The next number of posts, all titled Conversations on… come from email communications between a dear friend and me. With her permission, I am publishing excerpts from them because I feel they pertain to everything we’ve been discussing on the blog. Kate has been in the process of trying to figure out how to be a writer and still maintain her teaching job. She has very recently decided she must leave her job and fully embrace a “writing life.” At her request I’ve changed her name and am using initials for people she brings up. Those of you who have not read any of the earlier Conversation pieces, may want to go back to have a better understanding of Kate’s progress. You’ll find her story under the topic category, “Kate’s Story.” It’d be great if you all would join our conversation…
I have struggled day to day yet have had you in my mind always this past week but have been unable to write. It’s been one thing after another, but the short version is that the Lyme issues have gotten in the way of my daily functioning and that has caused me to become depressed and distressed. I did some research on the illness and that combined with my fear was a very bad mix, leading me to lose my focus and become panicked about the possibility of chronic illness or perhaps that I may have already had Lyme and this tick bite caused such a reaction because my immune system was already sensitized. None of this can be verified, of course, and now the only hope is to find a Lyme specialist (none are in our immediate region) and see if they can figure out whether or not they can make an assessment or do anything about whatever assessment is made. Through the week, after making all kinds of attempts to reach medical people as far away as New Jersey and also going back and forth on email with my acupuncturist, who is on vacation for the summer, I realized that whether or not I am in danger of long-term problems, I am allowing my fear to MAKE me sick. I got stuck trying to resolve how to pursue this mystifying and complex diagnosis and not fall victim to it at the same time. I haven’t quite figured that out.
In an effort to reclaim my sense of well-being and control over my condition, I printed out my acupuncturist’s words and am trying to live by them:
“I can’t stress enough that reading about illness and fear of any kind is a very dangerous combination. I would stay clear of ANY reading about this. Lyme and depression have been very much linked so what is important is that you stay as positive as you can. Don’t even entertain the thought of this lingering on and on. Don’t form a relationship to this Lyme diagnosis. I can’t stress this enough. Take the steering wheel and get out of these murky waters. I have seen many people become victim to their illnesses. So no more reading about this. Stay on your protocol – take your meds – deal with calming your brain and most of all rest right now. It’s going to get better.”
I read these words daily and am trying to take them to heart. It is very hard because putting it aside so as not to let it become more of a problem and pursuing whatever help I need to safeguard myself from further illness seem to conflict with each other—at least in my mind.
So that’s been the dominant issue, with little sleep, depression, anxiety, mood swings, and an inability to focus. All of these are symptoms of Lyme but are also independent symptoms that I live with anyway, though they have gotten much worse. So there’s the cycle of uncertainty and self-fulfillment of illness right there.
I have been doing my morning pages, despite everything, though I haven’t been able to do much else, and I have also made a daily effort to work on the novel planning and research, though this has been very difficult. I’m just in a state of discouragement right now, but I am sure it will pass.
I am so sorry that it’s been, and is, so difficult. But if you never listen to anything else your acupuncturist says to you, live these words he’s given you. They are pure and solid truth.
I hesitate to even write this because I don’t like “owning” these illnesses, but I have—I live with, 3 chronic illnesses. I used to refer to Crohns as “my Crohns,” which was very much forming a “relationship” with it. Now it is just Crohns. Every single one of these illnesses has brought great lessons and growth. But when I first received each diagnosis, I was devastated. All medical wisdom pointed to a life of ongoing struggle with each disease.
The first was Chronic Fatigue—back when it was still called Epstein Bar Virus. I was part of a research group documenting the progress of the disease. Too much to go into but I no longer have any symptoms, even though I was assured it would always be with me and would likely disable me.
Second was Blepharospasm/Apraxia. There is no cure and I was promised I would go functionally blind, ultimately, and it would travel to my throat and lungs. I was going blind for 7 years. It had advanced to my throat and lungs. But when I finally made my peace with it, when I finally stopped asking, “Why me?”, when I stopped feeling like a victim, when I acknowledged that my life was full and rich regardless, I regained my vision and all other symptoms fell away, almost overnight. This was due to a drug therapy that worked for me, but still, it was profound.
Then there was Crohns. The prognosis was not good. A client of mine had Crohns and when he heard about me he came right over to my office to “be a support.” He told me of the many agonizing surgeries he’d suffered, of how his life was a shadow of what it once was, how he was sick and tired all the time, how absolutely nothing helped or gave him any comfort—that I had a lifetime of suffering ahead of me. The doctors even suggested taking out my intestine and colon because of the near certainty of colon cancer and the surgeries that would be required on my intestine.
Although I am unwell sometimes, none of these illnesses turned out as everyone insisted they would. I shudder at the thought of what I would find on the internet if I went searching about these diseases.
Your acupuncturist is right: a positive attitude is a requirement and, take it from me, the practice of doing that when it’s the last thing you feel, is a tremendous gift. I promise. Fear is the killer and believing that “depression, anxiety, mood swings and an inability to focus” are symptoms of Lyme will make it so. I promise that too. If I had accepted the symptoms of my illnesses as a given, I’d have been lost long ago.
It is an interesting dance the universe is asking you to do. I believe you are being guided to truly let go (don’t try to manage this illness, don’t research it, perhaps be less proactive than your senses tell you you need to be—at least until your acupuncturist gets back—tests and tests and more tests make us feel sick and fearful) and, at the same time, you’re being told to understand you are not a victim. In fact you are powerful beyond measure. The universe wants you to find that power and by facing all of these challenges it hopes you will do that.
I think the universe continues to DEMAND that you rest. Trust me, lying on the couch for 2 weeks will do a lot more for your body and psyche than more doctors and tests. The universe continues to insist that you STOP. But you haven’t yet.
I absolutely trust your deep intention and connection to your projects and they are going to unfold in beautiful, magical ways. But I think you should really try to stop everything—even the novel—even housework. You don’t have to prove to MF or to me that you are going to be “productive” now that you’ve left traditional work. I think you are trying to prove it to yourself. “Productive” right now is resting, healing, letting go. Take on THAT project!
To be continued…
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Love to you all,