Washington
DC
I’ve been more emotionally open since my diagnosis of
Alzheimer's, and I like it. I’ve written
about this deeper emotional experience before,
but I continue to be amazed and grateful for this new part of my life.
I am enjoying contact with people more, especially the
brief contacts with people I know well.
I’m physically touching people more, feeling their concern for me,
feeling actively grateful for their friendship.
As an introvert I still don’t like trying to make conversation with
people whom I don’t know (at a party, for instance), but it’s been a bit easier
and more enjoyable.
Frequently the beauty or depth of an experience will
bring tears to my eyes, especially during our Sunday worship services. Our faith community is fairly small, perhaps
forty in attendance every week, so we know each other well. Several mentally challenged people come to our
services as do several with mental illnesses in various stages of control.
Every week, we have communion and members of the
congregation serve one another. Sometimes, when one of these folks offers me
the bread or the juice, I am overwhelmed by profound feelings … of gratitude. Part of it, I think, is the experience of
communion itself, the sense that there is something more than friendship or
acquaintance that binds our community together.
Part of it is the recognition that we—this man or woman who is serving
me communion and I—belong to the same human community. In this moment the barriers that I too often put
between us drop away. Our commonalities
far outweigh our differences. I feel
gratitude that this particular person
and I come together to share something meaningful with each other. And joy wells up within me.
I don’t know quite how to describe this experience of
joy; perhaps, it’s indescribable, but it seems to be physical. It’s as if I’m being broken open to a deeper
reality. I feel tightness rising in my
throat. My face twists up as if to
cry. Tears fill my eyes (but aren’t
enough to spill over onto my cheeks). If
I’m saying the words of communion, I have to stop for a second or two, almost
choking on the words. When I am again
able look back at the person, I often experience a moment of peace and sense of
deep spiritual connection with him or her.
We also have five or six good singers and musicians
who lead the music in the church with creativity and energy. We often sing songs we know well: spirituals,
music that one of the musicians has written, beautiful classic hymns. For one of the songs recently, Connie asked
those who could to sing the descant.
I’ve forgotten the particular song already (no surprise there!), but I
won’t forget the welling up of joy in listening to “angel voices.”
On balance, I’m surprised to find, the increase in emotional
openness more than compensates for the loss of cognitive function. I don’t expect that that will continue as my
impairment gets worse, but for now I’m grateful.
Very beautiful.
ReplyDeleteMy mother has had the same experience with church and faith and the songs that are part of it.
She still responds to a Cross and to a film of a service or hymns with great joy. That has not changed after a decade of illness.
Her soul is responding. She keeps her soul even as her physical brain loses its functions. It just happened yesterday when I gave her dinner in the nursing home.
This is beautiful. I am no longer religious, but the love and community you and various friends of mine obtain in their houses of worship is a wonderful thing. As the message conveyed by John in Revelation says, "Hold fast to that thou hast."
ReplyDeleteMy father could belt out "Eagles Wings" long after he was non-verbal. It was a joy to behold.
ReplyDeleteYour post today resonated as I was reading the book "Super Brain" by Rudy Tanzi & Deepak Chopra. They talk about the effect of reducing our unconscious moments (where emotions are totally in control) to states of awareness ("I am feeling X") and, better yet, self-awareness (where you ask questions about yourself, about how you are feeling). By being mindful of your thoughts and feelings, you start creating new pathways that register not just fear, anger, happiness, and curiosity but all spiritual feelings of bliss, compassion, and wonder."
ReplyDeleteChristine Bryden describes her journey with cognitive loss in "Dancing With Dementia". She says that "each person with dementia is travelling a journey deep into the core of their spirit, away from the complex cognitive outer layer, through the jumble and tangle of emotions created through their life experiences, into the centre of their being, into what truly gives them meaning in life." She calls this "our spiritual heart". For her what really remains throughout the journey is what is really important and what is disappears is what is not important.
We are all helped by being "in community" - being connected to people that we care about greatly and who we know care greatly about us. That can come from a wonderful faith community such as yours or, for me, from my absolutely incredible memory loss support group of the last three years. Cognitive loss is indeed easier to bear when your life is filled with connection and joy.
David, you have created a very large community through this blog: strangers who have poured out their hearts to you and the band of readers who were searching for help in coping with this condition. I feel a desire to hug each of you who write. Each of us has a different style of writing, but the common thread of empathy and love joins us together.
DeleteI am proud to be a member of this fellowship.
Gerrygirl
My husband was diagnosed a year ago this past September. This last year has been like a roller coaster emotionally. I knew for over a year before diagnosis that "something was not right" but due to the fact that he was very good masking or make light of of the situation, he was able to fool people even his PCP. I started going to the doctor with him and with much reluctance the doctor ordered an MRI. The results were not good and came as a surprise to the doctor. My children and I have gone down the path of "I should have known"but we have resolved that as a family . Our goal is to move ahead and make each day count. So grateful I found this blog and posts.
DeleteI don't think that my experiences in church are "religious" in nature. They are, rather, deep connections between me and another person, or me and the beauty of voice and song, or me and the deep support I feel with my community as a whole. They are certainly "religious" in that they reflect the deepest parts of my soul as it touches the profound realities of being human in this amazing earth. But people without any formal religion have access to those same depths, too.
ReplyDeleteI share this analysis of your feelings in church. I have been a Catholic all of my life, and i have been a church organist for 67 of those years. Nothing moves me so profoundly as playing a hymn! I have found myself practicing a stately hymn and crying at the organ console. Music has such tremendous powers. I am indeed a fortunate human being who was blessed in having the ability to bring joy and comfort to others through music. David, you have touched so many souls with this blog and I know I speak for all of us reading this when I say "thank you, kind friend."
DeleteGerrygirl in Louisiana
Amen!!
ReplyDeleteI've been following your blog for many months as my mother, two of her sisters and her brother all died from the complications of this horrid disease. Needless to say, it's always on my mind that I will suffer as they did.
ReplyDeleteBut, my jaw literally dropped and smacked the desktop when I read the part of your post referring to people as "mentally retarded". Sir, that phrase hasn't been used since the '70's, calling a person that is like (and no racist intent)a African American a niger. Personally, I can not recall the last time I ever heard a person, no less a well educated adult to do. Challenged they are but retarded went by the way side after parents stopped putting those children in homes for life.
Shame on you.
I certainly apologize to you and to anyone else who has been offended. No excuses. I have changed the post to reflect your concerns.
DeleteI had a retarded brother who was a hero to me. I know that the world does not use the term any longer, but I was not offended. Why keep hiding from reality? In these days, the term "autistic" is used to describe all mentally challenged people, from the savants to the non verbals.
DeleteI live in Realville and I grew up at a time when retarded was not used. Instead, we used "crippled." The constant stares we received in public were far more hurtful than the words used to describe him.
I wish we had kinder words for the overweight .
I can understand Sande's perspective (although I think her comment could have done without the parting "Shame on you"), and while I didn't find the original usage insulting I appreciate that you've apologized and changed the post accordingly.
DeleteBut as the parent of a developmentally disabled 11-year-old, I wanted to add something about our use of terminology to relate to those with intellectual challenges. Wikipedia has this to say about terms like Mentally Retarded: "The terms used for this condition are subject to a process called the euphemism treadmill. This means that whatever term is chosen for this condition, it eventually becomes perceived as an insult. The terms mental retardation and mentally retarded were invented in the middle of the 20th century to replace the previous set of terms, which were deemed to have become offensive. By the end of the 20th century, these terms themselves have come to be widely seen as disparaging and politically incorrect and in need of replacement. The term intellectual disability or intellectually challenged is now preferred by most advocates in most English-speaking countries."
How sad: this idea that no matter what term we choose to describe those with intellectual disabilities, it will eventually come to be seen as an insult. Unlike those in other groups which are sometimes marginalized, intellectually disabled people can't always claim their own empowering terminology (though some can, of course). So I think, as Sande implies, it's important to use the most respectful terms we have at hand, hoping that society will become more accepting so that those respectful terms don't also become perceived as insults.
David
ReplyDeleteThank you for reading what I stated and taking into consideration the feelings that I expressed. Apology excepted, of course.
Jeannie you are right in regards that no matter what term who chose to use at the moment, someone will find it a insult. Personally, I feel the word retarded just conjures up images of the very worse and not all challenged children or adults have be diagnosed with the "very worse." Some are only mildly challenged and other's you would hardly know by looking at them. When I hear someone use the RETARDED to describe a person it just makes me livid. It might be due to the fact that my 8 year old cousin was left mentally challenged after setting herself on fire and going into shock or that my grandson, now 5, was born with a Chromosome disorder were he has too many of some, missing one and this has left him with issues that will challenge him for life. Retarded to me just screams of that time in years past where all/or most children that were born "retarded" were put away in institutions so as not to be a burden to their parents. I spent 6 months working at such a place back in the '70's. To this day I still can not get out the image that is forever part of me...a aid came walking through the foyer with about 12 adults who were all holding hands. For some reason you think of children but these were 12 adult women in there mid 60's. I was there to pick up my paperwork when this happened and had my 6 month old daughter in her stroller with me. They had never seen a baby...tears were rolling down their faces. Later in the day I discovered that one of the adults was the child of the then famous Art Linkletter. Sorry for getting sidetracked. But you are correct, what is proper today will be a insult tomorrow.
Anonymous...I hear you on that one. I prefer to call myself either endowed or curvy. lol.
My husband Kenny at age 60 was diagnosed with FTD. I am thankful for your blog and other information to help me step into his world so that we can walk through the journey together with me understanding his dementia better. I know he cannot help what is happening, the change, in his behavior so I need to be able to change how I handle issues and myself with him. Thank you so much for sharing your story. God Bless Raedean
ReplyDelete