The lot of us mortals: doctors and meanings in life

"How strange is the lot of us mortals! Each of us is here for a brief sojourn; for what purpose he knows not, though he sometimes thinks he senses it. But without deeper reflection one knows from daily life that one exists for other people — first of all for those upon whose smiles and well-being our own happiness is wholly dependent, and then for the many, unknown to us, to whose destinies we are bound by the ties of sympathy. A hundred times every day I remind myself that my inner and outer life are based on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving.”  --Albert Einstein

What is my purpose, then? I struggled with this question throughout my teens and twenties. After undertaking internships in high school and college, I was sure that working with children with special needs was not part of my meaning in life. I had loved being a camp counselor but when it came to children with severe autism and other disabilities, I was the wrong person for the job. From once thinking I'd be a primatologist (apes!) to then planning a career in child psychology, I instead pursued...business.

Business was sooooo not for me. From an early age, I had written poetry and stories. In my twenties, I overcame my shyness to discover I could sing, which led to community theater, community opera and eventually the courage to return to school to become a teacher.

When I was blessed with the joy of motherhood, I never suspected that eventually, my primary job would be to keep one of my children alive while keeping the other child untainted by the first child's Jeckyl and Hyde symptoms. Life wasn't supposed to be this way. Life wasn't perfect to begin with, but this outdid it all.

For a while, we had it all, finally. A wonderful teaching position. A happy marriage. The white picket fence--literally. The son. The daughter. The dog. But then my almost 9 year old son got sick with PANDAS. And was misdiagnosed for a very long time.

Yesterday, I met about a dozen parents at a PANDAS/PANS support group meeting. It was a meeting full of relief (that we're not alone,) understanding and a celebration of the strengths we all have had to dig up to deal with this disease. My heart melted for everyone and I found camaraderie with all. Many of us have seen the same doctors--after all, there aren't many doctors who will venture out of the security of the AMA and risk being sued to treat kids with PANDAS. The destinies of our children "are bound by the ties of sympathy" shown by a handful of courageous doctors.

Scary thought for today and everyday: the destiny of my child remains unknown. (As does the destiny of my life savings, after all this is done, if ever it is done.)

Before my family met our son's PANDAS and Lyme specialists, we had consulted with at least one dozen doctors who did not have the knowledge to help us. Worse than the doctors who neither knew about nor believed in PANDAS were the ones who had heard of it and thought they knew all the answers. Like the neurologist who mentioned PANDAS to us, yet ran no tests, and after prescribing ten days of a low-dose antibiotic, said, "Tourette's or Bipolar."

Interesting that those of us in the support group--people from NY, NJ, CT--have all been to many of the same doctors, no matter the distance. Why? Because few doctors are willing to "go the extra mile" and diagnose a disease in which many don't believe. Because few doctors are willing to prescribe antibiotics for more than ten days at a time. Becasue many doctors are afraid to even speak the word, "Lyme" when they see that other doctors are attacked for treating it.

There are doctors out there who treat PANDAS and/or Lyme Disease. There are doctors who work from early in the morning till late at night, willing to take on new patients who have great need. There are doctors who are willing to take a day from work when they have a 7-month waiting list for new PANDAS patiends to go to a state capital, as one did last week in Connecticut, to testify that we need the government to recognize this disease so that our children can be saved. There are doctors who are not afraid or too egotistic to consult with colleagues to find the best course of action for a disease that differs by child. There are doctors who email, text or call when the patient is in dire need of help.

There is one doctor who, this very week, goes to trial, although hundreds of young patients desperately need him. I don't mention names because any doctor who circumvents or fights the system is liable to being investigated by the federal government. It is well-known that many of our Lyme Literate doctors (LLMDs) are investigated because the CDC doesn't yet recognize chronic Lyme Disease. And our PANDAS doctors are also at risk.

As Einstein says, "my inner and outer life are based on the labors of other men, living and dead." My son's life is based on the labors of a small group of men and women who have the tenacity and bravery to stand up to a system that denies our children proper medical care by not recognizing their "rare" diseases. This is a system that would take my son, with his crazy PANDAS and Lyme symptoms, and lock him up in a psychiatric hospital, much as they did to Elizabeth Wray.

The doctors who do treat our children have found their meaning in life. They will be long remembered. They are true medical professionals, doing all they can to save lives. And for that we are forever grateful.

I have a new meaning in life, one that I never wanted. It took us several years before we determined that our son has PANDAS and Lyme. I wouldn't wish this on anyone. If my words reach one person and save him or her the grief of misdiagnoses, then I have made a positive change to this world. Unfortunately, try as I might, I cannot, alone, save my own baby.

I need doctors. 

Henry David Thoreau said, “If a man loses pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured, or far away.” 

The doctors and scientists who will save our children are those who are creating their own music or listening to a drummer not found in the AMA, the CDC or the pharmaceutical industry. The doctors who will save our children do so at their own risk. But it is our children who are at risk if we lose these doctors. 

Note: At our recent support group meeting, we were honored to include Pamela Weintraub, an Executive Editor at Discover Magazine and author of Cure Unknown, who is researching PANDAS. Please check out her articles--one in Psychology Today grapples with the fact that moms of children with chronic diseases are sometimes being accused of Munchausen by proxy. It isn't just our doctors who need protection. In addition to being a fantastic writer who has written about her experience with Lyme Disease and the medical community, as well as other pertinant articles, Pam Weintraub turned out to be an unassuming, lovely person whom we would all like to befriend. 

Comments

[Leslie]

Very well-said! Thank you!