Thursday, August 27, 2009

Tripping Down the Path of Buried Fears

(Written Sunday August 23, 2009 about 3am)

I am a little over a third of the way through Sherwin Nuland’s book, How We Die. It is a book of compassion and clinical dispassion all at the same time. Even as he describes his friend’s descent into Alzheimer’s disease and the step by step progression of the disease as his friend, in proportionate amounts, digresses, Nuland maintains a clinical distance that allows room for my own grief and fear to surface and fill in the space.

Tears ran down my face unabashedly as I read about his friend and his friend’s wife’s deep love for one another and how occasionally his friend would come to the surface for a few seconds and tell his wife he loves her. My grief and wonder were woven into this man’s very personal story as I remembered an experience that happened during my grandma White’s last years in a nursing home for Alzheimer’s patients: My Aunt Ronnie got a call from the nursing home one day and they said that grandma was missing. They were out looking for her and I think they even had the police looking. Aunt Ronnie went to my grandpa’s house to tell him, and there they were-napping together. He was asleep in his chair and she was asleep in hers. Across the gap, they were holding hands with the romantic music of snoring.

As I read this chapter (which I’m still not done with-I have had to take a break as this subject speaks to my greatest fears) snippets of conversations and personal experiences engulf me: Deb’s dad asking the same question every two minutes; seeing my grandma being fed like a baby (I was ten); listening to my cousin, Tim, a couple of weeks ago as he related the description of his once strong, beautiful independent mother forgetting how to suck on a straw in her last days (Aunt Ronnie, from the earlier story); feeling that my Aunt Annie had been loved so much by her garden that the bees spared her and her family the agony of the quick descent into oblivion that Alzheimer’s was leading her to.

My aunts’ and my mom’s greatest fears were to disintegrate from the brain down, the way their mother did with Alzheimer’s. That fear has become part of my inheritance, even more enveloping than an heirloom quilt. Reading such a clinical description of the various ways that Alzheimer’s first deludes, then destroys, then kills its victims, without even their knowledge, brings out that heirloom quilt yet once again. Today, it wraps me in its folds like the newborn baby that my grandmother became before she died.

There seems to be disagreement as to whether or not Alzheimer’s is genetic, but they really don’t seem to know much about it at all. However, having lost a grandmother and two Aunts to it (Aunt Annie forgot she was allergic to bees, so with their help, the disease killed her). (My paternal grandmother had a different type of dementia as well.) I can’t help but wonder if I, too, will have to face it one day. My chemo-brain experience gave me an in my face reminder of my fears of dying with the fog of dementia. I can’t help but wonder and fear if the future will make me into someone I’ve never wanted to be-angry, frustrated and forgetful. So, each time I forget a word or yell at Deb for some idiotic imagined slight- somewhere in the back of my mind is the fear that maybe my family’s nemesis is lurking in my brain’s DNA and maybe the chemo I had two years ago already set the wheels in motion. Even though I feel like I’m back to “normal”, whatever that means, I can’t help but think about the fact that people with Alzheimer’s don’t know they have it and believe that they are “normal”. The fear is always lurking…

Saturday, August 22, 2009

Healthy Health Care Reform Needed

I keep hearing all over the news and even on the Colbert Report about these “town hall meetings” and how disruptive and destructive they are to the democratic process. My dad went to one in Baltimore to try to make his voice heard. He couldn’t get inside because the venue only holds about 500 people and there were more than that who showed up. My dad, along with 200-300 other people, was outside participating on the periphery. Most of the people that surrounded him were spewing ignorance and lies about rationing and imaginary “death panels” fabricated by conservative pundits in order to scare the American public out of commonsense reforms.

My dad tried to reason with those near him, explaining the difference between the lies generated by the conservative media and the actual proposed healthcare options. They all ignored or talked over the voice of reason. The moment that my dad gave up being that voice in that crowd went something like this, in a paraphrase of his words:

“People were shouting and holding up signs and trying to block any dialogue. One sign that I saw being held up showed a picture of Obama on one side, made up to look like the Joker, and that’s okay, we used to do that kind of stuff with Bush when he was in power. It’s part of the American right to free speech. But on the other side of that sign, there wre no pictures, just the words ‘KILL THE BEAST.’ I saw that and knew there was no reasoning with these people. I left then. I couldn’t sleep for two days after that”

It’s a shame that freedom of speech includes the right to openly campaign for assassination.

On the website called “Standing on the Side of Love”, I read a blog entry of a guy who read about the congressman whose parking space was sprayed with a swastika in a possible attempt to intimidate him into turning his back on supporting meaningful reform in this country. The blogger took a bouquet of flowers to the congressman’s office with a note thanking him for standing on the side of love when faced with threats and anger. It’s a good website, with some loving voices of reason. If you want to read that blog or join with those Standing On the Side of Love, you can click on this link: to find out more.

Since reading that blog, I’ve been trying to think of ways to live up to the accusation that a right wing zealot once made toward me. He accused me, during the Gulf War, of being a “Peace Monger”. I like it. (The other best attempted epithet that I’ve enjoyed as much was “Porcupine Head”, yelled at me by a kid who was mad at me. I had just gotten my hair cut and I had hair glue in it, which did give it a spikey porcupine look and a spikey porcupine feel.)

This week I plan on calling 866-279-5474 to let my representatives know that healthcare reform is essential to keep our country healthy.

In church on Sunday, a doctor friend of mine led the service and had some really good insights into what HealthCare means. It means that the doctor (or the doctor’s representative) needs to take the time to listen and ask questions and motivate and educate their patients. The current system of commercial insurance economics driven medical system is not healthy healthcare. I believe that healthcare reform would help move toward a better system to nurture health, including prevention, research and improved services.

Monday, August 10, 2009

Dancing with Ghosts

This week is a bittersweet one for me. I am sitting here in my living room waiting for my sister to pick me up so that we can go up north for my Aunt Annie's funeral. And, yesterday was the last time I will see my friend, David, at least for a long time. It was his last day as our minister at the Unitarian Universalist Church of Flint, and I will miss his lively energy during services. The sweet part of this week is that on Saturday, I get to go to my newphew, Alfred's wedding!! He is marrying a woman that he has known for many years, and he seems tickled to be marrying a ready-made family.

Aunt Annie had the most incredible gardens. She died from bees who nurtured that garden as much as she did. When I was young, probaly 9 or 10 years old, AuntAnnie was shopping for a pice of land up in the Cross Village area, where so much of our family lives and loves. There was a pice of land surrounded with juniper bushes and grass and wildflowers. When she showed us the land, I thought it was nice, but didn't understand her excitement over it, then she told my mom and I a true story. She said that when she was looking at the land for the first time, she saw a rainbow. Now, I know that there is no end of the rainbow, in a natural science type of world, but there is an end of the rainbow, and she found it. She followed the rainbow and saw it touch down on that land. She figured that she had found her pot of gold. Her son designed and built her a beautiful house, and she has spent the past 30 years nurturing the land, the way it nurtured her. Aunt Annie will be missed by all of us who loved her.

David is leaving to take a position at a church in Baltimore. He has some social contacts there already, so I think it will be a better place for him to be. It had to have been really hard to come to a place where he knew absolutely no one ahead of time. The only contacts he had at first were in the congregation that he served. Walking that fine line between being a minister and being a friend has to be difficult. He did find friends outside the congregation, but I think his heart was still on the East Coast with his family and his history. I can't blame him. Also, I think that there is a lot of healing that needs to take place in our congregation that probably couldn't happen with him there. I will miss singing with him. I will miss his ability to call in spirit even though his theology really is that he has faith in human beings living, loving, working and playing together, transforming the world together to be better for all. He is very aware of his flawed humanity and believes that together, we are each better.

I don't know Krysten, Alfred's bride, very well, but I admire the way she loves him for himself and expects him to be the best person he can be. She knows that he has flaws and expects him to be aware of his flaws and do his best to overcome them. I think that he adores her and her children, and for that, I do too. Alfred is a funny and loving person who has had a much harder life than anyone should have to live. When he entered Mig and Tim's lives, he was only 8 years old, but I think that many had already given up on him. He was one of those kids that the "child protection" system failed, except when one worker met Mig and Tim and realized that Alfred was born to bring them the joy and challange of being parents. She also realized that Mig and Tim had the patience and ability to love unconditionally that a child like Alfred needed and deserved. I am ever grateful that she brought them together because I love Alfred and am so happy that he is in my life. And now, I am looking forward to seeing how he blossoms as a father and a husband.

Also, the tenth anniversary of my mom's death is on Thursday. I'm sure that she and Aunt Annie are laughing together and sending their love out to the rest of us who still walk this Earth in corporeal form. They will dance togeher, with Bud and Uncle Don, at Alfred's wedding.

Tuesday, August 4, 2009


The polls open in 20 minutes and I still don't know who I believe would be best for the next Flint city mayor. Both seem to be in it for the good of the city rather than their own glory.

I'm definitely voting YES on the HURLEY millage. I would pay even more if it meant saving even one person's life. And besides, I really believe that they are the best hospital in the area. Unfortunately, over the years between me and Deb and friends, I've had quite a bit of experience with all three.

Off to do some more research.