My running shoes shuffle hesitantly by the door, moving in unplanned rhythm with cat hair and dust bunnies that create a grey veil over their silent, still tongues. How long have they been sitting there? They peer at me hopefully every time I open the front door, but I can see they feel more neglected each day, every time I look at them and shake my head: “No, not today. I don’t know when. I’m sorry. I miss you, too.”
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:
Yesterday evening as I was walking with my friend, Robert, by the river, two men in a motorboat passed by heading the same direction.
One called out: “Are you two a couple?”
“Are you related?”
“Then smack that ass. You better smack that ass!”
I immediately turn to keep walking and ignore them just as Robert yells, “Why do you want her to smack my ass?” as he gets in front of me and bends forward slightly. “Like this?”
So I did. I smacked his ass.
But the end of the story is not what made me nearly sob today when I remembered the interaction.
I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.
When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.
When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.
When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.
When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.
I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.
I was blindly privileged. Continue reading “Healthcare Is a Privilege. It Should Be An Inalienable Right.”
We say it would never happen here. It could never happen to me.
But it did happen. It happened to us. It happens every day, on street corners, in homes, at workplaces, on Facebook. Hatred isn’t always seen. Homophobia isn’t always obvious. But they’re always intrusive and divisive.
We on the receiving end are accustomed to being wary of holding hands or kissing in public because we know someone could be watching and choose to target us. Fear builds. And builds. And builds until we hide our identities, even from ourselves, when we leave the safety of our homes or keyboards. Some of us can’t hide (or pass) because we look too masculine to be a woman, too feminine to be a man, too gay to be straight – too much “them” to be “us.”
Queer love and existence has always been more private out of necessity and out of fear. We are keenly aware and constantly reminded that there are people who hate us for who we love or how we identify. It could be anyone, so we tread lightly in public, many of us. And now we are pushed even further back into our homes, our bedrooms, our closets…because maybe these are the places we’ll be safe. The only places we can be safe, maybe.
We don’t want to hide. Continue reading “Orlando Happens Every Day”
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”
Arthritis Introspective 9th Annual Gathering: #GrowTogether16
I’m spending the weekend with a lot of really special people. We’ll drink alcohol, many of us. And take lots of drugs combined. Lots and lots of drugs.
Drugs we wish we didn’t have to take. Did you think this was Burning Man?
No. We’re all sick. We all have some form of arthritis, and many of us brought loved ones with us. We came to have fun – not despite – because we have arthritis.
We didn’t come here to complain. We came to share experiences and be reminded that we aren’t alone. We are a family. We know exactly what it means to survive, and we are determined to be whole humans in the process.
Many of us suffer from multiple chronic conditions because of and/or in addition to our arthritis: depression, anxiety, heart disease, diabetes, chronic respiratory conditions, high blood pressure, etc.
And the drugs. Oh the drugs. Did I mention the drugs? Biologics. Corticosteroids. Chemotherapy. Non Steroidal Anti-Inflammatories. Analgesics (oral and topical), Disease Modifying Antirheumatic Drugs, eye steroids (did you know there are steroids for eyes?). Sleep medication. Anxiety medication. Depression medication. Blood pressure medication. Insulin. Medical Marijuana. Etc. Etc. Etc.
We didn’t come here to be sad. We came here as sisters and brothers who know what it means to fight every day. To hurt every day. To struggle against our own bodies every day. No, we didn’t come to be sad. We came to be proud of who we are. We came to talk about our shared struggles and what we do to overcome those struggles daily. We came to say, “Yes, we can,” not, “I give up.”
While it’s not our first agenda, we also came here to speak Arthritis, because it’s our language and we’re experts. Here, our broken bodies are the dominant norm, and this little Utopian environment feeds our conversations in a powerful way. We are empowered simply because, here, we know we are seen as human first.
We have pain. Many of us have malformed joints. You name the joint, someone here has a picture of it on X-ray. Up yours, arthritis! We use braces, splints, gloves, canes, walkers, wheelchairs. Some of us don’t use any of these things. Many of us have suffered from stunted growth. Many of us haven’t. Some of us look sick. Some of us look healthy. This is arthritis, don’t you see? Maybe not. Not all the time. It’s not always easy to see.
We all need a gathering place.
We didn’t come here to cry, although some of us undoubtedly will. We came here to find friendships that transcend our diseases with the (re)assurance that our arthritis isn’t something we have to hide or hide from. Here, we simultaneously put our diseases at the forefront and at the back of our minds – doublethink, as Orwell penned it.
We came to share openly with people who just get ‘it,’ but we also came to dig deeper than our medical charts to who we are aside from our diagnoses. We need this gathering place to retain our identities within our broken bodies.
Here, our diseases are seen as an extension of our beings, not our defining identity. Our diseases are only doorways into the relationships we are nurturing. Problems aren’t problems, but rather reasons to connect, share, and grow together.
Our ordinarily stigmatized diagnoses of Arthritis are ironically what make this gathering a normal affair – at this place, our bodies are the norm.
Here, we are not judged or questioned for the diseases that strive to define our lives. We are welcomed and embraced for being the beautiful humans we are.
We came here to have fun, make memories, learn, and be empowered. We came to find a home among family, and to be ourselves.
Chronic does not mean predictable. Chronic does not mean temporary. It also doesn’t mean consistent, monotonous, predictably repetitive, or habitual. It’s not banal or soporific. Except that it is.
It can be seen, yet it is invisible. It’s tedious, at the same time that it’s not. It’s not a routine, at the same time that it is. Everything changes, at the same time that nothing really changes.
Which is why we have such trouble understanding it.
Like the Greek word agápe, with no direct English translation, chronic disease – chronos – does not translate into something we can make sense of at first either. The idea that anything will last until we die is far-fetched (except for happy marriages and twinkies).
‘Chronic’ doesn’t fit our understanding of how health and sickness works. We’ve been conditioned to believe that our illnesses are curable; if we just try enough treatments we’ll get better. Injectables, swallowables, stitchables, chemicals, radiation(ables) can fix anything.
Except that they can’t.
Chronic disease is like a parasite; surviving off its host, always adapting to resist being eradicated. The intense throbbing of an anxious and overburdened body is an unwelcome, yet familiar, intrusion with the dawning of each new day.
Chronic disease is unpredictable and that unpredictability makes it nearly impossible to control. The drugs may not be permanent but some side effects are, and the progressive nature of the disease introduces new symptoms when least expected – symptoms that will be forever crashing workdays, nap times, parties, and vacations.
Imagine every injury or mystery pain is there to stay. No longer are muscle strains and sprains healed with heat/ice and stretching; the pain never goes away. No longer are a stuffy nose and sore throat symptoms of a common cold; they are now permanent. No longer is an all-over, throbbing ache a warning sign of the flu; it is reality 24/7/365.
We who have these forever conditions don’t get used to them. There is a degree of accepting them, and though we adapt to these changes in our bodies with no other choice, we still remember what we used to be capable of. Even if we’d prefer not think about our losses, our medical charts track them for us. We can hope for remission, but anyone who knows anything about cancer understands that remission is a sleeping dragon.
Chronic is the wicked word, not disease. Because chronic is the reason our diseases stay.
Chronic doesn’t go away.
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.
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”
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.