No Excuses

It happened again. Another week, another horrific news report of a senseless black death in America. Racism has been on violent display this month across the country amongst our men and women in blue. 

It is heartening to see calls from white Americans to white America demanding they take a stand—a stand against racism, neutrality, acceptance of the murder of black Americans in our country.  But to effect systemic change, we need to hear from another group. We need our men and women in blue to break ranks from their “thin blue line.” We need them to hold their own accountable. We need them to step up, not away. We need them to step in, not stand by. We need them to take ownership and start saying, “Not on my watch.” 

Three policemen stood by while another policeman knelt on a man’s neck for nearly nine minutes causing a fatal injury. They did not say a word against the action. The man told them he could not breathe. They did not step in to stop the action. The man cried for help. They ignored the man. The man passed out. They did not intervene. 

As time passes, we will hear of the good things each of these men have done for their community. But despite any good they may have done prior to taking George Floyd’s life, on that day, they chose racist assumption, excessive force, and callous inhumanity. On that day, their choices took a man’s life. That life deserves justice. Those choices merit punishment. 

But the undebatable truth is our system favors a violent policeman over black victims, and excuses over accountability. Those men should have gone straight to jail. Instead they were fired and sent home. As of this morning only one faces charges. Yet, over the last week we have seen quick arrests of the protestors who allowed emotions, frustration, and despair to overflow into violent protest. 

Why are  the men and women in blue not held to the same standard? The system continues to protect them. They continue to protect each other. The nature of their job becomes an easy deflection point for blame. We expect violence to protect us. We are surprised when that violence takes a wrong turn, because despite the nature of the job, we expect our policemen to exercise control. A daunting task? Yes. Being exposed to violence, death, and crime on an ongoing basis changes a person. Over time, these changes can feed a coldblooded view of the world. But not every policeman turns frustration into fists or a callous disregard for humanity. Racism is the magnifying glass that ignites those flames. 

I have family members and friends who wear the badge today. I know that my life is safer for their presence, but the same is not true for my black brothers and sisters. Until that simple statement gets fixed, the badge remains tarnished and the force remains complicit.

Policemen must take the lead on fixing this problem. They must take a stand against profiling and racism within their precincts. They must intervene when they witness the use of excessive force. They must stop making excuses and hold their own accountable.  They must stamp out racism within their community. They must lead the change our country cries out for

The truth we choose

Four months into the pandemic with 300,000 deaths reported worldwide (100,000 of those deaths our fellow Americans), there remain people who still believe that the coronavirus is an overblown hoax. While skepticism about the seriousness of the virus in the earliest days was understandable, to believe this theory now, you must conclude that worldwide, physicians and scientists are reporting false information. You must believe that globally, leaders are abetting a false narrative. You must believe the majority of journalists reporting the stories are lying. You must buy into the idea that rest of the world is “in on it.” Despite these leaps and the enormous amount of readily available evidence to the contrary, this theory continues to find life. Why?

At the heart of the problem are targeted campaigns led by special interest groups flooding our networks and social media platforms with disinformation in the form of new reports, articles, statistics, medical specialists, and economists. Journalism, once considered a reliable source of objective information gathering, has become tarnished by the rapid 24-hour news cycle pressuring reporters to take short cuts. Fact checking has fallen victim to getting the headline out first. Headlines have become sensationalized to fuel viral responses. Financial and political drivers have shaped stories. Bias has bled into broadcasting.

Social media magnified the issue. It was the ideal platform for those with an agenda to weaponize “fake news” and legitimize it.  It continues to thrive as the knowledge management tool of choice for special interest groups to reignite debunked theories and bring them back to life. With advancements in artificial intelligence and the development of Social Media BOTS, a viral campaign has become as easy as updating a software algorithm. With an overabundance of false, misleading, and bad journalism on ready display, good journalism has become hostage to bad journalism. Truth has fallen victim to conspiracy theories. All journalism has become suspect. Never has it been easier to dismiss data, overlook objective reporting, and lean toward a “truth” that aligns with what we want to hear versus what we need to hear.

At a time when our choices greatly impact the lives and livelihood of others, we have a responsibility to ourselves and others to change our behavior. We must stop rewarding disinformation campaigns with viral responses. We must stop choosing truth through our political lenses; we must start finding truth through a lens of objectivity. We need to pause and investigate before we share. We need to read more, research more, and dig deeper. We must vet sources and information for authenticity. We need to validate credentials, relevant experience, and proven experience. We need to balance the news we take in each day, by following multiple sources with diverse viewpoints, not just those whose views we prefer.

If we are to save lives and save the economy, we cannot afford to keep choosing our truths based on snippets and soundbites or Facebook folly. We must hold ourselves responsible to search, investigate, and find the honest and objective truth, even if that truth leads us someplace, we never expected nor wanted. 

There is no room for tolerance when it comes to racism

Proverbs 3:27-30 “Do not withhold good from those to whom it is due, when it is in your power to act. Do not say to your neighbor, “Come back tomorrow and I’ll give it to you”—when you already have it with you. Do not plot harm against your neighbor, who lives trustfully near you. Do not accuse anyone for no reason when they have done you no harm.”

I am a person who has long preached tolerance and acceptance. Tolerance – for differing points of views. Acceptance – for people who come with a differing set of beliefs than I do. Understanding – that people’s actions most often stem from the unique pressures driving their daily lives. It is a belief system that has aligned well with my Christian viewpoint until this week.

This week I have found myself sickened by the news of a young black man out for a jog, accosted and subsequently killed by two people making the broadest of assumptions – a black man running equates to a criminal running. I was appalled by the fact it took two months and a released video to precipitate an arrest. Today I have a vastly different message.

There is no room for tolerance, acceptance or understanding when it comes to racism. Racism is not a viewpoint; it is a cancer. This cancer will continue to take lives if we do not eradicate every diseased cell.

Over the last fifty plus years of my life, the civil rights movement has been waging a powerful war against racism. It seemed they had made huge strides in leveling the playing field for a community of people that had previously been disenfranchised and disempowered. But like many hard-won remissions, those rewards have proven to only be temporary. As with any other type of cancer, leaving a single, tiny cell ensures regrowth. The last few years have proven that despite previous aggressive treatment this country is out of remission.

I am ashamed to admit that lulled by the movement’s successes, I moved from advocacy to complacency. I allowed myself to believe that institutionalized racism was behind us. I bought into the idea that the playing field had been leveled. I let myself believe that the racism of my grandparents’ generation was all but gone as each subsequent generation awoke further to racism’s inequities. I imagined that my grandchildren’s children would only know of institutionalized racism through a history lesson.

I allowed this complacency to bleed over into the smallest of choices. Choices to opt for silence over confrontation and harmony over conflict. A decision to let a slanted comment slide by. A choice to let a poor joke go unchecked. A call to delete an off-color email or a choice to scroll by an inappropriate meme.  I told myself that these types of comments/actions were the anomalies now. They had no power in a world where most Americans believed in equality, in fairness, in right. I was wrong.

Leaving a single, tiny cell ensures regrowth.

As John Pavlovitz so eloquently said in his recent blog posting - https://johnpavlovitz.com/

“You oppose the inhumanity, or you abide it. You condemn the violence, or you are complicit in it. You declare yourself a fierce and vocal adversary of bigotry—or you become its silent ally.”

There is no room for tolerance or understanding when it comes to racism. I was culpable. I was complicit. NO MORE.

A day in the life of my moyamoya warrior

There is much to love about May. My oldest daughter came into the world on May 6. My grandson was born on May 14. My dad, my little brother, my nephew, my cousin, my best friend’s husband and my daughter from another mother all came into the world in May. There is much to love about the month of May.

Four years ago, in May, we marked the beginning of a different type of remembrance. On May 11, 2016, my youngest daughter was diagnosed with moyamoya disease, a rare, progressive, incurable cerebrovascular disease that can ultimately lead to strokes. She had her first brain surgery May 27, 2016. We came to learn that May is recognized as Stroke Awareness Month, and in a strange twist of fate, May 6, her sister’s birthday, is recognized as Moyamoya Disease Awareness Day. Four years ago, there was not as much to love about the month of May.

If I am honest, as much as I look forward to the birthday celebrations of those people whom I hold most dear, the month of May remains bittersweet for me. Sweet—that I am blessed to have my daughter in my life to share in those celebrations. Bitter—fully understanding that her life has been indelibly changed by this disease.  For all the appreciation I feel for my daughter’s life today, I am still a Mom. As a Mom, I would erase every hardship. I would eradicate this disease from her life if I only had that power.

But the power to eradicate this disease lies with others in our medical community. One group of specialists has already risen to this challenge—the neurosurgical community that has researched and developed lifesaving surgical interventions to provide alternative routes of blood flow to brains that are dying slowly from a lack of blood supply.

The challenge, however, is that outside of the neurosurgical community, the remainder of the medical community has little to no exposure to this disease. Moyamoya is considered “rare” across the neurological community, but it is virtually unheard of across the remainder of the medical community. The brain is the organ that controls messaging to the rest of the body. When the brain is injured, the rest of the body can feel that impact in some other way. Neurosurgeons do surgeries. Neurosurgeons are not meant to manage lifelong chronic diseases that impact other systems within the body. This leaves a tremendous gap in care for moyamoya patients and is a primary driver for my ongoing efforts to raise awareness.  

As we approach my daughter’s fourth anniversary of her diagnosis and our third year supporting moyamoya awareness activities, I decided the best way to spread awareness this month was to share a day in my daughter’s life. Four years later, she has found her way back to a new normal. It is not the normal we imagined in our earliest days after diagnosis, but it is a life that still manages to bring her joy despite her physical challenges. It is a life we are incredibly grateful for.

A day in the life of my moyamoya warrior

My daughter awakens on an average day around seven AM. Mornings are not easy for her, because sleep is not easy for her. She wakes after most nights still feeling tired. On good days, she can rise, take her blood pressure (laying and standing) and take her morning medications, before she starts the rest of her day. On more challenging days, she needs her husband to bring her medications to her and take time for them to start to work before she can start moving. On bad days, the act of rising from her bed triggers a transient ischemic attack (TIA). On those days, she typically will have to spend the rest of the day in bed or on the couch.

On a good day, she will check her calendar to see what activities need to be done that day. Her calendar has become the bible that helps her stay on track. After two strokes and two brain surgeries, she has both short and long-term memory deficits. Working with occupational therapists, she has developed a system that relies on notes in her calendar and alarms on her Apple Watch to ensure that she meets her tasks each day. She has alarms set to remind her to take her medicines; alarms set to remind her of all family appointments; alarms set to remind her to eat; alarms set to remind her to take and pick her son up from school; alarms set to remind her to pick up laundry, get gas, get groceries. These tools have proven invaluable in helping her stay on track.

The calendar provides a dual purpose. Not only does it work as a visual reminder of her day. It allows her to look ahead to plan out her day physically. She does this to ensure that she does not burn out early in the day which could force her to miss a more important event later in the day. If she has multiple big events in a day, she often needs to pick and choose, knowing that her body will only cooperate for so long.

Overstimulation to her brain in the form of crowds, activities that require intense concentration, or high stress activities both good and bad, are important factors in her calculations. These types of activities can trigger headaches and brain fatigue, which also translate to downtime. Her life has become a study in balancing her wants with her abilities. Some days she manages that balance better than others. A miscalculation can result in multiple days of forced down time. Over time we have come to understand that there are times she needs to choose joy and emotional wellbeing over physical well-being. She may pay for her choices physically, but those choices bring the intangibles that still make life worth living.

On a good day, she takes her son to school (which right now means she is teaching him, too), plays with her son and helps with his homework; she walks and feeds the dog; she does laundry; she helps pick up around the house; she does arts and craft activities; she volunteers at her son’s school; she does the dishes until somewhere between 4 and 5 in the afternoon.

Late afternoon is her witching hour. It is rare she has energy left at the end of the day to cook a meal, to play a game, to get her son in his pajamas. Some evenings it is even hard for her to hold a conversation. Evening is not her friend. On the days her calendar shows an important evening event, she has learned it is wisest to leave the rest of her calendar empty. That does not guarantee she will physically make it through a dinner with friends, a date night with her husband or a family dinner gathering, but filling her calendar almost definitely assures she will not be able to make it.

On a challenging day, she puts her energy into only those things needed to care for her son. Her husband remains the rock who steps in where she leaves off. On a bad day, she has a village of loved ones (myself, her dad, her sister and in-laws) who also jump in to lend a hand. She struggles with unnecessary guilt for needing additional help. The guilt of not doing enough or being enough for friends and family has often been the impetus for making decisions to push forward on activities that ultimately set her back.

There was also a time when it was far harder for her to see the blessings in her life. As she struggled through a long period of continual bad days, it was understandably hard for her to view her life through any other lens than loss. Four years in, while I know her heart still longs for so much more, she has worked her way into a rhythm that has allowed her to move from anger to acceptance and from grief to wellbeing. Her good, challenging and bad days are evening out. Four years in, she has found her way back to a new sense of “normal.”

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.