“Mom call an ambulance,” cried my son Shane on a fateful late evening in early October 2018. That plea for help changed my son’s and our family’s life in an instant.
The plea occurred, while preparing a late-night snack, discussing the baseball playoffs. My son fell backward onto the bar stool and his face went flush.
“Hello, my son needs help” I cried to the 911 Operator. When the ambulance arrived, his heart rate was in the 130’s. In the days and months ahead, we took numerous trips to several different emergency rooms and doctor office’s in the search for answers. As a military spouse-caregiver to my wounded soldier, these types of trips were something I was accustomed too.
Over a very quick period of time, I watched as my twenty-four-year-old son went from being just weeks away from graduating college to bedridden. As a family, we were left no answers as to why he could not stand or even sit upright without the feeling of passing out. We witnessed spikes in his heart rate and heard his cries while he endured chronic painful sensations that have taken hold of his body. He began losing interest in the things that defined him. Such as his passion for Major League Baseball, football, WWE, and the upcoming NBA basketball season.
The question of “Why can’t our son stand up?” was left looming over the entire family and taking a toll upon him mentally. In a flash, my son’s life was stolen from him. In a visible sense, our son looks like a healthy young man with his entire life ahead of him. Yet, something was attacking his body and the cause was a mystery.
As a family, we are not strangers to coping with invisible illnesses. Shane’s father is a wounded veteran from his service in Operation Iraqi Freedom. Shane was just ten years old when his dad returned home from Iraq and he has grown up watching his father battle both Post-Traumatic Stress Disorder and Traumatic Brain Injury since the moment he arrived home. As a family, we have worked diligently to understand and cope with the invisible wounds that took ahold of our family. Now fifteen years later, Shane finds himself battling an invisible illness of his own. As a family, we are in the midst of a second battle with the unknown.
In a search for answers we began to reach out to friends in the medical field, explaining his symptoms. Thus, we began to form an idea of what this mystery could be. It was our belief that Shane was suffering from the chronic invisible illness known has POTS (Postural Orthostatic Tachycardia Syndrome). Postural Orthostatic Tachycardia Syndrome (POTS) is an illness that affects circulation (a person’s blood flow). POTS Syndrome is a form of orthostatic intolerance. It falls into the Dysautonomia family and The Cleveland Clinic defines the symptoms as “the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting, and an uncomfortable, rapid increase in heartbeat” (Cleveland Clinic, n.d.).
From the moment Shane felt the sensation of his heart racing on that fateful evening, this mysterious illness has redefined our family. As a military family who has been battling invisible wounds for over a decade, we find ourselves struggling to cope with this new obscure and mysterious illness that has disabled my son. It is painful watching my once energetic son no longer stand up, walk across the room, or even sit up at his desk to complete his schoolwork. In the beginning the doctors insisted it was anxiety, but his father and I were not convinced. We knew that something was physically wrong with our son. After much frustration, I was able to connect Shane to a doctor who diagnosed him with POTS. But even with a diagnosis’s life is/was not normal. This difficult journey was just beginning, and even months later Shane is still unable to regain his life.
Thankfully, through research efforts and online POTS community resources Shane found assistance through The Cleveland Clinic. However, the journey is long from over. We are moving into our second month of treatment efforts since first meeting with his medical team. Finding the right combination of treatment is a slow process. But at least now we have hope! Hope is something that we did not have in the beginning. There are a lot of questions that will never be answered. For Shane, the biggest question is “Why Me?”
We may never have answer to this question. But what we can do is help others through the sharing of his story. As a family already fighting the impacts of invisible wounds, we have used our voice to make a difference in the lives of those who may be enduring a similar battle. So, if anything, we can once again help those who like Shane may feel alone. Together, we can support and encourage others in hopes to provide the strength necessary to once again Stand for POTS. To help raise awareness of POTS, we have built the @TeamShanePOTS Community on Facebook.
Just over two years ago, Shane accompanied his father and I to New York City. While in the city, we were able to visit One World Trade Center Building and The 9/11 Memorial Museum. Our family has an emotional connection to this building and to the entire area. Shane often speaks about the building’s strength and the technology used to ensure its massive stature. As a family, like we have done for the past 15 years for his father, we have to be his foundation and strength during this taxing time. Most importantly, we continue to hold onto the dream that like One World Trade, Shane will once again Stand Tall and be restored.
References
Cleveland Clinic. (n.d.). Postural Orthostatic Tachycardia Syndrome (POTS). Retrieved from Cleveland Clinic : https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots