A Monastic reflects on having Alzheimer’s

The Orthodox Peace Fellowship has a discussion list on which the following was recently shared. Since it relates to what I wrote about how most of us will experience disability at the end of our lives in this world I decided to share it, omitting the names aside from the first initial.

It is a piece of priceless sanctified thinking. Think about it- would you rather die suddenly without reflection concerning your life and stance toward God or experience a disability which gives you time to reflect, especially on how fleeting the “treasures” of our present life are (which include our own human abilities given to us by God)?

Will we say with Job, “The Lord gives, and the Lord takes away; blessed be the Name of the Lord?” Or will we, as the poet Dylan Thomas wrote, “rage against the dying of the light?” (from the poem, Do Not God Gentle Into That Good Night)? Fr. A. shows the way to the never-ending sunrise:

This is a copy of a message I sent to good friends here who were
inquiring about the status of my Alzheimer’s Disease and were
wondering if it is even even appropriate to ask. After I wrote it I
though I would share it with you and a few others, and you may
share it with anyone you think might also be interested. Here is the message, below:

It’s quite all right for you to ask. I am very open about my illness, as is Gerondissa, and we do not hide anything or keep any secrets. And I have very little false pride about my limitations any more–I’ve already been through “that phase” and have been able to embrace my disease in the shadow of the Cross. More than that, I have begun the slow process of climbing up onto the Cross with our Lord, and sharing now
in His Passion. This is incredibly sanctifying; I don’t know how else to describe it. So although I don’t talk much about my illness, it’s not out of secrecy or pride or sensitivity, but only because I am keeping the Lord on the cross as close to my heart as I can. And He will get me through. It has frankly become as much a spiritual experience as a mental one.

So, I want to take this opportunity to share with you and Tim, since we haven’t really talked about it much. I have discussed it on several occasions with Dennis and Justina, and they are wonderfully and appropriately sympathetic and helpful. They are more than relatives; they are good friends. I will talk more about it with my other siblings when we have a family reunion this summer. My children are completely on the same page with me already, but for them it is too painful to talk about much.

This illness is the oddest feeling of being somehow detached and experiencing a slow metamorphosis from being one person into another; not dramatic, but disconnected, and yet still able to pray, read, do email, recognize others (although my short term memory and my malapropisms have gotten worse over the last week). But at the same time it’s oddly not depressing. (I went through the depressingstage last year.) In fact, I woke up this morning with Finn having crawled up and curled into my left arm, and at the same time I had the most intense longing for heaven, which made me very happy.

The neurologist told me some time ago that there is a small
percentage of AD victims who in some way consciously “know,” all the way through, what is happening to them, and he thinks I am one of them. I don’t know if that’s a blessing or not, but I do think it’s a blessing that I can share with others the various stages of this illness as long as possible. That sharing is helpful to me, and perhaps for others if they see that there is a spiritual way to “do” something that is otherwise so awful.

As you and Tim know, Alzheimer’s is a long and slow process, for which reason it’s called “the long goodbye.” But I read Patty Davis’ fine book about her father, President Reagan, “The Long Goodbye,” and she said that he remained cheerful, happy and polite as a three year old, right to the end. And I also know about the Alzheimer’s of some great and holy Elders of our time, who were able to serve Liturgy and say the Jesus Prayer right to the end, even when they nolonger recognized anyone else. So Alzheimer’s doesn’t have to be grueling and ugly, the way it is so often portrayed. I think that the perceived “terribleness” of this disease is at least in part a reflection
of our incredibility morally and spiritually bankrupt culture.

With drugs and medical help, and very good care from Mother
T., I have had three years of relatively slow deterioration,
and I think that “slowness” will continue yet for some years. Right now is a different phase, though. I am very blessed to be in monastic life and here with Mother and the Fathers and Brothers just down the road, who also stay in contact and are very affectionately supportive. I feel safe and well cared for. There are many in my condition who cannot say that. Mother is a good friend, caretaker, intellectual and spiritual companion, but you and Tim will have to help her to harden her heart as time goes on and my symptoms become worse. I have
already spoken to her about this, too. She is very tender-hearted and quietly suffers over my illness, although she’s no drama-queen about it, as you can well believe. That’s not her style. She only quietly says, “I don’t like it,” and that, coming from her, actually says a great deal.

From a purely spiritual standpoint I want to share with you the insight I believe God gave me from the time of my diagnosis. My greatest and overriding sin — indeed, even vice — has always been pride. Pride of mind, of “knowing better” and judging others inappropriately, sometimes thinking of them as being less than I am. This is a most grievous sin, and one that many people don’t even recognize in themselves, but it is the one sin that will, above all, consign us to hell if we don’t overcome it! It was the sin of Satan, the sin of Adam and Eve.

I understand fully how I got this way. I have throughout my life beeninordinately proud of my mind, my intellect, my ability to thinkclearly about difficult and complicated things, to speak and write well, understand, process, and explain difficult things, etc. Growing up, I wasn’t good at sports, I wasn’t attractive to the ladies, I couldn’t dance, I was an intellectual bookworm and loner, I had no other skill than my brain, and I used it and developed it as far as I possibly could, although actually I wasn’t particularly academically brilliant, as all of
that just seemed like some kind of superficial “game” to me. But that was my path in life. And although I have put these gifts to the service of Christ and the Church, as best I could, the pride has still been there.

Now the Lord has offered me a chance to mortify and humble down that pride, by accepting without complaint the slow crumbling of my mind. And I do accept this, with my whole heart, even if with the occasional tear, as a gift from Him for my salvation. So it sometimes “feels” as though this dying of various parts of my mind is also a dying of self, a dying of ego, a dying to pride. And isn’t that the purpose of spiritual life, after all, anyway? The Lord looked down and saw that I wasn’t going to do it any other way, and so, because He loves me very much (unworthy as I am) and wants me to be with Himforever, He offered me this incredible opportunity to die to self. I see
this as a great, if sometimes painful, blessing!

Well, these are my few thoughts about it. Never hesitate to ask mehow I’m doing. I will tell you honestly. But never feel sorry for me,or pity, as I do not for myself, but rather rejoice for me that I am on a sure path to the Kingdom of Heaven. I believe this with all my heart.

– Fr. A

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