Living Well with Chronic Illness

Living with a chronic illness is hard. Living well with a chronic illness is even harder. It takes mental and emotional strength. Courage and resilience. A sense of humor. Hope. A positive attitude. Adaptability. Faith helps. So do emotional support and community. And a reason for being.

I think people who live well with chronic illness ought to be celebrated like Olympic athletes. Their unsung accomplishments are remarkable.

Think of it: Beginning each day anew requires grit, determination, and perseverance to push through pain, illness, limitations, depression, bodies that don’t work well, brain fog, disappointment, or depression. Then, the next day they do it all over again.

It takes remarkable courage, as well, to keep moving toward an uncertain future whose only certainty is that things may get worse. It takes perseverance to devise new ways to do what we did before and can no longer do in the same way. It takes a sense of humor to laugh at ourselves and the ridiculous and to lighten the load.  

In addition to all that, it takes emotional strength to let go of what we have lost and move beyond our grief, and wisdom to know the proper balance between telling others our struggles and keeping them to ourselves.

Those with chronic illness demonstrate unseen strength and courage, silently doing things every day that others neither see nor imagine. And those who do this with graciousness, kindness, and good humor are even more remarkable. There ought to be awards given to such people.  

With that said, if you have a chronic condition or long-term illness, claim the strength, courage, adaptability, and resilience that gets you through and makes joy possible. These are superpowers. When you fall as you will, remember that this has happened before, and you got back up. You can, again. You’re a survivor and a role model.

Lastly, if you know someone who lives with a chronic condition, notice the silent challenges and accomplishments of their everyday life; their strength, courage, adaptability, and perseverance. Be inspired by the model of their life and tell them so. Be grateful to know such people. Those who live well with a chronic illness are a gift to this generation and those to come.

February is the Cruelest Month

T.S. Eliot says April is the cruelest month (The Wasteland), but February has my vote. I thought I would get a coronavirus vaccination this month but, like millions of others, discovered it will be much later because my state botched its vaccine rollout. The isolated seniors with whom I check in each week despair. We need hope.

Adding insult to injury, I was so excited to see primrose blossoms and daffodil shoots in my garden that I nearly cried when frigid weather blew in. Now my garden is buried under ten inches of snow. Dreams of an early spring were an illusion born of February’s desperation. The long pandemic winter continues. This is depressing.

Like the seniors with whom I speak regularly, I need a way to keep from going crazy. I could call my strategy “Plan B,” but I passed “B” a long time ago. This one is “R” for “reframing.”

Reframing is a mental exercise similar to changing the frame surrounding a picture. Although the picture itself remains the same, we experience it differently depending on the frame through which we view it. Whether our focus lingers on a dark red barn, a white moon, or a pale blue sky depends on the framing. The first example below draws the eye to the German words along the edge of the print while the Madonna and Child become almost secondary. In the second (click arrow below), the viewer is riveted on the Madonna sheltering her child and feels the protective comfort she provides (Madonna of Stalingrad drawn by Kurt Reuber in trenches of WWII). Same picture, different frame, different experience.

Something similar happens when we mentally reframe a difficult situation. A roadblock becomes a challenge; a mistake becomes a learning opportunity; a pandemic becomes a season for reassessing values, changing our life, building resiliency.

As the first pandemic year turns becomes a second, reframing helps us not only survive the pandemic but celebrate the good we have brought from it. Reframing helps us go forward with hope.

First, the fact that we were resilient enough to survive a year of the pandemic is worth celebrating. We made it. Yes, there is more ahead, but we survived. None of us imagined what the year would be like, nor that constraints on our life would last so long. The muscles of resiliency we strengthened last year will grow even stronger in 2021. Reframing the pandemic to celebrate our resilience and perseverance helps us keep going. We can do this. (See Resilience in Many Forms)

Second, the past year has been a season of growth. We read, streamed, cleaned, cooked, began new hobbies, and learned new technology skills. In 2021 we take that to a new level. There are more books to read, movies to watch, skills to expand, and cuisines to explore-and plenty of time to do it.

In the early months of the coronavirus, we sorted pantries, closets, and garages. Now we can do it all over again and peel away another layer. Stuff that seemed essential last year no longer does. Cull paperwork. Rethink a room. Simplify our space. Redo storage and closets. Add a houseplant. Throw away that ugly chair. (See Open My Window, Birds Still Sing)

February will end. The snow will melt. Spring will come. Government logistics are already improving and vaccine supplies increasing. We will emerge from pandemic isolation eventually. I promise.

We have made it this far and proven our resilience. Surviving coronavirus with our sanity will not be easy, but we can make it easier by reframing our experience. Looking across my desk to the snowy garden beyond my windows, I live in hope.  

A Response to January 6, 2021

My shock and anger while watching the insurrection and attempt to decapitate the U.S. government at the U.S. Capitol on January 6 have turned into dragon-fire anger and steely determination. The future of American democracy is at stake.

I’m angry at those who planted and fed poisonous weeds of hatred and insurrection. I’m angry at elected officials who broke their oath to uphold the Constitution, enabling and inciting insurrection. I am angry at all who discounted and therefore enabled the damage Donald Trump was causing American democracy. I’m angry at those who still spread the lie that Donald Trump won the popular vote. Sixty judges disagree with you. Stop tearing our country apart and fomenting civil war. America is too great to let you destroy it.

The Scorpion and The Frog

Do you remember the story Trump told during his first presidential campaign about a charitable woman and a poisonous snake? The poem by Oscar Brown, Jr. is based on one of Aesop’s fables. In the original, a scorpion asks a frog to carry it on its back across a river. The frog doesn’t trust the scorpion but agrees to do it. In the middle of the river, the scorpion bites the frog even though this means both will die. The dying frog protests what the scorpion has done, and the scorpion replies, “You knew I was a scorpion when you let me climb on your back. Why are you surprised that I’m killing you?”  

Those who voted for or propped up the current occupant of the White House owe this country an apology for putting him on our nation’s back. He told you in word and deed that he is a scorpion.

Either you did not believe your ears and eyes, or you thought his poison would spare you. You may have thought certain policies and the appointment of judges were worth his vile, racist, anti-democratic, and corrupt character; but you were wrong. You thought his abusive treatment of women, denigration of a reporter with cerebral palsy, and treatment of Gold Star families ought not to be given credence as signs of a deep and dangerous pathology. You were wrong.

Poison from this scorpion threatens the life of America as we know it. Now that we see where he has led us and how fragile our democratic system is, America needs all of us to be an anti-venom ridding our national body of the poison he unleashed upon us.

All Enemies, Foreign and Domestic

The American Experiment has been threatened before. From the War of 1812 (when the U.S. Capitol was last breached), to Secession and the Civil War, World War II, the Cold War, 9/11, and international and domestic terrorism, previous Presidents have honored their vow “to support and protect the Constitution of the United States of America against all enemies, foreign and domestic” (from the Oath of Office sworn by all elected officials and military service members of the United States).

However, instead of fighting current threats to our country from foreign and domestic enemies, Donald Trump has encouraged them. From “good people on both sides” to “stand back and stand by,” to his words on January 6 he protected and encouraged the beastly forces trying to destroy the American form of government. He fanned their fires, and they will still burn after he leaves the White House. The riot on January 6, 2021 ripped away the curtain, exposing these officials, individuals, groups, militias, and movements for what they are: an accelerating attempt to foment insurrection and overthrow American democracy and the United States Government.

Even if many of the 74 million people who voted for Donald Trump’s re-election couldn’t imagine Donald Trump would encourage a violent insurrection, the warning signs were in the open, cheered on by him and his sycophants:

  • Attacks on public health officials, governors, and state capitols,
  • Threats against election officials and poll workers,
  • Reduced national focus on cyber-security
  • Lies claiming widespread voter fraud,
  • Proliferation of White Nationalists groups and militias.

Words matter.

Yelling “fire” falsely in a crowded theater is not protected as “free speech” because it can cause death as people stampede to the exits. Lying under oath is a crime because truth is essential in the pursuit of justice. Our personal experience tells us that words can either escalate conflict or calm tensions. They can cause distrust or greater understanding. Taunting words can lead to fistfights and bullying can lead to suicides. Words can also bring about forgiveness and reconciliation. Never underestimate the power of words.

Conflicting Images

I will never forget the images of armed men and women in the Senate and House Chambers, the woman shot while breaking the House Chamber, the man with his boot on the Speaker Nancy Pelosi’s desk, the man carrying the Confederate Rebel flag through the Rotunda, insurrectionists beating a police officer on the steps of the Capitol with poles wrapped in the American flag, men wearing shirts that celebrate the Holocaust as they walk through the Capitol. These are not people who revere democracy. No matter what their occupation, they are thugs, racists, anti-Semites, right-wing Christian zealots, and insurrectionists. Their goal was not to save but destroy American democracy.

On the other hand, two other images from the week give me hope. The first is video of Capitol Police Officer Eugene Goodman walking backwards up a majestic marble staircase Wednesday afternoon with only a nightstick in his hand. It appears that he is being chased by a mob of Proud Boys with poles and firearms who might kill him. Later, America learned he wasn’t retreating but courageously leading them away from the still unsecured Senate Chamber. (See video here) This provided enough time to evacuate the Chamber and for officers to prepare for the invaders. He saved the lives of senators, staff, and their families. His courage inspires me to be courageous, too.

The second image is a photo of Congressman Andrew Kim (D-NJ) picking up trash in the Rotunda during the wee hours of January 7 left behind by the rioters. Saying that he was horrified by their desecration of the sacred symbol of American democracy, he filled dozens of trash bags with water bottles and soda cans. (See photo) When morning came, he put on a clean shirt and resumed his legislative business. Kim’s humble dedication gives me hope.

A National Reckoning

One of the men seen in the Senate Chamber carrying a bundle of plastic ties acknowledges plans to capture and assassinate the Vice-President and congressional leadership. At least one police officer died from injuries suffered while defending the Capitol, another lost an eye, and others suffered head injuries. One of the officers bludgeoned by rioters on the Capitol steps had a mild heart attack during the beating. This was not a protest. It was an act of domestic terrorism.

This is not yet a time for healing, although that will come. This is not a time for singing Kum-Ba-Yah and holding hands with people who participated in an insurrection. It is a time for honesty, contrition, accountability, and courage. Twelve generations have shed blood on behalf of the U.S. Constitution and protecting American democracy. Additional blood was shed in its defense last week. We owe them and previous generations a debt to protect what they have protected on our behalf.  

The time has come for a national reckoning. We must hold rioters and insurrectionists accountable. Violence, hate speech, rioting, insurrection, assault, vandalism, and murder are never acceptable. We must be clear-eyed, honest, and courageous. Courageous as we reach out to family and friends with whom we disagree. Courageous in identifying rioters to the F.B.I. Courageous in acknowledging our mistakes and asking forgiveness.

Communicate your gratitude to elected officials who upheld the Constitution, in Washington, D.C. and elsewhere. Pray for elected officials, as well as their staff and families. Pray for our country. Pray for the in-coming Administration and legislators. Tell the truth. Treat people respectfully on Facebook. Withdraw from QAnon websites, Parler, and other sites where lies and hate proliferate. Reduce the time you spend on social media.

Do not return evil for evil. Do not bear false witness against others either on-line or in conversation. Be honest and respectful. Seek understanding. Help those in need. Be kind.  

The events of the past week are a clarion call for us to make American democracy stronger and more resilient. With courage and hard work, we will bring forth a more perfect union from the wreckage of the insurrection. America’s future is at stake.