Category Archives: disability

A Marriage of Sickness and Health

Dear future partner,

We haven’t met yet, or maybe we have and time wasn’t ready.
We need to talk. Now. Before I fall in love with you, before you fall in love with me.

Because I don’t want my disease to cause you to leave me.

Too often I see sad posts in online support communities for severe disease groups. Like this one:

“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”

These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.

Continue reading A Marriage of Sickness and Health

My Struggle With Three Simple Words

How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I want to give get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate.

The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

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Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject.

Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move. Continue reading My Struggle With Three Simple Words

Accessing Welfare Is Easy

Just fill out the forms, submit them, and wait for the phone to ring, right?

Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.

Not.

I got so excited when I thought about the idea of living on an average of SSDI $1,022.29 per month, or SSI $561.60 per month. Actually, less than that, since “The amount you receive each month will be based on your average lifetime earnings before your disability began. It is not based on how severe your disability is or how much income you have.

Not. Could you do it?

Why have I spent the last two years using every ounce of energy I have to try to earn a living?  Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.

That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip.  I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with.   Continue reading Accessing Welfare Is Easy

Learning How to Fly Again

When I was diagnosed with ankylosing spondylitis my life flipped upside down. It was as if I was born into a new body; one that I never imagined could exist. I was a baby and everything was new again. But not exciting. It was new and scary. And my life is still upside down.

I still remember the feeling of intentionally exhausting myself playing soccer or running or dancing all night, then waking up happily sore the following morning. This is not what my body feels now. Now, no matter what I do the day before – whether I just went to work, cooked, gardened, or even just stayed at home “resting” – my body reacts as if someone is constantly sticking pins into my voodoo doll and twisting them deeper and deeper into my bones and joints.  My muscles are just trying to keep up. Continue reading Learning How to Fly Again