TOUCHED BY LYME: Things gained, things lost, things learned from Lyme disease
Guest blogger Jon Katz, an American author and photographer, is known for book about dogs, animals and rural life, including “The Dogs of Bedlam Farm” and “Running to the Mountain.” Here, he writes about his personal experience with Lyme disease.
Lyme Disease reminds me a bit of getting divorced, half the people you know have been through it, and everybody talks about it, but until you experience it, you just have no clue what it’s like. Lyme Disease is not the flu or a cold, it is not one of those things that disappears in two days after you pick up your pills at the pharmacy. It is one of nature’s potent recent creations, sent to us in the form of those wicked and durable little fairies, the tick. You can check yourself all you want, but in most cases, nobody sees a thing, has a bulls-eye rash or feels anything much for awhile. I gather the medical community is still figuring Lyme out and is sometimes slow to diagnose it, insurance companies are reluctant to recognize it and pay much for it’s often expensive treatments. We live in the corporate nation, it is of our own creation, we are its children.
I’ve spotted ticks the size of a pinpoint, and missed some happily exploring the back of my head. Lyme Disease enters the body, seizes it, shakes it up and down like dog with a bone, and sometimes just keeps on chewing. It feels like I’m in control of my body again.
I love irony and I keep thinking of how many hours and miles I’ve spent wandering woods and meadows, the pastures and fields, all the new happy home and hunting ground of the tick, which has come into it own, the tick is a lover of climate warming and it never dies now and many of the things that ate it are gone. I realized this week as my potent antibiotics kick in that this isn’t a new thing, but I have been feeling it for awhile, it has been working on me some weeks at least maybe more. In some ways, I feel better and stronger than before. At the end of the first week my fever is still popping up and down, mostly down, I am still dealing with some fatigue and other things, my week long headache is beginning to recede, my teeth-rattling shivering is no longer rocking the bed and my head is buzzing things to write about and photos to take. I am definitely going in the right direction. No more high fevers, no more delirious wanderings of the mind. I had a couple of Stephen King plots going on up there, wish I could have remembered them. This disease asks patience and faith.
I am happy that I wrote comfortably and easily all but one day last week, took some nice photos and am feeling clearer and stronger. I understand that Lyme does not go away, but visits every now and then and my joints will speak to me every now and then about it. I am grateful for all of the good wishes, they were encouraging and helpful to me, but I am recovering well so they are no longer necessary. I have all of the information I need for now, I am not in need of books or links or additional advice, support groups or Internet sites. For me, the Internet is not a reliable source of health information. I like talking to people about that when necessary and I like to look them in the eye and I want them to look at me and touch me before they tell me what to do.
Lyme Disease has already brought me five gifts: a powerful manifestation of my wife’s great heart and love; an interesting story to tell; a conventional medical doctor who respects holistic treatment; a keener sense of empathy; and a decision to bring Red to therapy. It has taken away a certain sense of myself, a feeling of total safety in my woods, a certain sense of well being. Perhaps all good things for a writer. Something gained, something lost. Life happens every day.
This new part of my immune system is a part of my life now, it isn’t going anywhere, and I’m surprised by it, but am used to it already. Welcome to me, LD, we’ll see how much you really like staying in there. I gave up struggle and lament stories some years ago, and I don’t miss them. I am sadly aware that many people suffer greatly and for long periods from this disease and struggle to pay for long and expensive treatments and I will try and be helpful, and they will do what they need to do and what helps them.
There is also the question of aging and health and I am quite determined not to let health be the centerpiece of my life, my conversation or my planning. Sometimes there is no choice, sometimes there is. I have ordered some much praised organic odorless spray to put on my clothes when I go walking and herding. I have to stay out of the sun for awhile. I am feeling grateful, I am feeling stronger. I’ll revisit this when there is something worth relaying. I like this story, but I don’t find talking about my health of great interest over the long haul. It is my problem to deal with and I will do so. So time to move on. There are so many stories waiting for me in the world. Thanks for taking this walk with me.
Jon Katz blogs about writing, animals, and life, at Bedlam Farm.com. This entry originally ran there on June 14, 2013.
- June 26, 2013 at 4:56 pm
I have watched my dear son, a brilliant scholar and voracious reader- a creative film director and story teller – be run down to the point he could not get out of bed. EIGHT long and tedious and debilitating years it took to get an ACCURATE diagnosis…He was one of the RARE ones – his immune system was still fighting at year 8 – so when properly tested at Igenics Labs – he was positive for Lyme by ALL the CDC antiquted standards.. as well as Babeosis and most likely Erlichea. He can walk now – he has forgotten how swollen his feet were so he could not take a step… He can read sometimes -but not as often as he’d like. He is tried a LOT and needs his rest – this energetic, gym rat who loved to hike and swim and surf and camp. He cannot do much anymore – of what he loves to do… and the worst is getting his memory back. He had such a quick mind, which he relished and celebrated. If only we can FIND a way to allow the doctors who understand the findings – who are willing to look BEYOND the limited equipment which is LIMITING our testing – to do their job and get MORE HELP to solve this dilemna… what to give and when – how much ? If we could respect their efforts instead of reviling them – then we MIGHT be able to save someone else from this HORRIFIC and experience.. from losing part of your life….perhaps your future- to a disease – which is insidious and
- June 26, 2013 at 5:06 pm
I watched my beautiful, energetic,creative film maker son struggle for EIGHT years to get an accurate diagnosis for what felled him. Finally, a thoughtful surgeon took a guess – and after 8 years his immune system miraculously was still fighting the Lyme ! Positive by ALL CDC standards – and for Babeosis and Erlichea, too. Do you know what happens when a parasite has at you for 8 years ? We have watched his battle, and wondered how a country which purports to have some of the best medical minds in the world can be SOOO backward ? The testing equipment is NOT up to the disease ! It’s that simple. Stop punishing the patients and their doctors- who are simply trying to rid their beleaugured bodies of such insidious, clever spirochetes and infections. I pray you don’t ever taste the anguish of watching a loved one go up against this horrid disease;
let’s try for solutions – not limitatons !
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