Wife Down

Two days ago, Ma'ikwe and I started out for Quincy IL at 4:30 am to catch the early train to Chicago. It was to be the first leg of our journey to Maryland, to attend the eighth and final weekend of our two-year facilitation training course in the Mid-Atlantic States. On the drive she got nauseous. Though we cracked a window and slowed down on the curves, it didn't get better. Ten miles out, she asked to pull over, so she could get out and puke. Not good.

Back in August 2010 Ma'ikwe got diagnosed with Lyme disease. She underwent a strong antibiotic course at the time (six weeks of doxycycline) and got relief from the symptoms. Though she got demonstrably better right away, her strength and stamina never returned to pre-2009 levels. Over this winter the symptoms gradually reappeared, with the pace accelerating in the last couple weeks.

Ma'ikwe traces her illness to a bout with Rocky Mountain Spotted Fever (which is tick-borne, just as Lyme is) that occurred 15 years ago. While that wasn't her orientation to her illness in 1997, today she thinks that Lyme disease (essentially a spirochete infection with rather sophisticated defense mechanisms) entered her system at that time and has been there ever since, mostly dormant with occasional flare ups—which have lately been more frequent and more severe. Yuck.

Thus, Ma'ikwe believes she's wrestling with chronic Lyme disease, which is a demon that's the very devil to permanently cast out from the body. As if her symptoms are not bad enough—constant achy joints, especially in the arms and legs; low energy; tachycardia; shortness of breath; low libido—there is controversy among allopathic physicians as to whether chronic Lyme actually exists, significantly complicating the search for a doctor to advise on an appropriate healing regimen.

(Insurance companies love this by the way, as they can use the party line of the Center for Disease Control—that chronic Lyme doesn't exist—to deny reimbursement for treatment. This administrative wrangling is a bitter impediment for the growing group of victims who identify as sufferers of chronic Lyme and are desperately looking for help.)

It has been a godsend for my wife that there is an online support group for chronic Lyme. Whenever some new set of painful symptoms crops up, she can post it to the group and she'll get 10 replies in 15 minutes, where responders are reporting similar experiences and describing what they've done to cope with that presentation. Notable, she gets this near-instant support independently of the time of day she posts her anguish. It has been an incalculable morale boost for Ma'ikwe to know that she's not alone and that she's believed.

My end of this is support. While I have no personal experience with Lyme, and don't know on a body level what she's going through, I believe whatever she tells me and am just trying to hang in there with her as she rides this out. My support is physical (doing some of the recurring chores that have become much less manageable); emotional (listening to her describe what's going on in her body, and helping her remember how current reports match up with what she told me last year, last month, or last week); and financial (both because she can't work as much and because her health care expenses are increasing).

In two weeks, Ma'ikwe and I will travel to see a Lyme-literate doctor for the first time. The appointment coincides with the end of my current business trip, and I'll be able to be with her for the three-hour initial visit, helping to make sure that Ma'ikwe asks all of her questions—and then helping her remember later what the doctor said. I am so thankful that we'll get to go through this together.

As soon as Ma'ikwe puked in the pre-dawn light Tuesday morning, we both knew that there was a serious question to face: did it really make sense for her to push herself to get on the train? We had about 15 minutes to decide. Would her queasiness in the moving car not persist on a moving train? Did her strong desire to be with our class on graduation weekend trump the balking of her body? In contemplating her choice, she went through the anguish of wondering if she'd ever go on trips again (if she gave in to the illness now was it just an inexorable slide into being housebound—it was a grim few minutes)?

Holding her, I asked her to listen to her intuition. I'd done solo training weekends before (14 of them in fact) and would be fine if she backed out. While the trainings are better with her, that's really only true if she's strong enough to participate. As we pulled into the station parking lot and popped the trunk to remove the luggage, Ma'ikwe decided to not go. Suddenly, I was on the train sitting next to an empty seat. While that's not an unusual experience in and of itself, it was a weird one when I expected Ma'ikwe beside me. Instead, I was a little bit beside myself.

As I type this in Maryland, Ma'ikwe is safely back home on her couch, coping in more familiar territory, with myriad friends and loved ones close at hand. She will not have to churn this weekend over when to take a break and when to attend sessions; she can just focus on her health. Looking back at Tuesday morning, she knows that she made the right choice. Just like I did in asking her to be my partner.