A Letter to the Future President of the USA

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

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We All Need Gathering Places

Arthritis Introspective 9th Annual Gathering: #GrowTogether16

Nashville, Tennessee

May, 2016

Dear Journal,

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. Continue reading We All Need Gathering Places

Chronic Doesn’t Go Away

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.