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.