Gregory Lives in My Grief

Last night before bedtime, while listening to a guided meditation podcast on grief by my guru Corinne Peterson, I arrived at this thought: Gregory lives in my grief. Therefore I will keep it.

At first, this didn't sound right. Shouldn't he live on with thoughts of joy and memories of all the wonderful, loving times we spent arm in arm over the 41 years we were together? 

I can easily pull up the milestones of our relationship which far outnumber the millstones, but somehow when I am thinking about him, he arrives with feelings of grief. This sounds so negative and shouldn't our relationship provide so much more than grief?

With being so isolated during this COVID 19 Pandemic, having chosen to keep to myself in the condo for the last 37 days, going out only a few times (for groceries, to pick up a prescription, and to go to a doctors appointment) I have been missing Gregory even more than usual.

The isolation has provided a quiet, peaceful, still space for me to be with myself. My "voices" are not being as loud and my daily activities are not being as active so as to distract me from my being able to hear and feel who, intrinsically, I am inside. So, I have been thinking about and missing Gregory more than usual.

Who I am inside is the pure, essence of who I am and not necessarily any of the roles or visions I hold for myself. We so often believe we are who others tell us we are or should be, or by making comparisons to others in our life.

From the time we were children, important and powerful people in our lives have been shaping these thoughts and most often they are not true. But as children, we did not realize that we had any power let alone the power to disagree with our parents, grandparents, brothers and sisters, relatives, teachers, religious leaders, neighbors, and even strangers when we heard comments they made about us.

Part of growing up is visible in the "power struggles" we have as tweens, teens, and young adults, with the sources of authority in our life. As adults, we forget about these power struggles, some of them have been successful and others not. As adults, most of us do not conscientiously think about these thoughts about the self we have been handed. What we need to do is begin to triage which thoughts do I no longer believe and therefor chose to toss out, which thoughts do I continue to believe, and which thoughts do I need to reconsider and think about some more?

To become a self-actualized adult, one must thoughtfully triage our ideas about ourselves, especially those based on the opinions of others. Many adults continue to live their lives with the old, often outdated ideas of self and like the child who wasn't even aware of having any power, the adult may not be aware that they have the ability to change the beliefs they have about themselves, again many of which are not true and based on the perceptions of others!

So here I am, thinking about my essence and the "pure me" in relation to why, when I think of Gregory, he "lives in my grief." 

Probably the most important lessons I learned from Gregory in our relationship were 1) respect for each other, 2) the importance of communication, 3) over time negotiating and renegotiating roles and expectations in the relationship, 4) having compassion for each other, others, and self, 5) keeping aware of gratitude for the good that comes our way, 6) while we cannot choose what comes our way, we can choose how we respond to them, and 7) when possible ... choose JOY over SORROW!

These lessons are all so important in the moving forward of successful unions between two people and without them, the relationship is doomed thus accounting for the high percentage of divorce in our society. So many love relationships never get past the passion, lust, and sex that first brought the two people together which is why those relationships fail.

But if you look closely at these lessons, you can see that they are all active, changing, and future pointing. Gregory, now gone from this physical plane, is no longer active, changing, and future pointing, he is static. I am still active, changing, and future pointing!

Yes, I am the sum total of everything I have thought, experienced, witnessed, learned, felt, and more and owe so much to Gregory and to our 41 years together.  We had so many loving, fun, exciting times together but I can no longer be with him, or hold him, or share with him, or talk to him. For sure I cannot bring him back and given the circumstances under which he left, I would not want him to come back in that condition. That would be selfish of me!

So the sorrow of his having lived with Dementia/Alzheimer's for 12 years, and the sorrow of the ordeal for both of us as I walked this path with him, and for the insidious nature of that journey; I grieve at the ordeal of what we went through, at his being gone and at missing him painfully. I continue to love him dearly and he figures into most everything I think about, what I do, and who I am ... but he is gone. He is in the past. I continue on in the present and into the future. 

So where does Gregory exist for me? In my memories and while that is wonderful, and while I am grateful for the time we were together, I grieve his having left and will probably grieve for the rest of my life. That does not mean I am depressed, or that I have given up, or that I am any less of me than when I was with him ... but he is gone ... and I miss him ... and continue to do so almost every moment of every day.

So Gregory lives in my grief and while I will not let the grief control my life, I will not let go of it either!

Life, Death, Grief: An Uplifting Look

Thanks to my friend Jane Alt for this quote from Jack Kornfield:

“Death is a great mystery. It’s wild that we have our personalities and bodies and full lives and families and then, poof, they’re gone. We look for a story and understanding in our lives, but first, we’re faced with the mystery of death. 

What I know from 50 years of meditation and doing hospice work is that we are not just this body. You are made of spirit. And the spirit makes it so that even if people have died, we’re still profoundly connected to them in love. 

In that sense, they haven’t exactly died. They are in us, not only in our hearts but also somehow in our very being. Knowing this does not take the grief away, and it doesn’t take away the power of that grief to shake us to our roots, but it lets us know something bigger than all of that: "Who I am is not just this body. We are consciousness.” 

- Jack Kornfield, NYT magazine, April 11, Things Keep Getting Scarier. He Can Help You Cope.

A Close Look at Grief

It is so hard to get really close to the trauma one has experienced in one’s life. In my case, the trauma I am writing about here, lasted 12 years as I walked the Alzheimer’s Path with my husband, my partner, my lover, my friend, my soulmate, Gregory.

I did a good job of shepherding Gregory though his illness but it was just that, his illness, not mine. That added a little bit of guilt to the story. Fear complicated the story: fear of what he was going through without my really being able to experience it myself or even to understand at times what he was experiencing.

Anticipatory grief played havoc with my mental and emotional well being. What would happen tomorrow? What changes would show up later tonight? Cognitive skills slowly withdrew and then reappeared, sometimes weaker and sometimes not, and then finally they would disappear. Playing my part as a caregiving partner with respect for Gregory was more and more difficult. Maintaining "normalcy" in our life changed often; sometimes daily, sometimes hourly. 

It was a game without rules, or rules which changed on a moment's notice. It was a dance without music or practiced moves. It was a musical with words and melodies, and sets and costumes; which often made no sense.

After Gregory died I fought the memories. I fought the memories of our 12-year journey but also the memories of our 40-year relationship. Good or bad, recalling them was too painful, too traumatic, too akin to panic. It was easier to suppress, distract, avoid, hide, refuse them.  

It was so important to my healing that I eventually let myself walk hand in hand with the memories and the emotions. It was so important to my grief that I spent time with the emotions and welcomed them in as part of me. 

Emotions, I used to think were bad things to be controlled. Through my studies in Buddhism, I discovered that the emotions were part of my classroom, my life classroom. I learned that they were a barometer to how my life was going. I thanked them for arriving, for getting my attention, and asked: “What lessons do you have for me?” 

If I was physically or mentally not up to dealing with the emotions or if their arrival was inconvenient to my daily schedule, I could welcome them and explain why I could not meet with them right then. I promised that I would invite them back when I would spend unrushed time with them. I made sure I did invite them back instead of burying them for too long.

Dealing with the memories, emotions, and lessons learned was not always pleasant. Sometime a warm, satisfied, successful feeling would arrive with them. Often working with the grief of Gregory’s being gone and the loss I felt was overwhelming, painful, and filled with tears. Now and then a tantrum, shouting, or beating my pillow would help.

To sit with the emotions and ride through the storm they brought, would always help me feel better for having done so. The lessons made themselves clear to me and insight was my reward. I was working through my trauma.

I grieved in my own way, I did a little research, I found a book or two that helped. I did not let people tell me how to grieve or for how long to grieve and out of the goodness of their hearts they often tried, some lovingly and some with an attitude of “you have got to move on!” 

Slowly it did get easier as the research, books, and friends said it would. But “easier” is not really the best way to explain it. I now believe that one never gets over GRIEF! One grows larger than the grief and stronger than the grief which makes it easier to carry. 

Gregory became finite: he was no longer alive to grow and change (at least on this plain?) I continued to be infinite: growing, changing, learning, experiencing, pursuing new and exciting adventures in life.

The most difficult part of my grieving Gregory's death and my life was about losing the physicality of our relationship. Not being able to care for him, be there for him, hold his hand, tell him I love him, share our adventures, laugh together, and so much more made me miss him all that much more! 

New ways of having a physical relationship with him were slowly developed. I talk to him every night before bedtime, I ask for his help with important decisions, I created a shrine on the bookshelf which is on his side of the bed. His remains rest in his favorite Grandma Carrie's sewing box which is part of the shrine.

Fresh flowers and candy are always on his shrine shelf (which I eventually eat myself.) I wave at his photograph on the shelf and keep a battery candle flickering 24/7. Presents that are purchased for him while traveling live on his shelf, like the collection of hearts purchased on my travels. Holidays get their turn with a small Christmas tree, a valentine I saved from him to me, a small Easter basket with jelly beans.

I will always grieve my Gregory, there will always be a hole (felt) in my chest until the day I die. I am just “better” at dealing with the grieving! At special times of the year, like holidays and birthdays; or when confronted by certain triggers like a song, a familiar sight, the smell of a certain food cooking; the grief returns in full force and I let it in. 

But because I am stronger and infinite, it is easier to pick up and carry on. I can carry the weight of that grief in ways that I could not do right after Gregory left and not in ways that I could have, had I not let the sorrow, grief, and pain in to sit with me to teach me their lessons.

His Face, Metaphorically Speaking

When young, I couldn't look closely at his face

for fear of him seeing me as I truly was.

When older, I couldn't look closely at his face

for fear of his seeing my wrinkles and my aging.

During Alzheimer's, I couldn't look closely at his face

for fear of his seeing my sorrow.

When he died, I couldn't look closely at his face

for my emotions of never seeing it again.

Now, I look closely at his face whenever I can,

when he comes to me in my dreams. 

Grief: Revisited ... and Revisited ... and

Poetry distills life into its essence,
As we come upon four years.
Since my dear Gregory left
I miss him more than ever.

The writing does not come as often,
Nor as expressive, articulate, or eloquent,
With fewer emotional roller coaster rides,
Taken unexpectedly with him or now without.

I continue to grow and change and expand
While he does not, except in my memories.
So it seems to get easier, but in reality,
It never will be OK or be better.

The circle of my life grows larger
New experiences, places, and people.
The circle of his death seemingly smaller
Remains as powerful as before, as ever.

I miss his touch, his smile, his smell,
I miss living my day to day with him,
My ups and downs, his shifts as well.
Someone with whom to share difficult times.

Laughter peeks it head out now and then,
But no where as much as it used to.
When joy gathers me in its arms
I am overwhelmed at the rare feeling.

The Roller Coaster ride has changed
But there are still ups and downs to weather.
So Gregory, Rest In Eternal Peace and
Michael, do your best to Live In Temporal Peace.

Breathing Room

When I am missing my Gregory and begin to feel overwhelmed at what we went through for twelve years and by my slowly settling grief for almost four years now, I just think to myself, "He got sick and he died." It is as simple as that. For some strange reason thinking this makes more sense than pondering the "why" and "how" of our journey and makes me feel better.

Also, when I think about my own mortality, it makes me feel a little better knowing that Gregory is already on the other side, possibly waiting to support me when my time comes. I do not imagine this in any way that my human mind can invent, so no walking again hand in hand, etc, but still it makes me feel a little better, a little safer, a little more protected.

Not sure where or why these thoughts arrived today but I thought I would give them some breathing room!

Moving On vs Moving Forward with Grief

We don’t MOVE ON from grief. We MOVE FORWARD with it. That which the grief reflects are not moments to leave behind? No! They are still so present that we begin to use the present tense when talking about them. They are indelible and present. We have moved forward to continue living but also with our dead one in tow.

The progress towards a person’s death stays with you. The love stays with you. When you go through years of watching the person you love become less and suffer through it, it stays with you. The final moment when the person you love is no longer there in his body, it stays with you. Forever!

When you finally fall in love with someone who gets you, who sees you and helps you see yourself, it stays with you. Love is so quiet. Love is an invisible thread of calm that connects us even when things are chaotic all around us. 

Even after he is gone, the love stays with you. Certain memories always stay with you; always are sad, always hurt. Certain memories always stay with you; always make you laugh, always make you smile. Grief doesn’t happen in a vacuum, it happens alongside and mixed in with so many other emotions and memories and in the continuation of life. 

As you continue your life, it is like there are alternate universes. Two parallel plot lines. Life and loss for the past, life and loss in the present, and life and loss in the future. They are not opposing forces, they are strands to the same thread. 

Grief and loss may not be the current center of one’s current life. One does not have to close oneself around the loss, one continues to live. But we still talk about the past and our loss; because these are the experiences that make us, mark us; just as much as the joyful ones and just as permanently.

Long after others can see your grief, it continues. Grief is not a moment but rather chronic, lifelong condition. You don’t understand it until you do it. Then you get it! So we need to remember that not all things can be fixed and that all wounds are meant to heal. We need each other to help us remember and to tell our stories. 

So try not to fear talking about grief with someone who is grieving. Maybe all you need to do is listen to their story and/or just hold their hand. If you are the grief-adjacent person vs the grief-stricken person, you will appreciate and understand the importance of being brave enough to listen and to be there when it is your turn, and believe me, your turn will come.

We all die and everyone we love will eventually leave us if we haven't already left them! Live life to its fullest, love others to your fullest, and grieve the changes as you must.

Paraphrased and added to from Nora Mc Inerny at TED Women 2018

Grief, Forever!

I just wanted to clarify after a recent post.
(CLICK HERE TO SEE POST. Opens in a new window.)

Having gotten some new insight into what it is like to live with Dementia/ Alzheimer's, and feeling badly about some of my past behaviors with Gregory because of having not known what I now know, I wrote that, "I will probably grieve until I die."

My niece, who loves me dearly and whom I love dearly in return, send a comment which said, "Heavy.  Grieve forever? ☹️ I hope you can forgive yourself someday.  Greg has."

She and I talked about this on the telephone after I had given it some thought. I thank her for enabling me to write this!

I tried to explain that I have forgiven myself for the most part but when something new comes up, it brings along the next round of grief and therefore the next round of forgiving.

But more importantly, I really do believe that I will grieve Gregory's death for the rest of my life. I will probably love him longer than that if I am correct in my thoughts of the afterlife!

It is NOT like the traditional wedding ceremony says, "Until death do you part." It goes on and on, even after death.

GREAT LOVE brings GREAT GRIEF!

I have previously addressed the idea behind the bland statement, "Grief gets easier." My theory is that because I continue to live (and Gregory does not continue on this physical plane) I continue to grow and become larger in my understanding of life and death. (Not all people are able to do this for themselves!) 

Because I am larger in my understanding of what it means to me to be alive, the grief I carry for Gregory is proportionately smaller! It becomes smaller if only because it is fixed in time and does not continue to grow the way it used to grow when Gregory was alive.

In one way the good times are fixed and get smaller when compared to the continued good times I experience without him. Also the difficult times have ended when every day there were new losses to grieve and to anticipate so they are fixed as well.

Every now and then something triggers a return of grief: a song, a place we visited, a favorite restaurant, a season, holiday, birthday, etc. For a brief period of time (and the time lengths vary with time as well as in intensity) the growth I have made in the past, and "being larger" quickly unravels and I am back to where I was when that memory was fixed in my experience.

Because I no longer exist at that moment, after the brief period of grief's return, I am able to quickly return to my new, larger, current moment in time and continue on. Recognizing the grief and sitting with it helps that brief period of time resolve itself more quickly, sometimes with greater understanding, and allows that memory to continue as either a good one or if a difficult one which has become a better one!

A few other soundbites:

I have learned to carry GRIEF on one shoulder while at the same time carrying JOY on my other shoulder. 

I no longer fear GRIEF, I have learned to sit with it as a FRIEND with a message.

What would it mean about Gregory's and my relationship if there was no GRIEF?

Never tell someone else HOW to GRIEVE or WHEN to stop GRIEVING. 

GRIEF is a very individual activity.

The most you can do to support a loved one with their GRIEF, is to sit there with them quietly. Allow them to TALK if they want to, allow them to CRY if they want to, allow them to REMEMBER if they want to. HUG them if you ask and they agree. You may speak when asked to join the conversation but usually, a conversation about GRIEF is between the person still alive and the person now deceased. 

If you share grief over the same person, it may be part of your conversation as well but you will have to get support when it is your turn. Do not add it "Me too!" to the conversation when it was initiated by the other person first.

When Reality Isn't Real and the Imagined Is

I do my best thinking when I am in bed at night, lights out, heading towards sleep. For me, it is that floating level which quiets the noise, quiets the voices, and allows the inner messages to arrive.

I work at remembering my thoughts which come mainly in fully formed images packed with much information and easily forgotten, by adding text to the mind pictures to help me remember them so I can write about them the next day, as I am doing now.

• • •

Last night I finished reading Aliceheimer's: Alzheimer's Through the Looking Glass by Dana Walrath, a series of short readings about Alice, her mom, on Alice's journey with Alzheimer's. Some of the readings were sad, some uplifting, some insightful, some just were.

Obviously reading the book made me think about Gregory and the many adventures on our 12-year journey with Alzheimer's. The memories are stronger and the grief returns for a holiday visit and at other special times: Christmas, Valentine's Day, Birthdays, etc.

Some of the readings had to do with how Dana handled Alice's hallucination, being lost in time, not remembering losses, verbal repetition, losing parts of identity, etc.

Dana has very good insight into why these lapses occur, what they might mean, and how to handle them during interactions with her mom. I wish I had read her work while Gregory was still here, it would have helped.

I got to thinking that to the person living with Dementia, what they are experiencing is REAL. To us, often, what they are experiencing is the results of the progression of the disease, the breakdown of the brain, the loss of cognitive ability. We forget the person!

To us, they are living in the past, hallucinating, processing differently, etc. We know that what they are experiencing is not REAL but only perceived, we try to keep them safe, to assuage, to convince, to explain, to help them understand, to correct. We forget the person!

To us, their experiences are obviously a bit of "crazy," (sorry for the pejorative but sometimes that is how the behaviors present themselves especially towards the end stages of the disease.)

But back to the person with the diagnosis, WHAT THEY ARE EXPERIENCING IS REAL and no matter what we think, to them it is REAL! How difficult must that be for them? We often do not stop to think about the person diagnosed and what they are going through, we only think about our own attempt at maintaining the situation and "caring" for them.

What triggers a behavior might not be real anymore, but the behavior and the experience are real. When thought of in that way, it feels so painful to me that often there is little we can do except distract, hold a hand, assure, and possibly for a moment or two alleviate the confusion, frustration, fear, pain, etc.

But there is more that can be done. Be creative. One can attempt to understand the NEW trigger and if possible acknowledge it. If she sees dad (long dead,) treat that as though it is real. Ask, "How is he?"

If she sees monsters outside the window when it gets dark out, lower the shades before it gets dark and if you forget, pretend to "disappear" the monsters with a "magic stick" or "monster eradicator" poised as a pencil eraser and certainly "protect her" rather than trying to change her perception. "I am here to save you, Mom," will get you further than "Mom, there is no one out there!"

If she asks the same question over and over again, answer it over and over again. It is the least you can do. XXX wrote down the answer and handed it to her mom. Next time mom asked the same question, XXX referred to the written answer. Repetition of asking slowed down because mom was able to hold the answer in her hand. Be creative!

Be her mother is she thinks you are, let it be right after World War Two if she thinks it is, congratulate her on winning the beauty contest if she thinks she did. Telling a lie is OK sometimes!

Observe her behaviors and see if they might be pointing to other needs like thirst, hunger, needing to go to the bathroom which, for example, might be expressed by talking a lot about ocean voyages or how hot she feels, farms and animals, and stinky situations.

Above all, don't fight it, if it doesn't matter! Pretend that the REAL is real and chances are both you and the person you love will be better able to cope with whatever comes up.

If all you can do is to alleviate the confusion, frustration, fear, pain, etc. for a few moments, at least those few moments were free of confusion, frustration, fear, pain, etc.

So be it!

The Ghost of Christmas Past

Happy Birthday Gregory

July 4 is my Gregory's birthday. He was born in 1948. He passed on October 4, 2015. He would have been 70 years old today. Great love means great grief. One never stops grieving the loss, one just uses the love to grow larger than the grief and learns how to carry the love and grief along with himself. On special days, like holidays and birthdays and death days, one shrinks back to the size one was when the grief struck. But only for a short time, then one begins to grow larger again and more easily carries the love and grief hand in hand, heart in heart, the memory of memories.

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!

A Day at the Beach

A Day at the Beach

With waves that stood still

without you.

With sunshine that dimmed

without you.

Childrens’ calling silent.

Musicians’ Mariachi unheard.

Oh to sit with you to witness

Without needing to use words.

Without even needing to hold hands.

Just to be there with you.

To be able to see, hear, and witness

Fully.

Merry Christmas 2017

Great love brings great grief. Especially at holidays, birthdays, and anniversaries. But it does get better and joy wins over sorrow. This will be my third Christmas without Gregory, I am sad and miss him, but I am OK.

Ghost of Christmas Past

Christmas without Gregory is difficult although most of the time I am able to hold on to the joy we shared for so many (41) years and which I continue to share with his memory and his spirit. Sometimes I just need to sit with my emotions and miss him. 

In the shrine on the shelf with his remains, I keep a picture of him, his favorite Grandma Carrie in whose sewing box he rests, an always-on candle, some of his favorite dark chocolates, and a plant or flowers. For the season I have added a Christmas tree, a gingerbread boy and snowman cookie for each of us, his favorite Walker's Short Bread, and my newer collection of hearts.

The building model is a souvenir from the inn where we stayed in Stowe, Vermont when we had our civil union ceremony. Vermont was the first state to support same-sex unions. It was before the current level of acceptance and only served to protect us if we were residents of Vermont. For us it was more political and romantic! On the day we were united, a rainbow shown in the sky as we drove to the Justice of the Peace.

The Lyrics for Ghost of Christmas Past a song by Elizabeth Chan are playing in the background as I write this. The song makes me sad but in a way that I can handle. Great love brings great grief and great memories, great joy and great sorrow, great loneliness and periodically not just a few tears.

Snow is falling down

Covering the ground

Like a brand new page

For me to tell a story

About another time

Not so long ago 

I thought that I had nothing

When I had it all

When I was worried about what was under the tree

And left me blind to see the gifts in front of me

The years go by so fast

I thought that it would last

But now I'm dancing with the ghost of Christmas past

Tears are falling now

All alone to see

Sad upon a notion

Waves of memory

I wish upon a star

That sits on top my tree

To bring you back again to me

And all I ever want for Christmas is you

What I really want is for you to be here

Cause ohhhh

Silent night lonely night

Years go by so fast

I thought that it would last

But now I'm dancing with the ghost of Christmas past