Archive for the ‘disabilities’ Category

Yesterday, I had the opportunity to share with my congregation my thoughts regarding Massachusetts’ proposed ballot initiative (known as Question 2) which asks voters whether the Commonwealth shall permit physicians to prescribe a lethal dose of medication to terminally ill individuals who request such assistance.  My perspective on this is deeply personal.

It was in July, 1993 that I got the phone call from my father.  After months of mysterious muscle weakness, stumbling, falling, thinking that it was the result of a fall off a ladder the previous year that had resulted in cervical fractures, he had received a diagnosis of ALS, or Lew Gehrig’s disease.  A death sentence for most people – the question was when, and how.

I was pregnant with Abby.  My mother was overwhelmed with trying to care for my father, and I have no siblings.  Dad asked whether Ben and I could talk to his doctors and find out if they would write a prescription for a lethal dose of medication that would allow him to end his life.  Ben and I talked about it, as I recall for a while, but not for long.  Because we knew we would do what Dad asked.

We got in the car and drove to New Haven, having made appointments with Dad’s primary care physician and neurologist.  We prepared ourselves for a fight.  We had all the arguments at hand about why this was the humane thing to do, the thing that would fulfill the wishes of the person who would never recover from his disease.  We had done our homework:  Rev. Ralph Mero, the Unitarian Universalist minister who had led the effort to pass a death with dignity law in Oregon, had provided us with information on options, given us some talking points, and had offered compassionate, sensible help to us at every step of the way.

We arrived at the doctor’s offices on the Yale campus, and began our meetings.  We were astonished to find no argument coming back from either physician.  Were these my father’s wishes, they asked?  We asserted that they were.  Then yes, of course they would write the prescriptions.

We were stunned that it had not taken an argument, and we were deeply grateful.  Our next visits were with my father’s best friend, an eminent psychiatrist at Yale.  He confirmed that he would be there, with my father and mother, while my father took his last breaths.  Steve Fleck would not fail, we knew, and we were deeply appreciative of his courage and strength.  Finally, we saw my parents’ minister.  She confirmed that she, too, would be there and would support the decision.  We felt that we had a plan.  The prescription was filled at a local pharmacy and picked up.

The last part was administering the medication.  My Dad had lost the ability to feed himself, to move his arms more than a little.  So administering the medication was a real concern.  I didn’t want to ask my mother to do this, and after considering the question, I decided that I was prepared to act.  Helping someone you love to spend the last part of their life in as dignified a manner as possible is high on my list of promises I will keep.  I was ready to drive to New Haven and feed my father the medication.

Abigail Soule was born in the early morning hours of October 5, 1993.  Three weeks later, we brought her to Connecticut to meet her grandfather, so that he could pronounce her ‘perfect’ and be at rest, knowing that this great wheel of life had turned once more.

On October 30, with his breathing growing more difficult as fluid built up in his lungs, my father developed a bladder infection which we had decided we would not treat with antibiotics.  He announced that he was ready for the medication:  life was just not fun anymore, and even his quips and jokes were not enough to keep him going.  Pneumonia set in.  He saw the next door neighbor’s children in their Halloween costumes on October 31 as they came to the house to Trick or Treat, and then, on November 1, he passed, as he had said he would, “quietly into the night.”  As sometimes happens in these situations, fate had intervened before action was required.

In the face of such difficult decisions, our family was lifted up:  by the compassionate physicians who were willing to support my father’s request; by the friend of decades who was willing to stand by; by the minister who – while acknowledging her own belief in the value of life until the last breath is taken – was willing to honor my father’s last wish.  We were lucky.

I hope that Question #2 passes on November 6 — because I don’t want people to have to be lucky about having the nerve to ask the difficult questions we asked, relying on the compassionate physicians, ministers, friends who we were fortunate enough to have, or be left to hope that a family member would have the guts to administer medication to a family member if she or he couldn’t lift up the medication to their lips.  We don’t need luck, we need a law that will help to ensure that people have as good a death as possible.

My father died on All Saints Day, a day of remembrance and celebration honored in different ways in Christian, Celtic and pagan communities. A hymn that we sing in our Unitarian Universalist congregations, “For All the Saints,” says, “Thy name most holy, be forever bless’d,” in speaking of the departed.  I would offer that same praise and blessing for those who have stepped forward, in different times and places, to compassionately help those who we love exit this life in dignity and peace.

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Two weeks ago to the day, I entered New England Baptist Hospital in Boston for a total knee replacement.  My right knee had deteriorated (I have no memory of an injury, but something must have happened) to the point where there was, essentially, no cartilage left; there were plenty of bone spurs and the situation had become painful and pretty much unacceptable. Add to this the fact that Ben and I are planning a once-in-a-lifetime 20th anniversary trip in the fall to Paris and Rome with Ben’s brother and his wife, and you’ve got a knee that needs fixing.

I am an upbeat person, positive and in general, pain-tolerant.  I knew that that procedure might hurt; I knew that it was not going to be a good time.  But I was clear that it was the right thing to do.  And so it happened, at one of the best orthopedic hospitals in the US if not the world, and so far the outcome holds promise.

Over and over, as I moved closer to surgery day, people would ask me if I was nervous.  “Aren’t you concerned?”  “Don’t you worry?” my well-meaning friends would ask.  To all, the answer was the same:  “No.  No worries – just ready to go to the next chapter, to try to make myself whole.”  Send me your good thoughts, I said; your prayers if you pray; but know that I feel held by all of you.

That image, of being held, was the most powerful vision I had, both before the surgery and now.  I could see myself in the center of a clear space, and all around me were people.  Some of them I could identify, some of them were anonymous to me.  But as in the trust exercise that you hear about some youth groups doing, to bond and merge and come together as a group, I, the person in the center, was being held — ever so delicately — by the fingers and hands of all around me.

It was, and is, a beautiful and comforting image…and it is not only imagined.  So many have been there in so many ways that I can not begin to name or thank them all.  One friend, who has had a disability since birth, took me under her wing to tell me what I would need to know about how to successfully use a walker, then crutches, while she ministered to my psyche at the same time.  Another just showed up, repeatedly, with the Frappucinos that are almost the only thing that tastes good.  Still another called many times to check in and immediately produced the heating pad I desperately needed when my back and hamstring muscles went into spasm. And another, too far away to visit and wrestling with her own health challenges, undertook a ‘ministry of get well cards’ that arrived, day after day, to remind me that I was indeed being held by my friends.

And the food…all the people who, whether intimidated by the idea of feeding an experienced cook or not, have showed up, night after night with wonderful meals, made with love.  The “pot of spring” (daffodils) that arrived with another friend, the folks who brought scones and frozen meals for later, the DVD of “Downton Abbey” that arrived to amuse me, the buckwheat-stuffed heart that, when frozen, cools my hot surgical incision.

This, and so much more, has carried me through; reminded me of what community is about; illustrated – in case I needed a reminder — what we offer to one another through good times and certainly through bad.  A former minister of my congregation used to remind us, weekly, “No matter what you are going through in this life, my friends, you are not going through it alone.”  I could not have had a more clear example of what that means than over these last few weeks.

Several suggested to me, as they cared for me, that I had been generous to others and so it was my ‘turn.’  Maybe so.  But when we commit to live in true community with one another, it means that we will show up in whatever way we can.  That’s all I’ve ever tried to do, and it’s what these amazing people are doing for me, right now.

As I wrestle with the pain that will not leave me quite yet, I try to think calm and peaceful thoughts at night as I talk to my body, to tell it to relax into sleep.  And each night, lying next to Ben – who has done so much and continues to do so much to support me — I can almost feel the others around me, gently lifting me up, holding me.  It is a blessing.

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Last week, I performed in a one-night-only show that I couldn’t wait to do.  It’s a show that unites Revels, Inc., the remarkable dance-music-theatre organization that brings the arts and education together in wonderful ways, with the Perkins School for the Blind in Watertown, MA — the school that educated Annie Sullivan and later, Helen Keller.  Revels and Perkins have had a close relationship for eleven years.  That relationship extends to the Revels Music Director, George Emlen, teaching the Perkins students many pieces from the Revels repertoire, focused on the spring, May Day, and (in some years) the sea.  Education director Michelle Roderick has also worked with the students, showing them what a sword dance ‘feels’ like, how May Day is celebrated in the British Isles, and more.

Into this, the Revels Repertory Company performers come (including me), to partner with Perkins students and sing traditional songs including “The Helston Furry,” “The Padstow May Song,” the medieval “Miri it Is,” “Mairi’s Wedding,” and more.  We are accompanied by members of our children’s company, dancing and singing and making merry (miri) through the aisles of the auditorium.  David Coffin, the mainstay of the Christmas Revels productions, is there to play his recorder and lead the audience in several pieces.  But the Perkins students are the real stars of this show.

All of them are blind or partially sighted.  A number have hearing loss or other challenges as well.  They have all worked hard to learn the music for this show, and they are excited to be performing with us.  Carefully we teach our partners how to perform the Circassian Circle Dance, counting out the beats for them and calling the steps.  We narrate what’s happening on stage, what’s coming next in the show, where we have to move, how many steps to walk down to move from stage to floor level.  It takes awareness and sensitivity and skills one doesn’t ordinarily call on to make everything work.

Perkins has existed for over 175 years.  With Samuel Gridley Howe as one of the school’s guiding lights and Charles Dickens as one of its champions, the institution has a remarkable history and offers services that now reach around the globe, serving blind, deaf-blind, and visually challenged individuals.  The Perkins slogan is, “All we see are possibilities.”  When I work with the Perkins students, so many of those possibilities become clear, and they overtake the challenges.  These students are enthusiastic, willing, and excited to be involved with Revels.

Too often we tend to think about individuals with physical or emotional challenges as disabled, lacking the ability to participate.  But in this venture between Revels and Perkins, it becomes clear that the students really are differently abled…and it’s up to us to find the best ways to unlock the potential that’s there.

For me, this is a huge gift, an opportunity to stretch in different ways, share my joy of the performing arts with someone new.  And it’s hard to beat the pleasure of performing in front of an audience of excited Perkins students, faculty, and most of all, parents, weeping with joy as they watch their children doing things they never believed were possible.  More than this, the students themselves find that they can do things they were yearning to attempt.  One student, John Castillo, has an absolutely first-rate baritone voice and is a gifted percussionist.  Another is a smashing violinist.  Still another plays the accordion with great ease and ability.

The Revels partnership, which brings the remarkable directing skills of Artistic Director Patrick Swanson to the Perkins productions along with Emlin’s musical talents, exposes the Perkins students to music and theatre in energizing, thrilling form.

I walked away from the evening grateful for the work of my partner, Marta, and thrilled to have had a chance to work with the Perkins students and faculty members.  And all around, I have to agree that — with this partnership — there’s nothing but possibility for all who helped this one-night-only production get onstage.

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