On Saturday, December 11 on a cold, misty, snow-covered gray day in the rust belt, a beautiful 30 year old young woman, my niece Elaine, was laid to rest in a private burial ceremony. Three dainty simple sprays of a single white rose and baby’s breath tied with a blue ribbon, her favorite color, were laid on her casket by her father, her mother and her grandmother. The remainder of those present scattered rose petals – roses were her favorite flower – on her coffin.
A Celebration of her life followed.
Her fierce and valiant battle against the liver disease and subsequent cancer had consumed her beautiful body. Despite the ravages wrought by the disease, Elaine left some very special things behind, things we never anticipated could happen.
Elaine left a trail of miracles.
Follow me beneath the fold for the details.
A brief summary of previous events, with links to the prior diaries:
On November 4, with the gracious assistance, guidance and support of Nurse Kelley and Sara R, this initial diary was published explaining the plight of my 30 year old niece Elaine.
For a quick summary, Elaine has suffered from a liver bile duct disease called Primary Sclerosing Colangitis (PSC) for over 8 years. Liver transplantation is the only eventual successful treatment.
When the time came for the liver transplant, cancer was present. She went through the agony of treatment. When the treatment was done, she had surgery to determine that the cancer was entirely gone so she could remain on the liver transplant list. When she was opened up, her gut was still filled with metastasized cancer. Her medical options were gone.
The Dkos community support was overwhelming The November 19 update that reports on the many kindnesses sent Elaine’s way by this loving community is located here.
The unfolding of the miracles:
The reunification Miracle with her biological mother referenced in the previous diary linked above.
The Thanksgiving Miracles
At Thanksgiving, nobody knew what to expect. Everone altered their plans to be present – a couple of the relatives had previously made other arrangements, but canceled them to be present. Would Elaine appear? What do we say? Some of the people sought me out as if I have some sort of wisdom but unfortunately I don’t. All I could say was "lead with love... if we see her. Expect nothing and be grateful for what we get."
As we went through the afternoon, Elaine would come through the room on her way to the garage to smoke, the habit she resumed upon finding out that she was terminal. Her tiny wasted body was even more stark than the picture in the previous diary. We tried to be natural. I just smiled and waved.
She then started coming out more frequently. Occasionally, she would walk up to someone for a brief hug. She invited a few people to sit with her while she was in bed.
My daughter is the maker of that good old stand-by: green bean casserole. Yep, that one, the same old, same old, the one that everybody loves and vegetarians can eat too. That daughter bh bring it was essentially Elaine’s command performance: "I want daughter bh’s green bean casserole" so it was there for her. She asked for a small dab of it for her Thanksgiving dinner. That green bean casserole was most of her meal.
When we were serving up pie, Elaine wanted a bowl of whipped cream. Yes, Auntie bh always brings heavy whipping cream to be whipped into shape for her pecan pies. So, a bowl of whipped cream was in Elaine’s hands in a New York minute. Her dad sat with her in her bedroom while she rested and ate the whipped cream. Soon there were howls of laughter coming out of the room. I went to the room and BIL and Elaine were standing up, laughing heartily. Elaine had pulled the old spoon trick: took a spoon full of the whipped cream and flipped it at her dad. There were impressive splotches of the whipped cream in the hallway, on his clothes, all over the room. It was a mess. It was hilarious. The dog was ecstatic.
Later, Elaine came out and posed for pictures with various people, the most important one being with her dad and step-mom and little brother, another with grandma, another with me and others. I won’t post them. They are private and personal and so very treasured. The way her body looks in these pictures doesn't reveal her strength of character, her will of steel, and her talents: in short, they don’t do her justice.
Then she sat on the sofa and remained with us.
At one point, I was sitting on the floor across the room from her. I mouthed the words "I love you." She mouthed the same thing back to me and we just looked in each other’s eyes. We were saying goodbye.
I later moved to the sofa and sat at her feet, resting my head on the cushion beside her. She stroked my hair the entire time. I let her comfort me, feeling my own helplessness to do anyting to relieve her or heal her.
One of Elaine’s trademarks was that she loved children. As we were preparing to leave, my 2.5 year grandbaby, who is in the middle of "that" training, was resisting having a pull-up placed on him for the trip home; he wanted to wear his underwear like a big boy. So, there was a bit of squawking from the peanut gallery, some fussing and no small amount of furor. That’s when Elaine said, "Put his underwear on over the pull-up." So simple, so elegant, so to the point and the issue was instantly resolved. We didn’t know that she was tuned into the discussion at all; it took place in a location where she could hear but not see what was going on.
The Miracles of the Journey
A few days later, about December 1, the call came: BIL asked, "Can you go get Grandma this weekend and bring her back to your place? We don’t know what’s happening, but it should be soon." Elaine was still at home, but had since let go of Palliative Care options: the only thing remaining for her was a possible life-extending chemo. She bravely determined that she did not want more treatment, not even life-extending. Meds didn’t set well with her, she had horrible side effects and was already dealing with unmanageable pain. Elaine agreed to home Hospice. There was greater flexibility for pain management and more support for the family.
Lest anyone think that the medical community withheld any pain options from her, please lose that thought. Everyone was searching desperately for something that would relieve her, at times, agonizing pain. Everything was tried or at least offered. Elaine figured in that equation, refusing options that included needles, a frustration for all, but Elaine has always had teh Stubborn®™ gene that runs in the family. However, the oral meds were insufficient and she reached the point where she couldn’t keep them down. Other methods of providing pain relief were employed. Managing her pain became a creative effort, with experiments too numerous to mention and likely not medically wise to share.
Now, getting Grandma is no easy feat. First, she, at 89, doesn’t feel like she needs one iota of help despite driving into a ditch on her Thanksgiving trip -- and she's perfectly capable of making that clear, repeatedly, in fact. It also meant driving 250 miles, spending the weekend (we finished frosting her Christmas cookies – one of Elaine’s favorites – and got them all packed up) and coming back in a caravan, with mr bh driving her car and me driving ours. We live in the rust belt, so suffice it to say that weather is always a factor in plans at this time of year.
The day we left, Elaine decided that it was time to move to residential Hospice and she was told she would get the first available bed. We were with Grandma when BIL accompanied Elaine to Hospice the next day.
BIL lives about 90 miles from us. On our trip back, we called at the "fork in the road," the location where we would head either to Elaine or come straight to our home. My guts said "Go to Elaine," with resistance from the others because it would mean driving a hundred miles out of our way, and then returning the almost 100 miles back to our home that same day. Despite teh Stubborn®™ mr bh has learned to trust my instincts so blanking out the protests from Grandma (who doesn’t like uncertainty and being pulled out of her routine), we took off to see Elaine. When I say my "guts told me," I’m serious: I was like a hooked fish being reeled in – I simply had to go and was fully prepared to go by myself.
We saw Elaine. She was somewhat responsive, heavily sedated and her breathing had changed. That’s when we learned that the first thing that Elaine had done the day before when she reached Hospice was insist upon getting up, putting on her bathrobe and going outside for a cigarette! We were there for about 3 hours. She was in and out of apparent awareness, but we assumed she could hear everything. I was rubbing cream into her hands that were so dry; I also got out my traveling kit and brought in some gentle face cream that another aunt rubbed on her face. She protested whenever we stopped. We held up one of Grandma’s cookies for her to smell and it remained on her bed: a star. The three of us drove our two cars back to our home that evening. And waited.
The family began making arrangements, tentatively for Saturday the 11th. BIL was planning on cremation, but Elaine would have none of that. She wanted a casket, no embalming, no display, followed by a celebration. So BIL knew what to do, was working cooperatively with bio mom (a miracle), but the timing was a big open question mark. Everyone was in pain knowing that Elaine was suffering. No one could see how that ravaged body could continue to support her; there had to be a point at which the body would overwhelm the will she had.
People were with her around the clock. One brother and a beloved friend of Elaine’s spent every night, often sleeping together in the same bed. Bio mom would come early; BIL would come for about 14 hours a day.
On Thursday, BIL noticed Elaine’s distinctively changed breathing. As an evangelical Christian, he continued to pray with her and to her. "If it’s time, run – don’t walk -- to Jesus." I understand that is not everyone’s faith approach here; as a UU, it is not my belief system either. But it was a miracle that in that space, Elaine took her final breath holding her father’s praying hands. It was a great comfort to BIL and that’s what counts the most. Yet another miracle.
The Miracle of Mother Nature
Although there was relatively short notice, all the services (burial, hospitality, celebration) were able to be held on Saturday. Actually, it became a necessity because our area was about to be hit by a major winter storm replete with ice and other travel challenges. But Mother Nature gave the skies and the roads a break while we bid farewell to our beloved niece. We were all able to arrive and return safely even if we had to miss some aspects of the day.
The Miracle of You
The gifts of yourselves that you gave Elaine (and me) were wonderful, thoughtful, heartwarming and energizing. The detail of that is in the previous diary. I can’t thank you enough.
Elaine received, either directly from you or through me, pictures, original poetry, items from your own faith tradition, scripture readings, drawings, words of inspiration and other warm thoughts. Some of you have lost or had near losses of your own children and my heart wept with appreciation for your strength at still being able to bring comfort to others. Many of you followed up, either asking how Elaine was doing or telling me that you were still sending cards. There was too much to keep track of and I never saw everything you sent.
Regarding Sara R’s beautiful quilt that was so generously provided by you, it was wisely decided not to wait for a personalized quilt. Sara selected one with Greek crosses on it, a symbol of ancient Christianity. The beautiful quilt is below, bought by your donations. And as much as Elaine loved that quilt, what pleased Elaine the most was that there were sufficient funds remaining to seed another quilt for someone else.
A Kossack sent me a picture of the Greek church where John of Patmos is said to have received from God the inspiration for Revelations.
To emphasize the seredipity – which I consider to be a miracle in and of itself -- of it all, a speaker at Elaine’s service emphasized a certain portion of Revelations (upon which I admittedly still cast a skeptical eye, but also respect as a source of highly dramatic language and the music it has inspired) that captured the beauty of Elaine’s faith. Like pieces of a puzzle coming together to form a whole.
I can’t begin to list the names, handles and contacts to thank you personally or publicly. There was too much. I can say that every gesture, every note, every kindess was passed on and was deeply appreciated by Elaine, her family and me. She even knew some of your names when I didn’t!
The interconnected web, the invisible link among us, was displayed to me in full force as I marveled at the "coincidences."
The Miracles of Compassion, Acceptance and Reconciliation
Despite the many significant items listed in this subtitle, this will unfortunately be a very brief section. Some of the stories are too private, too special, too revealing, too tender, many of them not mine to tell but events I witnessed – and some that I facilitated (kindly note that others also facilitated many wonderful things). They are memories to be cherished and held closely.
Suffice it to say that there was a lot of forgiveness granted. People were reunited after 25 years of fractured relationships and there is hope for more mending in the future. Many of the tears shed were tears of joy and reunification for whatever fractures had taken place in the past.
Another feature was that hearts, minds and homes were opened to GLBT individuals and they were treated like family. That compassion and acceptance is slow in coming to many and I commend my BIL, all the other family members, friends and members of BIL’s faith community for their openness. They, in my words, led with love.
The kindness of everyone was overwhelming. People from BIL’s faith community prepared tons of food and worked ‘round the clock to help. We left the house with people setting up and returned to multiple feasts. And, of course, daughter bh brought two large green bean casseroles in honor of Elaine.
The Miracle of Grace
The way everyone took the news of the inevitable was amazing. We were broken-hearted, gut-punched, shocked, miserable, unhappy and angry. But we could also see that this lovely young woman whose disease stole any opportunity for a normal life that should be led by a young person was being consumed by the cancer. Everyone, including Elaine, adjusted. By grace, I don’t mean every moment was graceful. That didn’t stop harsh words. That didn’t stop Elaine from pulling her hand away from mine in anger when I said something that inadvertently provoked her. That didn’t stop Elaine from yelling, "I’m tired of having things shoved up my ass!!!!" so everyone could hear it. It did mean that Elaine faced her fate full frontal, not without anger, but with acceptance despite the fear and anger. It meant that everyone tried to learn that hunger – precisely, lack thereof – at end-of-life eludes the ill patient and that indeed, food may be more of a problem for the patient. As hard as it was, few people encouraged her to eat. If they did, they endured a bit of Elaine’s wrath. However, if Elaine so much as whispered, hmmm, I wonder what a bagel would taste like, it would be in front of her in a second. Throughout all the trials and tribulations of overwhelming pain, anger, hurt, grief, everyone retained their dignity, their love, their understanding with only momentary lapses. That, to me, is grace, all accomplished from a place of love. As I both watched and participated, I was aware of being surrounded by grace – and I consider grace one of life’s miracles.
We were also graced with the miracle of humor. Yes, in the midst of all this turmoil, hurt, grief, anger and pain, we laughed. We laughed at the frustrating medical maze. We laughed at the nurses' shock and surprise when Elaine went from perfect to prickly every other nanosecond, we laughed as we tried to come up with solutions to unmanageable pain, we laughed at the Catch-22 we were in: there was no winning this game, but some meds weren't available to her "because they might hurt her liver." We were outrageous, off-color, bawdy, politically incorrect. There was too much laughter to repeat and much of it is unprintable. Every one of those laughs blessed us, saved us a tear and kept us going.
The Miracle of Elaine
None of these miracles could have been anticipated. No one would ever have thought that this delightful, demanding, tempestuous, gifted, beautiful, contrarian young woman would be a force for healing, but Elaine was exactly that: as divisive as she could be at times, she was a unifier in her death. It occurred to me as I watched her waste and then looked at the activity of others around me that Elaine’s energy was directed at healing others and making sure that everyone was straightened out before she left. She couldn’t save herself, but she could save others and help make them whole. I think she lingered until she was sure that she succeeded.
When we entered the church for the service, there was beautiful music playing, a lovely voice singing praise hymns. Within about half a second, I realized it was Elaine’s voice. Her biological mother had brought CD’s and was playing music Elaine composed. Elaine accompanied herself on either piano or guitar. We all stopped and broke down. She had, as I mentioned, the voice of an angel and a gift for music, but I didn’t know she had made her own recordings. We are working on getting copies of the CD’s distributed.
The weather forced us to leave after the service and hospitality ended at the church. We drove home through relatively ghastly weather, but we all made it safely. It meant missing dinner with the others at the house and daughter bh’s green bean casserole. So when we got home, I made a green bean casserole, served it up and toasted Elaine. It was all I had for dinner. And it filled me.
In the last diary, I posted a "before" picture of Elaine, the one where she kindly posed with the quilt you provided. She let Uncle bh take the picture out of gratitude for you.
I will now leave you with her "after" picture, as I remember her, holding my 3 week old grandbaby in 2008.
Miracle upon Miracle
In reflecting upon the wonders of this journey that we’ve walked these last 6 months, a song kept coming back to me. It’s called "Holy Now" by Peter Mayer, whose music is well known among UU circles. The song, by my interpretation, reminds us of how so many things are sacred and/or holy – and how we are surrounded by those holy miracles all the time. Admittedly, "sacred" and "holy" aren’t the most common words used on this site, but I couldn’t help but be in awe of the love and generosity of strangers and friends alike. Kindness and compassion are sacred and holy to me; that doesn’t require a belief in a higher power or adherence to any particular faith approach. So much of this journey included walking a sacred, special path and we were lucky to be there. That sacredness was felt by all regardless of our personal beliefs and I thought the song an appropriate blend of Elaine’s and my own faith systems. That miracles occurred has been acknowledged multiple times by BIL and family and I believe they would appreciate this song as well.
So, being a typical Kossack, I looked at YouTube and found a lovely version posted by Connie Barlow, who collaborated with Peter Mayer to create the video. Although permission is granted to organizations to use it in their churches, I wanted to make sure that it would be ok to post it here – always sensitive to copyright. So I wrote to Connie at her web site called The Great Story to ask permission to use it on Sunday. Kindly note that I know neither Peter nor Connie. Connie promptly sent me a message that read, in part:
Peter and I both agree that for memorial services, our wish is to have the video enjoyed as a gift from us... [snip]... And do go ahead and embed it on DailyKos for free. You are giving this song extended life and we thank your for that...[snip]
So, with deep gratitude to Connie Barlow and Peter Mayer, I offer up his song and her video that expresses my awe and awareness of that which is humanly holy. The song expresses what you added to Elaine’s life as well as mine:
Elaine is whole now or scattered to the stars, as your belief system tells you. Wherever she is, she is indeed holy now. And it's a miracle.
I cannot say thank you enough.
With my heartfelt gratitude,
b♥