A Bittersweet Birthday
Thirty years with my special brother
This past summer, I shared a side of myself in a Facebook post I had never spoken about publicly before, and I haven’t felt the same since. Something gave way inside of me after I typed it up. Suddenly, mind fog started to dissipate and turn into clarity as difficult life experiences I had struggled to understand and cope with came into pristine focus and suddenly began to make sense. It felt like a crack: an avalanche seemed to break, the floodgates seemed to fling open. Disparate memories — painful ones and tender ones — rushed over me and took on new meaning as they spiraled together into a narrative in mind revolving around my brother, the thread that tied it all together. For the first time, I saw what I couldn’t see before but was there right in front of me all along: that this special, silent figure in my life was the heart of my story.
I share the post here, in the hopes that it will reach a wider audience and bring readers the kind of healing it brought me when I wrote it:
I have a story I’d like to share that’s very personal to me, something I’ve been wanting to open up about for a while. Now feels like the right time.
On August 23rd, 1988, this beautiful angelic soul was born into this world, and I’ve been blessed to call him my little brother since. Mohammed’s 30th birthday was a few weeks ago, and we marked the occasion with a small family celebration.
I’m still trying to process it all, the bittersweetness of the day. Part of our sadness stemmed from the reminder my brother’s birthdays always bring: aside from his orbits around the sun, we have no other milestones for him to celebrate. The other part stemmed from the realization that, besides us, his immediate family, few were aware Mohammed had a milestone decade birthday.
I couldn’t help but feel some heartache when I got on Facebook that day and read some of the birthday wishes sent to friends who shared my brother’s special day. I thought about how Mohammed was so far removed from this experience, from having friends of his own who think of him and convene on and offline to celebrate him. As a non-verbal, visually impaired (he’s legally blind), physically disabled young adult with Cerebral Palsy who understands more than he can communicate, he occupies his own solitary world apart from ours — trapped in his body, alone with his thoughts, unable to fully engage with others in the ways we take for granted.
I’ve been contemplating what it’s been like for him to live like this for the past thirty years, to experience the passage of time, and now, edge deeper into full-blown adulthood, without the prospect of exciting life events that tug the rest of us forward: the graduations, the career highs, the wedding celebrations, the first child, the first grandchild. I wonder what it’s like to live in a world where you’re so visible and invisible at the same time: where people notice you and even stare at you because you’re so different, but avoid you because they don’t know how to engage with you. I recalled the times when people would greet me and other members of our family when they’d see us, but overlook my brother sitting in his wheelchair next to us. He wouldn’t let them get away with it. He’d try to get their attention with a loud “HIII!!!!” and flail his arms at them, insisting that they shake his hand, as if to assert his existence, as if to shout, “HEY! I MATTER, TOO!” These are some of the thoughts and memories that have been circling through my mind the last few days, and I found myself more than once fighting back the tears.
But then there are other thoughts that have been circling through my mind, too — happier, more comforting thoughts, but thoughts that still make my eyes moist. I remind myself that I might be projecting my limited understanding of what makes a good life onto my brother’s, that in many ways, Mohammed is more fortunate than the rest of us. I imagine he has access to the wonders of the unseen — I have no other explanation for the many times over the years we caught him sitting alone, gripped by euphoric laughter, reveling in private moments of ecstasy — and I think to myself maybe that’s what keeps him going. He’s not really alone, I tell myself; I’m sure he has a constant, intimate friend in God — and what a friendship that must be. I think, despite his frustrations with his many challenges and limitations, on some level, he knows he’s got it good, too; I see hints of that knowingness in the pure, radiant, ethereal smile he’s so generously lavished us with since he was a baby — a smile, I like to think, might be reminiscent of the man whose blessed name he carries.
My brother is unable to read and isn’t on Facebook, but if he was, this is the message I would have sent him:
“Happy 30th Birthday dearest Duksha! (One of his many nicknames:)) I’m so grateful that I was chosen to be your sister. It’s been an honor bearing witness to your life all these years, and I’m grateful for the many life lessons you’ve taught me in your quiet struggle. I hope that I can continue to support you along with our parents and brother Ashraf and his family in your unique life journey and make sure you have the quality life and loving, inclusive community you deserve. There’s so much more I could do for you and others like you, and I promise to try harder. Whatever blissful final destination your journey takes you to afterward, I hope, despite my many shortcomings, you’ll take me with you ♥”
I look forward to sharing more stories about my brother and introducing him to more of you through my writing and in person soon. I’m sure you’d love him and find your lives enriched by hearing his stories, meeting him, and being his friend.
Please keep him and us as his family caregivers in your prayers…