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.



I like to google the side effects of the drugs I take. I used to do this several times a day, mainly because I could never remember what they were from hour to hour. I do it a lot less now. A month ago, some not so good symptoms crept back (a whole other google rabbit hole). I went back to the doctor and I started taking liposomal artemisinin, a Chinese wormwood derivative that is effective against malaria, babesia, and Lyme (babesia is often a Lyme co-infection) The liposomal part is a fatty matrix that stabilizes the artemisinin part and helps the body absorb the artemisinin. I’m also taking a few more herbs. Cumanda, an anti-bacterial herb from the Campsiandra Angustifolia tree in the Amazon is one. Cumanda is for neuroborreliosis,  or “Lyme brain”. I’m also taking teasel root extract. That one is from Dypsacus Sylvestris, a biennial teasel plant. Teasel root extract is a cyst buster and biofilm remover. See why I had to google this shit several times a day?

I wondered which one of these herbs was causing my brain fog, liver pain, fatigue, itching, stomach problems and achy bones. As usual, there is no definitive answers. Could be the liposomal artemisinin. Some of the symptoms might be from teasel root. Others might be from cumanda. Why do I care? It doesn’t really matter, does it? Either way, I have to take them, or the alternatives, Flagyl or Mepron, or any of the pharmaceutical drugs I have also used. They have some of the same side effects, and some others that are worse.

One of the things I’ve noticed now that I am noticeably better is the herxes don’t get easier. They are not as bad as they were earlier, but again, does it matter? Sick is sick. These are mostly walking around doing things and crashing later in the day herxes, so shouldn’t I be thankful for that? I should be, but I’m not.

Oh, I forgot the last one I’m taking now, MC-Bar-2. That one is for bartonella and is a medley of herbs like Skullcap, Jamaican sarsaparilla, cordyceps, Pau d’Arco, White Willow and more. I started to read about each ingredient, but stopped after cordyceps, a fungi that the Chinese grow on caterpillars (and I’m drinking that shit? GROSS!). Also taking low-dose naloxone, the drug they use to reverse heroin overdoses. They caution me against taking any narcotic every time I refill that one, but I happily down the little white pill in hopes that it does, in fact, boost brain activity in inflamed brains like mine.

Sometimes I wonder why I keep taking all this stuff. Then Lyme comes creeping back. Once bugs get in your system, it’s hard to eradicate all of them. Once Lyme goes untreated for any length of time, no one knows if you are ever “cured”. Each bug has unique properties that make them hard to eradicate. Cysts, biofilms, protein-changing strategies, even immune modulators in tick saliva,  It’s as though the ticks and the pathogens they carry form an evil synergy  designed to fool the human immune system.

I am not making this stuff up. I wish I were sometimes. The Lyme community debates the validity of herbs vs pharmaceuticals, IV antibiotics, diet, and alternative therapies, like rifing (a highly controversial technique using electromagnetic waves, the patient holds a metal cylinder in each hand, rather like a jumpstart cable for car batteries). The herxes  I experience tell me that the herbs work, sometimes more effectively than the pharmaceuticals. Sometimes  I wonder if I’ll be on some form of maintenance herbs forever. That wouldn’t be too bad, except that the herbs taste foul. They have to be taken on an empty stomach, with a small amount of water. I look at the mixture as a tastebud wake-up call.

Why do I keep looking up both the disease and the cure? I think I have to double check to see if a) I have Lyme, and b) I am still sick with Lyme. There is a third option. I have the ridiculous theory that since I have Lyme, I will get no other diseases. The sheer lunacy of this insures that I double and triple check my symptoms, making sure that I only have Lyme. You can die from Lyme, but it is rare, if it is treated. I had to google Lyme fatality rates just now. They are low, but phrases like “drastically shortened lifespans” and “death from secondary infections” pop up too often for my taste.

There can be no other reasons than these. It’s fucked up that I still need affirmation that I do have Lyme. I don’t want it. Is that why I do it? Maybe this time I’ll see that all these symptoms are not Lyme! It’s something else, something easily cured with a few pills. And don’t you think I’d be okay with being sick by now? Apparently not. <sigh> Google will have to continue to be my support group, because I don’t particularly like support groups. It’s not that I don’t want to share information. It’s the few people who seem to use the forum as an opportunity to whine on and on about how sick they are.

Ooh, that was kind of mean. I’m sure they can’t help it, and really need the support. I like a different kind of support. I like it best when people treat me normally, teasing and harassing me as if everything is fine. It is, mostly. Except when it’s not. Then I google away, double and triple checking. Just in case.