The Worst Part of Alzheimer's

Last night as I was drifting off to sleep, I was thinking about the worst part of being on the Alzheimer's Journey with Gregory. At first so many visions assaulted my mind that the answer to my own question was one of numbness. The losses? The frustration/confusion? The sorrow/loneliness? The joys/sorrows? The inability to understand, and at times even to know how to understand the trajectory of the disease?

Then, like a flash, the answer/insight came to me: Life. Living. Being alive ... that was and is the worst part of the Alzheimer's Journey. 

"To be alive is to suffer" according to Buddhist understanding. In part we long for something, feel pain and loss in our lives, look for stability and predictability. We want things to always be the same, the good life; but in fact things change and what is ... is ... and it is not always good. 

Our lives are defined by dissatisfaction. We want better and we want good. Those are not bad expectations but it is not possible to hold on to them forever either. So dissatisfaction is how we deal with the reality of being alive. Things change, things are not always good, everything dies. Everyone changes, everyone dies. Dissatisfaction arises out of our own ignorance of our reality, wanting it to be something other than what it is. Our longing, craving, thirsting is what dissatisfies us as does the changing of our reality.

The study of Buddhism tells us that if we are able to sit with our dissatisfaction, look closely at the reality of life, live in the here and now; we can learn to accept this human dilemma and live wholeheartedly in the here and now, in the face of impermanence, knowing that some day we are all going to die, and that is part of life. We can increase our tolerance of instability and change and learn to appreciate today!

We are different people than we were when we went to sleep last night. We will be different people when we go to bed tonight than we were when we woke up this morning. These differences, at the basic level, are due to sloughing off cells and growing new ones. These differences are also based on our experiences as individuals: what was done today, what was seen today, what was heard today, what was said today.

These differences are what make life and love interesting and vital and in turn make relationships interesting and vital. There are failures and there will be successes. There are illnesses and there will be wellnesses. There are problems and there will be solutions. There are arguments and there will be "making ups." There are tears and there will be laughter. There are sorrows and there will be joys.

Even armed with this knowledge, I so still lament not being able to hold on to the physical interactions which Gregory and I used to have. This part of Gregory's death has been the most difficult part for me to let go. I want to kiss his lips, look into his eyes, smell him, tell him in person that I love him. I want to hold his hand, talk with him, share, hear his voice, walk along the beach together. I want to buy things for him, cook dinner for him, get him flowers and dark chocolates.

But those things can only exist now in memories and when I visit those memories, at times, I panic at the finality of these physical interaction losses. I want to hold on to them and not let them go but that is not within my control. Death arrived, in Gregory's case bringing completion and peace for him as well as for me. In my case it also brought deep grief for the change of a deep love, and is a constant reminder that nothing is permanent. Everything changes! The love has not been lost, but is has changed.

I have learned to "be with" Gregory physically in new ways: I talk with him at bedtime. I still bring him flowers and chocolates (which I eventually eat.) I acknowledge him as I pass his photograph which sits with his shrine in the bedroom. I sound a Tibetan Prayer Bowl to say hello. And periodically I dream about him. 

In my heart I celebrate holidays with him. I buy myself little gifts from him (which I used to do with his permission while he was alive.) I tell his stories and I tell our stories. His name lives on with family and friends, at Chicago Children's Museum, in my blogging, in the More Than Ever Education Fund, in the documentary Alzheimer's: A Love Story which has been accepted to over 75 film festivals worldwide and has won over 35 awards including two from the most prestigious American Pavilion of the Cannes Film Festival. 

So to be alive, to live, is to encounter changes including the ones death brings, including the ones Alzheimer's brings. We will all die. That is not a profound statement. We will also live and hopefully learn to accept that everything changes, that the reality is that we cannot hold on to things permanently, hold close for ever anything, except in our memory while we still live, and that is profound.

Living with Alzheimer's teaches that lesson so well and if you do a good job of giving and receiving unqualified love during the journey you will survive. You will suffer but you will survive, until it is your time to move on. 

In some ways the most important part of the story of Gregory's and my life together is what happens between the lines of: Gregory was born. Gregory lived. Michael was born. Michael lived. Gregory and Michael met each other. Gregory and Michael loved each other.  Gregory lived with Alzheimer's. Michael chose to walk the Alzheimer's Path with him. Gregory and Michael continued to live and to love and received many gifts of understanding from each other. Gregory died. Michael grieves but continues to live. Michael will die. 

That is the reality, so why waste time being dissatisfied? You are doing everything correctly. Be forgiving if you back-step knowing you will again move forward. Observe, acknowledge, accept your reality, and get on with the miracle and joy of being alive, no matter what it may bring!

When Stories Begin To Write Themselves at 12:18 AM

This story was motivated by my beginning the reading of Krista Tippit's: Becoming wise: An inquiry into the mystery and art of living, which was a birthday gift from friends Jan and Jerome. (I believe that Tippit's writing is a little more profound than mine but I enjoyed the adventure!)

• • • • •

Even in the bathroom the stories of life unfold and are explained in ways that do not reveal themselves unless looked for or at times asked about.

In that dungeon or that palace, called the bathroom, where we participate in the most basic of bodily functions as well as in fixing the beauty with which we would like to perceive of self, the magical stories of our life can flourish.

We cleanse, purify, and beautify but we also eliminate, pass gas, belch, and at times with illness vomit our insides out.

A look in the mirror can reply, "How beautiful," or "How old and ugly!" We look in the mirror and shift our glaze slightly left, then slightly right until we fix just the image of ourself we want to hold, then leave the mirror behind and carry that image with us, for better or worse,  throughout the day. And this is only one of our stories. But if you look more deeply, even in the bathroom things of your life can tell their stories.

What does the oversized digital clock on the wall over the sink tell me besides the time? Is it reminding me that all things pass, that all things change, and that one day I too will be gone as is my beloved Gregory? Some would say it's just a way of being on time, not keeping someone waiting, not missing an appointment. But that tells a story as well in a different way, doesn't it? 

The $200 Simply Human Magnifying Mirror hanging on the wall next to the large mirror allows me to visit, with accuracy, the pores of my face and attend to them as necessary. It also allows the errant eyelash to be found and washed to safety. Are these activities of vanity or necessity or both. $200? Sounds like an expensive venture, but hell at 72 years of age at least I can see what I'm looking for!

Over the toilet on the wall is yet more of my Asian collection, the majority of which is now at Michael's Museum: A Curious Collection of Tiny Treasures, now a permanent exhibit at Chicago children's museum since 2011.

There are three beautiful framed collages done by an older woman named Jo Nelson. Joe and her husband Bill bring her artwork to Evanston each year to show at the art fair which takes place just outside the front door of my condo.

Her pieces are gorgeous, well constructed of many small things, many of which are not only beautiful but also precious: for example the Mud Jade Buddha that is delicately mounted sitting on a wooden platform which is sawed in half and glued to the center of one of the pieces.

When discussing her art, Jo admits she has never been to China or Japan and has no interest in the people, the country, or the history. She just has been attracted to Asian items since she was a little girl and has amassed a vast trove of wonderful pieces which she enjoys weaving into visual feasts.

Surrounding Jo's artwork, neatly spaced to the left and the right are six smaller black shelves, each holding a multi colored ceramic temple or pagota with tiny ceramic mud people artistically placed sitting next to each one. On two longer black shelves, above and below Jo's pieces, are displayed Foo Dogs, Chinese dragons, an iron incense pot, several Asian sculptures, and a Japanese triptych folding screen with a hand painted scene on silk.

I'm not sure of the story that these items tell, short of their being miniatures. Perhaps it's the beauty and spirituality which is so artistically expressed by the Asian peoples. Perhaps it relates to the Buddhist nature that helps define these cultures and most recently has become part of my life as well. 

Hanging, twirling from the HVAC vent running across the back of the bathroom are two mobile units, purchased at the Chicago Museum of Modern Art, each holding12 postcards. Each post card artistically pictures a male nude, some current day photographs and some from vintage times. The men are beautiful or handsome or ruggedly ugly. Their bodies definitely buff. While they are not behaving sexually they certainly suggest sexuality. I'll let you revisit the story that you most likely know they tell about my life :-)

There are three framed large posters in the tub alcove dealing in order with Joseph Cornell, John Lennon, and Madama Butterfly.

The Joseph Cornell poster is from a show of his work, 1903–1972, which took place at the Menil collection in 1997. The Menil Museum is in Houston where Gregory and I visited on a Texas junket to my family who live in Fort Worth. Joseph Cornell's work, done by this non-artist in his garage workshop in the house where he lived with his mother, creates from found and created scraps, environments that at once are surreal and non-existent as well as familiar. I tried my hand at creating some Cornell type boxes but gave up when I realized that I did not have a garage in which to collect the multitude of bits and pieces that on a moment's notice call would be available to create my masterpieces as they unfolded themselves.

We did not get to see the Cornell show but did visit an installation called, "Witness" which provided a huge display of objects selected from the studios and workshops of famous Surrealist artists which they used as inspirations for their work. In the corner of this exhibit, on a well lit wooden platform, was a glass topped coffee table, the inside of which was reachable through a drawer at the bottom of the table, that belonged to Mrs. Menil in which she dumped hundreds of wonderful objects; new and old, precious and common and which she allowed her grandchildren to use to explore, discover, create, tell stories, and more. It was the motivation and prototype for one of the collections at Michael's Museum called the "Table Treasure Hunt." 

The next poster shows a profile photograph of John Lennon with the words from his song "Imagine." The lyrics of the song are stunning: 

Imagine there's no heaven, it's easy if you try, no hell below us, above us only sky, imagine all the people, living for today. 

Imagine there's no countries, it isn't hard to do, nothing to kill or die for, and no religion to, imagine all the people, living in peace.

You may say I'm a dreamer, but I'm not the only one, I hope someday you'll join us, and the world will live as one. 

Imagine no possessions, I wonder if you can, no need for greed or hunger, only the brotherhood of man, imagine all the people, sharing all the world.

You may say I'm a dreamer, but I'm not the only one, I hope someday you'll join us, and the world will live as one.

The third poster is a show poster from the Lyric Opera of Chicago dated 1982. The opera is Madama Butterfly by Puccini. This poster is particularly important to me as I was not in the first one but was in three of the returning productions over the years. My role was Uncle, which in some productions is a singing role but not this one, but is an important part of Butterfly's family and part of the wedding party with lots of stage time, up front and center!

On the Wall between the tub alcove in the shower is a handcarved wooden plaque from Thailand which contains in 15 individual niches, 15 hand carved Buddha amulets showing seven pairs of seated Buddha's in variation and one individual pose.

Hanging on the mirror back over the sink, above the red ceramic fountain that contains water running constantly as a drinking fountain for my cats, is a banner with a quote from his Holiness the 14th Dalai Lama, entitled "The True Meaning of Life." We are visitors on this planet we are here for 90 or 100 years at the very most during that period, we must try to do something good something useful, with our lives if you contribute to other people's happiness, you will find the true goal, the true meaning of life. No need to tell the importance of the story behind this one!

So even in a room as as mundane as a bathroom, If you look closely, and sometimes ask, there are stories to be told.

The Leaving Ceremony

I have shared this with you before, it is my LEAVING SHRINE. Each day before I leave the condo, I go through this ceremony: I strike each monk’s chime, each singing bowl, and the Japanese gong to summon my spirit guides. I spin the prayer wheel sending good thoughts out to thank the Universe.

Next an inspiration “coin” and an “angel card” (idea from my Guru Corinne) are selected. The pieces of rose quartz are also from Corinne and represent unconditional love, compassion, peace, tenderness, healing, nourishment and comfort.

In various ways I have represented fire, water, earth and sky. You can see jade Buddha presiding in the center of the shrine. Fom his teachings and by learning about meditation, I first found the beginnings of “peace” on my journey with Gregory. 

The two miniature green containers (made by my God Son Isaac while he was in Japan) represent life (the one with the green leaves) and death (the closed container which contains ashes from a burnt note. I plan on putting some of Gregory in there when I get the chance.) 

The wooden box contains hundreds of fish fetishes, carved from shell which represents my “trouble box." When I feel I have troubles which I need help solving, I mindfully place the problems in the box by leaving the top open from a little to a lot depending on their perceived severity. 

Over time the shrine has grown: Added flags, another set of monk’s chimes, several more Buddhas larger and smaller, a larger bronze Ganesha and a smaller jade one, a chime from niece and nephew Mark and Coleen, another singing bowl (not pictured) off to the right which specially calls Gregory’s spirit, Buddha Feet (also from Colleen and Mark,) spices, beach glass, to the left of the jade Buddha is a tiny Gaia (Mother Earth, a gift from my massage therapist Sarah who brought it back from Thailand,) a bronze Buddha head which has four faces: happy, very happy, sad, very sad - turned each day to represent how I am feeling, and a Native American smudge bundle. 

Above the shrine is a painting by Joan, a college chum of Gregory, now my friend also. She calls it HOME or ABODE, I cannot remember which but you get the significance.

I have hung a number of Chinese luck objects from Joan’s painting including dried yellow roses which I brought to Gregory as he was dying and dried red roses from my first Christmas without his physical presence. The chimes in the center a gift from friends Jan and Jake. With them I end the LEAVING ceremony. 

My friends tease me that I have to leave half an hour earlier than usual because of the ceremony ;-) It is worth the extra time :-)

Michael Horvich
mahwww@me.com