Furrry, fuzzy baby penguin chick holding a bouquet of pink roses.

I’m Fine Without a Valentine

If you ask my closest friends, they will tell you I am a romantic. Of course, I will deny it at first, even though deep down I know it’s true.

I love love. I love doing nice things for those I love. I love giving unique gifts I know will be loved and appreciated by the recipient.

But I don’t love Valentine’s Day.

It’s not because I have spent the vast majority of Valentine’s Days without a romantic love. Granted, this will be the 24th Valentine’s Day since I was 18 years old and I have only had a romantic love for 4 of those days.

Yes, I love having a romantic partner when that is a part of my life. It is thrilling to have someone who honors your vulnerability and likes you anyway; someone who shares intimate secrets and sends your dopamine levels soaring with compliments and kisses.

However, my self-worth has never been tied to having a romantic relationship with a man. I have always been comfortable on my own, not really able to understand those people who felt like they needed someone to “complete them,” or make them “whole.”

Some of my friends tell me it’s just because I haven’t met my “soul mate,” the person I am “supposed to be with.” They tell me to just hang on and when the time is right, “Mr. Right will come along.” What if I’m alright without a Mr. Right?

My dislike of Valentine’s Day is not because I have not been exposed to extended romantic relationships. My parents celebrated their 63rd anniversary last July, six months prior to my father’s death in December. My grandparents, aunts and uncles, sisters and brothers-in-law, many friends – all examples of strong marriages and relationships I am blessed to witness.

I certainly don’t dislike Valentine’s Day because love is absent from my life. I am fortunate to have a wide circle of support, love and affection from a variety of friends and family. These connections are central to my feeling of well-being and happiness. They sustain me when times are challenging and help me celebrate the good.

Maybe my dislike of this day meant for lovers stems from the fact that even if I found romantic love and wanted to get married, marriage is not a realistic option for me due to my disability and my need for long term care. Like most people who receive home care for an extended length of time, I rely on Medicaid to pay for my Personal Assistants. Thanks to the New York Medicaid Buy-In Program for Working People with Disabilities (MBIWPD), I am allowed to work and earn more income than allowed in traditional Medicaid and still qualify for Medicaid coverage.

Medicaid eligibility can be complex, and is based on a number of variables such as income and resources. It also varies from state to state. As a single person without a disability or dependents, using 2015 income and resource levels found on the New York State Department of Health website, I would qualify for Medicaid as long as my income is less than $1,343 per month or $16,105 annually. As a person with a disability, I would qualify if my income was less than $825 per month, or $9,900 annually. However, as a single person receiving services through the MBIWPD in my state, I can earn up to approximately $60,000 annually (the exact amount changes each year) and remain eligible for Medicaid as long as I meet the asset limitations. I qualify if I am employed full or part time. I am eligible for insurance through my employer, so my traditional preventive healthcare is covered by that policy. Insurance does not pay for long term care though. Medicaid pays for the personal care I need to remain an active member in my community.

But if I marry? A married couple can only have a joint income of approximately $81,000 annually to qualify for services.

I am authorized to receive 70 hours of home care each week. If I were to pay out of pocket for this care, it would cost me approximately $20/hour. That is $1,400 each week, or $72,800 a year. Just for personal care. That is more than my current annual salary, since I cannot earn more than $60,000 and still qualify for home care.

I have always said I will never put myself in a situation where my safety and security are dependent on another person. Part of it is my own independent stubborn streak, and part of it comes from conditioning from my parents who told me repeatedly as I was growing up how important it is that I be able to take care of myself. If I were to marry, I would need to find another job with a higher salary to cover the cost of my care, never mind my living expenses.

Sure, I could find a job that pays more than $100,00/year. Those jobs exist. I have the degrees and skills to be successful at those jobs. But as much as I complain about playing the Medicaid game (proving my disability every six months, tolerating the home visits from nurses and social workers to assess my needs), I play it because I need to. I am dependent on these services to live independently in my community where I am loved and valued, and can give love to those who are important to me.

That’s the love that matters most to me.

However, if anyone has any leads on “Mr. Right,” I’m not opposed to having some fun… 😉

Why I am an Ally

I am an ally because of:

  • Alex – who is kind and loyal
  • David – who is always there to offer support and encouragement, and unconditional love (except for that one night in college when my friend and I called him to help us after we discovered $1.50 pitcher night at a local dive bar and drank more than we should have – but we forgave him.)
  • George – a forever friend who is teaching us about determination and resilience as he continues to recuperate from a serious health crisis
  • Kelly – who courageously lives her life on her own terms
  • Bill – who taught me the importance of saying thank you today to the people who have influenced your life, before time runs out
  • Andy – who changes tears of sadness to tears of laughter with what most would consider inappropriate jokes
  • Tony – who made me start singing again after a two year silence
  • Al – a teacher to many, in and out of his classroom
  • Kevin – my confidant and playmate at many childhood family gatherings
  • Tom – who fearlessly chased his dream across country and is living large, proving wrong all those who doubted (I never doubted!)
  • Dominick – who has helped me become a stronger advocate through his actions and example
  • Becky – who encourages me with her creativity and optimism
  • Howard – who answered the questions of a naive college undergraduate who was struggling to be a good ally (I hope I’m doing better!)
  • Andrew – who brings #deliciouslydisabled to people each and every day
  • Joe – who manages to surprise me with Facebook comments just when I need a smile
  • Sue – who sang harmony with me for staff birthday sing-alongs at Riverview (which is not along the river, and has no views)
  • Amanda – who inspires me with her success at reaching personal milestones
  • Sam – who teaches me to be a stronger writer by sharing his experiences with honesty and vulnerability
  • Liz – who always makes meetings more fun with her wit and dry sense of humor

I am an ally because everyone deserves to live their lives free from fear, with dignity and respect.

I am an ally because I know what it feels like to be discriminated due to the way you were born, a part you cannot change, the part which makes you uniquely who you are, the part others cannot accept even though you embrace it as your identity.

I am an ally because I was taught to love others as I have been loved, not to hate.

Love is love.

And the world needs more love.
Photo of a hand with painted nails. Each nail is a different color of the rainbow with the thumb being red and pinky being blue.

30 Days of Thanks Day 28 – My Sisters (and cookies!)

Today is the annual DiNoto Cookie Bake. This is the day my sisters, parents and I gather together for our tradition of holiday cookie baking. If you are reading this on Saturday, I am most likely covered in flour and sugar. To help explain this day, and why I am thankful for my sisters, I am repeating the post I ran on this day last year. It features an essay I wrote for a memoir class. Susan, Mary Jane, Donna, Sandy and Caroline – I love you more than I can convey adequately with words. Thank you for all you did to make my return trip to Australia a reality. You help me reach for my dreams all the time, and never laugh at my ambitions or ideas. I can’t imagine my life without your love and support. I am able to accomplish all I do because I have you to serve as roll models of courage, determination and perseverance. Today and every day I am thankful to be part of this amazing sisterhood.

The author and her five sisters.
Behind me from left to right: Sandy, Mary Jane, Susan, Donna, and Caroline. Photo courtesy of S. DiNoto.

COOKIES

Families bond in different ways. In my family – we bake. I’m not talking a pie, cakes, or a loaf of bread. My five older sisters and I are part of a tradition of cookie baking.

My Grandma DiNoto, her friends called her Kate, taught us to bake her “Fancy Brown Cookies” by feel. “You don’t need to measure the orange juice. Keep adding juice until it feels like this when you roll it into a ball,” she would say as she cradled the dough in her palm. Noni – also known as Grandma Spadaro or Josephine – made the best Italian Wedding Cookies. When I moved to Albany I heard people refer to them as Ginettes but we always call them oil cookies. My Noni’s oil cookies were never dry and always melted in your mouth, the flavor of anise dancing on your tongue.

I can remember my mother making her Christmas cookie list the weekend after Thanksgiving. It was important to create the list so she would know how much butter, flour, sugar and eggs to buy. My parents had a full length freezer on their back porch and in December, the majority of the freezer was full of cookies. As plates were made and given as gifts, space was created in the freezer and quickly filled with more cookies.

I left home in August 1990 as an exchange student to spend a year in Australia. At Christmas, my mother was missing her “baby” so to cheer her up my sisters Caroline and Donna asked if they could join her to bake cookies. Thus, the tradition of the DiNoto Cookie Bake was born. That first year, nobody could predict what this event would become. For my mother, it was a chance to share family recipes with her daughters. For my sisters, it was a way to practice baking with an expert while helping Mom feel the holiday spirit.

I was home from Australia in 1991 and I joined the group. We continued on for several years until Donna moved to Florida. Caroline and I would still meet at Mom’s house on a Saturday in early December and bake from breakfast until late afternoon. It wasn’t too long before the other sisters decided they wanted to join the party and in 1999 Susan, Mary Jane and Sandy all came for the first time.

Over the years we have expanded. We now bake at my sister Caroline’s house. She has a double convection oven which means 6 trays of cookies can be baking at once! This simple move tripled our output. In fact, when Caroline built her new house in 2009, one of the first questions from the sisters was “Will you still have a double oven?!” That Thanksgiving weekend we christened the new kitchen with flour and sugar while dozens of cookies piled up to cool on the tables in the living room. The emails and instructions detailing who should bring what to Cookie Bake start in early November.

A table loaded with racks of cookies cooling.
Each year, we bake dozens of cookies to share with friends.

As the youngest sister, I am the keeper of the “Cookie Journal.” This journal records secrets and insights, reminders, lessons learned, and stories to be treasured and remembered. There is the reminder from 2005 warning us not to over-fill the pecan tassie pans. The 2008 entry reminds us how we took baking in shifts so we could all run to the hospital to visit Dad who was recovering from hip replacement surgery. The single sentence, “Hi all – love you,”  written by my sister Mary Jane in 2011, one month before she died from brain cancer, makes all of us cry.

The author and her sister Mary Jane. Both are wearing Christmas aprons and Santa hats. Mary Jane is holding a dish of cookies.
Cookie bake with Mary Jane.

The five remaining sisters are individually part of something bigger, like a single measuring cup from a larger set. We still gather for Cookie Bake, but we know the day is not really about the cookies. The day is about us being together, putting the set back in order, starting the holidays with family and love. The set of measuring cups is incomplete now, with one cup always missing. Though you can make a full cup using halves and thirds, it’s not the same.