Wednesday, August 8, 2012

On Having a Chronically Ill Partner

My wife, Ma'ikwe, has chronic Lyme disease.

She had been suffering from symptoms (including joint ache, stiffness, fatigue, nausea, and occasional vertigo) for about nine months before receiving a definitive blood test in 2010. After treatment with heavy doses of the antibiotic doxycycline in the fall of that year, she enjoyed about 15 months where her health had rebounded to about 80% of normal. Then the symptoms returned around the first of this year.

Unfortunately, the same antibiotic treatment was not nearly as effective this time around, and she's eight months into trying a bewildering combination of protocols in a determined effort to regain her health. [See We Went to the Doctor and the Doctor Said… from March 24, 2012 for more on the disease and how Ma'ikwe has been treating it. See The Lemon and the Lyme from May 9 for how this has been a strain on our relationship.]

Two mornings ago, we lay in bed and Ma'ikwe was in tears, lamenting that she wasn't getting the support from me she needed. 

As her state of depleted energy has persisted, her patience is wearing thin with her slow, up-and-down progress in battling the illness. This journey is made doubly tough by the need to cope (as best we can) with the record-breaking heat assailing the Midwest this summer. Ma'ikwe is worn out, and she has diminished tolerance for:

My Not Listening Well Enough
This has a number of components. First, I sometimes repeat questions that she's already answered. 

Second, I have a tendency to talk over her when we both want to talk at the same time. 

Third, it's relatively common for me to share a past, related challenging experience of my own (if I have one) when she reports something that's currently being hard for her. While I think I'm bridging to her reality, she experiences it as my hijacking the conversation. Instead of continuing to be present for what's going on for her, she feels I'm turning her distress into (another) occasion to talk about me. Not good.

Fourth, our styles of sharing are different. While I like to walk through what's been on my mind since we've last shared, in a stream of consciousness monologue that jumbles together the trivial with the momentous; the humorous with the vexing in an unedited litany, Ma'ikwe prefers to be drawn out and then listened to without interruption. If I ask questions (in an attempt to better understand a thread), she often feels knocked off center and disrespected. In short, Ma'ikwe offers me what she wants in return and then feels cheated when I don't track her stories accurately enough or quietly enough.

While none of these communication issues is peculiar to our marriage, they add to the challenge of our successfully weathering the Lyme siege.

Right now, it mostly needs to be about Ma'ikwe and my challenge is to adapt better to what works best for her. It's not about what's fair or balanced; it's about what's possible and needed to get through a hard time—with each giving in proportion to what they can.

My Not Bringing Things Up
While Ma'ikwe ordinarily appreciates my being willing to talk about what's bothering me, it's hard for me to know when she has sufficient energy to hang in there with me when I'm churning about something in our relationship. How fair is it for me to ask my sick partner to listen to my lamenting about what's hard for me?

While I'm convinced that some of the time I should do this anyway (picking my spots for when her energy seems most able to handle it), it is damn hard to sort out. There are many days when it appears that it's all Ma'ikwe can handle to just hold her own life together, and I am loath to burden her with my concerns as well. Instead, it seems prudent (or at least humane) to just put such concerns on hold and wait until her constitution has been restored to something far more robust before bringing up relationship issues.

Unfortunately, this leads to her bringing up hard stuff far more than I, and that, understandably, pisses her off as well.

My Touching Her in Irritating Ways
While cuddling and touch have been an important part of the vocabulary of our intimacy throughout the seven years we've been together, it's much trickier these days. Ma'ikwe suffers from fibromyalgia-like symptoms and even light touch can be painful. Usually my touching her back is pleasurable for her, but not always. Now, sadly, something that we used to look forward to very much has become uncertain, and we touch much less.
• • •
Hardest of all, we don't know how long we'll have to hang in there before things will get significantly better. We don't know if Ma'ikwe will ever fully recover or if it will again be OK for me to touch her casually and we'll both enjoy it. I have a much deeper respect these days for that portion of traditional marriage vows that goes "… for better and worse."


Robert Palusinski said...

Dear Laird,
I'm reading your blog since many many months mostly because I'm groups' facilitator (fostering Deep Democracy approach in groups). Thanks for your sharing.
Regarding chronic illness I belive both of you checked and tried hundreds of possible approaches. HOwever I'd like to recomend you (because my Processwork therapist background) the Work of Arnold Mindell who made revolutionary job connecting dreams, uncounscous material and bod symptoms.
WOrking in such way sometimes is healing (not always) but always give meaning to the did-ease. Find out in the web "DreamingBody" and Arnold Mindell. And also see this short movie please:!
wishing all the best from Poland

linenkc said...

Dear Laird,

I read your post with interest because I've had periods of my life where I've been the partner/caregiver for loved ones with chronic/terminal illness. I love the way you think about your role, and the way you are being inspires me.

Thank you.