The Love Bite Diary started as notes to friends. It was therapeutic, as a writer and as a human, to simply express a longheld secret. I was struggling in and out of physical functioning and brain firing, but my friends made it feel safe to write, and encouraged me to do so. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts. I hope to add the stories of some of the incredible people I am meeting, offer practical advice as I learn and get more on my feet, and eventually interview experts in the treatment of Lyme Disease. And recipes - in time, there will be recipes. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.
~ Thank you, Elisabeth
If you would like to read the entire story, from the very beginning, start here.
May 17, 2016
Birthday Wish
Today, May 17, is my birthday. Every Christmas, for a very, very long time, I would think, “By my next birthday, I’m going to get better.” When May 17 rears its gorgeous little head, I say, “By Christmas, I’m going to figure this illness out. Hey, I’ll be able to work on that Christmas album I plan every year! I’ll sing again, and write those songs with Prince! I’ll travel and see friends all over the world, and spend more time with nieces and nephews! I’ll run every morning and play tennis again, and get back to yoga -- and twist my body into a pretzel ON PURPOSE!! I’ll launch one or two of those internet companies that I’ve done business plans for - Tender Palate, included. Maybe I’ll be able to write all four books that I have outlined! In fact, I’ll be the only one who brings Barbara Walters out of retirement when those books become best sellers! I’ll fall in love! It’s going to be a great year!”
I also promise myself that I’ll figure out how to make illness funny. Then write about it. Because humor helps us understand ourselves, an essential ingredient in understanding each other; and humor, like kindness, helps us heal. Besides, illness without humor or curiosity is boring, and without laughter it is easier to be just angry and sad. I have a show idea running around in my head, along with a marriage proposal designed especially for Louis C.K. If I could get to him, I am sure he would accept. But I fail. Every stinking year, I fail, and every year, I end up in the same cycle of survival and then have to forgive myself for it. Every day, in fact.
If I do forgive myself, and sometimes that is the only thing I can do that day, then I am surprised at where I find joy. It’s an odd surprise, really, how a glimmer of joy can spark the creative exercise of reinvention - if I can get through those times when I can’t think or move, or lift my head, and when things seem hopeless, I’ll figure this out. It is a sweet shock how life, when you are forced to make it so much smaller than was planned or wanted, can get bigger on the inside. If you are lovingly and brutally honest with yourself, if you feel the deepest, and most unpopular feels. . .the grief, the rage, the panic … and get help to process what we are too “nice” to feel… you can allow that reinvention on a microcosmic, spiritual level, too. That’s horribly difficult, but very cool.
A few months ago, however, I realized that this birthday is a crossroads for me. It has become clear that no amount of patience, hard work, faith, or reinvention would work. That I wasn’t bouncing back from stress and its subsequent relapse like I had in the past, even with the intense treatment that used to get me “functioning.” The symptoms came rushing back with shocking speed as soon as I stopped those treatments. I saw myself in my mind standing at that ridiculous crossroads, where one sign read, “Keep Straight: take this road toward a possibly slow, possibly fast, but lonely, and stress-filled demise” while the other read, “Radical Change Ahead: the right knowledge and great healing is this way, and you may even get your whole life back! But if you want to live, you need to pay for it.’
With the help of my friend, Sue, I launched a GoFundMe campaign - and coming to that decision was a humiliating exercise. But it has reignited my fiery internal Mars as I grab this cagey beast by its face, and stare down every fear that once had me curled into a sobbing ball of snot on the floor. Oddly, this campaign has also been an incredibly healing experience. People with complex illnesses like Lyme are on the outside of every single system of support in our country. Insurance fails you, there is little to no funded research, so there are some in the medical community that don’t understand how dangerous mistreatment can be. With the RIGHT treatment, right away, no one has to suffer like this. But no research money also means that it is up to a few, rare, curious, smart and caring physicians who have the background and experience to help those patients whose health has spiraled out of control. Usually these doctors have a family member with this disease, or a steady stream of patients with a painfully familiar pattern. These docs have the humility to explore when their knowledge reaches the end of its tether, not blame the patient. They have the tenacity to follow through until the problem is solved or they have a plan. They learn from each other. The amount of effort that it has taken to try to fit into those established systems, as a patient or a doctor, has been exhausting and has wasted energy, time and money. It has given me hope, however, to find physicians out there who have actually cured and helped people with chronic and complex Lyme.
Your notes, and financial and spiritual gifts have given me hope that I might get to one of these experts. You have given me courage when I was starting to seriously lack it. I could not find my courage, nor my sense of humor, and did not know where to turn. I have been terrified. You have given me practical, feet on the ground help, which I have needed, even more than I realized. Help from actual people makes this illness and its consequences even more real, though, because now other people are reflecting back what they see. I can’t pretend that I’m normal, anymore. When someone truly sees you struggling, and acknowledges it, it is sobering. Denial and its sneaky cohorts wash away and you can more clearly see where the beast has left you raw and helpless. But you can also more clearly see what to do about it, too.
When all of the strength you have that day – and the next, and also the next - is to write a long, humbling dissertation to the Internet asking for help, you know you are in a hard, cruel place. So, on this birthday, which kicks the full-figured arse of all other birthdays, I am facing another fear. I am directly asking for a birthday present from friends and total strangers, if you can. And please forward this to anyone and everyone. Tell them to read the GoFundMe story that Sue so graciously wrote and so kindly bossed me into publishing. If people are moved in ANY way, tell them they could give someone the best birthday gift imaginable – health. Those of you who know me even a little, understand that I am not at all shy, but am very private. You may be used to protecting that privacy, whether you know it or not. I have so appreciated that. Well, the secret is out, the jig is up, the cat’s out of the bag, the boys are in the yard, and the gate is open … so share your heart out. I hope, one day I can repay you all in some way. It will be impossible, I realize, but I will put that on the list with the books and the album and the kids, and Barbara Walters. Prince, you will have to wait. We'll go crazy in The Afterlife one day. Right now, I would be so grateful just to be able to do the dishes, be around people without my lungs filling up and throat closing because someone wore perfume, walk down stairs without wondering if my muscles will work; and be able breathe and poop and sleep and move through life without considering whether or not the person drawing my chalk outline will make me look fat … and also, I just want to be able to be there for those I love, … and just get back to work.
With my deepest and most heartfelt thanks,
Beth