Tag Archives: #sickbody

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, Heroes, Invisible disease, Patient Advocacy, public speaking, sickness, spondyloarthritis, Survivor

My Walk to Cure Arthritis

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I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me.  This walk felt like something else to fill up space on my calendar. I could be doing…something else.

It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.

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With Suzy, 2013 Arthritis Walk

I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”

It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.

It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars. Continue reading My Walk to Cure Arthritis →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Invisible disease, Patient Advocacy, spondyloarthritis

#Spondylitis Awareness Month

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Image by Rich Beckermeyer Makeup by Alex Cassie

On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.

I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.

We do not choose to be strong. We become strong when we choose to survive.

April is Spondylitis Awareness Month. Learn about Ankylosing Spondylitis by watching this video created by the Spondylitis Association of America.  Then share it.

 

#sickbody, Advocacy, chronic disease, chronic pain, disability, Inequality, Invisible disease, Patient Advocacy, sickness, SSDI

Applying for Disability Has Dehumanized Me

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Applying for disability is a demeaning, humiliating, invasive process.

I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take six months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Most people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations, and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful. In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated, and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.

(here’s a link with some stuff that makes sense)

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“I made this shirt.” Image by Rich Beckermeyer; Makeup by Alex Cassie

As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single other thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.

My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in yesteryears. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so that others will believe me too.

The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health, and accomplish chores. Continue reading Applying for Disability Has Dehumanized Me →

#sickbody, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Invisible disease, Patient Advocacy, sickness, spondyloarthritis, SSDI

Becoming Disabled Is the Apocalypse

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Becoming disabled is indescribable, so of course here I am trying to write about it.

I did not simply become disabled and accept it with the snap of the fingers: “Aha, so that explains everything! I’m disabled!”

Let me make the clear distinction between becoming vs being disabled. Becoming disabled is a learning process. Being disabled is what happens after the shock has subsided and one has accepted disability as part of his or her identity. Plenty of people have never “become disabled” because they’ve always been disabled – they have never been any other way. The difference between becoming disabled and being disabled is as simple as broken versus whole. When we finally reach the acceptance stage, we are once again whole, having accepted that disability is part of us now.

There is no timeline to follow after a sudden and shocking diagnosis – other than scheduled doctor appointments, and perhaps the sudden tendency to plan for the unexpected worst so that if things improve there’s a reason to celebrate. Rather than having a reliable and predictable five-year plan, the sidewalk paves itself with each step you take.

It’s definitely not a walk in the park.  Becoming disabled is more like walking through the apocalypse. Think broken pavement. Zombies. Car alarms. Birds, big black birds. And whatever else you can think of that you wouldn’t want to round the corner and run into. Clowns. Spiders. Snakes. Balloons. Door to door salespeople. Fear. That’s what I’m talking about. Fear. It’s what threatens to overtake each tentative step forward into the unknown, unpredictable new body you now inhabit. Fear is a powerful substance.
Continue reading Becoming Disabled Is the Apocalypse →