The holidays are upon us, and many in the dementia community (mostly carers and loved ones without dementia) are thinking, posting, and writing only about their suffering. Few will ever reflect on it long enough to realize that all suffering is a direct result of a chosen point of view. Or that at any time, or for any reason (or even for no reason at all), one can simply change their point of view and completely change their experience. This is something I used to teach in life, when I was a spiritual teacher and guide and gave talks and wrote. Now I talk, write, and I guess teach, about dementia.
As I watch people and read their posts, questioning their G-d, of oh why did you do this to us? I think, the G-d I know has reasons well beyond what we can see…and there is always a reason, even if you may not know it…that you have to trust in it, and have faith in it. After all, that is what faith is, right? People talk about the long goodbye like it is a bad thing, and I think how amazing it is that you are given the opportunity to say all the things you wished to say…that you get to be there, and finally BE the husband/wife/sister/brother/son/daughter you wised to be…and what an amazing opportunity to come close and express what I consider the highest form of love, to lovingly give care when one needs care.
I have been the sole carer for my mom for the last decade, all while experiencing sever health issues…and yet, day after day, I climbed those stairs. And although it was the hardest physical thing I have ever done, it was the easiest emotional thing I have done…because, but of course, I love my mom. I care for her with all the love that is within me, and where I run thin, I dig deep into the well within me and find new depths to my love for her. To me, caring for her, is the highest expression of love I have ever experienced…and I wouldn’t trade a second of it for anything. Indeed, I feel very honored to be able to be a part of such a dance of love.
When I was diagnosed with dementia, I went through many emotions and thoughts…but the one I settled on was a spiritual one. Although I subscribe to no one religion, and practice parts of many, I tend towards a more Buddhist nature in point of view. I have walked this earth, I have seen and experienced a great many things, I have enjoyed my time…but all my life this was done with the feeling that I do not want to come back here again. At four years old, when I saw my first merry-go-round, I became overjoyed at finally having a way to tell my parents…I dragged my father over to it, pointing and exclaiming excitedly, “there, there, it is like that dad – who would want to ride this over and over when there are all these other rides.” The merry-go-round was my first words for just how much I did not want to reincarnate again. As a result, I spent my whole life with this in mind…learning my lessons, seeing the higher, more divine nature, and doing what I need to so when the time came I could go.
What came to me as the metaphor of what my dementia diagnosis meant to me, and why I don’t see it at all as all that bad, is the great sand mandalas. Buddhist monks spend days, weeks, maybe even months creating these very fine, intricate, detailed mandalas out of sand they pour from their hands. In much the same way, I have crafted my brain and mind…and with just as much love and pride. If one thing could bind me to reincarnating, it would be my love for my mind and all the wonderful thinks it can think. In the end, however, after crafting these beautiful designs…the monk takes their hand and with one fell swoop, wipes it all away…gone forever. I see dementia as ultimately doing that to my mind.
Buddhists believe that our journey continues in the afterlife. The Tibetan Buddhist believe that we face tests, or bardos, in the afterlife…and depending on how we pass them, determines what happens to them. As a somewhat Christian, I always felt that heaven was never a given…and that there was an onus on us to do something to be able to get in. What is it that they say, “narrow is the path and few who will find it.” I had intended to be one of those people who found it. The message that we had to DO something spoke to me, and still does, and it is not something that I take lightly.
The first bardo, or spiritual test, in Tibetan Buddhism, is to let go of all notion of self and merge back in with everything. To lose self. Only if you did this, would you escape the Wheel of Time and the birth/death cycle. Failing this, you would have to reincarnate, and depending on how you faired with the next tests or bardos, would determine how you reincarnate. I always felt, for me, it would be hard to let go of all I had learned…all I had become…in particular, my mind…oh how I loved my mind, and I dearly wanted to take it with me. For years I have wondered how to let it go. Then came dementia, which will wipe it all away, and like a divine answer to my one true desire (to not have to return), free me to go…taking from me the one thing that would cause me to fail my goal.
So, you see, I can’t be all mad or sad about this diagnosis. To me, it fits right in to the scheme of my life. Indeed, I couldn’t have written a better outcome to my life, if I had been writing my story. My response to my diagnosis, when I had wrapped my head around it, and when I could see this…was to laugh and say, “but of course…how could it have been otherwise?!”
Copyright December 16, 2015, all rights reserved.