It has been nearly a year and a half since my son’s recovery from several tick-borne illnesses. We still encounter people who don’t believe he was ever ill. As stunning and disheartening as that may be, we have learned to put our energy into moving forward, otherwise we will be stuck on a frustrating and debilitating path of other people’s apathy and ignorance.
As a parent of a seriously ill child, I had to stay focused in the present at all times. If I let my thoughts wander in the direction of either the past or the future, it would be emotionally consuming, and I would be of no use to my son. Now that he is healthy and the worst is behind us, I do take time to think about what signs were present that I may have missed long before his illness became a crisis.
For one, we never really found out how long the tick-borne illnesses were in his body. We know that some had run their course, while others were very much present, but in the absence of a rash, classic symptoms, or even an actual tick, we were left with an ambiguous ‘late stage’ designation.
Since we know they were not new infections, why, then did they take so long to surface the way they did? Was there a trigger of some sort that brought everything to the surface in a perfect-storm-type situation. I can see very clearly that there were many ambiguous, unexplained, short-lived illnesses that my son experienced since he was a toddler. He often spiked fevers for no apparent reason, he would have swollen glands with no other symptoms, he had recurring illnesses such as croup long after the expected age for such illnesses. And yet, it wasn’t until he was in his early teens that the most dramatic symptoms took hold of him.
As I have written in the past, my son’s symptoms were nothing typical for Lyme related illnesses except for the fatigue and fevers. Most of his symptoms were cognitive and emotional which led others to believe he was avoidant, defiant, suffering from mental illness, or just plain lying. While I knew none of these were true, it was an uphill battle for years to prove otherwise. Why did the diseases affect him this way? Why do they target different areas of the body in such a way that each case may be unique to the one before it?
I can’t answer that except to say the diseases seemed to target the areas of the body that were most susceptible to them. He always had a moderate level of anxiety as a child, it was just magnified to a level that was extraordinary. He was always a relatively shy child who preferred to be home rather than out around many strangers. During his illness, he became agoraphobic. Cognitively, he had an extremely fast processing ability that often conflicted with his difficulty with expressive language. The disease impaired his ability to think, speak, and express himself in any way. He could only look out from inside and feel ‘stuck’ – a terrifying feeling in which he could not tell us what was happening inside his mind and body.
I truly believe, as I look back over the progression of the diseases, that certain areas of my son’s body were more vulnerable to the infection, and thus were almost exploited in a way. Other areas lead to this conclusion, as well. For example, my son had very strange EKGs as a child, during the illnesses, we were sent to several cardiologists, because his EKGs were alarming. He often had low level fevers that accompanied illnesses when he was little, during the Lyme, his fever regularly hovered between 101-104 degrees. Everything was exacerbated and amplified. Every childhood illness looked like it had been magnified into an unnatural state while recurring in his teenage body.
I can only think that either he had these tick-borne diseases for his entire life, and a new infection or a traumatic trigger sparked the dormant diseases to come to life at once; or, he had lesser outbreaks of the diseases in the recent past until a significant stress on his body caused his immune system to be unable to suppress the full extent of the illness. I may never know, but my son began a downward spiral when he was finishing his final year at the only school he ever went to and was about to go to a new town, new school, new environment. This confused the situation greatly, because it was perfectly reasonable that he would experience anxiety and depression in such circumstances. The problem was, it was completely out of proportion and out of character the way it manifested in his body and mind. I was unable to stop the flow of accusations, suspicions, and judgment we encountered. My ignorance about the illnesses did not help me to dissuade others’ ignorance about my son. We still fight that ignorance.
Lately, I hear more and more stories about children showing symptoms that resemble my son’s. Although I am happy to see the children being treated and the symptoms recognized more readily, I am saddened to think that this is the only way to prove my son was truly suffering from an illness. I fear for these children, and I worry that the strain placed on their families will be irreparable. No one in the medical field has ever asked to learn more about my son’s case. None of his non-Lyme doctors have fully acknowledged that his illness was tick-borne related diseases. Everyone has breathed a sigh of relief, because they no longer have to worry about court hearings, inquisitions, and reputations being tarnished for treating a child with such symptoms from a tick-borne disease.
I know the strength of my son. I know his courage and his grace. I admire and respect him for not only what he endured, but how he handled himself throughout the ordeal. I cannot express the relief I feel that he is healthy. And yet, a sadness remains for those suffering without support, without the humanity and compassion that they deserve, without resources they need to get better. I hear daily that this will be the worst Lyme season to date. I wonder how many more children have to suffer from this atrocious disease before someone with the power to change the outcome actually takes a stand. The disease may be invisible, but those who suffer from it should never be.