Excerpt From: "Imperfect Strangers"
Soon to be called: "Imperfect Strangers: Lessons From Mother Nature"
The text based image posted above is one that I came across on the web when I was looking up information about Issac Watts. As indicated within the image, the quote is one used by Joseph Merrick to end all his letters.
My first "encounter" with this quote was in 2010 when I composed the second post of my then new blog, The Last Leaf Gardener.
Joseph Merrick is the man associated with Elephant Man's Disease (often confused with the nerve disorder known as Neurofibromatosis aka NF).
During the month of May which is now in its twenty-seventh day, those seeking to raise awareness about this affliction put extra effort in using their time to reach out to persons all over the world who have NF and/or to those who know nothing about the condition.
This is a fact I mentioned within my first post here on Substack.
Not everyone afflicted with NF has the same symptoms, nor are they affected in the same way when it comes to the physical manifestation of the disorder. As an NF-related organization known as The Children's Tumor Foundation, points out, "It's important to recognize that NF impacts each person differently—no two journeys with NF are alike. This uniqueness can sometimes make navigating care a daunting experience, making it difficult to anticipate what comes next."
NF is something that I have lived with since birth, and the consequences of having it has resulted in severe medical issues, some of which have resulted in the need for my undergoing surgery. Having this condition has also put me in uncomfortable situations, largely due to the fact that part of its symptoms have altered my physicality, and the general public's reaction to disfigurement is often heart wrenching.
For quite a long time, I have been working on a book (tentatively titled Imperfect Strangers), whose mission is to help raise awareness about the condition. A short video (two minute forty one seconds in duration), created by yours truly describes the book's intent.
As of this posting, there has been an overwhelming response to the video, below are copies of a mere fraction of the comments its received.
If you'd like to view some of the other comments, dear reader, they can be found within a post on my blog.
As you can see from the dates posted within a given comment, the activity is from 2022.
Unfortunately after that time, I had multiple surgeries that were necessitated by new NF symptoms and these prevented me from moving forward with my project, which I've mentioned within my previous Substack postings, so I won't belabor the point.
Instead I will point out that the early content of my book is directly related to the time in history when events took place during a period where little was known about NF.
This fact contributed to the angst. A woman who happens to be an advocate for those who have NF had this to say about my situation:
At this juncture, Imperfect Strangers, is still a work in progress. I'm just now beginning to hone in on certain aspects.
Below is an excerpt from a direction that I am considering:
Woman on the Street
Ever since the eve of March twenty-first I have been heeding our governor’s plea for people to shelter in place and to stay home as much as possible in an effort to help prevent the spread of the coronavirus. I did not go out of my apartment building with the exception of a handful of occasions when I walked a few blocks to take care of medically-related business that could not wait.
Today, a little over two months since things were shutdown, I venture out to take a walk in nearby Central Park for the first time since our governor closed down New York City. At that time and on almost a daily basis thereafter, he advocated for people to shelter in place.
In a few days I must go to my orthopedist’s office and I want to get a feeling for what it might be like to be outside among people again even though a lot of closures are still underway. I must see this doctor because I am well past my need to follow up on the injury I sustained this past January when I broke my left arm’s greater tuberosity. It happened while I was on an assignment to photograph and write about 2020’s first snowfall in New York City.
I’m prone to breaking my bones because I have a medical condition known as Neurofibromatosis (NF) which among many things can cause brittle bones; making them susceptible for breaks to occur.
Other than appointments related to my health, I’ve not been outdoors except to feed the array of birds who visit my rooftop garden (which is right outside my door) and to water what I grow there.
I’ve also stood in it on a nightly basis when participating in “Clap Because We Care” sessions (tributes that honor first responders, healthcare professionals and essential workers who are keeping people safe during this COVID pandemic).
After being inside for such a long period of time and only seeing a few people albeit from afar, I am looking forward to taking a walk in the park, but will do so cautiously, for we are being encouraged to keep activities to a minimum and to wear masks as well as to practice social distancing when venturing out. A number of places are still mandated to remain closed.
Under normal circumstances, I spend time in Central Park on countless occasions to enjoy and photograph the array of flora growing there as well as to observe wildlife, including numerous bird types, various insects, a few fish and a number of turtles.
As I stand on a deck that is in close proximity to the park’s Delacorte Theatre and Turtle Pond, I am well aware of the fact that it is quite a blessing to see turtles during my first time out, especially since I had not seen them for so many months prior to my being in lockdown. This is because at that time, turtles were already in their own annual lockdown for the winter. I’ve always been fascinated by their behaviors. How they adapt to winter conditions is just one of their “skills” that I find intriguing.
Unlike other cold-blooded animals, turtles don’t hibernate. Instead of sleeping, they remain conscious while their body processes slow down.This activity is called brumating, During the process they bury themselves in the mud and leaves that are located at the bottom of the park’s ponds (I think of this as them being in lockdown).
When turtles are brumating, their metabolism, and the pace of their heart beats, slow down while their body temperatures are dropping. The chemistry of a turtle’s blood changes so that it won’t freeze. During this time, these creatures don’t need to feed, because they survive on fat storage which they’ve built up the rest of the year, and they don’t require much oxygen.
Once the days of winter have passed and when the water’s temperature rises, the turtle’s body temperature and metabolism rise with it, and these creatures can begin moving again. They bask in the sunlight to raise their body temperature even higher.
This is what the turtles are doing today when I observe them spending time atop the rocks in Turtle Pond.
At this time I’m wearing a hat as well as sunglasses plus a face-mask, which means my facial features are nearly covered. I open my jacket a bit as it is getting unseasonably warm which the turtles have already noticed, many of them are catching the sun’s rays and they are not social distancing. Instead they are standing very close to one another or piling on top of each other. The reasoning is in the wild when turtles are basking they often are quite vulnerable to predators. A group of turtles, all stacked and huddled together, makes them appear to be bigger and stronger as a group.
My jacket isn’t opened very far, so only a small portion of my neck and the pendant I never take off are all that is exposed to the elements.
After my brief journey in the park, I take a detour and pass a man selling fruit on the street then stop to buy some blueberries to feed the birds who visit my garden. I am taken by the fact that he is on Instagram (which is indicated in a printed sign attached to his stand) and I let him know that I’m impressed.
He points to my camera and asks me if I will take a few photos of him and I agree to do so, even though I normally don't photograph people. He even directs me as to where to stand in order to get a full body shot of him. Upon my completing this task, he points to my neck and asks, "What's that?"
I think he is referring to my pendant, and I attempt to explain its religious significance but indeed he has no interest in the medal; rather he is pointing to the many neurofibromas (which have the appearance of bumps on the skin that I have as a result of being born with NF).
He then grimaces demanding to know what they are. I find myself explaining that the bumps are not contagious and trying to reassure him, but it leaves me somewhat broken in spirit.
Explaining this condition has been an exhausting (and often heartbreaking) lifetime experience (which is many years at this juncture).
Now as I fumble for words to tell the fruit vendor, I think about the turtles I’ve just seen and reflect on the truism that these reptiles must stick their necks out if they ever want to get anywhere and conclude that I must do the same when it comes to telling others about NF — even though when I am called upon to do this, the circumstances have been uncomfortable. I silently recall one such time that occurred during a tremendously hot and humid summer day.
I go into a Starbucks on the Upper Westside for a cup of courtesy water. As I am picking it up from the counter a perfect stranger approaches me and points to my arm stating, "What is THAT?” He is referring to the "bumps" (growths) on my arms (which are also all over my entire body and face).
I attempt to explain what the bumps are but he walks away causing the barista to say, “I heard what he asked you and I heard your response.”
I don't always feel very composed when responding to such remarks which is especially the case today as I interact with the fruit vendor. I hadn’t realized how vulnerable I was as a consequence of sheltering in place for such a length of time. I had nearly forgotten that at any given moment an individual could ask me (when I’m merely tending to my business) about my appearance. Once while I was waiting for a bus, a perfect stranger remarked, “Lady you have a lot of bumps.”
A similarly-toned remark was made to me when a church member (who happens to be a college professor) upon her learning I needed an intern, remarked, “What do you tell people about your skin? If I were your intern candidate, I’d be afraid to work with you out of fear I’d catch what causes your bumps and end up looking like you.”
These past incidents come to my mind as I attempt to explain NF to the fruit vendor and I suddenly recall that it was on this very corner of Columbus Avenue and West 68th Street, that I had a chance encounter where I ultimately learned more about Neurofibromatosis.
I let my mind wander as I recall that day:
My position at the college is eliminated due to budget cuts and I find work as a reservationist in an office at one of Manhattan’s well known museums. During an employee meeting my co-workers and I are grateful to learn that the funding for our department has been confirmed. However, shortly after this announcement, my particular employment is terminated. I have reason to believe this is because NF alters my physicality, giving me a bumpy appearance.
In spite of the fact that my condition is not infectious, my supervisor often accuses me of being contagious, telling me co-workers will not sit next to me, and consequently he will not extend my position even though it has been funded.
I am very disheartened about the whole situation and when I confide this feeling to a woman from an organization associated with the film and television unions to which I belong, she refers me to a discrimination lawyer. He writes to the museum and sends me a copy of the letter that I am reading as I walk up the street.
His correspondence states, “Prior to advising Patricia as to how she might proceed, I thought it appropriate to ask you for an answer to a very simple question. Why was Patricia fired? Help me explain why, if her work was satisfactory and her position was funded sufficiently that a replacement was added to the department’s staff, she was relieved of her duties? She is aggrieved by this loss of stature. She believes that is was occasioned by her physical appearance. Please let me have your explanation as soon as possible. It might help prevent litigation and it might assuage the feelings of a very competent woman who should not be penalized for her physical appearance.”
I am mulling over the words “competent woman” when suddenly I notice a perfect stranger chasing me up the avenue. She catches up with me, saying she couldn’t help but notice my bumps, then demands to know if I have Neurofibromatosis Type-One or Neurofibromatosis Type-Two. I start to tell her that I didn’t know there were two types, but she interrupts me by asking if anyone in my family has the condition. When I tell her that it appears that nobody in my family has suffered from NF, she goes on to proclaim I must be glad that the chromosome numbered seventeen linking my illness to mutation has been discovered. I had never met anyone who knew anything about NF nor did I know anything about a chromosome that had to do with Neurofibromatosis.
When I was a child and throughout my college years, little was known about this condition; a fact that complicated my situation. and in my mind’s eye, I can see my childhood diary recording:
“I am at the zoo to celebrate my fifth birthday. My next youngest sister and my baby sister and I are dressed in identical sleeveless dresses, that mom had made. She often sewed us clothing that looked exactly alike. Usually when my sisters and I wear the same-looking outfit I feel safer because I look more like them. I am the only one in the family who was born with a medical condition which has caused six flat brown spots in various sizes to appear on my body. The biggest one is on the right cheek of my bottom. The next two larger ones are on my back and my tummy. The other three spots are on my arms and legs. These are smaller than the others. I don’t think they show very much since I’m olive-skinned.
No matter what size they are, having them worries me since I have never seen anyone who has these. Sometimes I feel safer when I’m dressed in the same style of clothing as my sisters because I blend in more.
The woman doesn’t seem to notice that my mind has wandered and apologizes for being abrupt explaining that she has never seen someone walking nonchalantly in public who has been diagnosed with NF and she wonders if I could talk to her young daughter (who has evidently been recently diagnosed with the condition). The woman’s main concern is the fact that small bumps that are beginning to appear on her little girl’s face. The woman is worried as to how they might manifest. She says she has only seen pictures of people in books with gross lumps and bumps, not a “mild case” like mine.
I tell her that people have not always perceived my case as mild. They often say I have Elephant Man’s Disease. I cringe as a memory comes to my mind.
I am working at a Language Institute of a prominent college and one of the women who teaches at this place says she saw the Broadway production of The Elephant Man and insists that I have Elephant Man's disease.
Soon after this encounter, a student-aide at that same institution approaches me and says, "If you put your hand on the Bible, your bumps will go away, the evil will leave you.”
She is a Pentecostal woman, and she insists that my bumps are a form of leprosy. She quotes the Bible's New Testament stating, "I will thou be clean. And, immediately his leprosy was cleansed."
Her way of thinking and words remind me of what the minister from my small hometown in Illinois had told my parents when I was a child and with great clarity, I recall recording my thoughts about this in my diary.
‘In my church when someone is eight years old, they can join the choir. I love to sing and have been looking forward to turning eight so I can audition for the music director. Now that I am nearly eight I am excited about this but worried too because little lumps and bumps are appearing on my face. They are appearing on my abdomen, on my arms, on my neck, toes, feet, and chin --- they are developing everywhere and they are much more obvious than my six flat spots that I’ve had since I was born so I don’t think the bumps are related to the spots. I even have some lumps growing on my head which hurt when I comb my hair.
These growths can be seen poking out of my scalp when I wear my hair in a ponytail. I know they make me look weird. I have heard stories about people who are different looking being sent to State Hospitals. I am fearful that if my appearance is too unusual, someone will send me to one of those places.
Besides the bumps that have become quite noticeable on my face and arms, the spots on my tummy and butt have gotten a little larger. Mom doesn’t know why bumps are growing on me. No one is sure if this has anything to do with my spots. At least most of the spots are in places that don’t show unless I am naked, but I am afraid what will happen to me if people find out about them, they might think that I have leprosy.
The minister speaks often about leprosy, saying it is a serious skin condition. He says isolation and observation are required in most cases. I am afraid to ask about this, so I have memorized a story from the Book of Kings in the Old Testament. It is about a man named Naaman who was told by a prophet named Elisha to plunge into the river Jordan seven times. After Naaman followed the instructions he was healed of his leprosy. I know there is something about it in the Book of Leviticus too, but I can’t remember the whole story.
The minister says the plight of a leper is pitiable. They even have to cover their upper lip with a piece of cloth. I am thankful that my larger brown spots are in places where they are hidden from others, but I still worry people will find out that I have them.
For this reason, I fill our family bathtub with water and add a whole can of my parents’ Hills Brother’s coffee grounds, hoping a bath in coffee will stain all my skin the same color. What I don’t realize is that coffee grounds need to be perked to make coffee. The grounds end up at the bottom of the bathtub. I wonder if the bath water would have been more like coffee if I had used my grandma’s Instant Maxwell House.
My father is angry about the grounds clogging up the drain; and I tell my mother that besides being worried about the spots, I am upset about the bumps on my face. She says that the doctor told her they are pimples and that what I have is bad acne from not washing my face properly. She buys me a wash rag with a rough surface and a bar of special clear soap. I scrub and scrub my face, but when the bumps don’t come off, I am sad.
To cheer me up, my mother takes me to the cosmetic counter of our local department store to test colors of liquid make-up on my face. She insists that foundation will camouflage the bumps. The store’s salesclerk whispers something to a customer while pointing to my skin.
I feel funny as they stare at me with this liquid stuff on my face, but I listen to the store’s background music of Ray Charles singing, ‘I can’t stop loving you-I’ve made up my mind,’ and am hopeful that Mom’s suggestion of wearing foundation will disguise my bumps. And I pray that one day somebody will say these words that I now hear Ray Charles is now singing about love, to me.’”
The woman interrupts my train of thought and quickly informs me that years ago it was discovered that Merrick, upon which both the play and film, The Elephant Man are based, had suffered from Proteus Syndrome, a rare condition similar to NF. She also tells me her husband is a psychiatrist, causing her to know about the profound affect the erroneous linking of these diseases have on individuals afflicted with NF. The woman agrees that the general public and those who work in the medical community need to be educated regarding the emotional consequences of having Neurofibromatosis.
Then she laughs at herself and says, “Can you imagine, I’m a professional person, my husband is a psychiatrist, and yet when our daughter fell and broke her wrist, we didn’t believe her! We didn’t take her to the doctor for several days.”
Her own recollection made me think of my parent’s reaction when I’d broken my wrist as a child:
My mother and father sit on the steps of our front porch talking about how hot the summer has been. They have a small transistor radio outside and I am singing softly along to a song it is playing, “Puff the Magic Dragon.” The song speaks about “frocking in the autumn mist in a land called Honah Lee.” I don’t understand all the words — especially the part about “Jackie Paper” but I like the song anyway.
I stand behind my parents and lean against the screen door. It is late at night, and usually at this time, they would have made me go to bed. However, we’ve just returned home from celebrating my ninth birthday by having dinner at a nice restaurant, while my sisters spends the night with my grandparents. School won’t be starting for a few days so my parents aren’t sending me to bed early.
I am happy about school starting because I have finally learned how to ride a bike. My sisters already knows how to cycle as do most of the other kids on the block. It had been my dad who had taught me how to ride. He had taken me to the parking lot at the high school down the street and had explained that he would love me whether I could ride a bike or not, but he felt I was going to feel left out when everyone except me could ride.
I have some coordination problems and I’d been afraid to try to cycle. Now, I am so happy I’ve learned and can’t wait to ride my bike to school. As I stand on the porch, I think about riding a bike to school, and I am so glad to be able to stay up late. I hate going to bed before Mom and Dad do because I am always afraid I will miss out on something.
I usually lie in bed trying to listen to what they are saying in their hushed tones, but I often can’t hear their conversation because they have the volume of the TV turned high. I know they don’t like it when I don’t go right to sleep, so most nights I pretend to be asleep. But sometimes when they watch “The Tonight Show” starring Johnny Carson and I hear Ed McMahon’s booming voice as he shouts, “And now here’s…” I take a deep breath and shout out in unison with him, “Johnny!” For some reason this makes my mother angry. She yells from the den, “Go to sleep!” Then my father comes into my bedroom to hit me so that I learn to do what I am told.
Tonight though we are all simply enjoying the night air and watching the fireflies. All of a sudden, I lose my balance, fall to the bottom of the cement steps and land on my wrist. I can hear it crunch as the weight of my body presses into it. “I broke my wrist!,” I wince.
My mother puts her fingers to her lips and murmurs. “Shh, it’s late, you’ll wake up the neighbors.” My father then lights a cigarette and inhales deeply before saying, “I knew something like this would happen if we let her stay up late.”
“Well, you know what they say,” my mother answers, “after laughing comes crying.”
For the next few days my wrist throbs. I can’t even hold a glass of water. When I grimace, my mother says I am being overly dramatic. It is not until my mother and I are in the check-out line at the IGA Food Mart that my mother finally agrees to take me to a doctor. This is because when a perfect stranger sees my wrist is swollen; she begins making the sign of the cross over the injured arm. Everyone who is standing in line at the grocery store begins to look and whisper. My mother responds by saying that we are on our way to have my wrist X-rayed.
I feel victorious when the doctor says that my wrist is broken. I want my parents to be the first ones to autograph my cast. I am glad to have my wrist in a cast because it makes me feel special. I am convinced that when school begins in a few weeks, my wearing the plaster cast will be sure to make me popular. I imagine that the boys will carry my books for me. I begin to think of things that I might say if people ask how I injured my wrist.
I daydream of what I can say about how I broke it. Perhaps I can tell them that I was riding a horse while on a family camping trip and that the horse started galloping so fast that I was thrown off. I try to picture the kids’ faces as I tell them the story. Most of them had probably never been on a horse. I will surely be the envy of the class. Or, perhaps, I will tell them that I had gone to Sweden to visit my pen pal and that I had fallen while hiking with her in the mountains. Certainly that will make them find me interesting.
But, when school starts, I am quiet when the other kids ask me how I had broken my wrist. I just shrug and look away. All the little things I had fantasized about saying stick in my throat. A strange fear has wrapped itself around me. I am fearful that if I make up a story, someone will find out, then tease and mock me for falling off our porch.
I guess I am not as afraid of people taunting me for being clumsy as I am of having them know that my parents had not believed me saying that my wrist was broken and had waited a long time before taking me to the doctor. I don’t want anyone to know that I am such an unworthy person that my parents didn’t take me to a doctor as soon as the accident happened.
The first day of school the teacher tells my class to write about our summer vacation. She hands out ruled paper and ballpoint pens. This is new for me. In prior years, my teacher had only let the students use paper with no lines and write with number two pencils. I don’t like lined paper because I can’t see well enough to keep my handwriting on the lines; my script is always spilling over into the spaces between them. I am not looking forward to using pens either. They make me uneasy because they are more permanent. Using ink makes it difficult to erase what I write. Now I am even more apprehensive about full-filling the writing assignment of how I spent my summer vacation.
Even though I have broken my wrist and have a story to tell, I do not know what to put in my essay. I stare at the paper and the words stay in my head. All I can write is my name and where I live. I have so much to express, but I am afraid to put it on paper.
There was a time I felt safe about writing because I kept it in a locked diary, but one day my mother had found the key to it, read everything, and punished me about what I had written. Now, instead of concentrating on my thoughts, I look around the classroom and wonder what the other kids are writing about their summer vacation.
It is hard to write with my cast. I have broken the wrist of my righthand which is the one I use to write. I am not ambidextrous and with this cast, my penmanship is worse than ever. As a result the teacher writes with red ink all over my paper. In the margin at the top of each page of my essay she writes in bold letters “SEE ME AFTER CLASS!!!!!”
She penalizes me for my poor penmanship and makes me stay after school to practice writing on the lined paper. She even tells one of the popular girls from the class that she will give her extra credit if she can stay and assist me by holding the pen in my hand so that I might be better able to form my letters to look like the Palmer Method of Script.
A chart of this method of cursive script forming the twenty-six letters of the alphabet on lined paper is posted about the chalkboard. As my fellow student forces my hand in its cast to make the letters like hers, having a broken wrist no longer offers the possibility of making me feel interesting.
As I reflect back on what happened to me when I was the age of this woman’s child, she continues relaying her own story saying, “Maybe we didn’t want to believe our daughter— didn’t want to admit she has brittle bones [a symptom of my condition which wasn’t known at the time] and preferred to think she doesn’t have the condition at all. But now that I see you with a wonderful suntan wearing a sleeveless tank top and shorts and walking around so carefree in Manhattan – one of the hardest places to survive, I’m encouraged. We live in Texas, but if my daughter ever dreamed she could live in New York City when she grows up and walk around like you – it would be great!”
I am not feeling as lighthearted as she perceives and I am mortified that I have gotten to a point where I need to go to a lawyer because an entry level job is discriminating against me. I am relieved that my negative feelings about myself are not so apparent to others.
Like the woman on the street I’d had the encounter with so many years ago,I don’t think the fruit vendor notices that I’ve gotten lost in my thoughts yet it was that chance encounter with her that led me to learn more about NF and eventually have answers for people who questioned me as this vendor was doing. But like the man whom I had encountered at Starbucks, he is not interested in hearing about the bumps, rather he seems satisfied with his verbal bullying.
Compelling read, Patricia. Looking forward to your next submission.