process to get family members tested as potential donors took significantly more time than Mike had left, mostly because of lack of info and family squabbles.
In school Mike was in “special ed” and I was in the “smart kids” classes, both of us disappointments to our parents. As a bit of a math nerd who challenged teachers who preferred to grade on a curve, I learned as much as I could about that “curve.” I found it generally insulting though I enjoyed thinking of Mike and me as “standard deviants.” Our parents never got the joke. It’s unlikely any of our teachers did either.
My dad wept the night the school called to inform our parents that Mike was going to “Special Ed” while I was being moved into an “advanced placement” class. Dad’s view of the universe had somehow shattered. He paced and wondered aloud in tones as piercing as glass shards falling on bare skin, “Why did the girl get the brains?! What do girls need brains for? Why didn’t the boy get the brains?! It’s not right!”
Mike walked away from the rant that night, tucked himself in bed, and fell asleep. He never found any rewards in fighting against anything, even in our loud household. Not me! I stewed. Aligned arguments. Wished I had something to punch. Complained to God. Tossed and turned.
Wounded, we managed to stick together. My brother didn’t mind his “special” classes and shrugged off folks who called him names. I found the advanced classes lacked sufficient challenge and I didn’t think they were worth the harassment I received from staff and other students for being different, but I didn’t complain. We were opposites in so many ways, but our bond strengthened over our shared longing for the normal label we would never have.
As for me, I always believed my parents when they told me my primary responsibility as the Big-Sister was to protect Mike and any other unsupervised younger children. In that capacity I stood up to a bully who shot at my year-younger brother with a bee-bee gun on days when Mike walked home alone. I waited for the fire engine to arrive after I witnessed a boy set off a (false) fire alarm, because I worried he would blame my innocent brother. Mike, a hapless scapegoat, shrugged and accepted the blame for a lot of things.
A goofy kid who loved stories and angels, dogs and cartoons, Mike kept his dark hair short because fashion never came near his list of priorities. He liked to go fishing with me and dad but cried when he had to bait a hook because he felt so bad for the worms. When dad wasn’t looking, I sometimes baited Mike’s hook because I felt worse for him than the worms (we hardly knew them and never had time to name them). Mike had deep blue eyes that people often missed as we stood side-by-side, my dark eyes boring into them. They only looked at him long enough to minimize his relevance.
Some of the lessons I learned (eventually) from my brother who died far too young:
(1) All of us are unique, though it seems we have oddly cruel standards for assigning value to human lives, including people with disabling conditions, elders, youngsters, people of color, anybody who appears different from the youthful and slender northern European ideal. As a child I always believed that time would erase that meanness of spirit from our culture before 2000 and an era of loving respect would dawn.
(2) Acceptance and understanding are not mutually inclusive. It’s possible to have no clue about how someone reasons or thinks while accepting and supporting their right to live in their own manner as long as their manner doesn’t hurt others.
(3) Sometimes it takes a very long time for things to change. More than once I heard Dr Kimo Alameda mention that it takes about 100 years for a cultural shift once people have divided themselves from another race or ethnicity or group. Here’s hoping that pace quickens. We’re capable of so much more acceptance.
Whether or not you believe angels exist in any form, I’m happy my brother felt drawn to those purported beings of light during his final years. If anyone deserved a few celestial visitors, he did.
Sometimes my brotherly protection-gig felt huge, but during our very last conversation Mike told me he always knew that protecting him was never really my role. My role, he said, was just to accept him as he was. That wasn’t hard at all, you know, but all this time everyone thought I was the smart one.
Here’s to lovingly accepting people as we are – in all our glorious diversity.
May you be healthy, happy, strong, safe, and view others through the eyes of loving acceptance. May others view you through loving eyes as well.
Last words: Please remember that neither my opinions/experiences nor resources I mention are meant as cures or treatment. This is intended to uplift and educate, not as counseling or professional advice. If you are in a moment in your life when most efforts feel huge, consider finding a mental health professional to support you.[i] If you’re considering ending your life or if you are in crisis, please reach out to emergency services (9-1-1) or a crisis hotline[ii] to connect with someone who will have your best interests at heart. Your tender heart deserves respect.
Copyright 2021 D.R. deLuis
[i] One potential resource for finding an affordable counselor is www.opencounseling.com and most communities offer a 2-1-1 number where you can get info on local resources.
[ii] If you’re not comfortable speaking with someone, try reaching out to the Crisis Text Line. In the US and Canada text “HOME” to 741741; in the UK text 85258; in Ireland text 2050808. To speak with someone, contact the National Suicide Prevention Lifeline at 1-800-273-8255 or visit the website to text/chat at https://suicidepreventionlifeline.org/chat/.
For more about Dr Alameda, search for Christian “Kimo” Alameda or Dr Kimo Alameda. Here’s a link to one of my favorite short videos: https://www.youtube.com/watch?v=UtW_J4QGvek
The Invisible Years 