Olympics for Huntington’s Disease

For most of her life, my beloved loved athletic activity. Basketball and softball for kinesthetic connection with other women. Sailing into Lake Champlain. Bicycling around town. Even after Huntington’s Disease had put most of this out of reach, she used to walk the few blocks to the corner store for her nightly chocolate bars. 

Nowadays, her sporting events are more basic. Getting on and off the high antique bed blessed by earlier generations of her family. Navigating around my piles of paperwork into the living room. Using cutlery or fingers to keep food in control all the way to her mouth. Focus. Exertion. Trying again when one effort falls short. She’s still the athlete, and even after a fall, she’s gathering her strength to get back in the game.

So the Winter Olympics — which she hears but doesn’t really see clearly — fill our living room with people doing exactly what she does every day. Did a skier’s leg fly out to the side on that turn? Been there, done that. Did the skater fall in a heap before the eyes of the world? Yeah, that happened in the church parking lot. Did the curler have trouble getting the stone on the target? Yep.

But did someone complete a good run on bad ice? Done that, too. Did someone fight back from a deficit, land a spot on the podium with the last run? Did the whole team gather around to console a disappointed competitor? Yes, done those things, too.

So last night, just under a month out from the last ambulance ride, and almost two weeks since the neurologist asked for some new and scary tests, as Lawrence O’Donnell finished his Last Word, my beloved asked, “Where are the Olympics?”

“They’re not on now, it’s eleven p.m.,” I said. “But they start again in an hour.”

“Good,” she said, and snuggled back into her blankets. 

“Are you gonna stay up for the Olympics?” I asked, somewhat incredulous.


And so, as I have done so many times with old movies or special music, as young adults do just to talk, as lovers do for sex, as hikers and snow-bunnies do to cover terrain in moonlight, she settled back in. I watched a bit of curling — a peaceful sport, good for overnight binging — and went off to bed. 

Yes, she fell lightly at 3 a.m. when she got up to head for the bathroom. I knew she would. But by the time I heard her, figured out where to look, and arrived, she had risen and resumed her trek. After I checked her head for its latest bump, she settled back into her home base, and I went back to bed.


Milestone in Caregiving

On Friday, I went shopping and stayed out for lunch. It started with a bath on Wednesday and a quick trip to the grocery store. Two days later, i was ready to hit the town.

What took so long?

Accepting that my fiancee’s family could take care of her for at least a few hours — food, medication, anything that might happen — while I went out to do something completely unrelated.

It’s almost two weeks since the last big crisis. The medical team sent her home, it was okay with them.

But that safety at home is, to my mind, the result of my constant vigilance. It isn’t all me, of course. There’s God, there’s community, there’s returning strength and balance on her part.

And there’s her family. The first time one of her relatives arrived to give me some leisure, I couldn’t bring myself to leave the house. Relaxing in that bath and doing a bit of pick-up in what used to be my room, that felt pretty good. When I’m on the second floor, I don’t see her. And she won’t come up (I hope, it has happened) to seek my assistance with anything. It feels like gross abandonment.

But if I don’t let go, I won’t be able to visit my own family once the spring breaks. So two days later, I was ready to hit the road. These wonderful folk were loving her, caring for her, long before I ever met her. She went through several crises before she met me, there’s a trustworthy track record among them all. It’s not about them, it’s my fear of doing anything that hastens the day of my grief. The fear of adding guilt to what already seems immeasurably bleak.

So what did I do with my several hours off?

I worked on decorations for our wedding.

Caregiving at Candlemas

The returning sun now overwhelms the fairy lights strung along my dining room window, and even the sparklies in the curtain-dimmed living room fail to impress. Through the slit between thermal-lined panels in front of me, nodes on the lilac branches hint of scents to come.

But what about my partner? She has taken some tough falls lately (due to Huntington’s Disease), and her struggles to get back up signify a deep deterioration in basic muscle tone. Was it because the unusually cold and icy December deprived her — us — of so many customary outings? We had no Christmas to speak of, no New Year’s. We didn’t even feel safe going to church on Sundays, and now we’re paying the price. 

Or has she turned round the last bend? She stands up mornings with determination, and asks for all her meals, but it doesn’t last long. For me, the days bled into weeks and now months without attending to basic needs. The house is a mess, many days I don’t even get dressed. Nor do I care — for any time I spend with her, cuddling, commenting on a television program, choosing music together — that’s more important to washing dishes. I can’t help thinking with envy of people whose loved ones are fading away in supported residential settings. Maybe more of that support is for the family than I had realized.

Still, her family has rallied around to care for my needs as well. Thanks to their ministrations to my partner, my house, the medical needs, fear of her death has begun to loosen its grip on my spirit. I’ve been going downtown for a little while each day (which in Burlington, Vermont, is a few blocks away and a few blocks large). I’ve been getting dressed, thanks to a caregiving high school classmate — reconnected at our reunion — who recommends it.

And now, we arrive at Candlemas. Groundhog Day. Feast of St. Brigid. Forty days after Christmas. But what’s working for me this year is the Jewish-Catholic Biblical message about repurification of Mary. Protestants call it “The Presentation of Jesus in the Temple,” but Catholicism and Judaism pay more attention to the journey of women. Judaism speaks of Miriam going to her well for water that revives her most deeply, while Roman Catholicism borrows and expands on this to bring a mother out of what we now know to be the physical travails, depression, and confusion of birthing a new baby. Thanks to my friend and colleague, Sue Mosher, for leading me to www.ritualwell.org, with its section on Kos Miryam.

The first challenge in reclaiming sacred self after crisis is to return to Genesis One and restore the sequence of time. Darkness will give way to light — even though darkness returns again. Work will give way to rest– even though the work will come again. Chaos will part to reveal patterns — even though the patterns will wobble back into empty space before we know it. So as I prepare to live into my second clarified weekend of this winter, I appreciate this ritual offering, found on Ritualwell. Please note the attributions and their restrictions which I have included at the bottom:

Kos Miryam for Havdalah

FOUND IN: Ending Shabbat: HavdalahHealing & Hard Times

TAGS: Miriam’s Cup

Kol Isha | Ritual Component

There is a custom among the women of Israel to draw water from a well at the end of Shabbat, for at this time the water ofMiriam‘s Well fills all the other wells in the world. Those who drink this water with an open heart and an open mind are brought to a place of healing. Remember us with healing, God, for when You sweetened the water at Marah You told us, “Ani Adonay Rofeh-khah – I am God, your healer.”

Let us drink deeply from the mayyim hayyim, the living waters of Miriam’s Well. As we drink, may we find sustenance from God’s healing powers and strength for the coming week.

(lift cup)

Zot Kos Miryam, Kos Mayyim Hayyim.
Hazak Hazak V’nit-hazeik.

Hazak Hazak V’nit-hazeik.

This is the Cup of Miriam, the Cup of Living Waters.
Strength, Strength, and let us be Strengthened.

Barukh Atah Adonay, Eloheynu Mikor ha-Khayyim, rofeh kol basar u’mafli la-asot. —

Blessed are You Yah our God, Life-Source of the Universe, Who heals all flesh and performs wonders.

N’varekh et Eyn ha-Hayyim she-natnah lanu Mayym Hayyim. —

Let us bless the Source of Life Who has given us living waters.

(blessing for drinking water)

Barukh Atah Adonay, Eloheynu Melekh ha-Olam, she-ha-kol nih’ye bi-d’varo. —

Blessed are You Yah our God, Majestic Spirit of the Universe, by Whose word everything is created.  



© 1992    Kol Isha  (Matia Rania Angelou, Janet Berkenfield, Stephanie Loo) 
May be used, but not sold, by notifying Kol Isha in writing at PO Box 132, Wayland, MA, 01778. 
Please include this copyright on all copies.

After (Another) Fall

Our routine of meds, meals, recreation, respite care — it’s all been on a roll for the past few weeks — and Saturday night had us all set to return to worship after the cold spells and schedule adjustments. (The Weather Channel still points us out as a cold spot, but after the part of the Polar Vortex that we got in December, it’s all good now!)

Anyway, I settled in at the computer with my tea, waiting for her to wake up.

Then came the THUNK from the bedroom: she had fallen.

I found her on the floor. Prone. Face down, fully elongated, breathing deeply. She did not respond to her name or to touch, but she was breathing. She’s usually a responsive sleeper, so this puzzled me.

So what did I do? I figured her REM sleep was unusually deep, that her Huntington’s Disease sleep chorea had propelled her over the side of the bed, and she would wake up when her dream finished.

Sure enough, about fifteen minutes later, she wandered into the living room (yay! walking normally!) asking, “What happened?”

And I STILL didn’t get it!

When she was more wobbly, nauseous and confused after two more hours, I called the Replenishment Relative, who said I should take my beloved up to the hospital to be evaluated for concussion.

How did I not think of that?

It took another hour to obtain permission from my beloved to call an ambulance (note to social activists: mental health issues impair decision-making capacities), but when she stood up again and toppled like a cut tree, the fight was done.

And here’s the amazing party: After the EMT’s strapped her into the ambulance, they did a routine Carbon Monoxide test, and her levels were extraordinarily elevated! They came back in and checked the house (which was fine) and the alarms (which were serviced three weeks ago and worked perfectly).

The CT scan of her brain was negative for internal bleeding or concussion symptoms. A long day at the hospital brought down her Carbon Monoxide levels, and we slept in the living room, where she has a safe accommodation, until her niece and nephew can obtain and install the half-guardrail on our beloved heirloom family bed.

I write this 24 hours later. She’s got a few bruises, including one on her head, but she’s basically fine. Clear head, eating, resting as she does during each day. PBS Nature is focusing on wolves, and when I turned on one we saw earlier this week, she immediately complained that “we saw this one before.”

So now, the issue is me. The doctor said to watch her closely for two full days, and that’s not something I can delegate. But after missing Christmas, New Year’s, everything since Thanksgiving, what I’d really love is to believe that when those 48 hours are over, I am meeting someone special at a spa up in Stowe, to relax, to chat, to haunt the fitness center, the pools, and the massage tables.

But it’s more likely that I’ll be lucky if I can let myself take an hour or two around Burlington. However, I DO plan to spend those hours joining and using a gym.

I Used to Be So Good at Vigiling

Now that disemployment policies (deliberate imposition of unemployment on otherwise willing and able workers, as opposed to “natural unemployment”) have taken so many out of the rhythms of outside work, Books of Hours, Daily Rules, etc, are making a big comeback. Being more of a Christian than anything else, I, too, have frantically searched various such resources for a way to manage my own expanding time.

Here are the three resources on which I have settled:

Music of Silence by David Steindl and Sharon Lebell, with an introduction by Kathleen Norris

Seven Times the Sun: guiding Your Child through the Rhythms of the Day by Shea Darlin

and a reflection series from the Society of St. John the Evangelist in Cambridge, MA.

It seems I cannot master more than one piece of this at a time, and anything that’s mastered one day is likely to slip away the next week. But here are the ones I’m feeling pretty good about: Terce (the mid-morning break for renewal), Vespers (the end of day wind-down reflection) and Compline (the final, bed-placed spiritual immersion).  I have made some progress on Sext, which is said to be the worst one, because it’s when you pause for the midday meal and rest and then get back to work.

Notice I haven’t yet mentioned Prime — that first morning application of energy to tasks. But it’s coming along.

Nones — the end of day clean-up and preparation for tomorrow? Forget it. Not a clue. Someone once told me they detected some “J” in my Myers-Briggs profile, and I still wonder who they were talking about.

Which leads me to “Vigil.” I hadn’t been paying much attention to this one, and it turns out, I should have done. And when I reread that section of Music of Silence two days ago, it was not about the night before — Erev, as Judaism says — but more about that time one lies half awake before dawn, visions of the coming day darting through a mind too tired to chase them down. For me, at least, the result is a horrible clash of aspiration against mortality. Doomed before I start. It’s a dreaming moment, and I’ve reached an age, and a poverty, in which I know most dreams must be put aside. It seems to be the last part of me that hasn’t caught on to being out of the marketplace, away from the community where people push each other along, and thereby are all more productive.

There are things I still know about what will happen. When my fiancee wakes up, it will be Prime (thank God she’s a morning person and gets me going!) and energy will rise within me. When her Huntington’s Disease knocks her back into sleep about halfway through my Prime, it should be my Terce (coffee break), but often sinks into a premature Sext (lunch hour). But if I just remind myself that there’s lots to be done even later, through dinner and bedtime, it makes me feel better and Sext settles into a calm that refreshes.

But Vigil. That’s the tough one. Right now what helps is blogging (thank you, dear reader), Facebook (God bless Community), and a small list of email check-ins that help me remember what I’m doing.

And, since it’s so verboten to say this for ministers in covenant or search with congregations, my monkey mind relies on judicious and minimal applications of Ritalin to keep it organized. There are many family members now using pharmacological as well as spiritual tools to deal with responsibly diagnosed ADHD.

Vigil is when I have to remind myself of that diagnosis. This will not be the day I do a thousand things. It isn’t supposed to be. It’s just one day, and there are just a few covenants — at best — in which only baby steps will be taken.

Knights used to vigil to prepare for investiture, a changed life. But in my protesting days (and thanks to those of you now able and willing to do this work), it was only a single execution, a single life for which I stood outside for hours.

That’s when I was good at Vigil: when I knew it was about the tension between life and death. How little we can hope to do, how much we can achieve by doing little.