But for now, on this twelfth day of May, another occurrence during this “merry merry month”, has been brought to my attention;
which is that May is the month for Neurofibromatosis (NF) awareness, and May 12th, is specifically set aside to raise awareness for NF via the art of doodling. This is something that I was not cognizant of today, and perhaps this is a good thing, because as it happens, I suffer from the neurological disorder of NF-1 (a fact I disclosed near the onset of this blog in one of very first posts, “Tis True my form is something odd . . .” (which you may click to read here), and for many years NF was the focus of my life. Therefore, my not committing to memory the fact that May is NF awareness month (and also that today, in particular, is set aside for special concentration on NF awareness) is a poignant omission for me, and I have my herbs, plants, trees, and shrubs, that I grow in my terrace garden to thank for it. I have lived with NF for so long that it was defining me. I was someone who had the conditions of legal blindness and NF, but I still performed activity-X and activity-Y, and now, I am someone who does activity-X and activity-Y, but I happen to be legally blind as well as having NF. In fact, when I first set up my blog (and for nearly the first year of the blog), my “About” said this:
“I am a photo-artist, urban gardener, and an avid cyclist. All three of these endeavors are surprising to some, because I am also legally blind. It does not necessarily take sharp vision to do any of these activities, but it does require tenacity, which is my nature. I was born with low vision as well as a neurological condition (Neurofibromatosis Type One) and from an early age I had to be creative and persistent about doing things that many folks said could not be done. For my photographic work, I have designed pinhole cameras, adapted dark room equipment to meet my needs and used support software such as JAWS when the computer is involved. For gardening, other senses such as smell and touch become my green thumb and for cycling, I ride on a Tandem bike covering over 75 miles on a given single ride, and would gladly do more when the occasion arises. Perhaps the tenacious spirit is inborn. After all my last name Youngquist comes from the Swedish. It is for a plant that can survive under all circumstances.”
Now, my “About” reads this way:
“On this blog, I discuss how my gardening experience inspires and informs the images I create for my unusual line of invitations, event program covers, and all occasion greeting cards; as well as my impressionistic photo-art. (For details see patriciayoungquist.com). Sometimes I reflect on current events, or discuss what people that currently influence me (or have influenced me from their place in history) are doing or have done. My 1st blog entry was 12.31.09, where I laid out my plan for this blog. Now, January 29th 2011, after 108 posts, I ’ve changed the layout, and I warn you that I like long sentences, because when they stay on point (as I hope I do), they take you on a journey. I like to plant ideas, as well as seeds, with good care, and nurture them as they grow.”
After years and years of anguish, I am thankful to say that the emotional toll of my NF is taking a backseat in my life. I am still affected by it in terms of physical symptoms—in fact, I had a large neurofibroma removed from my thigh in the fall of 2009. The growth was so large that, upon its removal, my activity was doctor–ordered to be curtailed, and I also recall my seeing the monster-sized growth inside the test tube (before it was sent to the lab) horrified me.
NF has caused me great agony and I ’ve written a book about it in a child ’s voice in hopes of raising awareness regarding the emotional aspect of having this condition. This is not a “TMI” style book, rather its purpose is to articulate some of the consequences of having NF to give voice for those who are unable to put the experience into words. I am old enough at this juncture to realize the universality in many of my experiences. Joan Didion has said (in her essay Goodbye to All That), that one of the “mixed blessings of being twenty and twenty-one and even twenty-three is the conviction that nothing (like what you are experiencing), all evidence to the contrary notwithstanding, has ever happened to anyone before.”
Having noted Didion ’s observation, I will say that the full blessing that has come to me with age or acceptance (and there is nothing like gardening to teach one patience and acceptance), is the conviction that many things that happen are universal, and that helps keep folks connected even though specific details vary. The main reason I believe that my book will have value is this: due to the fact that loneliness and isolation are documented symptoms of NF, I am certain my book will touch a chord with anyone who is involved with NF — or with anyone who has felt lonely or isolated for whatever reason. The first portion of my book was read by Gillian Anderson, whom I submitted it to in the late 1990s, and who wrote me a lovely note that said, “bless you for being so willing to write about your life without shame”, in her cursive script. When I first read the note, I thought it said bless you for being willing to write about your life without blame, until a friend helped me decipher the handwriting. Ms. Anderson ’s brother has NF which is why I though she ’d be interested in my project. At the time of that note, Ms. Anderson said she ’d be happy to read my entire manuscript “upon completion”, and I was so overjoyed to receive the response that I had her note laminated. So as not to make a long story longer, all I will say is that I did send Anderson a longer version, but was ultimately told (in a phone call from Anderson ’s mother — whom I do not know but who evidently received my contact information from her daughter), that Gillian Anderson was not interested, but I was asked if I would I be willing to donate funds, or serve as a full-time volunteer for their organization. At the time I had lost a job due to some misconceptions about my having NF (the employer feared I was contagious and BTW, NF is not contagious), and I was destitute — certainly in no position to donate to Anderson ’s family ’s organization. I must confess that I was so annoyed that I cut up Anderson ’s laminated note with scissors over the garbage cans in front of my building.
From what I understand, Ms. Anderson has taken a different approach to raising awareness for NF other which is much different than my emotional recounting of how the NF experience has been for myself and my family. Anderson is involved in doodling as a format to raise funds and awareness for NF, and as it happens, in this month of May, today, May 12th has been designated for doodling—or more specifically the selling of doodles drawn by celebrities as well as other VIP types. It has been assigned the name National Doodle Day, and a screen shot for its logo can be found at the top of this blog entry.
According to Wiki, the definition of a doodle is “an unfocused drawing made while a person is otherwise preoccupied”. It is this definition of doodle, which leads me to conclude that the use of the doodle is quite appropriate as it seems, when it comes to understanding NF, people are “otherwise occupied”.