A COVID Thanksgiving

Thanksgiving is my daughter’s favorite holiday. As a military family, we were rarely able to travel home to spend the day with family, so we recreated our home by inviting other military families and soldiers to share our table. These friends became what we lovingly refer to as our Army family. They are by far the best byproduct of my husband’s 26-year Army career and the number one reason my daughter relishes Thanksgiving.

Thanksgiving looked a little different for us this year. Instead of a table for 25, we enjoyed a prime rib dinner for three. We will enjoy turkey together on another day. As with the rest of the world, our Thanksgiving tradition is just one of many things that has been impacted by COVID. While COVID has been hard on everyone, it comes with extra challenges for my daughter. 

For those who may not know my story, my daughter has a rare, chronic, progressive brain disease, moyamoya (MM). It causes narrowing of the arteries in her brain which chokes off necessary blood supply. Symptoms can include strokes, transient ischemic attacks (TIAs), seizures, headaches, tremors, movement disorders, anxiety, depression, cognitive issues and fatigue. In and of itself, her disease does not make her more prone to catch COVID, but it does place her at higher risk for complications. Because she has developed secondary impacts to her adrenal glands and thyroid from her MM, her risk for complication is further magnified. Just prior to the pandemic, she caught the stomach flu and ended up hospitalized for four days. 

What has the pandemic looked like for my daughter and many other chronically ill Americans? 

Hypervigilance around masking, social distancing and hygiene. Strict protocols and limitations around all in-person interactions including trips to stores, pharmacies and doctor’s offices. She and those who love her have to remain in constant risk evaluation mode. Is X social distancing or are they posting pictures on social media that show otherwise? Does Y advocate for wearing masks or do they bemoan them? Is a trip to the store necessary? Can anyone else go? Are people wearing masks walking into the store? How many people are inside the store? Can I manage my symptoms virtually from home? Do I need to delay my annual MRI/MRA to check for progression? Should I delay testing my cortisol levels? Can we afford the risk of sending my son to school in person? 

Increased anxiety around medical supply chain disruptions. As a patient with adrenal insufficiency, she does not produce cortisol, a hormone that is necessary to survive. Without her daily replacement medication, hydrocortisone, her body will eventually go into an adrenal crisis, the number one cause of death in adrenal insufficient patients. Hydrocortisone is used to treat inflammation, autoimmune diseases and other medical conditions in addition to adrenal insufficiency. With the onset of COVID, one supplier stopped producing the medication creating a shortage in the marketplace. This placed her and many other patients in harm’s way while the pharmacies sorted out how to prioritize the medication for those who needed it critically. The realization that her life depended on the ability to get a medication in short supply was sobering. 

To complicate matters, as people delayed non-urgent medical appointments, prescription demand slowed. Pharmacies stopped placing daily medication orders. Shippers started reducing staff, and shipments started taking longer to get to pharmacies. Insurance regulations, however, did not change. You are only allowed to fill prescriptions within a certain window of when your prescription ends. Pharmacies will not order before the insurance approves the medication. This has led to multiple instances of gaps between one prescription ending and the refill arriving. 

Neurofatigue took on new meaning when it came to having to parent 24/7 without the breaks that in-person school provided. Stepping into the role of teacher’s assistant has escalated the problem. Her exhaustion levels are extreme. Cognitively, it is amplifying memory and processing challenges. Her neurologist decided to prescribe home health care support, but after conferring with her neuroendocrine doctor, became more concerned about the risk of bringing the virus into her home. Ultimately, he has added an additional medication used by patients with MS to combat neurofatigue. 

These are just a few of her daily challenges. By far the hardest thing she has had to deal with during this pandemic are her feelings about the people who do not believe COVID presents a problem. Those who deny the need to wear masks; who argue against social distancing measures; who point to 98 percent survivability statistics to justify their views;  who argue that a two percent death rate is an acceptable loss, so they can continue to feel normal. It is hard not to see herself in those comments as the sacrificial lamb to another person’s comfort. 

I believe in my heart that if people put faces to the numbers, these arguments would die a quick death. I am asking you to please read the virtual booklet below. It was created by two moyamoya patients and their families to raise awareness by sharing patient stories. Each of these individuals is at higher risk for complications. Each of these patients deserves our protection. 

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.flipsnack.com%2Ffacesofmoyamoyadisease%2Ffaces-of-moyamoya-disease%2Ffull-view.html%3Ffbclid%3DIwAR2slU7G8Z2OeT5ouoElLP8F1scW_ZUrFozPnJ3KFFICRttgsyOh3xESHBQ&h=AT0SYHTHSUV86-P18cFf9ILpBhkoiVVIucBLja9U5Lh3L49ChAuCRIsowuBguA5DHKFo9ZUsrVZzenogjexrIJSOSdP-2FhVj6agS4_cb8C75C6YEVx4QXp1ORXPA7DirQ&__tn__=-UK-R&c[0]=AT02LQG5lnUAu62wT4WZ1oo9m-E-a9nSrz4ET5XAPrOF6F1kTY71IA0STSqHZwbaaUakZApgBIyL-Qaihxortoc4oq99RUONdN_qjvdzULi3KTJTs-F_bzX-TU-8eGVRZdhvD-hwROd34_g7RWKLbUUuEGw 

Giving up my big Thanksgiving this year was hard. Wearing a mask sucks. Not being able to visit regularly with friends and family pisses me off. I am tired of social distancing, but I know it would be far worse to live with my guilt should a choice I made result in a forever consequence for someone else.

The day after - a call to reconcile

I voted.

I am a fiscal conservative who is socially liberal. I believe in a strong military defense, but I expect Congress to be judicious in sending soldiers into harm’s way. I believe there is a fine line between necessary public safety legislation and government overregulation. I do not fit neatly under any political party’s platform. I have voted Republican and Democratic and found myself drawn to the occasional Libertarian. I am a swing voter

For through the Spirit we eagerly await by faith the righteousness for which we hope. For in Christ Jesus neither circumcision nor uncircumcision has any value. The only thing that counts is faith expressing itself through love. Galatians 5:5-6

The lead-up to this election has been the most divisive in my lifetime. Life and death issues have caused people to take sides. Disinformation has fueled partisan divide. People cast their votes this election to act on what they view as moral imperatives—racism, abortion, capital punishment, women’s rights, gay rights, immigration. Others were  driven to vote based on their view of how to protect their loved ones in the world –  people who believe access to guns is critical to self-defense and reducing violence, and others who believe that easy access to guns fuels crime and violence; people who believe a strong defense deters wars and others who believe a strong defense encourages wars; people who believe expanding social security programs enables dependence and others who believe expanding social security programs is foundational to independence; people who believe the government has a responsibility to ensure affordable medical care for all Americans; people who believe government interference in the medical system will dilute medical care and limit access.

We hope to see our votes shape the world we want to see.

Accept the one whose faith is weak, without quarreling over disputable matters.  One person’s faith allows them to eat anything, but another, whose faith is weak, eats only vegetables. The one who eats everything must not treat with contempt the one who does not, and the one who does not eat everything must not judge the one who does, for God has accepted them. Who are you to judge someone else’s servant? Romans 14: 2-4 

We will soon learn if our individual votes delivered our presidential candidate. Inevitably, some are going to be disappointed, dismayed and discouraged. Some will look to those who voted differently and think, “How could they?” Some will be drawn to anger, frustration and judgment; others to finger pointing, name calling and further division. Most will feel righteous in their response, but Jesus did not cloak us in judgment; he robed us in grace.  

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! All this is from God, who reconciled us to himself through Christ and gave us the ministry of reconciliation: that God was reconciling the world to himself in Christ, not counting people’s sins against them. And he has committed to us the message of reconciliation. 2 Corinthians 5:17-19 

On May 10, 1994, Nelson Mandela invited his white jailer to attend his inauguration as an honored guest. He understood that to heal his country from the wounds of apartheid, he first had to reconcile his country. Regardless of which candidate takes office in January, individually we can all make a difference in healing our country. Jesus called us to forgiveness, not revenge. He understood it is only through reconciliation that people’s choices are made clear.