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.

Honoring Aaron Anderson (d 9-22-2011) ETC

I have only recently learned of Aaron Anderson's passing. According to his obituary, Aaron died six years ago on this day of September the 22nd in the year 2011, at the age of thirty. Aaron Anderson is the brother of actress, Gillian Anderson, who wrote me the handwritten note (long before her brother passed away) which is posted atop this entry.

NF* is "N.F." (NO FUN): Tuesday's Truths WK 83 *Neurofibromatosis

The cartoon posted atop this blog entry was included within one of my Facebook postings this past Friday. In that entry I stated: "This morning, I had an appointment with the eye surgeon who removed a cataract from my right eye in 2014, which was a very dangerous procedure since I can only see out of that eye. In my left eye, I have what is known as "counting fingers only" vision and even that is very blurry. The surgeon removed the cataract from that eye in 2015, but a secondary cataract has developed, which she will remove next month, on June 8th. And, UNFORTUNATELY, I now have a lump growing on the eyelid of the left eye, which needs to be attended to ASAP. Through a referral from my eye surgeon, I've set up an appointment for next week to see what can be done about this. Very disconcerting news for me, especially given my precarious living situation! Obviously, I need to buy more than a VOWEL!"

The lump which I am referring to in that FB entry, may or may not be due to my medical condition of Neurofibromatosis, a condition which I discussed in yesterday's posting here on Blogger.

At my appointment with an eye specialist that is scheduled for the later this morning I will find out if the growth is related to NF.

Rare Disease Awareness Day 2019

It was brought to my attention (through a Facebook posting) yesterday by my acquaintance (Catherine C) that Rare Disease Day is being observed on February 28th this year.

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."

She advocates for this cause due to the fact daughter has a rare disease (Klippel-Trenaunay Syndrome AKA Fibro-Adipose Vascular Anomaly OR Kawasaki Disease). As it happens, before I saw Catherine's posting, I had a very unpleasant experience re my rare disease (Neurofibromatosis).

Neurofibromatosis Awareness Month

May is Neurofibromatosis Awareness Month and before it ends I'm following up with people that I have queried re having me on their radio or television program.

My brainstorming re a pitch is still in progress; but since we are already near the halfway mark for this month, I better just send them out. The follow-up which I’m still working on will include this:

NF is an abbreviation for no fun and it also stands for the genetic condition known as neurofibromatosis (a disorder that I have had no birth) which is certainly no fun. I have published a number of entries on my blog re my experiences of having NF.

I’ve also discussed my experiences of being bullied because of it during my presentations on birds where my focus is the implications for understanding the similarities of human behavior and the behaviors of members within the avian community. The topics I have covered in my presentation include how birds teach us about the human race in such matters (to name a few) as finding our voice, ways in which we compensate our behaviors to meet our needs, accepting our physical appearances, and how bullying impacts our lives.

Monday's Musings for May 7th 2018

The PEANUTS comic strip that I've posted atop this entry was published 39 years ago today, and upon my seeing it, I was reminded of my initial experience of hearing birds sing in my rooftop garden.

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).

The Latest Status re "Imperfect Strangers" (Friday Follow-Up)

TEXT BASED IMAGE CREDIT

As many of you know during the years 2017 and 2018, I published a three volume book series, Words In Our Beak, where the stories are set in my rooftop garden and told from the perspective of a female cardinal.

THE WORDS IN OUR BEAK BOOK SERIES

And you may also know, from my video on You Tube and/or Vimeo that I introduced my book project, Imperfect Strangers.

"IMPERFECT STRANGERS" VIDEO-1 ON YOU TUBE
"IMPERFECT STRANGERS" VIDEO-2 ON VIMEO

Yesterday on Facebook, I announced that the book is completed and has been submitted!

With Thanks to "B THE DIFFERENCE"...

It has been a number of weeks since I've posted content other than "news" re additions to my collections on FAA (Fine Art America) which is not typical for me.

I truly detest promotion-based blog posts, yet recognize that it is a very necessary part of being a freelance writer and artist.

Having said this, please allow me to bring you up to speed, which I’ve had on my to do list since mid November 2021, as I wanted to let my readers know I've had another life disruption... but thankfully one of the consequences has led to a true blessing bestowed on me by the B THE DIFFERENCE foundation.

B THE DIFFERENCE's logo (seen directly above) is a turtle, which is a creature with whom I've identified (featuring these animals here on Blogger and in my book, IT'S THE LITTLE THINGS).

The foundation, B THE DIFFERENCE is back from the holidays and I am most grateful to be a recipient of their generosity.

So, dear reader, upon reading this, you may be asking, what is B THE DIFFERENCE?

It is an organization which was founded in October 2011 by Stephanie and Jessica Merritt to honor the memory of their brother, Brandon, and they have shared the fact that Brandon was 8 months old he was diagnosed with Neurofibromatosis (NF), a disease targeting the nervous system by developing tumors on nerve endings. 

As readers of this blog undoubtedly know, NF, is a disease that I was born with (which is discussed in one of my first blog posts as well as in many posts thereafter); and my having it, has impacted my life on many levels, some of which is described in my book project Imperfect Strangers.

It can be viewed on Vimeo and/or You Tube.

Evidently Brandon never asked "Why me?" when NF compromised his ability to play sports and interact with children his age—if anything (according to his family), Brandon's physical disabilities allowed his personality to become incredibly nurturing and sensitive.

I must confess that there were times I did allow NF to restrict me, perhaps that's because I grew up in a different era, or maybe I'm just a complainer at heart.

BUT I digress...from my "explanation" re my uncharacteristic absence here on Blogger:

The following photos of me were taken at an Emergency Room in NYC (Mount Sinai, 59th Street) on Saturday, November 13th, 2021.

At the urging of CITY MD, I had gone to the emergency room on that day because I had fallen the evening prior and my symptoms were worsening. 

Here is the situation:

As I said, I had an accident on Friday, November 12th, and sustained an injury.

Turns out I had a proximal humeral fracture, which, as you may know refers to a break involving the area surrounding the humeral head, commonly known as the ball of the shoulder’s ball-and-socket joint. 

Brittle bones are a symptom of Neurofibromatosis and I've broken many bones in my lifetime, including the first month of 2020 when I broke my Greater tuberosity! So it was not all that surprising for me to learn the extent of my recent injury to my arm.

In any event, the following day, after a brief visit to CITY MD, I received advice to go to the emergency room where I spent 4-5 hours undergoing X-rays which determined the type of injury I now have. 

The upshot is I saw an orthopedist that following Monday who is associated with Mount Sinai hospital and he confirmed the severity of my fracture and the need for me to have Open Reduction Internal Fixation Surgery (ORIF)

BUT this surgery could not be done until 11-22-2021 as I needed to go to appointments for medical and COVID clearances which I did, and I’ve now had that procedure!

One of the after surgery “needs” that the doctor and anesthesiologist recommended for me was to wear a pump for a period of five-six days to release opioids in increments in a safe manner, but ultimately my pump (unbeknowest to me) was cutting off my oxygen leaving me nearly unable to speak and cutting off air circulation.

The pump was originally set to be removed permanently on Thanksgiving morning and I had made arrangements for someone to help me with this, but due to the potential danger I was experiencing (inability to speak and inability to breathe) its immediate removal was mandated.

Because the pump was on my back I could not get to it easily and the doctor warned me I could rip a  “proper” catheter if I did not to it exactly right.

But be that as it may, I was able to pull the device off which gave me much needed relief.

Then on 12-1-2021, two weeks after my surgery, my bandages were removed.

During one of the days following surgery (I've lost tract of specifics), and, out of the blue, I received a phone call from Aisling Rice (Director of Operations at B The Difference), who had heard about my plight with Neurofibromatosis through someone who actively reads my blog posts and whom I am in touch with by phone and/or email but have never met.

The fact that I had suffered an injury involving my arm had nothing to do with why I was contacted... it was just serendipity, or evidence that perhaps my guardian angel is working after all... for I've now been informed that I am the recipent of a generous grant (from B The Difference) to cover part of a medical need.

I am so grateful for this and I've applied their monies towards an outstanding balance of a dental procedure. 

Hopefully one day when I'm in better shape, I will be able to make contributions to others as B the Differnce has done for so many. To learn more about B the Difference, please click here.

Meanwhile, since my arm's movement is compromised, a turtle in Central Park is the one giving B the Difference a HIGH 5!

"Sometimes you feel like a nut, sometimes you don't." [At long last: An Update re my unintended hiatus from Blogger]

I am well aware that it has been over a year since my last post here on Blogger where I spoke about the fate of the Autumn clematis which at that time grew in my garden. I also stated, "However, given my new battle with Neurofibromatosis (NF) and the limitations this brings, it may be quite a while before I can tell my flora's stories. Plus I need to concentrate on raising awareness about NF which I hope to do through my book project, Imperfect Strangers."

During this unintended hiatus from publishing posts on my blog, I have had one trauma after another non-stop, mostly related to my having NF (multiple surgeries and treatments for which I'll spare you the details).

Please know, I've missed working on my blog and am quite humbled by the fact that people have contacted me re when, and if, I planned to return to this endeavor that I've been involved in since December 2009.

At this juncture I don't know if I'll be able to fully return to my blog for my computer is no longer functioning as it should. I was able to use a computer to create this posting but that may be an only one time deal.  

Meanwhile, I've been very involved in finding ways to get a new machine and will continue to try and make that happen, not only for my blog, but for my book project, which has been on hold due to what is going on with my machine.

This situation has also disrupted my ability to procure assignments with the on-line publication that I had been writing assignments for: narratives accompanied my photographs. 

It also has prevented me from being active with uploading new work to my venue on fineartamerica. 

In any event, I’m not particularly superstitious, but now that I'm posting this update, please let me confess, that I did find it interesting that a little bird spent time in my garden (this past December and January) as I attempted to get through these new hurdles with Neurofibromatosis.

The creature I am speaking of is a ruby-crowned kinglet, "a small bird with a big spirit." An image of my visitor visiting my garden can be seen atop this posting as well as in the copies of photos I took of him that are directly below.

Ruby-crowned kinglets are known for courage, strength, as well as determination and have been considered to be a symbol of hope and renewal. Birders concur, the ruby-crowned kinglet reminds us that no matter what challenges we face in life, we can overcome them and they remind us to never give up on our dreams and to remain positive in the face of adversity, for this tiny creature sings (as do many birds) even in the darkest times, reminding us that hope and joy can be found.

Many weeks have passed since this creature visited me, yet I'm still hoping the truism re the presence of such a bird holds, and that I will be able to return to my project. 

It was a very recent encounter that I had which reinforced what I feel is a a need for my book project to come to fruition. Here is what occurred:

One of the sons of the owner of the building where I live pointed to my face and in an unkind manner (although I've been the target of much worse comments and questions) asked about my bumps. 

This is something I "should" be used to at this stage of my life, but there are days when encounters such as this get me down, while other times I can brush off them off. As an old candy bar commerical jingle (composed by Peter, Paul and Mary) proclaims, "Sometimes you feel like a nut, sometimes you don't."

In any event, a video of my book project's intent was posted last September on You Tube as well as Vimeo and the response was very encouraging as evidenced by copies of comments that are posted below:

                                   

With all of these testimonials, now, more than ever, I hope to move forward with my "Imperfect Strangers" project.

Thanks again to all my readers of this blog for checking in during my absence from posting.  

I hope to continue doing it again, but what with my health and technology issues, it may be sporadic, so feel free to check my smaller updates as well as my "stories" on Facebook.