The Beginning of Jayde's Journey-Part Two

October 26, 2016

Homecoming, coupled with the change in weather, sent Jayde's POTS into a tailspin. No matter how sick she has felt, she has attempted to work on her writing and schoolwork almost every day. She spent the good part of her birthday violently ill, hugging a trash can for seven hours, with her resting heart rate hovering at 160 BPM. Watching all this unfold and the resistance from some of her teachers to recognize her ADA 504 plan prompted the following thoughts this morning. 

Humans are creatures of habit. Most individuals do not welcome change with open arms. It is not a character flaw. It is simply the way we were created. Reflecting on the past several years, I see life has become a proverbial rollercoaster, with peaks and valleys and unexpected twists and turns. We have mastered the art of riding the peaks and work hard to find the silver linings when we are in the valleys. However, sometimes, the unexpected twists and turns can be challenging to navigate, and I wonder where the sign states, "Buckle up, bumpy ride ahead, please keep all hands and objects inside the moving car!"  

Each of us experiences countless phases in our lifetime. Some phases we are prepared for, others come at us blindly with no warning. When Jayde was little, I often told Chris, "Don't get too comfortable in this phase because as soon as we do, she is sure to change it up on us." When our children are infants and toddlers, we become accustomed to the erratic phases/changes in mood, personality, ability, and even health. Yet as they age and the period between these phases lengthens, we begin to get comfortable, forgetting to brace for the inevitable impact.  

Now, take all of that and put it into everyday life, where several times a day, there are erratic changes in your health and well-being. With some of these changes, we have achieved expert status. Others are brand new and come with no instruction manual, leaving you with no choice but to blindly navigate the unknown. Imagine each day there is no rhyme or reason for how you feel or how your body will function. Now, imagine no one can see any of these changes occurring because they are invisible. As we grow and our bodies change and age, the outward signs are visible for all to witness, yet with POTS, its unique trademark is its invisibility. You cannot see when someone is dizzy, each time they stand up, when their chest is in pain because their heart is rapidly palpitating, causing it to feel like it will jump out of their body, when their joints are inflamed and in pain, making it difficult to walk or even move: when a deep fog sets into their healthy mind, and they cannot think or concentrate: when they have a migraine and it feels like their head will explode from the pain: when they are nauseous, and the vomiting is eminent: when they are so tired they feel like it has been a week since they had a wink of sleep: or when going outside is not possible because of heat intolerance, yet when the weather finally changes it sends their illness into a tailspin. No, you cannot see any of that, but a POTS patient experiences all of that and so much more on any given day. POTS patients, along with all other individuals with invisible illnesses, do not want to need preferential treatment because of their disability; what they desire is to be normal like each of their peers. Unfortunately, many times, this is an unobtainable desire. Even on the days when Jayde is bedbound, there is a determination in her eyes to be more than a sick teenager. POTS patients need empathy, not sympathy; encouragement, not condemnation; patience, not condescension; understanding, not judgment. They have goals and dreams like the rest of us; only they reach a little higher, regardless of what others see and who or what stands in their way.