My Nonprofit Reviews

B THE DIFFERENCE's (B the D) logo, a turtle, is a creature with whom I've identified, evidenced by posts on my blog, “The Last Leaf Gardner,” and a chapter in my book, “IT’S THE LITTLE THINGS.”

B the D 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 when he was diagnosed with Neurofibromatosis (NF).

NF, is a disease that I was born with, and my having it has impacted my life on many levels, some of which is described in my book project “Imperfect Strangers.”

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.

BUT I digress...

Here is the story of how I found B the D and of how their assistance has benefited me:

I had had an accident on Friday, November 12th 2021, and sustained an injury.

The following day I went to my local CITY MD and received advice to go to the emergency room where I spent 4-5 hours undergoing X-rays which determined the type of injury I sustained.

The upshot is after spending hours in the emergency room, I was referred to an orthopedist whom I saw that following Monday (November 15). He confirmed the severity of my fracture and the need for me to have Open Reduction Internal Fixation Surgery (ORIF).

However 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 ultimately had the procedure.

One of the after post 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 (unbeknownst 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 do 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 and “proper” catheter were removed.

During one of the days following that surgery (I've lost tract of specifics), 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 Rosemary Anderson (mother of Gillian Anderson, the actress/NF activist and Arron Anderson her brother who died due to complications of NF) who is actively involved with a NF chapter based in the midwest.

Gillian read a portion of my writings re NF and sent me a handwritten note (I tried to include a copy of it here as it says I can add more files) but I am not able to include it (even though it's a jpeg) encouraging me me to continue with this writing project) but for whatever reason I can't add a copy of her note here.

[If anyone can tell me how to add it, please advise]

Gillian evidently told her mother, Rosemary about my endeavor as she has has read my blog posts and I am in touch with her by phone and/or email, but we have never met (she lives in Michigan, I live in NYC).

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 was working after all... for I learned about B the D at that time and ultimately was a recipient of a generous grant to cover part of a medical need.

B the D applied monies towards an outstanding balance of a crucial dental procedure.

I was very grateful they could do this on many levels, for while I still had a balance with the dentist, the fact that B the D helped me, caused them to continue to do do the needed work even though I still did not have a zero balance.

Unfortunately, in terms of my NF, symptoms began to worsen. I experienced excruciating pain in my uninjured arm, and for months that pain was thought to be caused from the fact that I might’ve been putting strain on it in an effort to compensate for the fact that the other arm was still healing.

More months went by and I could not get relief from the pain. The orthopedist who’d operated on my injured arm ordered X-rays which ruled out any orthopedic problems, but the pain continued. Suddenly it occurred to me that “something” NF related might be causing this agony.

I truly got the run around by medical professionals and under went wrong X-rays with seemingly no end in sight.

Then once again Rosemary Anderson came to the rescue, informing me about the existence of New York City based, Dr. Yohay, an expert when it comes to Neurofibromatosis.

Through his “intercession,” I was able to have X-rays that found the cause of my pain which was the fact that I had plexiform neurofibromas on my radial nerve in my uninjured arm.

Dr. Yohay then referred me to an excellent surgeon who removed them in October of 2022 but complete healing did not take place until May of 2023.

As I type this, I’m in the process of healing from another NF-related surgical procedure which was done (this past July) to remove plexiform neurofibromas on my foot.

Describing this condition has been an exhausting (and often heartbreaking) lifetime experience (which is many years at this juncture). When I’m in vulnerable situations and do this, I think about the turtles I’ve just seen in nearby Central Park and reflect on the truism that these reptiles must stick their necks out if they ever want to get anywhere. This helps me put myself on the line and be candid re my NF.

I love that turtles are the mascot for B the D and the support they gave me with a hefty medical bill has helped me to keep my spirits up in the midst of my new NF challanges.

Hopefully one day when I’m in better shape, I will be able to make contributions to others as B the D has done for so many.