True Story: Married not Once, but Twice, to a Dying Woman

This is a story of lesbians in love.  It is also one facet of the jewel story of my sister-in-law’s sister, Jill Johnson-Young.  I hope that I got all the details right, but I might not have –  the heart of the story remains true.

While caring for her life-partner-turned-wife-anulled-by-the-f*cking-homophobic-system-called-Prop8-eventually-turned-wife-again as she suffered from a terminal illness, Jill and Linda married.

Linda was diagnosed with pulmonary fibrosis three years before her death. As with her breast cancer diagnosis, she fought it hard and she gave it all she had. Much of the time she didn’t know how debilitated she was becoming. In 2008, on the Tuesday of the week we were finally going to be able to be legally married, her pulmonologist told us she was terminally ill.

(Getting officially married here refers to that finite amount of time, a few months really, when it was legal in California, then denied by the voters.)

They also lived a full life, one of church and love (they adopted three girls who are now young adults), justice (like trying to access benefits as the widow of a same-sex partner well before DOMA was overturned) and service (Jill is a social worker of many trades, including hospice).

As Linda was in the final stages of the illness that would eventually take her life, she received hospice care.  Nurses and personal care attendants helped with the heavy and emotionally charged work of caring for Linda.

Unbeknownst to Jill, Linda was having conversations with the Casper, the favorite hospice nurse of both.  The conversations went something like this: when I die, I don’t want Jill to be alone.  I give you full permission to work your wonders and if she falls in love with you, marry her.

And thus it came to pass.

Casper and Jill did fall in love.  After an appropriate passage of time, and in conversation with Jill’s girls, and the approval of her wide extended family, they made it “official.”  At the time, this meant a commitment ceremony, for marriage equality had still be stolen by Prop8 and hadn’t yet been made right.

And then things started not going right for Casper.  Memory loss.   Loss of control of her body and the decisions it seemed to make without her.  Then a convoluted and obscured process that led to the diagnosis of Parkinson’s Disease with Lewy Body Dementia.  Not pretty.  Not good.

They married a few weeks ago, after the hospice doctor said to move the date up from December.

ImageJill, who has more energy in one day than I can conjure in a week and more determination in that week than I can conjure in a month, and more name-it-for-what-it-is than I ever conjure, keeps a blog about this experience.  The experience of being a lesbian in the health care system.  The experience of caring for a dying partner.  The experience of being raw and funny and real.  She calls it

Caregiving and Change: Real Life Moments

Living life as a caregiver dealing with Parkinson’s Disease with Lewy Body Dementia as a lesbian couple. Grief and loss requires laughter and reality checks. This is where I talk about them.

and she hopes that you will read it, or pass it on to someone who needs to have their life reflected and affirmed honestly, brutally, lovingly.  It doesn’t matter if you or they are lesbian, or have an partner with a Parkinson’s diagnosis — there’s alot of wisdom and information there.

For instance, she has created a list of things NOT to say to grieving people.  Written from the inside and outside, the list has familiar suggestions written with a gravitas rarely found.

Her story – their story – is not for the faint of heart.  But it is a true love story, a true story of lesbians in love and humans surviving, grieving, and showing up.

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