“There’s a divinity that shapes our ends, rough-hew them how we will.”
– William Shakespeare
Author Yevgeny Yevtushenko observed, “Life is a rainbow which also includes black.”
I would say the sooner we all realize that every day is not sunny, that life is filled with hurts and sorrows and challenges, the stronger our personal constitution will become.
I have learned. My son has learned it. Watching him learn it has been an agonizing experience much of the time, but his strength of character through it all has been absolutely astounding. I’ve learned a lot through this son of mine.
Bitten by a tick during an innocent day of play with a buddy in the summer of 1998, this once-healthy boy began to have a cascade of physical problems. Cort suffered everything from chronic sore throats to knee, wrist and ankle pain to abdominal and gastrointestinal pain and problems.
Headaches and extreme light sensitivity followed. But, because he never developed a bulls-eye rash from that tick bite, Lyme Disease was ruled out.
Symptoms frightening. For too many years, we were passed from specialist to specialist. His symptoms would worsen, then change. He began to feel as though he were somehow outside of his own body, almost a hallucinatory state of fogginess that was indescribable and frightening for an adolescent who had been a clear-thinking, hard-working young man.
Certainty and uncertainty. Cort was put through incredibly difficult medical procedures, including scopes and biopsies and blood tests too numerous to count. We were told, in spite of his worsening overall health, that everything was fine.
Or perhaps he had rheumatoid arthritis, or perhaps he had the beginnings of Crohn’s disease, or perhaps he needed simply to exercise more and worry less.
‘Great imitator.’ We have since learned that Lyme Disease is called “the great imitator” and many people are mis-diagnosed with such things as MS, ALS or rheumatoid arthritis because of it.
Less than 50 percent of those infected ever develop a bulls-eye rash. But, I did not know then what I know now, and we kept searching for answers.
Worsening and fear. It was in December of 2001 that it became apparent that the neurological symptoms were worsening, as Cort didn’t even know his own family at times. His pain, weakness, confusion, and symptoms of Bell’s Palsy or possibly even a stroke meant we simply had to seek a definitive diagnosis and some type of treatment, or we feared we might lose our son.
Finally, improvement. Now, all these years later, we are finally seeing some improvement. It has been a long, hard journey filled with treatment lines and daily IV’s for a time, followed by lots more testing, a tremendous amount of on-going, expensive medication, (much of which has not been covered by health insurance), phlebotomies for hemachromatosis, injections, daily oxygen treatment and more.
At the center of this improvement is a doctor who studies tick-borne diseases long and hard enough to see the big picture, to realize how much mis-diagnosis there is, and to test for every possible body system’s damage done by one tiny parasite.
But at the core is a kid who is determined to get his life back. When he asked the other day if I could help him get some live bait so he could go fishing, I nearly fell over.
It had been years since he’d felt well enough to even care about going fishing, let alone well enough to actually do it! The months of June and July are designated Lyme Disease awareness months, as this is the time of year that ticks are at their busiest.
Able to drive. I urge you to protect yourself and your family, as no one deserves this dreadful, difficult disease. Cort will be 18 in October, and he just recently landed his driver’s license.
He is taking what has been dealt to him and trying to make sense of it. His on-going fatigue and brain fog still plague him, and the muscle and joint pain is never too far away.
Lost time. But he is determined, and determination and spunk can take a fellow places in this world … especially a fellow who feels he has to make up for lost time. Lots of lost time.
But it is a fragile balance, with the possibility of a relapse always a nagging shadow, even on the good days. And there are still far too many bad days to say that he has worked through this completely. I’ll keep you posted …
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