The Inside Press

Magazines serving the communities of Northern Westchester

Geri Mariano

Courage & Compassion in Times of Crisis: The Keys to Helping Yourself or Anyone You Know

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Full Disclosure: I was not an active follower of either Kate Spade or Anthony Bourdain. In this day and age of social media and celebrity, I certainly knew who both were and what each brought to the table, pun intended. I never purchased the eponymous bag that made Miss Spade a household name. I should have been quite a fan of Mr. Bourdain, but truth be told, watching his programs discouraged me in recent years. I was reminded of all I have lost since the first of three major surgeries left me even more mobility impaired than I had been for the first 42+ years of my life. Additional truth be told, I’m a fashionista wanna-be born in the wrong body and a frustrated hostess with the mostess not to mention a grounded adventurer.

The two recent high profile suicides early this summer raised the serious topic of depression once again. It takes the hard to believe self-inflicted deaths of the famous for this to be covered in the news with the exception of occasional reporting on teen suicide as well as the high suicide rate among veterans. The death of beloved Robin Williams highlighted the topic that still today seems taboo. The vast majority of his fans, knowing him only from the small or big screens making us laugh, found it unbelievable that he could be desperately unhappy, depressed. Do we really WANT to know that friends, family or celebrities can be feeling hopeless?

Many who have read my blogs or followed my Just Call Me Geri Facebook page probably know that my Mother (the one who chose me from a newspaper picture), from my earliest consciousness, taught me the importance of not feeling sorry for myself. The message included the tacit warning that no one would like me if I showed self-pity. It was only decades later that I would learn that there is a significant difference between whining and legitimately feeling down due to my circumstances.

By no means have I had the worst life, far from it, but I started life with strikes against me, first being born in a deformed shell with a condition called Diastrophic Dysplasia (some still call it dwarfism) that would embody my soul and personality. Being abandoned in the hospital by biological parents who left instructions behind that “no pictures to be taken of this baby” added 2nd and 3rd strikes, yet I was never out.

I won’t list the entire litany of hardships faced through 50 years but some include:

  • Being asked why I would want to have a baby and do to them what happened to me;
  • Being humiliated at a summer camp by someone supposedly to have been family;
  • Hearing sighs, groans and whispers when people had to help me in/out of cars or up stairs (who’s going to help Geri?”) and to stay away during emergencies;
  • Being “gently” told I could never provide a home for a man I had feelings for and not to expect to ever get married;
  • Being “harassed” by a married man who knew I would have little to no other intimate opportunities;
  • Being belittled and disrespected in hospital facilities when known I was alone;
  • Having inappropriate medical treatments or not having appropriate medical interventions due to Government restrictions;
  • Being at mercy of caregivers, who can be rude, rough and larcenous;
  • Being told I’m too depressing to talk to …

When at 40 I had finally obtained a Master’s Degree to begin a long in trying to figure out career, I was soon stymied, having that career cut short by three surgeries that left me in worse shape than before. The last two surgeries I never would have consented to if I had been warned my mobility would be all but lost completely. I would have opted for shorter life span over non quality of life. When over 10–30 years ago I’d fall into pits of despair, I struggled mightily, conjured up plans, fingering bottles of medication, really my only option. Remembering the haunting conclusion of Edith Wharton’s “Ethan Frome” always prevented me from trying anything self destructive with my car, the only other possible tool at my disposal. Yet, I always dug deep, as far inside as I could to keep the wavering flame from going out. Once such night in the wee hours, I remember sitting on the floor by my bed sobbing with heaving muted screams. What brought me back was thinking of “my kids” and their parents …how would they explain to them that I gave up?

This disclosure can possibly hurt my alternate career in the making …aiming to be a successful inspirational speaker but this is my truth. I cannot be phony. I’m not asking for people to feel sorry for me, but to understand that there are no easy answers.

More additional truth be told, I’d much rather laugh than cry. I actually enjoy having others laugh at my sometimes corny, other times bawdy, humor. I really should find an amateur Stand Up/Sit Down Comedy venue. Ridiculous irony from the universe, I’m rather an extrovert. God couldn’t have made me an agoraphobic?

I have my “highs” when I have several speaking engagements booked but then the “lows” (oxymoronic?) come rising up. (oxymoronic?) when I can’t seem to break through, catch that one break. My life is not one that made headlines because of a national crisis such as the Boston Marathon Bombing. I didn’t lose limbs while fighting for my Country. I didn’t grow up in

the age of social media where Promposals to kids with Special Needs go viral. I do not begrudge today’s kids who benefit from widespread inclusion.

I do not begrudge these later generations of kids who have benefited from widespread inclusion. In fact, I’d like to think I helped pave the way. Perhaps I have been “of use” to quote John Irving’s Dr. Larch.

Depression can take deep hold of anyone. For those suffering, suicide can seem like the only way out. Others may see it as selfish. Feeling like a burden is not easy but once a person has that initial thought, it becomes nearly impossible to erase it from one’s mindset. Please have compassion for those who have left via their own actions. And if you “can handle the truth,” reach out to those who may be struggling. When I encourage students to look after each other, I ask, “wouldn’t you want someone to look after you?” For those who are struggling, please try to let someone know you’re hurting, reach deep down inside and find the courage to reach out for assistance without shame. Keep your flame lit!

Resident Geri Mariano’s Trying Experiences with Medicaid Managed Care

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By Grace Bennett and Janie Rosman

Geri Mariano
PHOTO BY RICHARD CAPLAN

Geri Mariano (also known as Geralyn Pinciaro), a much beloved Armonk resident with a myriad of health care needs, has hit too many brick walls in her odyssey through the health care morass. Inside Armonk contacted local and state officials with the goal of spotlighting her situation…in the hopes that Geri can receive the care she deserves and within her means.

“Geri Mariano imbues the spirit of the community and pride in her hometown, and it in her,” State Assemblyman David Buchwald stated when contacted to discuss Geri’s recent issue with obtaining optimal health care to address her unique medical needs. “What saddens me so much is that health care policy hasn’t done right by her, most recently in June 2016.”

Background

Governor Andrew M. Cuomo’s Executive Order No. 42 regarding Medicaid redesign was to cover recipients who have long-term disabilities and chronic health problems such as diabetes, heart disease, substance abuse and mental illness. Some constituents like Geri Mariano found their coverage changed as a result of the Governor’s April 12, 2012, directive, which established a state-based health benefit exchange per the Affordable Care Act.

Born at White Plains Hospital in October, 1967 with Diastrophic Dysplasia/Dwarfism, Geri was abandoned at birth by the biological parents. It wasn’t until she was 18 months that then Geralyn Pinciaro was taken in by William and Doris Mariano after her story appeared in the Gannet Newspaper. She was raised in a loving home; yet never legally adopted, Mariano was an official “Ward of the State” and remained under Department of Social Services’ protection until she turned age 18. Afterwards she went years without needing re-approval for Medicaid coverage.

Approximately 10 years ago, she would be re-certified every other year or so. When she received a letter stating she would be moved from Straight Medicaid in January. 2013, she asked NYS Assemblyman David Buchwald (93rd A.D.) to intervene on her behalf. After a few calls, the Assemblyman’s Office found there had been a mistake and Mariano’s status was not supposed to change; her status was changed back.

A letter last summer mandated Mariano to enroll in a managed care plan by July 31, 2016. As no exemptions for Medicaid enrollees applied to her situation, she was automatically enrolled in MVP Medicaid Managed Care. As a result of the change, Mariano can’t see her PCP whose office is in downtown Armonk and has been accommodating and an advocate for her for over 20 years. Additionally, her aides took an unexpected pay cut due to the coverage switch. And the prosthetist who got Mariano up and walking again after several years is not covered. After making much progress regaining the ability to walk, Mariano has not been upright since November, 2016.

Mariano was the first special needs student with a physical disability to be enrolled in Byram Hills School District in 1972 without the Federal Mandate to do so; she graduated in 1985. Mariano graduated from Smith College n 1989, one of its first matriculated students with congenital disabilities. In 2013, she received the Spirit of Independence Award from Westchester Disabled on the Move in Yonkers. “We all want to assist Geri, whom I have known for many years growing up in Armonk,” said Westchester County Legislator Margaret A. Cunzio, representing District 3 (Mount Pleasant, Pleasantville and parts of North Castle) “Anything we can do to bring this issue to the forefront and seek assistance from New York State is imperative.”

Her two Fair Hearing appeals (when no  representatives from DSS or Medicaid Choice showed up) were denied last fall. Mariano was informed by the Hearing Judge that his decision could be overturned but that she would not be made aware if in fact it was. Mariano is frustrated to not know if the Hearing Judge ruled in her favor and the decision was overturned by Albany. Mariano reached out to friends for advice with her predicament, one of whom posted her situation in the Facebook group, Armonk Moms. At press time, discussions have started whether a letter writing campaign and rally would help bring wider attention to this matter.

The Inside Press has since reached out to the Governor’s press office, the New York Department State of Health, Representative Nita Lowey (D-NY17) and State Senator George Latimer (37th S.D.). As this is a State matter specifically, Roy Loewenstein of Lowey’s office, suggested the State could provide the most comprehensive answers.

A letter was being drafted by Andrew Ferris in State Senator Latimer’s office, and awaits signatures by the senator and Assemblyman Buchwald. “There’s no hardship exemption, where someone says, ‘What’s best for Geri given her situation?’” Buchwald said. “My role is to try to cut through the bureaucracy as the system is not designed for folks like Geri.”

At press time we are awaiting a response from the state. Mariano wants an opportunity to share her story with Gov. Cuomo’s administration representatives and relate that the present exemptions DO NOT fit every situation of those who have had coverage throughout their entire lives. States Geri: “There are others in the same boat. I need to be their voice, too.”

Grace Bennett is publisher and editor of the Inside Press, which she founded in 2003. Janie Rosman is a freelance writer and editor whose work appears in local and regional publications. She chronicles the Tappan Zee Bridge replacement project at Kaleidoscope Eyes.

Extra-Curricular Matters and Lessons in Life

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Motivational Speaker Geri Mariano. Carolyn Simpson Photo.
Motivational Speaker Geri Mariano. Carolyn Simpson Photo

By Geri Mariano

I am not a parent, so the ubiquitous phrase “Back to School” does not elicit the glee it might otherwise from adults counting down the days until their children leave the house each morning. However, I am excited that the school year is fast approaching. And the reason for that is simple: school had, and still has, a tremendous impact on my life.

Unabashedly, I was one of those students who actually looked forward to returning to the routine of school each September. While I enjoyed the summer months, my physical limitations (I was born with abnormalities of all things skeletal) meant that I could never be as active as most kids. Therefore, school was a place I could belong–and even thrive academically –with peers for six to seven hours each day. So, during the spring of 1972, my mom and I made the rounds of Northern Westchester school districts as I was due to start Kindergarten come September. Our mission was to meet school administrators and find which districts would welcome a student with special needs; there was no federal mandate to publically educate children with disabilities at that time.

In all my presentations, I give much credit to the Byram Hills School District for accepting me before it was legally required to do so. Was everything hunky-dory from my first day to graduation thirteen years later? No. Were restrictions placed for my own “safety” (and likely school liability)? Yes. Were parents more nervous than my fellow Kindergartners? Yes! Was I made to feel an oddity from classmates? Happily, mostly No … and this is why I embarked, several years ago now, on sharing my stories.

When at Smith College, unable to walk quickly about campus, I zoomed around on what I affectionately called my “buggy”. My daily routes (to classes and my work-study job) took me past a campus pre-school where, unsurprisingly, the children who saw me would stare, point or giggle. A wise teacher flagged me down one day and asked if I might meet with the children. I readily accepted. Introducing myself, I asked them if I looked “funny.” When they admitted that I did, I agreed with them. I don’t remember all we talked about, but, when leaving, I suggested that now that they knew me, maybe I wouldn’t look so weird to them. Suddenly, I had many new friends, and each day after, there were waves and shouts of “Hi Geri!”

Geri in elementary school.
Geri in elementary school.

Pieces of a puzzle I hadn’t realized existed began falling into place. 
I thought of my Byram Hills classmates and how they had always known me. Years later, when reconnecting with many through social media, they all confirmed my hypothesis: they’d always accepted me because they always knew me as just Geri, one of them. I was never a stranger, so I was never seen as “different.” And had they known of any bullying incidents, each offered they would have quickly taken care of the situation. What an amazing gift!

Still, I am reminded how important it is to teach our children, and how adults in particular have their part to play–especially after one discouraging encounter at a local department store.

A group of three or four pre-teen girls began following me around while I was shopping alone. I can accept a look here, a stare there, even a pointed finger or snicker. But what I cannot abide are triple takes or being trailed by youth of an age that should be better mannered. I remember turning, raising my shortened arms, asking “do you have a problem?” The girls quickly moved away, but, minutes later, stealthily began following me again. I then turned to track them to the adult charged with their behavior. Loathe as I am to complain to a stranger, I interrupted this woman on her cell phone and simply stated that the girls had been very rude. Shrugging, the woman responded, “What do you expect?” I expect adults and parents to do better.

My mom often admitted I was dealt a bad hand and that life isn’t fair. However, she’d continue, that did not mean the world owed me anything; nothing would be handed to me on a silver platter. Has life been a struggle? Yes. Have I had good times over the years? Absolutely. Would I like life to be easier? Of course. But I’d also like to see better understanding in the world for a whole host of difficulties.

I choose to do my part to facilitate that understanding, at least of differences, in our community and elsewhere. Will you join me? 
Thanks, Just Geri

Longtime Armonk resident Geri Mariano was born with diatrophic dysplasia, a lifelong condition that affects bone and cartilage resulting in many physical and social challenges. To learn more about Geri, please visit her website: 
www.justcallmegeri.com