Yesterday, the drawers in my old file cabinet locked. We’ve never had a key and never locked it. I enjoy and am used to fixing things around the house, but after two hours of putzing, smashing and removing the old lock, and breaking the thin closet door next to the cabinet, I gave up. Only then did I recognize that the file drawers had never been locked in the first place; I just hadn't noticed the latch! This is one of a number of thing in the past few months that I haven’t been able to do, several times breaking something in the process. It should have, but hadn’t, occurred to me that I would be losing that skill, that joy, too. It’s a disease of constant losses.
In all of this, of course, lies the opportunity for spiritual growth, to find rest and gratitude within the suffering. I’m doing okay with it, I think. I don’t get too frustrated with myself, I don’t blame myself, or feel guilty. I understand that this is just what I’ve been given at this time in my life, and the task (and adventure) is to make peace with it. And to a great degree I seem to be able to … at least for the time being.
As the disease progresses, I keep thinking that I’m going to feel differently, experience myself somehow as a different person. But so far that doesn’t seem to be true. Yes, my limitations are becoming more and more noticeable. Yes, they are affecting my life practically. So I am different, but I am not different … if that makes any sense to you. It seems contrary to the Buddhist notion of “not-self.” I recognize that I’m different intellectually, but the difference doesn’t seem to be in my self. It’s almost as if I’d lost an arm: It’s obviously gone; I can’t do what I used to do, but there’s something within me left unchanged. “Illusion,” I suspect the Buddhists would say. But it is certainly my experience at this point.
My aunt sent me a link to your blog a few weeks ago, and I've been working my way through it. I moved to Delaware in October to help my mother with her Bed & Breakfast. We recognized something was happening to her, and she was diagnosed with early-onset Alzheimer's in February. It's been a difficult time, and I've really enjoyed reading your candid thoughts.
Some of the things I have noticed in helping my mother (who is still very lucid, but has trouble with little tasks like turning on the DVD player) is that it's mostly my own frustrations and issues that make things hard. Like you've been saying (I'm still in January of your blog), we seem to work ourselves up with the fear of the future, when the present actually progresses quite smoothly. Have you ever come across Louise Hay's book "Heal your body"? It is a list of mental thought patterns and the physical ailments that result from them. I've found it to be an incredibly powerful book. The thought pattern causing dementia is "a refusal to look or see" OR "Refusal to deal with the world as it is" OR "A desire to leave the planet. The inability to face life as it is."
The corresponding affirmation to change the thought pattern is: "Everything happens in the right time, space, and sequence. Divine right action is taking place at all times."
The reason I quote Louise Hay is to touch on this phenomenon that you have been experiencing, amidst the frustration and fear: a deeper connection to your community and spiritual growth. When I read Louise's description of the disease, it began to feel like a beautiful gift to my mother. If for whatever reason, she has been unable to face certain things in her life - perhaps living her life as a notion - and not as the blood, sweat, and tears that life inherently is, then Alzheimer's is the deepest gift possible. While Alzheimer's strips people of context, it also brings the person into the present moment - living the moment, in a very real and undeniable sense.
I don't mean to make light of what's happening, as it is very difficult for people going through it, as well as loved ones nearby. But this way of thinking of things brought me a certain peace.
I am inspired by your stories of deeper connection and spiritual growth in light of the disease, and personally I recognize the seed of all the same suffering in myself. I am 29 years old, and very much coming into my power and masculinity for the first time in my life. I feel the attachment to my abilities. I feel how I identify with what I do, and miss the truth of "no-self." Whether or not I develop Alzheimer's, I can feel my own future suffering as my strength and intellect wanes. Therefore, your writing is applicable to all of us. People have described Alzheimer's as the "long goodbye," but it would also seem to be the "long death." In this sense, someone afflicted has the very real gift of being forced to come to grips with their own impermanence. And ultimately, isn't this what we're all doing?
So for me, your exploration and willingness to share is touching on many levels. I look forward to continuing to read your work, and I hope that you do continue to share candidly. Whether or not you are lucid, I have faith that the important messages will come through. Know that many of us are reading.
Hi, Jonathan. These are very helpful comments.Delete
My wife and I are not yet at the place where she has to take care of me, but I’m sure you’re right that it will be her own frustrations and issues that make things hard. (Fortunately, I’m quite sure that she will be able to deal with them better than most).
Did you mean to say that particular “thought patterns” cause Alzheimer’s? I would be very surprised if it’s that simple, but perhaps that’s not what you meant.
You’re certainly right that the disease gives the opportunity for deeper connection to my community and spiritual growth. I have already experienced much of that, even though I am early in the course of my disease. Yes, it’s terribly important to let go of “self”; it’s also not easy, and it’s important to be patient and non-judgmental with ourselves.
Thanks again for writing.