What’s the difference between being retired and being useless? Staying busy or taking up space? Is there a magical moment where one moves from one column to the next? I’ve been pondering these questions as I cobble together ways to feel useful and productive with the erratic uncertainty of Lyme. I am terrified of being seen as useless.
There is a lot of talk these days about “personal responsibility” and not wanting to pay for “able-bodied people who can work.” This presents me with a dilemma. Do I make myself sicker to assuage the scarlet letter of being useless? Or do I take care of myself and continue to chip away at my inheritance? I’m not costing anyone but my future self a damn dime. I don’t have insurance. I pay cash for all my doctor appointments and medications ($15k and counting). I am on no assistance. So why do I continue to beat myself up about this?
I do work. I lifeguard. It is low-key (except the .1% of the time when you’re faced with a medical emergency) and I can make my own schedule. I am an Airbnb host. Neither of these jobs pays the rent. They give me structure that I can manage and something to do for money. Cleaning, shopping, gardening, writing, socializing and working out take up the rest of my time, in that order. Some days I have to drop some or all of these things. Big deal. I deeply resent the idea that you have to ‘earn’ the right to be useless in America. First of all, being useless in America means not getting paid. Every stay-at-home parent knows what this is like. We don’t value certain jobs as much as others. We vilify the working poor. We especially abhor people who don’t carry their weight.
Second of all, things happen. Illness, bad luck, poor choices, economic downturns, anything, really. Most of us are closer to the edge than we’d like to admit. Most of us wouldn’t last long if we didn’t have investments, savings, families, or access to a social safety net. Without my dad and Katie, and friends, I’d give myself two years, tops, after contracting Lyme disease. That makes me lucky, not worthy.
We all know people who, for whatever reason, have more trouble with this than others. I am far less judgmental than ever (not that I was terribly judgmental to begin with) now that I have Lyme. People post memes that say things like “You never know what someone is going through. Be kind. Always” on Facebook all the time. I know instantly that this person is saying, in code, that they are going through some kind of crisis. It’s important to realize that things happen to good people, bad people, and everyone in between. Sometimes it’s not their fault, and sometimes you know damn well it is. Then what?
It’s an awfully big job to decide who is worthy of your empathy and who isn’t. I know some people see me out and about and wonder to themselves ‘how sick can she be’, and I want to explain how Lyme works. When I turn 65 and still have Lyme I can consider myself ‘retired’ and not ‘sick’. Or can I? Maybe I can be sick and retired. Will I be worthy of idleness then? What if I get well and want to work. What if no one hires me because I’m too old and have been sick?
I’m not alone with these thoughts and fears. I am exceedingly lucky to not have to ask other questions, like ‘will I run out of money’ and ‘do I have somewhere to live’. I am torn over solutions. On one hand, I don’t want insurance companies dictating my Lyme treatment, mainly because they are shitty at it. They deny and charge higher prices, so much so, that I’d rather pay cash (at much lower rates, I might add). If I was on Medicare or Medicaid, I’d have the same problems. Maybe Lyme is a special case, right now, with no consensus on how to treat, for how long, or what to do for patients who fall into the category of ‘chronic or persistent Lyme disease’, like me.
Meanwhile, I struggle to maintain a balance between self-care and usefulness.There are things I have let go without my knowledge. Through a stroke of luck (Jake, it’s Jake wanting all my hours at the pool), I’ve had some extra time. I hadn’t filed papers or gone through my files in a long time. I cleaned the refrigerator and the pantry. I went downstairs and cleaned long neglected corners of the house. The acts lightened me and gave me the sweet illusion of control. I was deeply disaoppointed, too, because man, I thought I was keeping up. It was a disconcerting peek into old age—the shocking ease with which things can get way out of hand.
There does come a time when you have earned retirement. Full retirement. The kind of idleness that means your biggest decision might be whether to put on clothes. My dad is there. At almost 89, he can do whatever he damn well pleases. At some point, I’m going to have to reassess where I am with Lyme, retirement, and usefulness. I’m putting it off as long as possible, because I might not like my choices. A lot can change in a short time, though, that much I know. And sooner or later, if I’m super lucky, I’ll get where my dad is. I don’t think I’ll wear clothes.