Lyme Disease: Stories From the Front Lines of An Epidemic – Author’s Note

Dear friends,

I learned a hard lesson today.

That lesson is that I cannot be the person I wanted to be.

20 plus years ago I was bitten by a tick. I came down with Rocky Mountain Spotted Fever and I spent some time in a hospital.

For the next 17 years I was subject to all sorts of odd illnesses and ailments, and I suffered periods of apparent mental illness as well.

I’ve been diagnosed with all sorts of things and been passed from doctor to doctor to doctor. I already had a solid and confirmed diagnosis of Aspergers syndrome so maybe all this other weird stuff was just connected?

And I never got quite sick enough that people took me seriously.

I never became a cripple, or became malformed, or lost my hearing, or my sight. I never developed a full-blown heart problem.

I forgot things – a lot.

I lost words – a lot.

I got lost in familiar places – a lot.

I felt like I always had the flu.

I was always tired. Stimulants made me sicker. So I created a lovely sleepless/exhausted/sleepless cycle that seriously did not help matters.

Doctors made me stop eating gluten and sugar and told me I was hypoglycemic. That absolutely did not help and it certainly did not help that all my blood sugar tests kept coming back as “normal”.

And the neurological issues were getting worse. Sometimes I got confused. About where I was or why. Or who other people were. People thought I was on drugs or drinking, although I do neither one.

I suffered anxiety attacks. I ditched people. I made up excuses for not going places.

I made people angry. (They were correct in feeling so.)

I lost friends.

I saw doctors. I saw therapists. I was told again and again. “It’s all stress”, “It’s all in your head”. “Have you tried “x” therapy.”

I decided they were right, I was crazy. Even so, I worked anyway. I muscled through my days. I played at normal – not realizing that being sick on top of being autistic made this a laughable venture at best. I lost job after job. I forgot things or I messed things up. I got into a few fights.

And then I found out two things.

I was sick, not crazy…and it did not matter.

I had Lyme Disease…and the American Medical Association and the CDC told me that I was still just crazy.

Despite positive tests.

Because Lyme is not covered by insurance, not recognized, diagnosed, or treated in America.

I was sick and I was going to get sicker and nobody in a position to help me gave a shit. Lyme was a zebra in a world of horses and most of the horses were at least profitable. Lyme was difficult to treat, expensive to treat, and took years or decades to treat if it could be treated at all.

So recently, I went a little crazier. It was easier than the constant anger and fear,easier than fighting an uphill battle on a battlefield the enemy refuses to even acknowledge. Easier than educating every single person I met every single day of my life.

I had, of course, noticed that I was getting sicker, getting weaker, forgetting more. Doing things that were definitely weird. Becoming more impulsive. Getting angry more often.

How could I not? I went from being a scholar and an athlete to someone who got lost on campus and forgot his next class after several weeks of a daily routine! I had to quit sword fighting for the SCA because I was losing almost every match and injuries were slower and slower to heal. And I was losing my temper – which is a bad thing in ANY martial art much less one involving swords. I could not serve as a trail guide or do SAR work anymore because I could not find trail heads, much less trails, and I was forgetting basic stuff like victim assessment order.

And I ignored it. I stuck with things I should never have been doing at all until I was fired and then I blamed everyone but myself.

I knew that Lyme was a debilitating and worsening chronic disorder.

I had a vivid reminder of that three years ago when I finally developed systemic idiopathic anaphylaxis and became allergic to almost all forms of carbon. I lost 48 pounds and could only ingest water. I was told that I was going to die.

Fortunately, I did not die but I still can only eat 20 foods and they have to be organic and non-processed and NOT one of them is a normal food either. No pizza, no burgers, no cheese, no sandwiches, no bread.

I had to learn how to cook. From scratch, no mixes allowed.

Then there were the chemical allergies.

I had to throw away all my plastics and buy glass. I had to buy all cotton or linen clothes. I had to learn to wash my dishes and clothes in just one soap. How to brush my teeth with coconut oil. How to use coconut oil as a deodorant.

I had to come to terms with the fact that no restaurant, movie theater, coffee house or small grocery store would ever be safe for me to enter.

I had to learn to wear epipens and a med alert bracelet.

I lost even more friends. And some family. And several doctors.

I had no money for treatment. No insurance. Doctors became even harder to find. And those that did treat Lyme could not get insurance and so had to be paid out of pocket for their services.

My relationship was a flaming wreck, not yet sunken, but definitely foundering.

I was shit broke.

And I still denied my illness.

I decided that I was a man and that with enough therapy, enough determination, and enough sheer will power I would keep coping and I would maintain my manhood.

I would get and keep a job (despite my history).

I would provide for my family (despite not being able to provide for myself).

I would have a social life (despite my abject failure at this all my life).

I donated to charities despite not being able to actually afford it. I took a job and failed at it after a few weeks.

I hurt people’s feelings by taking on work I could not do or hiring people when I could not pay them. And I created elaborate fictitious structures and excuses to get my way out of these situations without loss of face – and was crazy enough to think I was succeeding.

I kept scheduling and inevitably canceling dinner dates, and then being hurt when people quit asking.

I got and canceled gym memberships. I always claimed I was too busy to go rather than admit I was too weak to get to the car.

And I’d look in a mirror and see a normal looking man, not yet 40, who looked absolutely healthy. Healthier than most in that I was trim and lightly muscled despite the illness. LYME IS INVISIBLE.

People would look at me and be furious about the missed appointments or the broken promises and they’d see a healthy but UNTRUSTWORTHY man.

And I was untrustworthy. Not because I was dishonest or because I was avoiding people or because I was selfish. Or because I preferred my own company.

But because I would wake up with joint pain everywhere. Or I’d not sleep for three whole days. Or I’d vomit up everything I ate. Or I’d have diarrhea and be terrified of leaving the bathroom. Or I’d know that I could not actually enter that bar and grill but I’d preferred to lie and say I was fine with it than risk losing another friend because I’d either have to admit I was weak and vulnerable or risk it and maybe end up in an ER after an epipen shot – and there is NO faster way to scare off a friend than to show them your mortality. It reminds them of their own.

Healthy people tend to shun the ill.

Or worse, to assume a moral failing.

And that includes the patients.

I saw Lyme as a personal failing. I saw it as a degeneracy of the moral fabric as well as the physical one. I told myself to just man up, grow a pair, and be the person I wanted to be. I read self-help books, psychology books, and went to therapy and group. I talked to my mentors and read about successful people and honorable ones. I told myself I would be that person – a good man, a strong man, an adult man.

And then today I got a wake up call.

A job I’d forgotten about, a job that was already a second chance from a pissed friend. And I’d forgotten about it entirely. Almost a month had passed since I’d spoken to him. A full month. And this after he had gone out of his way to do me a favor I did not deserve.

He was angry. (And had every right to be.) I was confused. The last week was a blur, the last month barely tangible.

And what really shocked me when I looked at the date.

“My God,” I thought. “Where did the time go? What the hell have I been doing?”

And the second shock came to me when I realized, actually fully realized, that what I had been doing was nothing. I could not remember my days, or weeks, or any real activity. I had not pursued a single thing.

I’d started and dropped several things but even those were only hazily remembered.

Basically, I’d been getting up and struggling just to remain functional for long enough that I could go back to bed before at a “reasonable” time. Just moving meaninglessly through eight hours or so so that I could go back to bed.

So chronic illness is not a moral failing but it apparently can cause one – I try very very hard to be honest and to be an honorable person and a gentleman, but since the Lyme has gotten worse, I’ve told more lies in a day than in whole years before that. And I’d also been lying – daily – to myself.

“I’m fine.” and “ No problem” were my mantras.

I’ve been prideful. I’ve refused to admit weakness. I wrapped myself up in bad fiction, Facebook, and television shows. I was completely in denial.

But screw me, there were all the rest of the people I’d hurt. I found an old chore list and read it with a sense of shock. I remembered next to nothing on the list. I had done maybe two of the thirty things and then largely by accident.

And I had broken my own first rule.

First, do no harm.

Well, today that ends.

I thought coming out was hard, but this is harder.

Dear friends,

I am seriously ill. I am frequently weak and always tired. I may or may not die. I am mortal. We all die eventually and I will probably die before you do.

I am lonely. I am frequently in need of things that I cannot obtain.

My word is worthless. I cannot make or keep any promises. I will no longer be doing the first. No more promises.

I cannot come to your party, your bar mitzvah, or edit your book. I cannot keep my job much longer. I cannot drive 90 miles to come see you. Or even 9.

I cannot let you come see me unless you intend to obey all the allergy protocols of my “clean room” home. I can’t talk to you on the phone because my hearing is bad.

I am probably not ever going to get better. Ever.

And I will now have to work to regain any level of trust I may ever have had with any number of people. And that will be very hard indeed. It might not even be doable.

And that is deeply disturbing to me as I’ve tried to live righteously.

What can I do?

I am still alive. I can write a blog now and then about life, or make a video. I can post jokes and pictures.

I can pray for you. And I can like your Facebook posts. I can wish you well. I can pull for you during the hard job interview. I can read your emails or letters. I can watch my Godson grow up and yours. I can laugh with you and share your love of life. I can be proud of you. I can hope you live long and healthy lives. I can read your published works, watch your dance videos, see you lose that nagging five pounds, or do that 100 pull-ups. I can listen to the music you play. I can celebrate the lives and potential of all of you.

And on the rare occasions when I can see you somehow, I can be with you wholly, I can share with you, I can laugh at your jokes.

I can hope that you will find smooth sailing and remember not to give up. To always shout your defiance into the face of the hurricanes of life, even if all you can do is shout. Even if you think you are going to drown.

And I can love, and care, and hope, and dream with you.

I can let you remind me that I am not yet dead and that life is to be fought for, to be won and savored.

I can be your friend.

That is what I can do.

If these dark things are too much for you or the light things not enough, then there is one other thing I can do.

I can say “goodbye”…and as you walk away from me I can and will wish you a good journey. And hope you NEVER come to feel as I feel.

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2 thoughts on “Lyme Disease: Stories From the Front Lines of An Epidemic – Author’s Note

    1. Quite welcome. If you have a story you’d like to share, please get in touch and I’ll make the needful arrangements. I very much want to get the word out on this illness. Thanks for the comment, and take care.

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