From denial to celebration, I now reflect and accept my disability
As my wedding celebrations show, I no longer hide living with sarcoidosis
My husband and I just celebrated our 23rd wedding anniversary. And our 18th. And our 13th, and our eighth, and our third. While every year is significant, we’ve made it a tradition to get married again every five years, with a new location and theme each time. From Las Vegas to Hawaii to a cruise ship somewhere in the Caribbean Sea, we’ve made memories that will last a lifetime.
As is natural in the days surrounding our anniversary, we spend a lot of time looking at old pictures, reminiscing about the experiences we’ve shared and the people who were with us at each stage in our lives. As is unfortunately natural for me, I focus too much of my attention on how my body has changed from one wedding to the next; I see the weight I’ve gained from over a decade on steroids, and I grieve for the activities I can no longer do because of pain, fatigue, and shortness of breath from sarcoidosis.
What I noticed this time, in some of the most recent pictures, was my cane.
Our 20th anniversary (wedding No. 5) took place right at the beginning of COVID-19, as businesses were starting to close. We spent the weeks beforehand determining whether we could still go through with our plans, which featured a hot air balloon ride in Napa Valley, California, with a handful of friends and family. (Spoiler alert: We couldn’t.)
Back then, we didn’t know much about COVID-19, but what we did know was scary. The first big “containment zone,” in New Rochelle, New York, was about five minutes from where I live. In fact, the “patient zero” who led to that outbreak was diagnosed at the hospital where I’ve been getting my intravenous immunoglobulin (IVIG) infusions since earlier that year. At the time, there were no treatments and no vaccine, but we knew that people with immune-mediated conditions or immunosuppressive medications were at greater risk of severe illness.
New York and California were among the first states to shut down, so not only couldn’t we make that trip, we couldn’t even go to a restaurant close to our New York home. Still, we focused on what mattered most, which was just being together and saying “I still do.” Paired with the kind heart of my village mayor and the beautiful park down the block, we were able to make it a uniquely special moment.
When I started using a cane in 2015, I tied scarves around it, changing them daily to match my outfits. Since then I’ve likewise decorated other mobility aids. But you would only know that if you saw me in person (or if you read my column about it).
Whenever I posed for a picture, I stepped away from my scooter or put my cane off to the side. I knew that I needed them to get around, but I didn’t have to go out of my way to show that, right? We always want to present our best selves in pictures, so there’s no need to highlight our flaws.
But I’ve discovered two problems with that logic:
- I was literally going out of my way to hide those aids, not the other way around.
- My cane and scooter are not “flaws.” Being disabled is not a flaw.
“Flaws” usually refer to blemishes, errors, or mistakes. Something flawed is seen as “less than” — less valuable, less worthy, just … less. That message can seep into our hearts, making us feel inferior to our nondisabled counterparts.
Throughout my life, I’ve volunteered and worked to support people with disabilities, and I’ve been inspired by their self-advocacy efforts. I’ve also also been lifted up by autism advocate (and animal behaviorist) Temple Grandin’s famous refrain, “different, not less,” which became the title of one of her books.
But when I became disabled, that’s all I could feel: less than I was before, less than someone who could still do things that I no longer could.
I’m not exactly sure when that changed (and of course there are moments when I drift backward), but I attribute it to the advocacy I’ve been doing for the past 10 years. With all the times that I’ve said “our voices matter; we matter” in reference to others with disabling conditions, those words began to feel like they applied to me, too.
I guess that’s why, when planning for my 2020 wedding (and looking forward to 2025), I didn’t even think about putting my cane out of sight. Instead, I wrapped it with a rose gold rhinestone ribbon that matched my belt, jewelry, and glitter Keds. I’m calling that my Selma Blair Emmys moment.
We don’t need to walk across a stage or down an aisle, and this celebration doesn’t require anyone else to be there. All it takes is for us to accept our own illnesses and disabilities. We all deserve to be seen, accepted, normalized, and celebrated, flaws and all — and especially by our own selves.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.