“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They will live forever in your broken heart that doesn’t seal back up. “
Anne Lamont
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TO: Friends and Family
Every once in a while I look back in my journal to see what I was thinking and doing one year ago. On my birthday last year, Phyl and I drove to a farm store in Westhampton where she said they made the best whoopie pies! She had a hot dog and a whoopie pie and seemed to enjoy the day. But that evening she broke down in tears, according to my journal, and cried “I hate my body.” She had lost most of her physical abilities by that time and needed help with everything except eating, talking and driving her power chair (and these would all go within the next 6 months). I wrote that I felt helpless. The next day she was up and ready to go again.
Phyl was amazing the way she would continue to bounce back from regular and continuing struggles and defeats. Every time she lost another ability, it hit her hard. We cried together at night and the next morning she was smiling and ready to go again, trying to figure out how to adjust to the most recent loss. She demonstrated a resilient attitude that I didn’t appreciate at the time because I was so worried about “what’s next?” My job was to be prepared for whatever she needed.
Thanksgiving was approaching and I asked her to write a letter to her network of friends and family. It took her hours, since she had little control of her hands. Nevertheless, she wrote in a letter we sent to you all…. “I am grateful for each and every one of you. I’m thankful for the walks around the neighborhood, the prayers, the outings, the problem solving to make situations work for me, the kisses and hugs, the food, the txt, the phone calls, my new bathroom (thanks Dad), the chats on the deck (some serious and some hysterically funny) and the shoulders to cry on.“
She continued…. “There is nothing that comes even close to the joys of being a grandparent! My heart explodes when I’m with them or thinking of them. They are the most precious little unique spirits. Our newest granddaughter, Lucia Tziporah Marine Gerber, was born on Nov 4th. I am so grateful that she is healthy and beautiful and a part of our clan!”
Phyl wanted to be here to watch our grandchildren grow up. She talked about dancing at Noah’s wedding. It hurt to know she would probably not live long enough to see Lucia’s first steps. Nevertheless, she wrote…. “This disease has made me stop and smell the roses! I am thankful for so much in my life, but I am only human. I get overwhelmed at times with anger, sadness and fear.” Her full 2019 Thanksgiving letter is linked here.
After Thanksgiving, she began to lose the ability to type. Her last day off the ventilator for a few hours was Christmas Eve. She got some kind of stomach flu after that night and it sapped her strength so she had to be on the vent pretty much full time, except to eat. We had a wonderful time in Naples, Florida in February, but that was her last big adventure.
Watching her decline during the spring, was really hard. Her friends rallied and kept her entertained on our back deck, (masked and distanced due to COVID) but she lost the ability to communicate and when Sue Marx died, I think she surrendered to the inevitable outcome of the disease.
I’ve shared much of this with you already, but it helps me to remember. Making arrangements for her Celebration of Life in October, organizing for her gravestone (thanks to Uncle Stanley Ebner for paying for it), and making a few videos for our grandchildren is also part of the healing process for me. When I’m doing something for Phyl or our family, I feel a genuine sense of purpose but, its not anywhere near the fulfillment I got from taking care of her.
In two earlier posts, I recorded what I was thinking “after 2 weeks” and then again “after 2 months.” It is now over 5 months since Phyl died and yesterday was my birthday again. Her absence remains a physical presence (it’s hard to explain how something that is missing can feel so present). On good days, I continue to feel a deep sadness. I’ve found that most days I can be aware of the sadness and keep going anyway. Much like when I was caring for her, sadness and joy seem to be able to live side by side.
And then every once in a while I get blindsided by a “bad day”. Its not as crippling as it was at first and I’ve not found myself immobilized by deep and uncontrollable sobbing in a long time, but my heart gets squeezed, my chest gets tight and I feel a mild nausea. If I breathe through the pain, I know from experience that I will “come out the other side.” Some bad days I just have to accept that it is going to hurt, knowing that I’ll likely get up the next day and the worst of it will have lifted.
And then….. I go visit our grandchildren! Noah, Colin, Elena and Lucia bring me such incredible joy. I can’t replace their GG, but I can pay attention to them and get down on the floor to play just as she always did. A few weeks ago, I spent the weekend with Noah and Colin ,so Jake and Shannon could go out for a night and celebrate their wedding anniversary. And this past weekend I was in Rhode Island for my birthday. I love playing with Elena. When we finish one game she says “what are we going to do now, Pop?” Jake and family, Sam and Jeremy all “zoomed” in to sing happy birthday and Belita made my favorite, blueberry pie! I felt very special.
Of course, most days are kind of ordinary. I walk Riley, take care of Phyl’s gardens and flowers and house and attend to my online classes. I finished my fall classes last week and the winter term starts in early December. I’ve got a few work-related activities going and I’m reengaging in some conversations around projects in town. I’m developing a new course for spring which will keep me busy during December and January. It will be online of course. I’m pretty comfortable teaching online, since I’ve been doing it for 10 years or so. It lets me be creative teaching in a different way. I would have been in a lot of trouble if I had retired last year as planned.
I’m working on a new project in our back property. For the past few years, my gardening has taken a back seat to caring for Phyl. Now that I’ve got the time and the big backyard, I’ve been thinking about sharing the space with folks in my neighborhood. I really don’t want to just grow vegetables for me. I hired an ecological design firm to begin to help me create a “Giving Garden” (GG) in the back, for folks walking the neighborhood to stop in, pick blueberries or tomatoes, stroll about, check out the chickens (I have to raise “buck bucks” for Colin), sit for a while and meditate or just chat with each other. Part of the project is to celebrate the history of the land and I’ve done a short study of our backyard which you can see here. I think it will be healing to be able to do something for our friends and neighbors. They surely took care of Phyl and me for the past 3 years!
I’m learning a lot about grieving, as you might expect. It seems that we don’t get to learn much about grieving until we lose someone, as it seems to be a topic we try to avoid. I’ve read lots of books, listened to podcasts, talked with people who have lost a spouse. I joined a GriefShare group by zoom for a while but it wasn’t working for me. They kept telling me that “it is normal to be angry” and okay to be plagued by the question “why did this happen to me?” For whatever reason, these thoughts never came to mind for me. I am deeply sad but I didn’t seem to fit the mold of a grieving spouse, so I quit.
I am getting a lot out of two Kabbalah courses I’m taking online. The Kabbalah is a study of Jewish mysticism, which is fascinating and makes a lot of sense to me. I’ve also been attending, by Zoom of course, the Unitarian Universalist church service in Amherst that Phyl and I went to for a while many years ago. I’m finding that I know quite a few of the folks who attend (or at least they seem to know me).
And I’m learning to live alone. I have my family, work, church, AA friends, and Riley! I miss Phyl more than I can describe but I’m not lonely. A few days ago, I told a friend on a phone call that “I’m glad to be alive” and that was a first! Now…. don’t worry, I was never thinking of doing myself in…. but truthfully, for the past 5 months it was of little concern to me if I lived or didn’t. The emptiness in my typical day was a heavy weight, even when I appeared busy. I could find things to do, but there was little motivation or sense of purpose….. just sort of going through the motions since I figured I should. The days with family were wonderful but most days I’m on my own, as it needs to be. And then I woke up one day with a renewed sense of wanting to be here. Of course, it was gone the next day…. but I think that’s progress!
I’ve lived for the past 51 years with Phyl either by my side or in my thoughts. She was the axis around which our family revolved. And it is a tribute to her love that we are all hanging together, without our “center.” I loved it when Jeremy called and said he’s bringing a chocolate cake to Jake and Phyl’s birthday celebration in October “because Mom would want chocolate cake.” And I’m planning on setting up a Christmas tree (just the way Phyl taught me to do it). Last year she used her light pointer strapped to her head to point out exactly where each ornament should go on the tree. This year, I am going to have to figure it out on my own…. although I’ll talk to her the entire time I’m setting it up.
Phyl is still in my life, but in a new way. I talk to her and tell her what is going on with our family. Of course, she already knows what we’re up to (I promised her before she died that she would be able to “live-stream” all our activities), but it makes me feel closer to tell her about stuff. I know that I’ve got to become more accepting of a very different life than I had with her. It will take time. I don’t know how anyone does this with a God in their life. I’ve written before on “Why I bother with God.”
Jake said to me one time that either we die and there is nothing there, in which case it will not matter, or something really interesting is waiting for us. I choose to believe in a universal or cosmic consciousness, within which we all reside…. the living and those that have moved on. It works for me. There is a lot of resonance among Buddhist thought, the Kabbalah, Christian and Muslim mystics, and my own 12-Step experience. We tend to focus on the differences among these traditions and of course there are many, but I choose to look at what they have in common. In any case, my 20+ year spiritual exploration has helped me cope with a huge “displacement in the force field” of my life.
I quit writing in my journal after Thanksgiving last year and there was a long break until right after New Years Day, as caring for Phyl was becoming a full-time job. I told her often that it was the best job I’ve ever had (and I meant it), although that was pretty selfish on my part as she was suffering. She didn’t have physical pain but the emotional pain caused by her losses was enormous.
Now, I can envision her running and swimming again, surrounded by the consciousness of people who love her. I can see Phyl with her huge smile and infectious laugh. She “live-streams” our entire family all at the same time and loves it when we get together, as we did for her and Jake’s birthday. But I imagine that she gets sad when I’m down. I owe it to her to try as be as resilient as she was throughout her illness. Yes, I get down (“I’m only human” as she wrote) but her legacy is one of the joy of living, and gratitude for all that we have. And she gave me more than 50 years of her love.
So I get up in the morning, have breakfast, pray, meditate, get to an AA meeting on Zoom, take Riley for a walk, and try to be useful to my students, our friends and neighbors if possible, and our family. I don’t know how long I’ll be doing this, but for today…. its a good life. I have one major sadness that’s not going away…. but I can live with that.
It seems this will be the first Thanksgiving our family won’t be together. Jeremy and Sam need to stay in Vermont, and Brian and Belita need to stay in Rhode Island due to COVID restrictions. Jake and Shannon and the two boys will join me in Amherst and we’ll carry on our tradition as best we can. Today I try to be grateful for all that I have rather than worry about what is missing. And as Phyl said in her Thanksgiving letter last year, I have much to be grateful for.
Happy Thanksgiving to you and your families….
Love….
John
Changing the Story 