Even with limited energy, I resist

Each of us follows a unique destiny, even as we know we will each wind up dead one day. Some people afflicted with a life-ending disease keep it to themselves. They would rather soldier on as though everything were normal. Maybe they tell a trusted friend or two, but they don’t broadcast it. They prefer not to have to deal with the sometimes halting words of empathy from strangers. Many people don’t know what to say, so in some sense, the sick person is relieving others of the need to commiserate publicly. To find suitable words. They talk about the weather or the Chicago Cubs. Anything but disease and its cousin, death.

As someone whose life has followed an unconventional path, I felt it was important that when I was diagnosed with cancer of the tongue and lymph nodes, I not keep this to myself. I didn’t know the difficult path that lay ahead, but since all of my family had died, I knew that I would have to rely on the support of friends (my chosen family) to make it through it.

After a brutal surgery to remove the cancerous parts of my tongue, the surgeon took nerves from my arm to reconstruct a new tongue. This was followed by 33 targeted radiation treatments that left me unable to swallow solid food and the loss of my taste buds. Doctors thought I might regain those abilities and sensations, but alas! They have never returned.

It's been five years now since my diagnosis. While I struggle with a poor quality of life, I know that many cancer patients don’t get additional years. So I quietly go about my day, reading, sleeping, and walking. Grateful that I can still appreciate the flight of a butterfly on my patio or the rustle of the wind in the trees.

I was formerly an American diplomat. Mainly in the Middle East. Before that, I was a Peace Corps Volunteer in Chad. Others have become diplomats after having served in the Peace Corps. Others have lived with HIV for decades. Others have suffered through cancer treatments. But that combination of Chad, the Middle East, HIV, and cancer makes my story perhaps more of a one-off. And because of that, I felt it was important to share my story more publicly. To document the roller coaster of emotions when confronted by your mortality every time you walk into a doctor’s office.

Disease gives us some distance from the quotidian tasks that make up most people’s lives. Not being able to eat is OK if I forget to drink my daily smoothie. I’ll drink it tomorrow. I may lack energy, but with no demands on my time — except for making regular doctor visits — I can opt to sleep and dream about another success in another place and time. Sometimes I have nightmares where people who have treated me badly in the past are doing it again to me. But when I wake, I realise that it is just a bad dream and no one is hounding me today except for the cancer cells hiding somewhere inside me.

Because my energy is low, some friends have counseled me not to pay attention to the ongoing attacks on our American democracy and way of life. They say I should conserve my limited energy. But I refuse. In whatever time I have left, I will have to speak out and resist what they are doing to the country I have served and loved all my life.

The fact that spokespersons for the Trump Administration continue to say that the immigration raids are rounding up the “worst of the worst” is clearly not true. Legal residents without criminal records who have been working and paying taxes for decades are being rounded up and trucked off to horrible places like Alligator Alcatraz in the Everglades in Florida.

They are given no due process. The conditions are horrible, and politicians make jokes about alligators having immigrants for lunch. This is not something to be laughing about. Lives are being destroyed, and we must stand up and say this is not the America that used to be a beacon on the hill to others in the world over as a place of respect for people and their rights and their ability to pursue happiness in freedom. And so I speak not only because I can, but because I feel I must. In illness, in aging, and protest, we live most fully when we refuse to look away. The measure of my life isn’t only in its length or comfort, but in my stubborn insistence to raise my voice against indifference and cruelty. The conscience of our country once knew better -and perhaps, in the time I have left, my voice can help it remember.