It's May 17th! (World Awareness Day for Neurofibromatosis)

Today, May 17th, is the day designated for promoting WORLD WIDE awareness re Neurofibromatosis (NF), a medical condition that has affected yours truly since birth, please note the verbiage (referenced within the square) in the text-based image atop this posting.

Organizations seeking to promote awareness about this affliction are asking folks to wear blue and green as a sign of their being in solidarity with the plight of one's who have NF.

Additionally, buildings across the globe are turning on blue and green lights to to show their support; as evidenced in a posting by the Children's Tumor Foundation @ https://www.ctf.org/shine-a-light-on-nf/

Unfortunately, even though I have been traumatized by many consequences related to my having NF, I don't own blue and green clothing, so I cannot help in this manner, but what I am doing to raise awareness is working on a book which is tentatively titled, Imperfect Strangers, and its content describes some of the consequences of living with NF.

A video about "Imperfect Strangers" can be found within my Vimeo and You Tube channels. Here are the links:

https://vimeo.com/338407819

https://www.youtube.com/watch?v=Yt4SvgkRXuc&t=6s

And while I may not be wearing blue and green clothing, the European starlings who visit my garden, have blue and green features, as evidenced by the photos I'm including here in the images below:

This bird type is featured (along with many other bird varieties) in my books. You can find info re this matter within a post on my blog via this link:

https://www.thelastleafgardener.com/2018/10/one-sheet-book-series 

MONDAY'S MEMO: MAKE NF VISIBLE

The month of May is set aside for many things, among them are raising awareness re certain medical conditions such as Osteoporius and ALS.

My chilhood friend, Ellen McConnell Blakeman died as a result of the latter and I dedicated volume two...

... of my three volume hardcover book series, Words In Our Beak.

MY BOOK SERIES

They are directed to children and adults who are curious about birds, and want to learn about them from a unique perspective. 

On another note, May is also the month for raising awareness re NF, the acronym for Neurofibromatosis, a condition I was born with, and a condition which at this juncture, I seem to be struggling with more than ever and am having a very difficult time in my life.

I have written a book length piece ("Imperfect Strangers") about it, but efforts to find an agent have been futile. As some of you may know, I've posted a video re my endeavor which can be viewed within my Vimeo channel as well as my You Tube channel.

VIEW ON VIMEO
VIEW ON YOU TUBE

At the moment times have been more challenging than ever what with a dental procedure that I've been mentioning here on Blogger; on going issues with my eye-sight, new pain from NF and dealing with consequences of the coronavirus pandemic.

I do not want to go the self publishing route with this book (as I did that with my three volume hard cover book series, Words In Our Beak), as I  have had very little success getting the word out re the existence of these books.

NOW, every day seems heartbreaking as my struggles mount.

In any event, today, May 17th, as explained in the video posted atop this entry is the day NF based organizations set aside to make aspects of this condition visible.

Remembering Albert Loth Youngquist (born on this day in the 1920's)

Thinking of my father who was born on this day of May 13th in the 1920's and died in 1995. If truth be told, a big part of him died the year after I broke my wrist (as seen in the copy of a anapshot which is posted atop this entry) during the summer of one of my elementary school years, for he moved out of our house after the following summer.

Brittle bones are a consequence of having Neurofibromatosis (NF) and I mention this because I was born with this condition and the month of May is designated as Neurofibromatosis Awareness Month.

As some of you may know, I've written a book length piece titled Imperfect Strangers, re living with this condition and I've been querying agents for representation.

National Nurses Day 2021

On this day in 1974, "New Mexico nurses initiated a resolution in 1981 to have May 6th declared National Recognition Day for Nurses. The American Nurses Association (ANA) Board of Directors took up the banner and promoted the proposal. In 1982, the United States Congress designated May 6th to be National Recognition Day for Nurses and President Ronald Reagan signed the proposal."

My maternal grandmother, Clara Fitchie Melahn, seen in the photo (atop this entry) taken when she was a young woman, was 74 years of age at the time Regan signed the proposal. She had been long retired from nursing as she had left her career when she had children.

My grandmother had quite an influence on me, but the only experience I had being a nurse is when I played one (in the 1980's) on a soap opera, "One Life to Live. 

"It's May! It's May!"

"It's May! It's May," are a couple of lyric lines from "The Lusty Month of May," a song featured in Camelot. May is also known as National Bike Month.  Moreover it is the month associated with raising awareness re a number of serious health conditions including Osteoporosis, Lupus and ALS.

Both my dear childhood friend, Ellen McConnell Blakeman, for volume two of my Words In Our Beak book series is dedicated (seen in the next picture) and her father died from ALS.

Her younger brother Douglas McConnell is very active in raising awareness re this disease through a foundation named A Long Swim, which is referenced in my aforementioned book.

Even though I've self-published my three volume book series about birds, I don't want to go the self-publishing route again as it proved to not be a good means to getting much recognition in book stores or in securing interviews. 

On another note, the month of May is also dedicated to raising awareness to the nerve disorder known as NF or Neurofibromatosis.

#ShowYourStripes but Show Your Spots Too! It's Rare Disease Day!

One of the things, worldwide, that people will be doing on February 28th, is "showing their stripes" in honor of it being Rare Disease Day. As a way of paying homage to it, I've posted a "promo" image atop this entry.

According to a number of sources, including NORD (The National Association for Rare Disorders), "In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children."

The striped animal known as the zebra is the official symbol of rare diseases because this creature's black and white stripes are part of what makes the animal to its unique.

NORD wants to remind the general public of these facts: "Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of raising awareness regarding rare disease issues, people with a rare disease or have a loved one with a rare disease are being asked to SHOW THEIR STRIPES."

However, even zebras have a rarity within their own community. In 2019 Earth Touch News reported, "a plain's zebra in Kenya's Maasai Mara National Reserve dared to be different. A foal, sporting a unique brown coat accented with a smattering of white polka dots, was spotted by Maasai guide Antony Tira."

The creature can be seen in the next image.

This spotty zebra was evidently named Tira by the guide who first found him.

Sunday's Scenario: To be the Teflon OR to not be the Teflon? That is the question!

IMAGE CREDIT

Snoopy's got this, PARTIALLY.... and it is definitely how I felt this past Sunday when I was verbally attacked for my having Neurofibromatosis AKA NF.

BUT I do realize I don't have to "suffer these indignities," I most likely will have to be subjected to them over and over again...

And I will remind Snoopy, we don't have to "suffer these indignities," THAT part (suffering them) is in our control; as a friend of mine said to me upon hearing about my unpleasant encounter this past Sunday, "BE THE TEFLON."

With today being the last day of this month of May (which is the month set aside for NF awareness month) perhaps the wisdom of being the Teflon is truly noteworthy (at least for me).

An Unpleasant (but typical) Encounter

As many people know, I have been heeding the governor's plea for people to shelter in place in an effort to help prevent the spread of the coronavirus (COVID-19) ever since the eve of March 21st and did not go out (with the exception of walking a few blocks to the postoffice, walking a few blocks to a bank and walking a few blocks to check the status of a local laundromat, which is two blocks away).

However, I had to go out on May 11, 2020, to my orthopedist as I was past my need to follow up on the injury I sustained to my Greater tuberosity this past January and two days after seeing this doctor, I began physical therapy at a facility in my hood.

Other than the aforementioned occasions, I've not been outdoors, except to water my rooftop garden and to stand in it when participating in nightly #ClapBecauseWeCare sessions (tributes that honor first responders, healthcare professionals and essential workers who keep people safe during the this COVID-19 pandemic).

In any event, this past Sunday I took a very short walk carrying my DSLR, which is something I've NOT done in the few times I've ventured outside.

I was wearing a hat and my sunglasses plus a face-mask (a standard one, I don't have the ones I created yet), which meant my facial features were nearly covered, but I had opened my jacket a bit as it was getting hot and it wasn't opened very far, only my neck and the pendant I never take off (except for medical procedures) were exposed to the elements as a result.

Be that as it may, during my short journey, I passed a man (who can be seen in the image atop this entry) selling fruit on the street and was taken by the fact that he was on Instagram (which was indicated in a large print sign attached to his stand).

Throwback Thursday: "LIFE CAN'T WAIT" (Today's my video's one year anniversary.)

VIEW ON VIMEO
VIEW ON YOU TUBE

As of this blog entry, we only have ten more days left in the month of May, which happens to be known as Neurofibromatosis Awareness Month. I was born with this horrific condition and have attempted to raise awareness about it through postings here on Blogger as well as in my presentations (speaking engagements) including one I gave in December of 2018 at NYSEC (The New York Society for Ethical Culture).

Moreover, I've written a book, Imperfect Strangers, about living with Neurofibromatosis (NF) and today marks my one year anniversary of posting my video (the cover for it is posted atop this entry) about the book.

Sunday in the Park with Cardinals

IMAGE CREDIT

In my early morning blog post for today, I featured Marquis quote, "Procrastination is the art of keeping up with yesterday."

That quotation seems to be the story of my life these past couple of months because I have been unable to finish my proposal for a photo book project I am hoping to do with Steidl.

I had intended to submit my work to him this past April or May at the latest. However, this past May I took a U turn from the work I had been doing on the proposal and focused on my other book and or movie project, Imperfect Strangers.

ATTN: "Imperfect Strangers" is in Progress! (Friday's Follow Up)

CLICK THIS TO VIEW ON YOU TUBE

A few months ago (February) in an entry here on Blogger and a posting on Facebook, I mentioned an unkind (understatement) experience I had regarding my having Neurofibromatosis (NF).

In that entry, I also mentioned that I might return to a book project that addresses issues related to the condition. Now that we are nearly through with this month of May for 2019, which happens to be Neurofibromatosis Awareness Month, I have done something about it; and I have just posted an announcement on my You Tube Channel with a very short video that you can view by clicking the link underneath my screen shot that's atop this entry.

This past Wednesday Andre, Matthieu and Joshua came to my rooftop garden to celebrate my endeavor and we can be seen (below) in a photo Andre took with his phone.

Andre (second from the right) is my optician and I initially met him in June of 2016 after I had an accident where one of the consequences was breaking my glasses. I met Matthieu (seated in front of Andre in this picture) soon after. Wednesday evening was the first time I met Joshua (who is standing next to  me).

I am honored to say that this past summer Andre purchased volume one and volume two of my book series (volume three had not been released at the time), Words In Our Beak for Anne et Valentin.

THE WORDS IN OUR BEAK BOOK SERIES

The evening was fun which was something I have not had in a long time for a variety of reasons, but it was bittersweet because Matthieu is moving back to France in June; which is another reason all of us got together. He said he'll return to NYC on occasion to visit; so hopefully this past Wednesday was only a goodbye for now.