My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.
My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:
He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.
He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.
I learned I had AS in 2013 after a period of sudden, un-treatable illnesses that left me in pain and unable to breathe. Urgent Care doctors blamed my frequent visits on panic attacks and attempted to send me on my way with anxiety medication, but I knew my body better than that. Continue reading An Open Letter to Congress from a Poor, Disabled American
Dear gate agents,
I’m one of those passengers who shouldn’t be in the pre-board line.
You know the ones.
I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence pointing to a broken body. According to popular opinion, I don’t look disabled.
You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability right after you sweetly, wordlessly hand one to the woman in front of me Continue reading Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled
When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.
The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.
Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:
Continue reading To the Social Security Administration About Denying My Claim for Disability Benefits
Dear Future President,
I’m concerned for our country and world, and I bet you are too.
The issues are astounding: people are fleeing rape, war, and other violence. Voter identification laws. Terrorism. Gun violence. Police violence. Bathroom bills. Prison populations. The cost of college. Decreases in pay for teachers. Unequal pay for equal work. Healthcare and specialty medication costs. The creation and sourcing of energy. What women can and cannot do with their bodies. Minimum wage. Budget. Military spending. War.
We also live in a culture of fear.
The news media help us – encourage us – to see the world as a dangerous place. We are rarely shown stories of heroism or positive change; and when we are the highlights are quickly lost in a blur of unsettling news. We are encouraged to expect the worst and protect ourselves against anyone we don’t know.
We need a leader to give us hope in the face of so much fear.
We need a president who facilitates with trust, responsibility, mutual respect, and appropriate transparency. Someone who empowers, collaborates, and leads with people. This job is not for someone with a hero or ego complex, rather, it’s for someone who understands that the job of President is an immense honor and a sobering duty. We need a president whose selfishness will not impede his or her ability to help all Americans succeed. I need a president who understands this. Continue reading A Letter to the Future President of the USA
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
Dear human family,
This past Sunday before church, a child in the pew behind me asked his mother why there was purple cloth over the cross. She said,
“Um, well that probably has something to do with the fact that it’s Lent.”
His mother and I both struggled with the proper words to explain Lent. Neither of us used Jesus language. We didn’t say that Lent is a somber period of time prior to Jesus being murdered and then resurrected three days later. We didn’t talk about Satan testing Jesus in the desert for 40 days. Instead, we explained that we cover crosses as a reminder to be introspective and thoughtful during the time before Easter. I offered that it’s a time to think about how we can make ourselves better people and the world a better place. Afterwards I thought about how, instead of filling this child’s head with jargon that he may remember but not understand, we sought to explain Lent in terms that anyone can understand – Christian or not, kid or adult, politician or constituent. This child can grow up and be or become who or whatever he feels called to be, whether that happens to be Christian, Buddhist, Muslim, Wiccan, Agnostic, or Atheist. The list goes on.
I realize Christians, especially Episcopalians, do things that sometimes appear silly, even to ourselves. We drape crosses in purple fabric. Swing incense. Smear ashes on our foreheads. Drink wine or grape juice and call it Jesus’ blood. Yet, these symbolic or theological rites that have been in practice for millennia have powerful meanings that carry great significance in our spiritual journeys. Yet, I argue, it isn’t our rites that make us Christian, but our hearts. And we all have hearts no matter our religious identities. Continue reading The Human Family Is Bigger Than Religion
I love you, terrorist.
You have a name, like I do.
You were once a child. We both were, once.
Perhaps we’ve shared the same joy that comes from riding a bicycle. We’ve shared the same flavors of favorite foods, the beauty of sunsets, the feeling of joy while playing a fun game.
We’re both human. We share the same stars, moon, sun, and earth. Our bodies work in much the same way. Food and water nourishes us and sleep invigorates us.
We both have parents and families that taught us how to discern right from wrong until we grew old enough to explore different sets of ideas and ways of thinking.
There are people in our lives we love so deeply whose losses we would grieve terribly should anything happen to them. Perhaps you’ve known grief at a young age, like me.
We are more alike than we are different. Continue reading I Love You, Terrorist