Choices

Recently I read an article about a person who died from COVID-19 who had previously proclaimed the pandemic a hoax. My heart hurts for this person’s family who is having to deal with their grief while also dealing with the public’s “I told you so” fingers as if they had not already learned this lesson in the hardest possible way.

I understand wanting to believe that the numbers, the narrative and the projections are overblown. I admit that in the earliest days of the virus I had my own doubts.  I questioned whether the measures being instituted were necessary, until I dug deeper into the research. For those facing loss of income, bankruptcy and an uncertain future, I fully understand the urge to push back, but viruses do not discriminate. They do not care if you believe in their power or not. They continue to do their job.

The alternate narrative continues to take lives and provide fuel for a movement that dismisses science and wisdom for wants and wishes. While polls imply that most Americans have come to accept the current threat, that old version still acts as a lifeline for a smaller group of people. People pressured by economic impacts. People who do not trust the media. People who do not trust science. Those in doubt point to a lack of testing combined with inaccurate testing that would support a much broader spread rate and therefore a much lower mortality rate. They continue to compare this virus to the flu. Between Feb. 1 and Apr. 18, 2020, there were 5,474 deaths caused by the flu and 21,050 deaths caused by COVID-19 in our country. (Dr. Milton Greenberg sourcing  https://www.cdc.gov/nchs/nvss/vsrr/COVID19/.) Regardless of the lack of accurate testing data, these numbers do not support that comparison.

Over the last few weeks, we have begun to see images of demonstrators gathering across the country protesting the restrictions. A few governors have bowed to that pressure and are relaxing measures against the advice of medical experts. These decisions may cost lives as they jump ahead of the strategic roadmap set by the experts for re-opening and, instead, race toward possible new hot spots.

As the country starts to reopen our doors in the face of this type of conflicting guidance, you still have a choice. You have the choice to listen to the medical experts and continue to follow their guidance. You have the choice to continue practicing social responsibility. I truly hope beyond hope that the next few weeks prove our experts wrong, but until the NIH, CDC and epidemiology experts bless lifting the current restrictions, are you willing to bet someone else’s life on choosing differently?  

Until We Meet Again

My dad and mother divorced when I was a sophomore in high school. Other than having to acknowledge their altered legal status, my day-to-day life really did not change. My dad was an Army officer who had spent much of my childhood deployed or stationed in remote areas that took him away from our family. When he was home, he spent his free time with a mixed drink in one hand and a book in the other as he did his best to hide from the demons that followed him home from Vietnam. By the time my parents separated legally, I had become used to life without Dad.

My sophomore year was also the year he decided to fight his demons. He gave up alcohol and cigarettes for Tab and licorice. He put in the hard work, created a better life for himself and somewhere in that process renewed his relationship with God. During my junior and senior year, we were able to start forging a new and improved relationship. 

And then I left home. I attended an out-of-state college just shy of my eighteenth birthday and married just shy of my twentieth. Over the next 26 years while my husband remained on active duty, I lived in 17 different homes spanning Georgia, Texas, Germany, Arizona, North Carolina, Kansas and Virginia. 

Our newfound relationship became victim to distance, time and life. Visits home often aligned with moves, but we found very quickly that a week did not go far when trying to spread our time across three sets of parents, extended family and hometown friends. At some point it became clear that if we were to spend more time together, Dad would have to come to us. We had been married about ten years when we started a new tradition. Dad began joining us for spring break visits every couple of years. 

Our last spring break visit together was Easter 2016. Within an hour of Dad’s arrival, I was called to the ER with my daughter. It was the beginning of a rapid decline that led to her diagnosis of moyamoya disease. It was also the beginning of my Dad’s slow decline. He had injured his knee a few years prior. The doctor advised him that he needed a knee replacement, but he had been putting it off. By the time we saw him that Easter, he was unable to walk farther than a block. Knee replacement surgery could not be put off any longer.

Delaying knee surgery exacerbated hip and back issues. Knee replacement surgery was followed by hip replacement surgery. Each surgery seemed to sap Dad’s strength further. Six months after his hip replacement, he contracted a bad case of the flu that landed him in the hospital. It was during this hospitalization that they discovered he had stage four liver cancer. Over the next 18 months, I traveled back and forth to Florida as Dad’s health continued to decline. It was not lost to either of us that we had spent more time together in those final months, than we had in the previous 20 years. 

Dad gained his angel wings this past August. Since his passing I have found myself marking many firsts. My first birthday without Dad. My first Christmas without Dad. My first trip home without Dad. My first Easter without Dad. Each first is accompanied by a new wave of grief. 

I was feeling that wave this morning when I decided to join my mom virtually for Easter services. The minister began the Easter message by telling a story about a son who had just lost his father to COVID 19. His dad had been admitted to the hospital 13 days before. Due to current restrictions, he had not been able to accompany his father to the hospital. Throughout the hospitalization, he could only call or text his father to see how things were going.  He could not be with him, as I was with Dad. 

As the days progressed, he could hear his dad’s decline. Confusion set in. On the tenth day his father stopped answering the phone and responding to texts. His son continued to send texts anyway. On the thirteenth day, he received the news that his father had passed away. Despite his grief he was able to also share his gratitude. Gratitude that he knew his Dad was reading his final texts in heaven. 

And there they were. The pieces I had allowed myself to lose sight of in my own grief. Gratitude for the time and relationship we did have. Awareness that my dad may have left this world, but he had not left me. Understanding that we are forever connected through our relationship with Christ. Relief that I don’t have to regret the conversations we did not have. Peace that I don’t have to feel sad about the conversations we are not having. Assurance that in God’s perfect timing, we will start the conversation again.

  

Happy Easter, Dad. I will carry you in my heart until we meet again.

Connection

We were on the way to find a Steak and Shake for lunch when my daughter received the call that would change life as we knew it. We had spent the morning at the Mayo Clinic in Jacksonville, Florida, completing brain imaging tests. We had a two-hour break until her next appointment, so we decided to take advantage of being near one of our all-time favorite burger joints. 

We received the call shortly after we left the clinic. This was the first time any of us had ever heard the term “moyamoya disease.” Our neurologist went on to explain that this was a rare disease impacting less than one percent of the population. It causes narrowing and occlusion of the internal arteries to the brain.  As the brain becomes starved for blood, it starts to grow a collateral network of smaller, fragile veins to overcome the reduction in blood flow. This collateral network of veins appears like a puff of smoke on imaging. The word “moyamoya” means “puff of smoke” in Japanese, which is where the disease was first identified and named. 

When I first heard we had a diagnosis, I was filled with relief. We finally had answers. With answers we could build a treatment plan. With a treatment plan we could deal with the problem. Once we dealt with the problem, we could get our daughter back to parenting, back to work, back to life as she knew it, before life as she knew it changed. 

Three months earlier, Chelsey had been working full time, parenting an 18-month-old and was in the throes of purchasing her first home. Two weeks after closing on her new home, she took a five-day cruise to Mexico to celebrate her 25^th birthday. When she returned, she could not get rid of her sea legs. Sea legs progressed to severe vertigo followed by headaches, confusion, double-vision, debilitating fatigue, balance issues, tremors and movement issues. We spent weeks bouncing from one specialist to another. After she started having garbled speech and numbness in her left arm, an ER doctor at the Virginia Hospital suggested she might be having transient ischemic attacks (TIAs) or ministrokes.  She wanted to admit her for additional imaging, but the on-call neurologist dismissed the ER doctor’s concerns and instead pointed to her age, her sex and her history of anxiety. The ER doctor felt strongly she was on the right track and suggested we get a second opinion.  It was at this point we decided to drive ten hours away to Mayo Clinic in Jacksonville where we felt we could expedite the diagnostic process. 

This proved to be a good decision. Within two days of her first appointment, we had a diagnosis. When we hung up with the neurologist, we started high fiving each other. We had validation. We had a name. There was a sense of victory in the car. 

And then we started googling. It didn’t take long for relief to turn to fear. Over the next two weeks as we marched our way toward her first brain surgery, our emotions were all over the place. Up was down, down was up. We flitted between hope, calm, terror, grief, faith, fear, expectation and the surreal feeling that we had woken up to find ourselves in the middle of a Lifetime movie. 

Two nights before the surgery, feeling particularly restless, I decided to create a private Facebook group. I had been struggling to keep everyone who loved Chelsey updated. Instead of having to make multiple calls and texts, I could simply post one time in one place and get the updates out quickly and efficiently. 

Little did I know that one act would be a defining moment in our journey. We had left home expecting we would only be away for at most a week. Three weeks later, we were still facing brain surgery and a hospitalization before we could begin to think about going home. Our family and friends were strewn across the country with the closest two hours away and the farthest a country away. Our normal support network was far from reach. But as soon as our Facebook site went live, messages of hope, faith and healing swept across our Facebook feeds. People started offering hotel points, places to stay, meals for when we returned, information and connections. We were pointed virtually to another family that had been diagnosed with this disease through a mutual friend. They pointed me to an online support group that has become our single biggest resource. Out of this virtual community, I have forged deep relationships. These virtual friends have grown over time into my moyamoya family, despite the fact I have never met most of them in person. 

In the last few weeks, our country is waking up in the middle of their own Lifetime movie. It is difficult to see the happy ending. “Sheltering in place” and “social distancing guidelines” are separating us from our usual support groups, but that does not mean we are alone in this. “Virtual” connection platforms like Facebook, FaceTime, Snapchat, Messenger, Zoom, Teams and other 20^th century technologies allow us to engage with each other in ways our forefathers could only dream of.  It is through these platforms that we are still able to walk “hand in hand” while remaining apart. While I am the first to admit that “social media platforms” come with their own set of problems, I am still exceedingly grateful that during this time of mandated separation, connection is as close as my keyboard.