Thursday, May 30, 2013

Marriage: In the Nick of Time

This is where the rubber of relationship meets the road of life.

As the Minnesota legislature was debating the merits of a law that would extend the rights and privileges of marriage to same-sex couples in our state in the early weeks of May, Göran and I were experiencing a painful personal trial. It wasn't something I could talk about at the time, even though the nature of our trial made the debate in the legislature weirdly, intensely relevant to us.

Göran was experiencing a series of distressing health problems that -- we learned early on -- were pointing toward kidney failure.  I've been spending significant time in the past month caring for Göran through intense fevers and flu-like symptoms, running him to labs for blood tests, and running him to doctors for a series of evaluations and consultations.  Yesterday his kidney doctor delivered the verdict.  Yes, his kidney is failing.

Most people can survive the loss of a kidney, because most people come with two, and one is apparently enough to live a long, healthy, normal life on.  But Göran has only one kidney, because the other was removed when he was an infant due to a congenital kidney problem.  So now the clock is ticking.

Unlike me (!) Göran is an intensely private person.  If he had his druthers, we would face this alone with a small circle of family. Last night, we decided to go much more public than that, partly because we realized that this was big, and that we needed the broadest possible support network of friends and family. Already we are overwhelmed and grateful for an outpouring of love and prayers in the last twenty-four hours, and even a number of courageous, loving individuals who have come forward offering to be screened as potential kidney donors.

It takes a village.  Not just to raise a child, but to care for every member of that village.  And every village is made up of a network of relationships: people who care for each other in a variety of ways.  Villages are organized in overlapping concentric circles of immediate family, then friends and extended kin, and then the larger community (the village), and finally the meta-community (the state).

One could even argue that the history of America -- of any nation -- is the history of its villages, its communities.  One of the central story-lines in American history has been about how those bonds of village and kinship have successively been torn apart and broken down by processes of migration and expansion, by war, slavery and displacement; only to be rebuilt in a variety of ways on diverse foundations.  The Mormon part of that American story built its families and villages on the foundations of "eternal family" and "Zion."

Göran has needed me to be there as his primary support and caregiver, and he will need me more than ever in coming months...  Just as I needed to lean on him last year after my bike accident and brain surgery.

I plan to be the first to be screened as a potential kidney donor.  If my kidney is not a match, or if I am not deemed healthy enough to be able to do without a kidney, we will have to turn to family, friend and kinship networks.  If we are unable to identify a suitable donor in those networks, we will have to turn to the national network of deceased donors (typically a 5-year wait, our doctor tells us).

I woke up this morning, thinking, We have a lot of work to do.  I have phone calls to make to begin the process of transplant referral and support.  I'll need to talk to doctors and specialists, and Göran and I have a lot of decisions to make together.

And it occurred to me: What if some of those concentric circles of support, instead of working with us, were working against us? What if doctors and referral networks refused to talk to me, for example, because I could not be recognized as his legal spouse? His first line of defense, his immediate family (me!) would be excluded rather than empowered in the process of helping care for and heal him.

In the anxious weeks we experienced in late April and early May, as we awaited calls from doctors and the results of tests, wondering what it would all mean, I remember watching the Minnesota house and senate debates on same-sex marriage with a special earnestness.

I remember thinking.  Maybe we will be married...  In the nick of time. And the Senate voted, and the Governor signed, and we are married.  Just in time.

Gay Americans and gay families are and have always been a part of the American village.  But many thousands of us won't be married in time.  It's time America fixed that.


Dean said...

I am grateful for Minnesota's decision. I am praying for Goran and you.

Matthew said...

So sorry to hear this news, John. I will keep you both in my prayers.

Beck said...

Thank you for making this "public" and broadening your circle of friends and family to include the village we call this blogging family. As you, I believe in fasting and prayer, and I will be fasting and praying for you both!

Neal said...

Love and prayers for both of you! Are they preparing to put him on dialysis?

I used to work at a dialysis clnic. We had a patient who was an attorney, and he had been on dialysis for 17 years. He did not qualify for a transplant because of other health issues, but he continued to get his treatments every week, and when I left he was alive and well. He brought his laptop with him and reviewed cases and briefs during his treatments.

I offer this little story up with the hope it will brighten your prosepects, should Goran have to wait an extended period of time for a transplant.

M said...

My family has a history of kidney disease and it was a contributing factor to my mother's death. My brother has the same disease and I am currently working to donate to him. Oy - the hoops! Good luck moving forward and finding a donor (hopefully you) and yea for being married and the rights and protections it brings. My prayers are certainly with you and Goran.