The Life Beyond Lyme

As I approach the fifth anniversary of my crash into chronic illness, I realize that Lyme disease has shaped, altered and morphed my character. For better and for worse. In my first book, “The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing”, I write about some of the powerful life lessons that Lyme disease can teach us. Such as that when you are sick and can’t leave the confines of your condominium for two years, then you sure as heck had better find new places of peace. Places that go beyond the walls of confinement and boredom, and the circumstances of fatigue and physical pain. Because the hardship of Lyme disease sometimes leaves us with no other choice but to go above and beyond. Discovering the value of solitude, a good book or an afternoon in prayer can replace the recreation and trinkets of the world in their ability to provide sustenance to the soul. And even though that sustenance tastes more like green vegetables than the strawberry-chocolate mousse delights of the active world, it is a sustenance that heals the body and enables the soul to persevere. It is a quiet sustenance that transforms, because it involves going beyond the opium-like euphoria of recreation and busyness to the spiritual wealth found in disciplining the mind and seeking to appreciate the beauty in the unlovely, the painful, and the mundane.

But I have been quick to forget the words that I fed myself with as I attempted to feed others from the lessons that I had learned in my first years with Lyme disease. Attaining a functional level of health has allowed me to be lazy with my mind and to rely and hope again in the delights of the world for my peace food. As a result, as I re-join the world of the physically healthy, I find myself no longer looking at the gains that I have made in my healing journey, but am instead comparing myself to my still more active friends and feeling frustrated at how short I yet fall at leading a “normal” life again.

You would think that achieving some measure of health would be reason for rejoicing. But after nearly five years of living a quiet life of solitude, I am finding that getting back into a more active life brings its own anguish and challenges. Besides trying to find a job that won’t catapult me back into sickness (you gotta take care of your body forever after this thing), I realize that living with Lyme has caused me to adapt to a new way of life that I must change if I want to re-integrate back into society.

Of course, some things should not be changed, such as the time that I now take every day to pray and exercise, but other things should. Because in a sense, I have forgotten who I am and what I was before Lyme disease swept my former life away. I wouldn’t go back to that life for the world-it was fraught with frantic days that placed a burden on my body that not even the healthiest of souls should endure-but I need to re-discover life outside of Lyme. And that isn’t easy, especially when I have become a writer and advisor on this disease, and can still relate better to the sick than to those who have never had their lives vanquished by illness. Why? It’s been the life I’ve lived for nearly five years, and although I see that life slowly vanishing in the distance, a part of me yet clings to it because those whom I understand and who understand me are those who have been in the trenches with me, battling this thing to the death. They are my partners in Lyme, those who have stood alongside me and battled with me when Borrelia threatened to take our lives from us. How can I forget them?

Anyone who battles chronic Lyme disease knows how all-encompassing it is; how much energy, time and attention must be given to overcome it. There are no shortcuts in healing if you truly want to be well. You must employ all of your artillery and throw the entirety of your weight and will against the bugs. Because it’s the only way out.

And because the journey is so long, arduous and all-encompassing, if you are like me, then you realize how much potential it has to obliterate your ambition for other worthwhile pursuits in life. How it can slowly erode away at your desire to do other things, because let’s face it, you had to give up those desires in order to survive a life of monotony alone in your apartment. But as we glimpse healing on the horizon, remembering the things that we did and the people that we were before Borrelia came along, may be a vital component to recovering full health again. Some of you have been sick for so long that you can’t recall your life being about anything else but fighting symptoms. You wouldn’t know what to do with yourself if health were handed to you in a handbasket. I can say this confidently, because I thought I would know what to do with myself once my life was handed back to me, but as I move back into the land of the living, there is yet a part of me that feels safer in the trenches, because it is a known place where I have found healing and friends.

So the challenges don’t stop with wellness, and while I still struggle mightily with back and hip pain, it’s nothing like trying to tame the fierce assortment of symptoms
that I used to come up against daily. And I have become functional enough to hope in a life of recreation, romantic relationships, and professional pursuits, but I have made a mistake by hoping in-instead of hoping for- these things. There is a vast difference, because no life circumstance can bring peace and joy, except for temporarily. The ego always demands more. Yes, it’s easier to be happier when you aren’t hurting, but fabulous circumstances are never enough to save the thoughts from going to hell. The blessing of illness is that the challenge to find meaning and peace in a life void of health, relationships and recreation becomes a question of life or death–because if you aren’t able to go beyond in your thinking when all isn’t well, then no hope remains; when things only “sort of suck” the mind can afford to be lazy because the soul can yet lean on circumstances for its smiles.

It’s a lesson I have to learn and re-learn, again and again. But just as I was forced to find sources of peace outside of my circumstances in my sicker days with Lyme, I realize that moving back into a busier, more productive life doesn’t exempt me from this practice. Because moving back into a life of relative wellness is fraught with its own challenges, none of which can be mitigated by finding refuge in a life of slightly better circumstances, and in the people, recreation and toys that come along with that.

This week, circumstances have come crashing down upon me, enough that I am being coerced back into the beyond to find my peace. There is no other way when hardship prevails. Maybe there should be no other way, anyway.