When I first started treatment and began killing these spirochetes in earnest, my naturopath encouraged me to recognize that the all-over body pain and emotional distress signaled the demise of the bugs and my body’s attempts to deal with the onslaught of toxins released in the process. The worse I felt, then, the more encouraged I should be since more pain meant more dead spiros.
I embraced the theory and reminded myself each time I herxed of what she’d said. The naturopath, too, would have to remind me as well, since my brain has become more a sieve than the vault I once enjoyed. When I was still able to work and my colleagues would comment on noticing me walking with either a pronounced limp or a cane, they would ask about it, and I would begin rattling off the “good news” that I only felt like death because the treatment was working.
Based on the confused, concerned, and sometimes outright amused expressions with which this perspective on the pain was received, I suspect half of my colleagues think I’m nuts and the other wonder what kind of quack I’ve gotten myself involved with.
Now that I’m no longer working, my days of pain remain uninterrupted by such inquiries. My poor family is well acquainted with the herxing and they just try to stay out of the way and not poke the bear. And while I found the questions about my health irksome, nosey, and sometimes of questionable intention at the time, they at least provided me the opportunity to remind myself that the pain is a positive sign.
That key concept slipped through the cracks this month as I experienced the worst herx yet. I’d expected more pain, less mobility, and utter exhaustion because I’d started the antibiotic injections at the start of this cycle. Still, when the storm broke and I awoke at a two in the morning crying from the pain, I found myself utterly unprepared for it and laid there in bed, wondering why I keep waking at all.
My body, mind, heart, spirit filled beyond capacity with pain. I smelled it, tasted it, felt it collecting in my neck, shoulders, back and hips. I couldn’t shake it with meditation, prayer, gentle stretching, breathing, food, water, coffee, hours on the porch at down and duck. Nothing. I felt overfull with my own death and spent most mornings and every afternoon crying inconsolably for my daughter, my wife, my family, my friends, myself.
Now that the emotional distress of the herx has passed and I’m moving into the bed-ridden pain part of the cycle, I’ve regained the necessary perspective and posted a note by my bed: It is not my own death I feel; it is the spriochetes’. We’ll see if this works next herx. I’ll probably see it, tear it down and burn it in a fit of pique. The anger and frustration that course through me still amaze me.
Recently, I got into a tiff with the administrators of my health spending card and chewed the customer service rep a new one—not as a blameless cog in a corporate wheel but because I’d caught him out in a lie. At the end of the first week in January I still hadn’t received my new card. My old one had, of course, expired in December. First the rep tried to blame me for not ordering the new card. Then he had to back down and admit that the company really doesn’t want the barrage of consumer calls requesting new cards and that, yes, their system was set up to deliver new cards in a timely manner.
We disagreed about the timely manner—and he lied and told me a card had been sent out just two days previous. I knew for a fact this wasn’t the case. I had already checked online and their own voice-mail hell system had told me a new one had not yet been issued before transferring me to him—and he was the escalation manager and not just a ground-level operator so the system clearly knew there was an issue. I blew my top and told him that I was dying and the last thing I needed was some [insert favorite epithet here] jerking me around and wasting my last days on idiotic bureaucrats who didn’t have the intelligence to keep their purported facts straight. It’s a sad sad day indeed when the Lyme brain can track facts better than those fools.
Then the little f-er [my own favorite epithet] had the gall to tell me he was sure I’d be better soon. I snorted and told him only after I was in the ground would I feel better and hung up. (For the record, I am donating my body to science since I can no longer be an organ donor. Anything that’s left is to be burned.)
Two hours after the call I got an automated email that my new card had been issued. And I did get the card in the mail five days later. It took them ten days to process my requests for reimbursement for the doctor’s appointments and meds I’d had to pay for out of pocket while waiting for the card, since I couldn’t very well cancel my appointments—not just for the protection of my health but because the disability coverage insurance company is dissatisfied with the pace at which my treatment plan is progressing and will extend my claim now only from one appointment to the next, leaving literally only 24 hours for my doctor to gather her notes and fax them to the company before my “agent” closes my claim. Again. Stress much? I don’t recall that being included in my treatment plan. . . .
Through this, I’ve come to the conclusion that death with dignity comprises more than the intentional act of cutting short one’s final days of suffering and misery. It should also be about having doctors who don’t roll their eyes at you, pat you on the (inflamed and painful) knee, and assure you that they know aaaaallllllll about Lyme and that you don’t have it. On the first effing visit ever with the doctor, despite the documented lab results in my file indicating otherwise.
Dying with dignity should include not having to duke it out with the insurance companies about treatments not being covered, about disability leave dates being extended in two-day chunks as a means of blackmail for additional documentation and treatment plans (apparently, having had my new medical insurance for only 19 days, the company handling my leave from work feels it is taking too long for an evaluation by a specialist—forgetting that I’ve had five appointments with three doctors since the first of the year and have absolutely no control over when the specialists get back to me—and that yes, they, too are probably inundated with referrals because surely I’m not the only one who clung to life through the last weeks of December, waiting for her insurance coverage to change).
Dying with dignity should include the safety net for which I worked myself (quite literally) into the ground. I gave twelve years of honest work to my employer—the longest damned temp job ever I’m sure. I only took the job because I have a daughter to feed and held onto it because my child kept eating. Imagine that.
To have my integrity doubted now fills me with such rage I want to take photos my myself to send to the insurance company, my pale yellow skin hanging off my unpadded skeleton—ask them if they think I’m really healthy enough for work. But then, there goes what little dignity I have left.
Dying with dignity should not include sleepless nights induced by maternal guilt for having squandered my child’s college education savings on treatments that didn’t work for me and weren’t covered by my medical insurance (the treatments I underwent work for many many people). It should not include having to choose between getting on the long list of homes awaiting foreclosure and feeding my child or paying for my meds. It should not include hours spent in the afternoons wondering why I’m still here, dragging my family down, trying to cling to the last vestiges of positive thinking and peace I’ve acquired, trying to rest and get better so I can continue to live with dignity.
Maybe that’s the problem. Maybe there is no dignity in death, by its very nature. Maybe there is only dignity in life.
No comments:
Post a Comment