A dementia lament: Losing my mind, finding my voice
For starters, a sheepish confidence: I know that I would not be awaiting the June 13 publication of MEMORY’S LAST BREATH: FIELD NOTES ON MY DEMENTIA if it weren’t for the “serendipitous” circumstance that I was struck by microvascular disease at the same time that we as a society became aware that “more than 28 million baby boomers will develop Alzheimer’s disease between now and midcentury, and the cost of caring for them will consume nearly 25 percent of Medicare spending in 2040” (Alzheimer’s Association International Conference® 2015). There is no question in my mind that the positive pre-publication reception my book has received has more to do with the fact that I am one of the first dementers diagnosed early enough to be able to write about the experience of losing my mind rather than the excellence of my writing—exquisitely written books get rejected every day because the market is not currently attuned to their ideas or topics, whereas some badly written topical books get published. It is one of life’s ironies, then, that in this my by-the-grace-of-the-Zeitgest book, I feel that, more than ever before, I have “found my voice.”
Woman Writing. Pablo Picasso, 1934.
When I was in graduate school during the first half of the 1990s, not a single writing workshop went by without a discussion about finding one’s voice. Nobody gave a definition of what the term meant, but, like great art, “you know it when you see it.” Lately definitions of “voice” abound in areas beyond the teaching of writing:
- music: “cover bands don’t change the world—you need to find your unique voice if you want to thrive” AccidentalCreative)
- self-improvement: “One word expresses the pathway to greatness: voice. Those on this path find their voice and inspire others to find theirs. The rest never do” (Stephen R Covey)
- psychology: e.g., Dorothy Cantor‘s book, “Finding Your Voice: A Woman’s Guide to Using Self-Talk for Fulfilling Relationships, Work, and Life.”
In relation to my writing in MEMORY’S LAST BREATH: FIELD NOTES ON MY DEMENTIA, this definition by Cris Freese comes closest my sense of having found my voice: “By voice, I think they mean not only a unique way of putting words together…but a distinctive way of looking at the world…. They want to read an author who is like no other….A voice….Your voice is your self in the story.”
Before I talk about the irony of me having gained a public voice through losing my mind—and writing about it—look with me at a time when women, particularly writers, were first trying to finding a voice in modern times. In the 19th century, writers—women as well as men— frequently employed “madness” as a trope for women too “wild” to function in their patriarchal society; not surprisingly, these madwomen were villains. In Charlotte Bronte’s Jane Eyre, for example, Bertha Rochester, the mad wife whom Mr. Rochester hides in the attic, is the villainous counterpoint to Jane’s “polite” rebellion. This post’s main picture is a painting, Bertha Rochester, by Lezley Saar from her exhibition Madwoman in the Attic: The Female Gothic in 19th Century Literature.
Opening night at Lezley Saar’s Madwoman in the Attic exhibit. Pinterest
The exhibition refers to a 2000 feminist analysis of 19th century woman writers by two English professors, Sandra Gilbert and Susan Gubar, titled The Madwoman in the Attic: The Woman Writer and the Nineteenth-Century Literary Imagination. In a chapter called “The Spectral Selves of Charlotte Brontë, Gilbert and Gubar describe Jane Eyer as “a distinctively female story of enclosure and escape, with a ‘morbidly vivid’ escape dream acted out by an apparently ‘gothic’ lunatic who functions as the more sedate heroine’s double.” This doubling is illustrated in the events that flow from Jane’s discovery, on her wedding day, that Rochester is already married to the “lunatic” Bertha. In a private moment of shock and grief, she projects her anger toward Rochester onto herself. “You shall tear yourself away, none shall help you: you shall yourself pluck out your right eye; yourself cut off your right hand: your heart shall be the victim, and you the priest to transfix it.” In a twist worthy of a soap opera, “Jane’s disguised hostility to Rochester, summarized in her terrifying prediction to herself [about plucking out her eye and cutting off her hand] comes strangely true through the intervention of Bertha, whose [pyromania] causes Rochester to lose both eye and hand.” Through Bertha’s death and Rochester’s maiming in the fire, Jane finally achieves a happy ending: “Reader, I married him.” This is not the usual happily-ever-after of 19th century marriage, though: Rochester’s disabilities and Jane’s parallel empowerment make them equals in their marriage. To paraphrase Paul Simon’s song title, Mr. Rochester’s floor is Jane Eyre’s ceiling.
Jane Eyre and Mr. Rochester by Jafean on DeviantArt. The text of Jafean’s sketch comes from Chapter 27 of the novel: J: “Then I must go:—you have said it yourself.” R: “No: you must stay! I swear it—and the oath shall be kept.” J: “I tell you I must go! Do you think I can stay to become nothing to you? Do you think I am an automaton?—a machine without feelings? and can bear to have my morsel of bread snatched from my lips, and my drop of living water dashed from my cup? Do you think, because I am poor, obscure, plain, and little, I am soulless and heartless? You think wrong!—I have as much soul as you,—and full as much heart! “
The story of my own madness, too, features a floor/ceiling scenario: as my mind is being cut down to size, Doña Quixote is having a field day. A few days ago, I was in the middle of changing my clothes when I had an idea related to something I was writing. Accustomed as I am to my thoughts disappearing unless I write them down, I hastened to my study to write myself a note. The note led to more ideas, and I happily made hay by the shine of the lightbulb in my head. That is, until a chuckle and a camera flash brought me back to reality. I realized I was freezing. Peter’s photo shows why.
Doña Quixote’s “Ecstatic Mania.” Lezley Saar’s “Religious Melancholia.”
My diagnosis, even before my book, brought me opportunities to find my voice in a different medium—or rather, media—as “in the media”: the invitations to participate in the VideoWest short films as well as TV interviews—ranging from the BBC to the Huffington Post—were extended after my essay, Telling Who I Am: My Dementia was published, but before I even had a completed draft of my manuscript. Now that the manuscript has been transformed into a book, additional opportunities have arisen, most recently the chance to record a small portion of the audiobook that will come out on the same day as the hardcover and e-book—Hachette asked me to record the dedication, “Author’s Note,” and “Acknowledgements” in my own voice for the audio book. An actor familiar with the South African English accent, Edita Brychta, is the voice of the bulk of my book. (More about the lovely Edita in a future post.)
Edita’s first day in the recording booth for MEMORY’S LAST BREATH. Photo: Edita Brychta, personal communication. Edita recorded the audio in a Los Angeles sound studio.
The day before my recording date in Salt Lake City, I felt that I was starting a cold. On the appointed day, I woke up with a runny nose, my voice a little bit hoarse. Peter undertook to drop me downtown at 9 am. I persuaded him to just drop me at the building entrance where the studio was located, so that he did not have to park the car and walk with me. He would find parking just around the corner at a coffee shop where we had been before. I would call him once I was done—he was very particular about not walking around the corner to find him, because the studio is in a part of town near the homeless shelter, which is not a safe area. I impatiently listened out his cautions and made my promises, and waved him off. What could possibly go wrong when I was right at the entrance and just had to go through the front door?
Everything was fine until I actually reached the door. It was locked. I thought I might just be a minute or so early, so I just stood there, looking around. That’s when I saw the key pad with the names of the businesses in the building. I read the instructions, then scrolled through the alphabet for Metcom Studios. So far, so good. I found the number to punch in. I started punching. When I was done, nothing happened: no click to indicate that the door had opened, no voice checking my name. I read the instructions again, tried again. Five times.
“You shall tear yourself away, none shall help you: you shall yourself pluck out your right eye; yourself cut off your right hand: your heart shall be the victim, and you the priest to transfix it.” Image credit: Drager’s woodcut, Birth in Jail. (The Village Voice.)
I thought about calling Peter, but I so much wanted not to interrupt him, since he had probably just taken a sip of his hot coffee. I had to figure out something myself. I remembered that I had a piece of paper with the address and studio name on it. I checked to see I was in the right place. I was. Then I noticed a phone number for the studio. I dialed it into my cell phone. Nothing. My fingers had turned into Doña Quixote’s bony digits that could do nothing right. I tried again. This time the audio engineer answered. I explained that I could not get in, and he kindly gave me the 5-digit code and told me to type it in. I can of course not remember 5 digits long enough to type them in, which I explained. With great patience he read out the digits one by one and I typed them in. Still no success. In the end he came down three floors and got me from my de-basement.
Once in the sound booth, things looked up. I had a horrible cough, but fortunately they can cut that out, particularly if I can hold it to the end of a sentence. The recording was done in record time. They told me it went great. It had better—I’d prepared for it for three days! I was so grateful that both my head and my voice worked together as in the old days. As for Doña Quixote, if her eye sockets were not already hollow caves, I would have plucked out her eyes myself.
By the time I sat down in the coffee shop with Peter to get my latte reward, my voice was very hoarse. But I did squeak out the story of how the connection between my head and my hands were broken.
The next morning my voice was totally gone. It stayed away for a week. Now it’s back:
Artist Paul Matosic’s installation of found objects and items from the museum archaeology collection at Derby Museum and Art Gallery. The design reproduces a map of part of Derby city centre (UK) on the gallery floor.
May 10, 2017 @ 7:11 am
May 11, 2017 @ 5:25 pm
Thanks so much, Carrie. It means so much to me that you like my writing and that it means something to you. I really appreciate your loyal support! All the best to you and yours.
May 10, 2017 @ 12:36 pm
I love the images you put in this post. They are so vivid and provocative. It must have been a terribly lonely feeling to be standing before that locked door and struggling with a cold on top of it all to find a way to get in. Congratulations for persevering and thank you so much for sharing.
I haven’t yet ordered a copy of your book. Is there any way that you can organize an autographed copy?
May 11, 2017 @ 5:31 pm
Hello Ingrid, so nice to hear from you. Thanks so much for your generous comments on the post. I, too, love art images–they really excite me visually and conceptually. I like sharing my stories–it helps me work through my issues. I have to thank YOU for reading my writing and expressing the fact that it gives you pleasure.
I’m trying to think how I can organize a signed copy of my book. Maybe you could order one and have it delivered to my house, and then I can sign it and mail it?
About Edith–I have not had time to write the post about her. It’s next on my list for when I have a gap between book stuff.
So good t be in touch!
Marietta van Rooyen
May 10, 2017 @ 10:36 pm
Liewe Gerda ek weet ek moet eintlik in Engels skryf maar ek voel ek moet in Afrikaans met jou praat. Hierdie blog is so goed geskryf dat dit n kunswek insigself is! Ek kan nie wag om jou boek te lees nie. Jy is ‘n inspirasie vir baie.
May 11, 2017 @ 8:44 pm
Liewe Marietta, dis vir my so lekker om in Afrikaans te gesels. Baie dankie vir die waardering wat jy uispreek oor my blog. Ek is bly jy dink dit werk goed as ‘n stuk–party dae kry ek dit nog reg om die paragrawe meningsvol te organiseer, partykeer nie. Ek weet nog nie hoe my boek in SA bemark gaan word nie, maar ek dink die e-boek en Audio sal seker beskikbaar wees. Ek is so lus om met ‘n tas vol boeke te kom en een vir elke liewe mens te gee! Mis jou so noudat ons “die oues van dae” is soos my Pa gese het toe sy ouers dood is–ons het reeds toe ons jonk was so wonderlik diep gesels, en nou weet ons soveel meer van die lewe! Baie liefde vir jou en Basil en julle kinders–ek sal weer op Faceboek bietjie opvang met julle lewe. xoxox
Ingrid E Schmidt
May 12, 2017 @ 7:10 am
Afrikaans is soo lekker!
May 14, 2017 @ 8:30 pm
The work “lekker” says it all!
May 17, 2017 @ 1:05 pm
Dear Dear Gerda — well-chosen wife of my brother Peter.
Ria and I are overjoyed by the success of your book and the incredible positive reaction. Your purpose was to inform people about dementia and prepare/assist them.
Obviously your success has been remarkable.
Dear brother Peter, very well done with your successes in providing Gerda with the environment in which she could operate. Your life too has been a hard-won success story.
Intelligent, energetic and with a great sense of humour Gerda could not have had a better “partner” in her
And the amended lyrics of an appropriate song for both of you come to mind:
“Oh lord it’s hard to be perfect when you’re humble in every way.”
Much love to both of you and your lovely family.
May 29, 2017 @ 10:17 am
As a member of the “Best-even-though-incompetent-effort means never having to say you’re sorry CLUB,” I notice that I have not even made the effort to respond to this comment of yours which gives me so much pleasure and joy. What would life’s excitements be if one did not have loving family like you and Ria to share them with? Thanks so much for always being happy for our successes and supportive in our downfalls. The hero in my story is of course Peter, who is a saint and ever-patient, putting the kabosh on Ma Raaitjie’s warning to me before we got married that “Peter has a little temper.” That “little temper” has now totally disappeared, with only great love and patience in its place. Love you and Ria and your family so much–you are ever in our thoughts. Lots and lots of love.
September 26, 2017 @ 6:50 am
I am currently reading your book “Memory’s Last Breath” and am blown away by your courage to face the realities of your life. My mom had dementia and it is a concern in my own life as I age, I am now 70. I am also reading “The End Of Alzheimer’s” by Dale E. Bredesen, MD in hopes of gaining information about the possibility of help for dementia sufferers.
Again thank you for your honesty and courage.
September 28, 2017 @ 11:51 am
Hello Lila, Thanks so much for your kind words about my book. As for courage, I really do not feel courageous–just thankful for my family’s support, and that of people who read my book. I’m sure you must have learned a lot from your mom’s dementia journey–as I have learned from my mom. I think the best is just to live from day to day and enjoy the wonders that our world still offers me, despite my troubles with taking care of everyday tasks. I have read some of Dr Bredesen’s work and saw a video of him talking, and I wish you all the best to distill the information that works for YOU from his book. I wsh you everything of the best in your exploration of what may be in store for you. It’s great that you are still able to read about it.My focus has slowed down a lot–I take forever to finish a book. I am grateful for the time I have had to put my life in some kind of order, it gives me peace. As you find out what you want to do, don’t forget to live great, love great every day!