Thirteen years today (last month, Sept 13) with this one. We typically don’t do much for our anniversary. I can be pragmatic, always suggesting no gifts or extravagance because I’d rather save the money or put it towards an experience. But 13 years on the 13th seemed like something to celebrate, so I booked him a Vegas suite and we celebrated with a good friend who drove in.
In 2001, Jason tried to pick me up at the elevators of a Detroit art college we both attended, but I opted to be friends. Years later we both ended up in California and the friend zone fell.
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.
It’s difficult when disabled are made to feel like a burden by their partner, family or friends, but Jason has never made me feel this way. It can be hard to know how one will respond to a life of progressive disease and disability, but he has unflinchingly traveled with me throughout the stages. He doesn’t lament about my disability or “how hard it is” (the only thing outsiders see) except the days when it’s tearing me apart. It’s only then he takes notice of the disability but every other day I’m just Kam to him.
If you met Jason, you might think he is stoic and quiet, but he’s more of an observer. I rarely hear him speak ill of anyone as there’s few people Jason doesn’t like (and if he doesn’t like someone, there’s probably a good reason). He rarely complains or makes things about him. He also unfailingly supports my advocacy but prefers to be the support in the background as he seeks zero fame or status. He never makes me feel like I’m too much or too little, and there isn’t a shred of manipulation in him because his thoughts are never focused on what he can gain from an individual or how to spin a situation to favor himself.
We are not perfect in any way. Like every couple, we have our struggles, fights and have met our limits with each other. Marriage and relationships is not always easy. But we equally support each other’s happiness and life desires. Thank you for seeing and loving me, just as I am. We’ve had some fantastic adventures, experiences, and humor along the way. Here’s to always more.❤️ #kamswheelstravel
Documenting what Jason wrote as a good reminder. His copy/paste below:
“Yesterday was Kam and I’s 13 year anniversary and we celebrated by adulting in Vegas. I wish I was a better writer cause I feel I lack the language to properly express how special an experience it’s been to witness Kam, and her evolution over the years to the confident, empathetic and emotionally wise leader she’s grown into.
I knew Kam was genuinely empathetic person, but it’s been fascinating to see how people relate to themselves through Kam’s authentic and genuine expressions of vulnerability. She never see’s anything she’s writes, or her art as special, but she’s helped so many people (especially other disabled people) better understand themselves through her honest discourse with herself, because Kam wants people to understand that they’re not alone. Someone else is experiencing their struggle and through our shared experience we are all connected
As an advocate Kam has become a leader amongst the disabled community so much so that she was awarded The Rare Impact award from NORD, for making a positive impact in the world of disabled advocacy. Recently her art was showcased amongst the walls of H4B Boston, an ad agency specializing in rare disease and specialty pharma. Her story and art is being used to remind and inspire specialty pharma of whom they are working to help. There have been countless more examples of recognition of her intimate form of advocacy, but more than all that I’m continuously in awe Kam’s ability to see the potential in life. No matter how hard her circumstances become, nothing deters her from wanting to travel and experience all the wonders of life. Her excitement to experience all the unique perspectives and ways of life makes me grateful to appreciate our existence through Kam’s eyes.
I feel truly understanding someone’s else’s perspective is one of the unique gifts in life and Kam’s perspective makes me a better person.
Thank you for being who your are as the world is a better place because of you. Here’s to another 13 years. Thank you for always looking out for me and taking care of me.”
For more ♿️ travels; disability and accessibility musings, art and mini-memoirs, follow: Instagram.com/kamredlawsk
