Since Sept. 26, 2004, from time to time, I have felt my young adulthood being eaten away by this illness, as I move further and further from my youth. Now I'm thirty-four and my friends warn that forty is just around the corner. Indeed, Lyme has made time feel surreal--maybe sleeping the equivalent of two out of the past four years has something to do with it--but it seems like just yesterday that I was hit with this disease. Just barely out of my twenties...and who knows whether I'll get out of this mess before my body stops working anyway because of old age? Will there be any "active" years left by the time I am well? Years in which I can make up for the things that I was "supposed to" do in my early thirties, like climbing mountains or starting a new career? I want those years back, but I know I must say good-bye to the expectations of before.
If you are a Lyme disease sufferer who doesn't fall into my age group, however, you might rebuke me. Perhaps your sentiments reflect that of one of my older friends with Lyme, who once said to me, "You're lucky that you figured out you had this disease while you were young. That gives you a better chance for recovery and just think, if you heal, you still have your whole life ahead of you."
Good point, I thought, but in my envy, I wanted to say back to her, "At least you had your health when you were my age, and were able to get married and raise a family and do all the things that young people get to do."
Yes, it was a cruel thought, wasn't it? But when you don't feel good, you might as well be envious of the crack in the sidewalk.
And then there are those Lyme disease sufferers who have been ill ten, twenty, or forty years--perhaps their entire lives. So what am I complaining about? At least I got to have thirty years of "relative" health. At least I got to travel the world in my twenties. At least I am much better off than I was four years ago.
What if you get Lyme disease as a kid? Some would view that as better than getting Lyme as an adult, because kids can often recover faster and more completely from disease. And they really still have their whole lives ahead of them, whereas an older person does not. But is it better to get Lyme when you are older, after you've had two or three good decades to establish a career and family for yourself? At least a couple of decades is better than nothing, right?
Actually, I don't think it's ever a good time to get sick. The envious rationale that we give to others as to why they are better off than we are is really nonsense. Whether you are twenty, forty or sixty, you may feel as though the best years of your life are slipping through your hands because of Lyme disease.
Life is time, only time, and we get so very little of it. Perhaps this is part of the reason why we despair about Lyme disease. If we lived to be a thousand years old, perhaps we wouldn't mind losing a few years to inactivity. But when you're forty and have lived half of your life in sickness, you wonder if any of your remaining forty will be spent in activity and health.
On the other hand, we often hear that happiness is more a state of mind than a product of circumstance and hence our "Lyme" years don't need to be wasted years. Activity does not equate to a worthwhile life, and we can use this time to learn and grow and find joy in other, new ways of being.
Sometimes I am encouraged by the fact that I believe in an afterlife, and that in reality, my spirit and I will never die. When I can frame Lyme disease through the lens of eternity, then I understand that a few decades of a life relegated to inactivity is really nothing. I mean, if I'm going to live for a gazillion years in Heaven, then sheesh, I should enjoy my quiet days on the sofa, shouldn't I?
And here's another secret, one that I remember in moments of sanity and gratitude...It isn't just the sick that feel as though their lives are slipping away from them. Many "healthy" people, those super-active folk who can manage a million friendships and careers and sleep only four hours a night, often feel as though their lives are a waste, too. That their years are falling from their fingers like balls of mercury (have you ever seen how fast mercury is? No, don't go breaking a thermometer or else you'll have another problem to contend with...) ...and that what they are able to do is never enough or what they want. The feeling may be exacerbated in the sick, but it also exists among the most energetic and most productive.
No, it's never a good time to get sick. But it's always a good time to re-frame time and the way we look at life. Maybe for you, as me, time is eternal and death is just a door into another life. Maybe we can be content with that thought, or at least find peace in a state of relative non-doing, and in a life that is worth living, even though we can't do the things that other people our age do. Even though we can't fulfill the dreams we had pre-Lyme; even though we hurt and are tired.
Perhaps we can re-write the expectations that we once had for our lives and give up the idea that our Lyme years have been wasted. In hindsight, we may find that they were the most "productive" in terms of what they taught us. We can dream new dreams, make new plans...but whatever we do, we shouldn't look around us with envy at what the "healthy" folk our age are doing with their lives. And we need to stop imagining that we are worse off than our fellow Lyme disease sufferers, just because we have lived with illness twenty years longer than they, or because we got sick when we were fifty instead of fifteen. The chew isn't always greener in your neighbor's yard, even though from a distance, it may seem so.