The Grief Continues ... but Differently

Came across this today, a post which was written approximately one year ago, almost two years after Gregory died. It merits re-posting with an addendum.

Knowing Gregory is dead takes many forms. Not necessarily in order of importance:

Reading an earlier post and seeing his name associated with  "Today my love died."

Reading his obituary when it appeared in the Tribune, the Sun Times, and the Windy City TImes (Gay newspaper.)

Seeing the death certificate.

Filling out and signing all the paperwork for his cremation.

Canceling various accounts in his name.

Picturing him in his bed in his room at Lieberman and knowing that the life had left his body.

Dreaming about him, waking up, and remembering that he is dead.

Admiring the plaque on the memorial wall outside the Synagogue Room at Lieberman.

Looking at his portrait on the shelf next to his remains and flashing back to arriving at his room at Lieberman on the day he died.

Hearing someone tell of his death as well as me telling someone of his death.

Rewatching the documentary: ALZHEIMER'S: A Love Story.

Talking about our journey with Alzheimer's at various presentations I have made and getting to the part where after being in a coma for three days, he gave me one last kiss before he died.

Knowing that he was going to die but getting the call from Manny.

Having been on the Alzheimer's path for so long, and changing myself as Gregory changed, I knew intellectually but refused to know emotionally that he would ever really die.

Celebrating without him, the various holidays like Valentine's Day (the most difficult it turns out,) Christmas, Halloween, Birthdays, Anniversaries.

With great love comes great grief, they go hand in hand. But it does get easier and I have done a good job learning to live without Gregory's physicality but still having him be a large part of my every day life!

ADDENDUM:

It has gotten easier, as they said it would but not in any way they or I could have predicted and not in any specified time frame. One never gets over or through grief, one just learns how to live with it, to let it in full force when necessary, to avoid it at all costs when necessary, and mostly to continue to do the best job you can living without being able to share life with the person you loved and continue to love even after their death.

Last night I pictured him in his bed at Lieberman when I went to visit him for the last time and when I returned the next day to see him lying there dead. I cried again which I haven't done for a while. Then I comforted myself by telling him, "Gregory I am glad that you are dead. You have no more problems or difficulties and I have been able to reclaim and get on with my life. I miss you so, but that is OK and I conetinue to love you more than ever."

When continuing my editing of GYROSCOPE: An Alzheimer's Love Story, the working title of my memoirs, I end up re-living the day to day joys and sorrows, gifts and struggles of Gregory's and my journey with Alzheimer's. Some entries are difficult to read, some reinforce the good work we both did in living well with the disease. Some make me laugh, some make me cry.

Preparing for and presenting the documentary to a group brings the journey back to the surface and that causes a deeper level of grief than those times when the only time I really think of Gregory is when I wish him a "Goodnight, I love you." Two extremes and every degree inbetween is part of the continuing grief with which one learns to live.

Another way to look at never getting over or through grief is that it remains the same, you grow and expand so the grief seems smaller and further away. When an important reminder like a holiday or birthday occur, you regress and contract so the grief seems the same as it was in the beginning. And then you are able to grow and expand again.

Realizing that he is with me now more than he was during the 12 year journey with Alzheimer's  is interesting to me. It is as if I am carrying him close not only in my heart but in everything I do, everything I say, everything I witness. He is part of every decision whether major like planning a vacation or minor like deciding what to have for dinner.

The most difficult part of Gregory's dying was the loss the the physicality of our relationship. Even when he was at his worse with dementia, there was a physicality to our day to day interactions: visiting, holding hands, watching "South Pacific," sharing a meal, offering a drink, walking to the park, telling him of my day.

I have been able to create a new physicality. I talk to him often, outloud! I sit by his "shrine or alter," on the bookcase next to his side of the bed, I sound the "singing bowl," I look at his photograph and we have a conversation. I keep a candle electrically burning next to his photograph kind of like an "eternal light." I buy him flowers and dark chocolates to put in his alter, the chocolates I eat later.

By telling Gregory and my love story, showing the documentary ALZHEIMER'S: A Love Story, and fielding Q&A afterwards I keep Gregory alive in my heart and am able to introduce him to new friends. When people can identify with our story and find solice or at least realize they are not alone, Gregory shares in the glory. By telling our story, Gregory and I are are promoting understanding of dementia and Alzheimer's, understanding and respect for same sex couple relationships, and giving others a glimpse of what love can do even in the most difficult of situations. 

As I am writing this I look forward to:

1) An essay to be published in Teepa Snow's Positive Approach to Care's Online Dementia Journal  (ODJ.) It is a free monthly e-newsletter designed for families and professional care partners who are looking to grow their awareness and knowledge in order to provide better care for people living with dementia. There are over 2,000 stubscriber to the journal. 

2) Makeing a presentation to the "Alzheimer's Disease International 33rd World Wide Conference which will take place in Chicago this year. While at the conference, I am looking forward to spending time in person which friends made on facebook from Austrailia, Nigeria, New Zeland, England, and Canada.

3) Doing a presentation at the Evanston Art Center showing the documentar,  talking about film making, and being part of a panel discussion on the importance of art for those diagnosed with Dementia / Alzheimer's. Gregory's art work will be on display at the center as well.

4) Having an essay published in an anthology for caregivers of those with dementia / Alzheimer's. 

5) Having a fourth guest column in Chicago's gay newspaper, "Windy City Times," dealing with aging gracefully!

6) Continued work on my memoirs. 

7) Continued work on "Alzheimer's: The Musical, writing the book and then finding out how to go about the details of creating a musical. 

8) Continued work on "Alzheimer's: The Opera, selecting which of my poems to use for the 12 arias that will make up the opera and then finding out how to go about the details of creating an opera. 

9) Approaching Chicago's gay community center, Center on Halsted, about making a presentation on Dementia/ Alzheimer's.

As I am writing this, so far during 2018, I have previously been able to:

1) Make a presentation using the documetnary to the Pritzker School of Medicine Students. 

2) Do a "one man show" at a local Chicago gay theater "Pride Film and Plays." Approximatly 30 ticket paying patrons were in attendance for the 90 minute experience which again including a brief slide show of Gregory and I arm in arm from when we first met until shortly before he died, a 30 minute presentaiton on how we were able to "Live Well with Alzheimer's," followed by a question / answer session and finished with fellowship over wine and cheese in the lobby. 

3) Help plan and attended the third annual More Than Ever Education Fund Luncheon at the Orington Hilton Hotel in Evanston. Approximatly 150 people attended and we raised over $50,000  to support La Casa Norte's Youth in College Program. The fund was founded in memory of Gregory and helps the primier not-for-profit provide scholarships (and housing) to youth confronting homelessness who otherwise would not be able to get an education with prospects for their brighter future. Over the three years the fund has been in place, we have raised close to $150,000!

So addendum and all, you can see that life does go on after the death of a loved one and in some ways helps those grieving gain a better perspective on the importance of living to the fullest extent during each moment, taking some time to ABSOLUTELY DO NOTHING, and then getting back to doing good works while one still can!

Permanence vs Impermanence

I have been thinking about this one as a part, I guess, of my continuing process of grieving Gregory's death on October 4, 2015. We are coming up on two years. Cannot believe that it feels like a lifetime ago and like yesterday at the same time.

One of Buddhism's tenets is that nothing is permanent. Everything, yes everything, is in transition. You are different people than you were when you went to sleep last night. You will be different people when you go to bed tonight than you were when you woke up this morning.

These differences, at the basic level, are due to sloughing off cells and growing new ones. These differences are based on your experiences as individuals and with others. These differences are because of what you did today, what you saw today, what you heard today, what you said today. These differences are what make life and love interesting and vital and in turn make your relationship interesting and vital.

There will be failures and there will be successes. There will be illnesses and there will be wellnesses. There will be problems and there will be solutions. There will be arguments and there will be making ups. There will be tears and there will be laughter. There will be sorrow and there will be joy.

My wish for you … dear reader ... is that you try to make sure that you change with the changes you will encounter because encounter them you will. My wish for you … see the lessons these changes teach you and the growth you encounter because of these changes. My wish for you … make sure that your love for self and others continues to grow and change,

… and my wish for you … love every day like tomorrow may never arrive!

• • •

Another tenet of Buddhism is that because we try so hard to create permanence, which we can never really do, we suffer. We suffer the changes because as a human being we want to be happy and never sad, we hope to be successful and financially stable and never fail or be poor. We suffer because we blindly hold on to those things which we know we cannot hold. We suffer the day we begin to intellectualize things as a child and realize that we love life but that we will die. Everyone we love will die.

So having been thinking about this, I came to a conclusion? understanding? new way of living and dealing with the fact that Gregory is dead? Easily stated: Go with the changes. They are what they are and the only defense you have is how you think about them and how you react to them.

If you have "good," know that you may loose it but you get "good" back again in ways you might never have imagined. If you have "bad" it will pass also. Be careful not to allow yourself to hold on to "bad" in the name of seeking permanence of any kind. You would be amazed at how many people hold onto "bad" because it is a known entity and they still are trying for permanence (which never can  be achieved.)

My first thought is that Gregory's death is the one thing that is permanent, not always changing. Not being of this physical world any longer, change is not taking place. Some things are permanent for me, like never seeing him again, never kissing him again, never being able to hold his hand. No sharing of thoughts, no discussions, no arguments, no disagreements, no talking about recent adventures.

Yet I realized that in my memories and dreams I am still able to do all of these things and often in my dreams, they are so real I can feel him! I realized that even in death there is constant impermanence. Partly because I now hold Gregory in my heart, my memory, my thoughts ... as I change so does he. 

As my memory of events we shared together are revisited they will change. As I grow to be a new person each day, my relationship to Gregory as I see it will reflect the new person that I become, so there is impermanence there as well.

Also, who is to say that in his new place Gregory is not still changing, learning, progressing towards higher levels of love, compassion, and being?

On a day when I was particularly down (should I say depressed?) dealing with some of the more difficult times during Gregory's (our) journey with Alzheimer's, I had another realization. None of the difficult memories that I have are true anymore because they no longer exist for Gregory (or for me) so why do I allow them to continue to bother me, to add a measure of guilt for not having been better, at bringing me down today?

Holding on to these difficult times memories serve no purpose, do not serve Gregory, and certainly do not serve me. So why hold on to them. Release them and work at only remembering the good, the joy, the what I call "Momentary Monumental Miracles." Remembering the good times during his 12-year journey helps. Towards the end of his illness; instances like Gregory spontaneously telling me he loved me, or thanking me and saying that I am a good person, or our laughing together, or his giving me the last kiss having been in a coma for three days; are the ones I'll hold on to. 

I can tell I am getting better at my grieving if only because I am only rarely OVERWHELMED with sorrow. Most often, I will look at his photograph and say out loud, "Gregory, I love you. What an ordeal we went through! But we made it, you and I, didn't we?"

And he replies, "Yes, we did. And we did it well!" 

Three Quotes

These came across my Facebook yesterday. The first is very comforting, the second is very true, and I believe in the third!

Hiding

Thanks to Sarah for sharing this with me:

"Hiding is a way of staying alive. Hiding is a way of holding ourselves until we are ready to come into the light. Even hiding the truth from ourselves can be a way to come to what we need in our own necessary time. Hiding is one of the brilliant and virtuoso practices of almost every part of the natural world: the protective quiet of an icy northern landscape, the held bud of a future summer rose, the snow bound internal pulse of the hibernating bear.

Hiding is underestimated. We are hidden by life in our mother’s womb until we grow and ready ourselves for our first appearance in the lighted world; to appear too early in that world is to find ourselves with the immediate necessity for outside intensive care.
Hiding done properly is the internal faithful promise for a proper future emergence, as embryos, as children or even as emerging adults in retreat from the names that have caught us and imprisoned us, often in ways where we have been too easily seen and too easily named.

We live in a time of the dissected soul, the immediate disclosure; our thoughts, imaginings and longings exposed to the light too much, too early and too often, our best qualities squeezed too soon into a world already awash with too easily articulated ideas that oppress our sense of self and our sense of others. What is real is almost always to begin with, hidden, and does not want to be understood by the part of our mind that mistakenly thinks it knows what is happening. What is precious inside us does not care to be known by the mind in ways that diminish its presence.

Hiding is an act of freedom from the misunderstanding of others, especially in the enclosing world of oppressive secret government and private entities, attempting to name us, to anticipate us, to leave us with no place to hide and grow in ways unmanaged by a creeping necessity for absolute naming, absolute tracking and absolute control. Hiding is a bid for independence, from others, from mistaken ideas we have about our selves, from an oppressive and mistaken wish to keep us completely safe, completely ministered to, and therefore completely managed.

Hiding is creative, necessary and beautifully subversive of outside interference and control. Hiding leaves life to itself, to become more of itself. Hiding is the radical independence necessary for our emergence into the light of a proper human future."

David Whyte

The Round Blue Oil-Clothed Table

Sitting at the round blue oil-clothed table,

Me by her side on a visit,

She sorts her letters and bills 

And only complains a little.

Sitting at the round blue oil-clothed table

In her daughter’s Texas kitchen,

She lines up her medications

And explains each one by one.

Sitting at the round blue oil-clothed table

On my visit of a few days,

She tells stories of the past

And laughs and cries and laughs.

Sitting at the round blue oil-clothed table

Me back home and family off on their own for dinner,

She eats the egg and cheese sandwich

I showed her how to make in the microwave.

Sitting at the round blue oil-clothed table

She  identifies her next and last bout with pneumonia

And on waking early the next morning

Asks her son-in-law to take her to Emergency.

Mom has since passed, on my birthday in fact,

Gave me birth on the very same day

She continued the next part of her journey

And still she sits, in my thoughts, at the round blue oil-clothed table.