Loneliness is an epidemic, with 1 in 4 across the world are lonely. For many, loneliness around the holi-daze also becomes as traditional as dead poultry on the dinner table.
As a kid, Christmas and the holiday season was laid out as this extravagant wonderment-even if from the corner of your eye you sense abbreviated lulled magic among the adult section-replaced by stress and frustration. But still. December as a child was pure adrenaline popping. This speed-like wonderment can change as you age.
The simplified headlines about the holidays reads that it's one big Thomas Kinkade painting ready to explode its glitter confetti mess all over you.
Every holiday song is telling you to be merry, every television commercial depicting GAP cable-knit togetherness in front of a dangerously high roaring fireplace, is communicating that, “it’s a big club, and you ain’t in it”. The holidays are a “bag-over-the-head, punch-in-the-face, hap-hap-happiest Christmas since Bing Crosby tap danced with Danny-f—cking-Kaye” movie-like event, and it’s time to fall in line…
The phrase, ‘Disability Is Not A Bad Word’ comes from the need to tell society that, yes, we may be disabled, but this does not mean our lives are smaller than yours. We are not smaller than you. It means we are not monoliths or riddled with only sadness-void of agency or worth-as you may immediately suspect. It means we are full multi dimensional beings with abilities, desires, contributions, passions and dreams with the capability to influence love and eroticism. It means we have all the same range of emotions and quality of living as non disabled people.
What is vulnerability and why is it scary?
Vulnerability comes from Latin vulnus, meaning “wound”. It is the quality of being harmed or the willingness to be hurt.
No one wants to be hurt, and understandably most won’t risk further pain by exposing their wounds or perceived weaknesses. This is self preservation mixed with societal folklore — that being vulnerable equals weakness, and should be shamed.
This is me.
When I’m finally tired of having no independence.
When I’m finally tired of dripping fatigue.
When I’m finally tired of unrelenting pain.
When I’m finally tired of losing everything I love.
When I’m finally tired of being tired.
This is me in bed with no one in the world knowing or perceivably caring, trying to live through the physical and emotional hurdles a disabled body can offer. This is me when even the sunlight winking through the pursed blinds is still too much of a witness for me to bear.
On our first morning in Barcelona I woke up at 3am crying to thoughts of my mother. The memory that rushed to my mind was when she used to work at Detroit baseball stadium for a summer or so to help make ends meet. I have a mind full of vivid memories. Jason is always surprised at how visceral my recollections can be. In any given memory, I can remember how the sun felt, the heaviness of the air, the gentleness of the breeze or the cloudiness of a subdued living room light.
It is easier to get a gun in America than a wheelchair. This is not an anti-gun post, this is an anti-do nothing post in the face of an undeniable problem.
Forty four and I like the vista of my life; all I’ve been through, seen and done, and all I’ve yet to see. I love what getting older and living life has done for my mind and vision. I’m at a place where I like who I’ve become and know where I’m going, more or less.
“We don’t need disability in our face.” - Candace Owens
It’s true, disabled people wear underwear. Wild. I know. (Who let us out of the cage?) Recently, political commentator Candace Owens went on an angry rant, demanding an explanation on why a disabled model is featured in a Skims underwear ad, and how ridiculous and over the whole inclusivity thing she is, calling it stupid while mocking disabled people.
There are several signals here, the most prominent is her mirroring the pervasive thought society has about disabled people: we’re better not seen and we don’t deserve to live or have the same access non disabled are privy to.
It’s Women’s History Month and I want to highlight Judy Heumann; a significant disabled activist who recently passed away on March 4th. Much of the access disabled people have today is because of Judy’s work that began in the 70s.
…it’s about resetting our own lens and truly seeing the self; a systematic collection of psychological, social, experience, neural and molecular identity. The core of who we are. and where true awe inspiring beauty lies. The self is more than the physical.
Learning to love your body in all its stages is an inveterate adventure without a disability. But add a disability to the equation, with an atypical or anti-mainstream body, and you’ve got a lot more noise to work through.
I get around. ♿️✈️ Here’s my annual travel compilation (4 minutes) of some of the moments and things we saw and did in 2022. (Remember, these are just highlights, not all the lights obscured by shadow and monotony)…
What is adoption really like? November was Adoption awareness month, here’s my late contribution. Often, we only hear about adoption from a society who romanticizes it, as they pat the adoptive parent on the back for being saints, and pat adoptees on the head while telling us how lucky we are that someone would rescue the “unwanted”; a similar response I receive as a married disabled person. This not so subtle message was drilled into me from young: “I should only be grateful for the sacrifice it took to get me” thus, in my little abandoned mind, I’m a burden who needs to prove I’m not a mistake.
This message throughout my life helped mold my self-perception.
Me: I didn’t do anything today.
Jason: You existed. That’s enough.
I can be on a productivity spiral almost daily. I never feel that I’m doing enough, no matter what I do or accomplish, and can easily get down on myself—thinking I need to do more. Be more.
But here we are. I’m doing my best to accept this impending destination as no treatment exists yet. I’m struggling with the knowledge that this won’t end until it’s eaten up my body. I’m struggling with feeling more frail, in pain and weak every year. I’m struggling with wondering if I’ll die young. I’m struggling with my hands as I feel the weakness spreading. I’m struggling with no longer being able to draw one day—another form of personal expression taken from me.
Happy International Day of Persons with Disabilities Day!
“To be different is a gift. To be ordinary is common.” - Aída Salinas
How can you love a body that’s different? How can you love a body that puts you in constant pain and utter fatigue? How can you love a body that doesn’t work like the typical? How can you love a body that feels like it’s slowly dying? How can you love a body that makes you feel mortal weakness to its core?
I’ve always felt connected to the desert as it mirrors so much of how I’ve felt throughout much of my life: a sense of loneliness, abandonment and aloneness, but thanks to Jason I haven’t had to do it alone anymore. Jason has seen most of the stages of this disease, from the cane and leg braces days to a walker, manual chair and now a power chair. He has witnessed the darkest pits and brightest days…
Society likes to image disabled as one thing. We’re positioned as the “uncool” group who don’t belong and are better hidden. In society’s eyes, we can’t have interests, sexuality, be accomplished, opinionated, educated or edgy. We can’t be travelers. We can’t be interesting. We can’t be a (company) asset. We can’t be fashionable. We can’t be talented. We can’t be sexy. We can’t. We can’t. We can’t.
Melancholy set in last week, so we took a spontaneous road trip to Joshua Tree. Saturday was my dad’s birthday. He died last year. We took my dad to Joshua Tree the last time he visited California, right before his double lung transplant…
having pride in oneself can be challenging in a world that says don’t be you. How can you have pride when you’re met with such odds and ignorance?
It’s AAPI Heritage Month…Food connects and opens people because food is very personal. It’s an offering, an extension of love and kinship. When we perceive something different, we inherently fear it first, but through food we can see another’s’ humanity—mirroring kinfolk archetypes who have loved us as children through food; reminding us of our moms, grandmas, sisters and the family who fed us. It breaks down walls and irrational fears.
