This is the online version.
The original art is #373.26-2 at the Brooklyn Art Library
“The Power You Hold Within You is Greater Than You Know”
The reader should bear in mind that the original book was created in a format that is quite different than a long-scrolling blog post. The original analog text was also confined to the size of the 5″x7″ pages of the sketchbook itself. Brevity was necessary, and because of this, much remains to be read between-the-lines.
The illustrations can be enlarged for detail.
(Or, Bypass the Introduction)
I am Deanna Meyer, an artist living with Multiple Sclerosis and Endometriosis. Originally, I created “Believe” for the Brooklyn Art Library’s Sketchbook Project. This is its digital companion. It is here for those who have asked to read “Believe” in its entirety, beyond the posts on social media.
You see, this isn’t a real book. Well it is real, but it isn’t a published book that you can buy in a store. It’s a sketchbook that I’ve turned into my life story.
The Brooklyn Art Library houses thousands of sketchbooks from its Sketchbook Project. Currently it claims 41,000 sketchbooks from over 130 different countries! Each year, some of the new submissions go on a tour of major cities in a nifty little book-mobile! The books are also available for visitors to “check out” in the library itself. Books submitted range from professional artists, to writers, to collage-makers, to doodlers, to school groups. It’s a library, it’s a gallery, it’s brilliant!
My sketchbook is currently at the B.A.L., having been received by the vol. 15 deadline. Sliding in just before the COVID-19 pandemic shuttered most of the world.
The library offers an option to digitize sketchbook submissions. Not all books are digitized, many remain solely as analog sketchbooks you can hold in your hands. The artist chooses how they’d like to submit.
Digitization allows those who may not be able to physically be in New York to see the books as well.
“Believe” was to be digitized after its arrival to the library this past February. However, since for now, the library is closed, my book is here for folks to read.
I anxiously await for the time when I can visit my little piece of myself, which now lives at 28 Frost Street. Hopefully it’s nestled in cozily, among some new sketchbook friends.
Some folks have asked me, whether this book will be available for sale? I don’t think it will be. At least not in this format.
It was created for a project, and I’d like it to remain that. Although, I have toyed with the idea of expanding it into a more complete autobiography. Who knows what the future holds?
You can read more on the process of creating “Believe”, and a watch a video trailer, over here.
Thanks for coming by, I really hope you enjoy it.
— Deanna R. Meyer
May 7th, 2020
Reader: You may either scroll to read straight through, or you may use the sketch links provided to jump directly to a chapter/sketch. Images can be enlarged for detail.
Sketch 01 Frontispiece – “Believe”
Sketch 02 Dedication – “Places I Know”
Sketch 03 “College Avenue & A Strange Child”
Sketch 04 Intermission – “Friday the 13th”
Sketch 05 “Teen Angst & The Obituary”
Sketch 06 “Wheatland Junior High & The GTO”
Sketch 07 “My Mom’s Gardens, a Reflection”
Sketch 08 “The Muse & High School Fear”
Sketch 09 “Vo-Tech, College, and a Diagnosis”
Sketch 10 “She’s a Real Trouper – My Early 20s”
Sketch 11 “A Light in the Fog – Meeting Chris”
Sketch 12 “Nettles, Medicine, & Anaphylaxis”
Sketch 13 “The Narrow House and a Long Trip”
Sketch 14 “Birth – Stubborn, but Cute”
No Sketch, double page of text “Sick, Tired, and Trying to be Mama”
Sketch 15 “Sick, Tired, and Trying to be Mama”
Ending “It’s Been Good, I Believe”
There are places I have seen in dreams that seem very real. Sometimes when I go to certain locations (houses, random fields, creeks, etc.), I am stricken with a feeling of extreme familiarity, if that makes sense. I know it, but I can’t have known it, and often it feels a bit lonely.
In my travels I’ve seen places that I recall from dreams. In dreams I recall places that seem so real, but I’ve never been. Is it a bit of déjà vu, or déjà rêvé? Is it precognition, or past life? Could it just be cast-off memories from movies, or television, or books? I don’t know, but it’s happened all of my life, and some are frequent repeats.
Because of my illnesses (Multiple Sclerosis, and Endometriosis), I’ve experienced severe fatigue. Sleep however, is never dull for me, so I’ve learned to accept, and enjoy it—as a part of life that many people may not be lucky enough to retain.
This image serves as a metaphorical, or perhaps iconographic, representation of a portal to those places I ‘know,’ one of which I think may exist somewhere in the Hebrides islands. Though I’ve never been, if I ever get there, I’ll let you know if the feeling matches up.
Thus begins a brief narrative of my life so far, and things that I have learned. I hope you enjoy, and that these words help someone, somewhere.
— Deanna R. Meyer
From age two to ten, my mother, father, and I dwelt in an attic turned apartment in a Victorian row home. The only entrance in and out of our floor was a permanent fire escape. It was treacherous at times, and certainly not legal.
I always felt that the apartment was haunted, and to this day it sticks with me. There was always a feeling of something behind or following me. Still, that little home holds my earliest memories, from learning to ride my bicycle, to my parents working on their muscle cars out back, to drawing and making paper dolls on our living room floor. My folks pinched pennies then, but we had what we needed and more because they worked hard and were innovative. During those years I was a sickly little child, asthmatic and always getting bronchitis, but that seemed to fade when we moved. During winters at school, I spent my recesses indoors with my teachers, and watched the other children playing outside.
A sweet older woman lived several houses down from us. Her name was Mrs. Schaar, and I used to walk down to visit my elderly companion. Her house was full of interesting things, like vases and doilies and figurines. Through her long, narrow first floor apartment, at the very back, there was a window veiled in lace sheers, which looked out into the garden.
When the light shone through that interweaving of patterns, it made the most heavenly sight. I don’t remember whatever happened to her, but I never forgot her, or the view from her window.
Working at home is a blessing and a curse. Due to my illnesses, I no longer have a day job. My kid and my house became my day job until she went to school. I take a few hours to work on my art, then on to something else, then back again. Distractions from the house itself are quite common; “Damn, there are cake crumbs on the floor, I should sweep.”
On the floor, I take notice to something else, and the whole plan to get to work is delayed. Seeing it is the issue for me. I go to make some tea in the ‘break-room,’ aka kitchen, and see dirty dishes, etc. There’s always something, no matter how tidy we all are.
Forcing creativity, or finding it interrupted – It’s a balance of both. Always, there is someone knocking at the office door, a text or phone call.Why is there screaming ‘out there’? Oh, now they’re laughing. On the other hand, being a person with chronic illness, it’s handy to govern my own actions. It involves discipline; it’s not for the weak or weary. It is multi-tasking in it’s truest form. My family helps a lot. All of it is balanced with resting because of fatigue.
Friday the 13th, I had nothing at all in me, but this was the result. You never know.
Down in the West End in the early nineties there was an empty plot of land a city block in size. It was directly across from my home. From late elementary school through grade nine, I liked to imagine in that field. It was big, empty, and mine. Every day I walked through it to get to school. It’s ingrained in my dreams and memories.
When I was thirteen or fourteen I had a boyfriend of sorts, the first boy to break my heart. I thought he was my “Ponyboy,” but it turned out, that was me. I burned the notes he wrote to me in that place, which is no more. It’s a church-complex now, ironically, because it was my ‘church’ first. The field is gone, and nothing looks the same.
We moved from there not long after that, and I can’t recall the last time I saw him.
My grandmother saved me the newspaper clipping, and I’d heard from some others that he decided to leave early. The daffodils here represent his birth month.
During this time of my life I found great solace in the music and lyrics of Dolores O’Riordan and The Cranberries. The daffodils also represent Dolores (for the song ‘Daffodil Lament’), and Asters for her birth month, as she is sadly gone, too. The violets are for mine, and the clover is for luck to them both in their journey on the other side.
Around this time dad and I were on our own. We were good roommates, that’s more or less the way it felt. I was old enough to understand most of it, and I helped out. Sometimes I’d pack his lunches, and put notes inside like he did for me. Riding in the GTO was fun. Those kind of cars have a personality. I remember I used to bring my cd-Walkman in for long drives, so we could listen to something other than the radio. I’d hang the headphones over the visor and turn it up real loud while he manned the wheel.
When thinking about cars like that, I think about a lifestyle. My parent’s cars were both muscle cars and both daily drivers. I think about the blue collar man always plodding away at life for something better. The man with beat up and grease-stained hands, scraped and torn up from years of abuse from physical labor.
Dad and I were both grieving then in our own ways and for different reasons, but we had the car, the music, and each other.
Sometimes, when I didn’t walk to junior high school, dad would drive me in the GTO. It was so deeply loud and rumbled at a steady pace, commanding attention and instilling a slight bit of fear. It was exciting. Cars that look and sound ‘tough’ hardly exist anymore.
The kids would turn their heads. Every kid from different walks of life, backgrounds, and cliques. They’d all shout loudly and call for him to
“Do a burnout!”
He didn’t disappoint.
Mom. For awhile we were like two seeds blowing in the wind, but eventually we landed, and grew, and our roots became intermingled. Although I’ve learned a lot from her, I note here that you can go your own way in life and still meet up in the end. She says to never spend one single second unhappy, because life is short.
I’m still working on that.
We have grown like vines. One, well trellised and neatly maintained. The other, wild and reaching – like tendrils springing forth for a firm grip. We come together as such when necessary, always rooted firmly in the ground after many years adrift.
Mom always cared for a garden everywhere we lived, even that early third floor apartment. There was a communal area that no one else fussed with much. She and dad put brick pavers, wood furniture, and flora. Herbs were also a part of all of her gardens through the years, as I recall.
At the apartment I used to ‘sneak’ curly parsley from our garden (it was next to the roses, I think.) Perhaps it was because I’m weird and I loved it. Or was it because parsley is good for your immune system? Remember how ill I was; did my body crave it because parsley contains a volatile oil called eugenol that has been shown to reduce inflammation?
You can draw your own conclusions, but I don’t believe a whole lot in coincidence. Either way, I know that fact because I garden and study herbs now. I do that because of my mom.
An integral part of my life has always been music. Interestingly enough, my dad is named for Dean Martin, and I was named after dad. Mom and dad always had records, cassettes, or the now defunct Fm radio station ‘Starview 92.7’ playing. I remember being very small sitting in front of the radio listening. Later in life, I dated a bass player for some time, and after that I married a singer-songwriter and guitar player.
In school I sang. From elementary to junior high I was in plays, choruses, gospel and chamber choirs. Over the years, some people have told me I sing nicely. A drunk guy once told me I sound like an angel, and whatever was I doing “…in this town?”
In my mid-teens I gained some wonderful new family members through both mom and dad remarrying. We moved to the suburbs, to a new school district. Though I looked forward to walking away from the fights and social issues experienced at my former urban school, it was a new kind of ostracism I found waiting. My clothes, my experiences, were different, and they saw me as an outsider. In a school where students drove BMWs, I just didn’t fit in. Offensive names, labels and presumptions about me, my sexuality, and my personality were everyday life. In time I found my niche folks (and one outstanding teacher), but I withdrew a lot and never joined the lovely singing program they offered. I deeply regret this, but now I know that to succumb to fear is a bullshit thing to do.
In my studio I dance sometimes, and I’m almost always singing while I draw. Nowadays, you might find me singing along with my husband while he plays guitar around a campfire.
I really didn’t like my high school. When I learned I could leave to join the tech program, I did. There, I met students from all over the county. I graduated with an award for merit. Guidance counselors had said it was a bad choice for a college-bound honor student. They spoke poorly of the tech kids. The joke is on them because this book was laid out by me, using technology I learned in my desktop publishing classes, as has been much of the freelance work I’ve done since, and the children’s book I wrote and illustrated.
Afterward, I applied to art school. My step-mom showed me how to get grants and aid. Art school should get a book of its own, but if this book is anything worth talking about, it’s a testament to the excellent professors I was fortunate to have.
Throughout school I worked a lot, at times several jobs at once. In 2003, during senior year in college, I noticed numbness on my face I thought was from a cold medicine. Working at a pharmacy, I inquired with the pharmacist. He persuaded me to look into it further. Thank God for him, because my doctor told me it was “all in my head.” After much ado, they found it was Multiple Sclerosis. Life became a whirlwind of symptoms and fear. Brain scans, spinal tap, IV steroids, medications that cost thousands a month and no insurance. One semester until my dreams were supposed to come true.
When I returned to school, my friends and professors threw me a 22nd birthday party. I’ve never been more surprised or grateful. I was excused from schoolwork, but finished work for the senior show, IV in hand.
Our twenties are when we figure out who the hell we actually are. All the things that were taught by our guardians, school systems, and friendships, are put to the test. It would be a lie to say I wasn’t angry about my diagnosis of MS. It was frustrating, and expensive. I couldn’t hold a job, because while employers liked me, but I required too much time off.
So many times on the phone I broke down with insurance companies, the government, employers. I lived with my dad and step-mom, when all my friends had apartments. In my mind, the only future for me was physical disintegration and the poverty line.
My boyfriend watched me go through this. He was a good rock during that time. What it was like to watch all this unfold, I don’t know. The nurses said I was a ‘trouper,’ but he knew it. He was there when I was up at four a.m., sick from the shots they gave me, nauseated, and screaming from the pain. Eventually I utilized agencies, got a lawyer, and got help.
While trying to find myself, he was my muse. I took the train often to visit him when he moved to NJ to be near NYC. There, his band recorded and played shows. We had a lot of fun in spite of it all. I’d been his teenage crush. When we began dating we said, “This isn’t a relationship.” We had plans – and relationships get in the way! It did become more, and there were some great years, but in the end we had to go different roads. I needed a different lifestyle. It had to change. He’s still a good dude, and has found his own path,
as have I.
One of the upsides to my MS diagnosis was that my whole family was there, each side. Divorces or quarrels seemed to cease to matter. When I was admitted to the hospital for diagnoses, everyone was there. My closest friends, all of my family. To this day, all of us work together. Illness brought us together as one unit versus a broken mess.
Time went by, relapses came and went. I was lonely, and wanted a companion. Frustrated, I decided to compose a list of all the things I wanted in a life partner. It felt like a ridiculously ambitious list. Things like: Funny, but also dignified, and other such things that popped into my twenty-three year old mind. “Family-oriented, intelligent, similar music tastes, able to work with my disease” and so on. That list is long gone, but I remember well creating it.
I began dating Chris in August of that year. Shortly thereafter, I told a friend about what I’d written. She looked at me and said, “I think he’s everything on your list.” Realizing she was right, I set my sights on not letting go of him.
It felt a lot like a fairy tale. He was just a bit older, and very mature. Driven in his field, family-oriented, and good with communication. Fun and amusing, but not lacking in manners. An intellectual equal, into similar topics, but with enough differences to grow. He paid for every meal, and opened my car door (now for our daughter, too). At the end of his classes he tells his students he loves them, and he’ll see them tomorrow.
Herbalism is something that I came to through necessity. A friend of mine, and of my college boyfriend, moved to Norway. He inquired about me, as he had left the U.S. right around the time I was diagnosed. He advised that in Norway, they use nettles leaf for such ailments, and to give it research.
I had a job as an in-home helper to two women with disabilities. Both had advanced MS. The agency did not know I had MS, too. One was in a wheelchair at age thirty-five, I was twenty-three. By her own confession, she did not do her physical therapy, and her legs were now atrophied. She warned me: Never stop moving and trying. I learned much about how to care for myself, and how to not let people treat me (unfortunately, her family was a pitiful support system, allowed her to be malnourished, and little help that I was ever privy to, and I was used as a maid service, versus a disability helper.) I’m saddened to learn, now, she passed away at age forty-two. A psychiatrist once asked me, “Tell me about you in a wheelchair.” I never returned. I gained diligence in the importance of not giving up, and trying through the most difficult of times to stay positive.
Back then, I had used the intramuscular shots that are available for MS. Aimed at slowing the recurrence of relapses, my experience was quite the opposite. I was sick from them, covered in skin reactions and bruises that made me look beaten. For some folks they work well. Not for me. After ten months of using a subcutaneous shot that seemed okay, I experienced anaphylaxis in the basement apartment of my father and step-mom’s home. Immediately, I couldn’t breathe. In the mirror I saw my face swelling rapidly. My heart rate soared. Stumbling to the stairwell, I leaned on the railing, and banged the wall until they heard me. They saved my life, I know it. The neurologist denied it was related to the meds, though the brand’s own website said otherwise. To him, as well, I never returned.
Chris and I were engaged in June of 2006 in Memphis, TN. Earlier that month I’d visited my grandfather’s hometown, Zwiesel (Bavaria).
Beale Street was an exciting blur of food and drink and music. One night at our hotel Chris played a song he wrote for me, asking for my hand in marriage. My late grandmother’s wedding set was waiting for me back in PA, per my mother.
My MS remained stable with nutrition and alternative medicine. We made a home out of a tiny late-Victorian row that really needed some love. Everyone called it ‘Narrow House.’ I worked in an environmental laboratory washing beakers, graduated cylinders and large glass carboys. It was then that I decided to return to school to get updated in printing technology and desktop publishing. We married with a joyous party on a warm day, late in October of 2007. I graduated again with honors from the same vo-tech, same instructor still there. We honeymooned during summer of ‘08. When we returned I got a job at that school, and we moved in to a wider house with less steps.
The honeymoon was a 30 day trip across the U.S., mostly following the Lincoln Hwy. Times Square to Lincoln Park, the highway dates to 1913. We love history and a TV program inspired me; “Let’s drive that.” Somehow, I’d never realized an over-congested road in my own hometown crossed the country.
Logging in 7,480 miles from 6/8–7/7, we recorded on the Myspace platform as we went. I formatted a hefty photo-book of 700 photos, journals, maps, and major news events, and the kind folks we met along the way.
Pregnancy treated me kindly. In the past, women with MS were told to avoid pregnancy, but now they know better. The body actually goes into a remission of sorts, and chances of passing it aren’t likely. All the parents were getting antsy, so we gave it a college try, and behold, the stork brought me a bun for my oven, so to speak.
The experience did not leave me (or us, for that matter) without scars. Bearing children leaves its mark on everyone who does it one way or another. Miss K was born after ten hours labor during a snowstorm, on a Tuesday at 7:59 a.m., 39 weeks. She was beautiful, but I got confused when they took her away, and my midwife and doctors started acting panicky.
Unbeknownst to me, she had an ‘under inflated’ lung, and I, well I was in pain. Now, I’d had natural birth – this was different. The placenta wouldn’t pass. They were trying to retrieve it manually when I heard someone say they had to get me to an operating room because I was in too much pain. They wheeled K away, they wheeled me away, and my mom and Chris were left feeling something I can’t imagine. As I got to the OR I heard the nurse saying to someone that I was losing a lot of blood, and where was Anesthesia? I asked her if I was going to die.
I didn’t, but it was the first in a line of surgeries and procedures for me. Miss K was fine thanks to one particular doctor who watched over her. Defiantly as a newborn can, she waited for me when I wasn’t able to pump. They said she refused formula. She has always been stubborn, but cute. Her eyes were wise and ‘old.’
Bringing up baby was bittersweet. An experience dotted with doctor visits and hospital trips. Two weeks after birth, I was sent to the ER for extreme pain, which couldn’t be quelled. Three months later it was discovered that pieces of placenta were left behind from the experience with placenta accreta (retained and deeply embedded to the uterus.) Three months of passing tissue, bleeding despite nursing, and extraordinary pain. No one listened. One doctor’s assistant said it “didn’t worry her at all.”
Family helped us along (many came and stayed with us.) So much of that time could have been different if certain medical staff had listened. The original surgeon questioned me asking questions, and was rude to me, and my family. He had the most poor bedside manner I’ve ever been privy to. I pushed about the pain until he did a procedure where he found that placenta had been left behind. It was removed and he said it would end there, but it did not.
We decided not to have more children, being told it was likely to occur again. They say it’s not related to MS. Of course, no one knows why any of these things happened to me. What I can say is that based on my research, the events that would follow (I believe) are related to the D&C’s, hysteroscopy, and hemorrhaging that occurred with the accreta.
Miss K grew exponentially it seemed. For a few years, things with my health were quasi-normal, before it progressively plummeted. In spite of it, we had a lot of fun. Chris began a Master’s course, I was selling my book and doing gallery shows, and the MS stayed stable. It was a busy time, full of love.
Raising a child when you have one chronic illness is interesting. It gets even more tough to navigate when you wind up with two. The nine years since childbirth were filled with visits to many doctors and major hospitals, OBGYNs, gastroenterologists, and urologists. ‘Mystery’ pelvic pain and chronic fatigue, along with a cycling mental rollercoaster came and went without any rhyme or reason.
Miss K grew and was smart as a fox. We hiked when we could, played in creeks, worked in our gardens. We left gifts for the fairies and gnomes, cast magic spells, and made toys out of things around the house. As she grew she became interested in history, dancing, art, singing, acting, and cooking. She was a regular little sprite, and one that was forever poking a nerve, but always one that was sincere, honest, and full of grace and beauty. She made ‘potions’ for me when I felt bad.
In 2013, it was a family doctor who suggested it was Endometriosis. A good OB-GYN helped me, and performed a hysterectomy early that autumn. Yet, despite this, pain continued. Hell is life where one day you feel ‘normal’ and function fine, and the next you are in massive pain, can barely move, and want to end it all. I know others with cycling illnesses like this, and I understand the variety of horrifying thoughts and emotions it brings. Depression is a real part of illness, it seems the medical world has barely scratched the surface of understanding that. At some point I stopped pushing for relief and ‘dealt with it.’ I’ve learned you’re nobody’s hero when you do that. I needed more help, and I waited way too long to get it.
Six years later I finally got everything taken out.
Some days I truly wished a truck would hit me and it would all be over. It did get dark. However, life has always handed me little things to bring me ‘back to life’ and not stay trapped in that place. Gardening helped. When I’ve been too sick to garden, my mental and spiritual declines.
My step-dad helped me learn to prune and care for trees and shrubs. My garden is my church. When I work in my garden, I think over things. It’s like meditation is for some folks. At times while thinking over troubles, and say, pruning a gold thread cypress, you have to stop periodically and back up, looking at the whole plant. You get really into it, and into thought, and then you back away, evaluating the next step. That process cycles until it’s done. Then you look at the finished project, and it’s such relief.
It’s beautiful, all tidy and ready to grow nicely again. Weeds cleared, erroneous branches trimmed to encourage new growth. Life is like pruning, I guess. Sometimes I’ve found great joy in digging out things that are overgrown or past their prime. Getting rid of it, moving it to compost where it can decay and eventually help sprout something new. Starting over. It’s all a metaphor. Gardening gives you lots of time to think. You might kill a few plants in the process, but hey, you’re still here.
In my life I have questioned and over-thought every choice I’ve ever made. I’ve tried things that didn’t work, or pan out how I wanted. And I still don’t know what I want to be when I ‘grow up.’ I’ll be thirty-eight the day after this book is due. This project has been one choice I haven’t questioned. Not for a minute.
Here is my life in a very small nutshell. At this point I’m still recovering from what I hope is my last surgery for endometriosis. As it stands, nerve-damage pain from all the prior surgeries may be a permanent fixture in my life, but I feel much improved already. The MS remains stable providing I get ample rest and avoid triggers. Every day is a new adventure.
This project was a gift to me from a friend. She wanted for there to be “A record…” of me. Although I received the book when I wasn’t able to begin it yet, I’ve pushed myself to finish it by the deadline. If my words help anyone out there, it’s been worth it.
SINCEREST THANKS TO THE FOLLOWING:
• The folks who put this amazing library together.
• Chris, who helps me think clearly when my mind is a whirling mess of thoughts, and provides me with an environment where I feel safe, rested, and happy.
• My family, whose constant support helped me grow and learn from life’s interesting hand.
• Deb, who asked me to try this, and believed I had it in me.
• Lisa and Cat, who helped me learn to accept my dreams and visions and how to interpret them.
• Kelly, for helping edit this crazy jawn.
• Every friend who’s ever listened and stood by me.
• Teachers & professors who urged me to give my all.
• Doctors, surgeons, & nurses who had empathy and expertise.
• Additionally, to the musicians and artists living and passed that make this world tolerable.
• Last but not at all least, my little girl. I hope someday when you read this it makes a bit of sense. Thank you for understanding and loving mama the way only you can.