This next blog is not my usual perspective. It is personal, but I thought it would give you an idea of where I am coming from.
Wednesday, Just Another Day in My Life
It was Wednesday morning as I was waiting for my cab to come after spending a beautiful night at Amy’s. It was 9:30 in the morning and my mind was still waking up. I was sitting next to her as she ate her breakfast and I took a few bites of the blueberry cream pie we had for dessert the night before.
When the cab arrived, we kissed and I said “I will see you again tonight.” I really felt complete and connected with my heart. I got in the cab and gave the cab driver a coupon as payment for the ride. As the ride began, I closed my eyes and began meditating. Almost instantly, I was reliving the night that just passed.
We had a beautiful sharing about a prayer that happened to bubble up that was “Dear God, take my heart.” I started saying that prayer several months before we talked about it. I was just beginning to understand the beauty of what I was saying. If God took my heart, my mind wouldn’t control my heart. My love would be pure without ego’s control. The past or the future wouldn’t affect what I was feeling in the moment. It would be unconditional and would manifest by the way the wisdom of my body responded to my external world.
As I shared that with Amy, she said “how do I fit in to that?” I told her that was the love I shared with her. That quality of love can’t be shared with just anyone, for it seemed I needed to find that special person, which in Judaism is called your Bashert. Here is a poem I wrote in July, 1995. I feel I have been searching for her all of my life. I have had loving partners in my life, like with Judy for over 16 years. Though we loved each other, we both felt there was something missing. That was the time I struggled with my illness and her love helped both of us to deal with the struggles we faced. Judy was a single mother of two boys and was dealing with a divorce with a very egotistical man. With all the handicaps I was dealing with, she suffered from her struggle more than I did with mine. Our support for each other really was a blessing for both of us.
Here is my 1995 poem which captured what I mean: Poetry was the way I dealt with things I really didn’t understand. This comes from a depth that is deeper than logic and even if it wasn’t a good poem, I creatively grasped what it meant. At the time the poem was created, I hadn’t found her yet, but I couldn’t stop searching. Here it is:
I have a feeling that comes from a depth within,
A long time ago I loved a woman
We said forever and this life is our test.
I think we both have struggles to deal with so trauma erases the past,
And we have to share the moment’s purity together.
My recognition of her is faintly heard,
But once we share the moment together our connection can’t be hidden.
My life has to be a test,
For I strive for purity in everything I do.
My connection to God is in silence,
With a purity free from the thinking mind.
Romantic love demands the same silence,
And I expect the same quality.
I don’t want just a beautiful body,
I want to share my connection to God.
I knew I had a purpose in this life,
And I feel finding my Bashert with a Divine Love
Captures that purpose completely.
I wrote this poem long before I met Amy and though I said I met my bashert a long time ago and I barely could hear her, I think that was in a past life. I said I would love her forever and I feel forever goes far beyond the time we are living in. Somehow, I knew we would both have struggles and I knew it was happening as soon as we shared a moment together.
Now back to my Wednesday memory of Tuesday. When I shared with Amy my symptom list, she remembered the times where I blanked out, as though I fell asleep. When I did, she called me back. It was a nice experience coming back from nothingness into a loving moment, but at the same time I wonder where this black-out time is leading me to. Coming back to a loving moment makes my hassles easier to deal with.
She is going through difficult times with her speech and her thinking, like mine, is affected. Her walk and her ability to stand are becoming harder. Her difficulties actually strengthen our bond, for I feel comfortable as we both struggle with challenges we cannot control. I feel the love that connects me to the essence of my life is the love that entwines our hearts together.
The other day I wondered what our future would be, but I know the love we share today will be there. Our health will be a challenge for both of us, but we will be together till the end, loving each other. We said we can’t imagine living without the other, so I pray the rest of our lives will be a celebration of what we have in the moment. In many ways our life seems to be slowing down, but on the other hand I fantasize exciting times we could share. When I share a fantasy with Amy, we get into it and then realize our health wouldn’t allow that to happen. I still think our fantasies would be possible, so I don’t want to give them up.
Let me share what happened when I moved to Michigan. In 2008, my Mom’s health took a turn for the worse. My Mom and I had a deep, even spiritual relationship. Her love came with an incredible wisdom and it manifested through her as an amazing mother. The beautiful part of our relationship was she was a great mother and also my best friend. So when the threat of death seemed as though death could be around the corner, I left California and my life for over 25 years and went to be with her.
I continue to see Dr. Irani, the MS specialist. In 2014, I began seeing Dr. Adam Marks, a pain management specialist in Palliative Care. From there, I was in Hospice for 3 months and then I returned to Palliative care, a step below Hospice. I get amazing attention from the nurses and the head of the Palliative Care program.
Actually my Mom and I were in Hospice at the same time. After my Mom learned about me being in Hospice, she often said “I hope I die before you.” She was closer to death than I was, but I understood her perspective.
The reason I brought my Mom into the picture as I talked about Amy, was that Amy and I visited my Mom every Saturday for years before she died. Sharing that part of my life with Amy and seeing her and my Mom connect with love, created a strong bond between Amy and me.
Now I want to share about another amazing person in my life. Eeta has been an amazing friend and an incredible care-giver. She understands my health care much better than I do. She takes control of my medicine; she orders it when I run out and sorts the 38 pills I take daily into the 6-hr intervals. She not only takes care of my medicine needs, she helps me with transportation to doctor appointments and joins me in them.
After I tell the doctor my view of what’s happening with me, because I sometimes forget, she fills in what I forgot to share with the doctor. She records and remembers what the doctor recommends. She helps me with more than my medical needs; she does what I need help with around my apartment. There is a special kind of love that happens when you appreciate someone and I feel it with Eeta.
On Tuesday I had a meeting with Dr. Marks to review my symptoms. Eeta and I made a list of 8 symptom’s to talk to him about and before he came, we had 12 symptoms.
We talked about different areas of pain and he adjusted the amount of pain pills I should take. There was a symptom concerning my left eye was going more blind. I also complained about my thinking and the inability to concentrate and follow conversations, or even TV movies. This makes it difficult to be social and interacting with family and friends.
After his meeting I saw the inability to see caused a disequilibrium that affects my concentration. It isn’t easy to really concentrate when you are not used to seeing as good as you did before. I haven’t adapted to not seeing well and it affected my thinking problems. I hope this will change soon, or at least that I adapt to it quickly. I think this is a recurring process; I will get a new symptom and it will take time to adapt to it before it becomes a part of me. Then, unfortunately, it will probably happen again.
I benefit from making a symptom list to go over with my doctor. I feel it organizes my mind and just by stepping back I deal with symptoms better. Another benefit of the list is that it makes it easier to share my problems with the doctor and with other interested people. My symptoms are difficult to deal with, but when they are received with love, it is easier. Thank God, I have a lot of love in my life.