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… 😉

Something Not Rotten At All!

If you are a regular reader, you know I love Broadway musicals. For me, there is nothing like escaping from reality for three hours while a talented group of musicians and actors transports you to another world where people burst into spontaneous song and dance.

Some friends and I have been season ticket holders for the Broadway Series at a local theater for several years. We have seen great performances without needing to take the three hour train ride to New York City. Each year, we speculate about what shows might be featured in the coming season. As soon as we heard about Something Rotten! we put it on our list of “must sees” and hoped the tour would stop here. So we were all excited last year when it was announced that Something Rotten! would be part of this year’s offerings. I had hoped to see the show in New York City, but knew that wasn’t going to be possible once I broke my leg last year and travel became more difficult.

Because things have been very busy these past two months, and since I spent most of December withdrawn from the world due to my father’s death, I missed much of the publicity about the show. I also did not take any time to research the cast or read reviews, something I normally do. I knew the show would be funny, based on this sneak peek from the 2015 Macy’s Thanksgiving Day Parade. That was all I really needed to know.

Since I did not pay attention to any of the pre-show press, I was surprised when I entered the theater and saw Adam Pascal’s name on the cast list. To say I have had a mild infatuation with Adam for more than twenty years is like saying some cats like catnip. Not sure who Adam Pascal is? Maybe you’ve heard of a little musical from the mid-1990’s called Rent? You know, the one with the the song upon which I based Thursday’s blog post? Yeah – that show! Adam was the original Roger. He’s since gone on to star in other shows, such as Aida, Memphis and Disaster!

Let me put aside my obsession feelings toward Adam and offer my opinion on the show. It was FUNNY! You don’t have to be a Broadway musical geek to enjoy the show. But if you are? You’ll love it! I tried to count the many musical and lyrical references to other musicals and gave up after thirteen. Cats, Evita, The Fantasticks, Phantom of the Opera, Chicago, Sweeny Todd, Rent, South Pacific, Annie – the list goes on and on. I know I missed things because I was laughing, which only makes me want to see it again. If the show is coming to your city, I recommend you go. Three hours of fun and laughter, song and dance, plus a hot man who can sing who struts around with his shirt open for part of the show! Who can’t use that right now?!

While I loved the show, the highlight of my day happened after the final curtain. Knowing we had time to wait before the bus home, I told my friends I was going to try to get to the stage door for an autograph. Believe it or not I have only waited at the stage door after a show once before – when my friend Lauren’s brother Matt Meigs was in town with the tour of Mary Poppins. (Matt is currently performing in Holiday Inn and you should absolutely go and see the show if you are in New York!)

I held back as the crowds cleared the lobby outside the stage door, scoping my best course of action. After a few minutes, it became clear who was still trying to get out of the theater and who was waiting for autographs. I stealthily rolled around the crowd, doing my best to avoid running over toes while gradually inching my way between people until I was at the front, to the right of the stage door. I was just in time because once I got into prime position, the door opened and the first cast member walked out.

I waited patiently, preserving my space by occasionally moving my feet from side to side so nobody stepped in front of me. Then Adam came out and was greeted with loud acclaim. I was the first person he saw before people started shoving Playbills in his face. He autographed Playbills for everyone, graciously accepting their compliments and posing for photos as he turned towards me. When it was my turn, I simply smiled and handed over my Playbill as he leaned over and said, “Let me take care of this young lady.” Swoon!

He continued to stand next to me, signing Playbills and taking photos, thanking everyone for coming. I told him there was no way I could move out of his way because of the crowd.  “Oh, no, don’t move. You’re helping to give me space!”

Who said a wheelchair wasn’t useful?! I totally played the disabled card to get to the door, and it worked! When he was done, I moved out of the center of the crowd, which gave him a path so he could get to other people. Free from the crush, I finally brought out my phone and asked for a photo – which is how this came to be.

Selfie of a white man with blond hair and goatee next to a white woman with glasses and brown hair. The pair are smiling and are back-lit by hallway fluorescent lights.

Sure, the lighting is not perfect. But I got a photo! This theater geek is a happy girl indeed.

Sometimes, when we meet the people we admire, we are disappointed because they don’t behave the way we think they will. Or, perhaps they are rushed for time or having a bad day and the encounter is not what we wished for. Yesterday, I had the best celebrity encounter I could have imagined. Adam was kind, generous, gracious and appeared genuinely appreciative of the fans who waited to meet him.

Now, if you’ll excuse me, I’m about to go listen to the Something Rotten! soundtrack yet again to see if I can catch more of those musical references. Feel free to stay and drool over that smile for as long as you like!

Race for Hope 2016

I can’t believe I’ve been blogging long enough for this to be my third post about the Capital Region Special Surgery Race for Hope. If you haven’t read my first two posts on this topic, you can read the 2014 post here, and the 2015 post here. If you want to skip them, here is a brief summary about the race and why it matters to my family.

The Race for Hope is a 5K fundraiser to raise money to support programs and services for patients who are in treatment for brain, head and neck cancer. Our involvement with the race began in 2011 after my sister Mary Jane was diagnosed with glioblastoma, an aggressive brain cancer. My niece Karen, Mary Jane’s youngest daughter, created Team MJ in honor of her mother. Karen first ran the Race for Hope, along with her brother and brother-in-law, in 2011. Mary Jane and her husband, Zip, cheered from the sidelines. Sadly, it was the only time Mary Jane and Zip would see their family run the race as they both passed away from their respective terminal cancer diagnoses prior to the 2012 Race for Hope.

Yesterday, family and friends gathered again in our bright yellow Team MJ shirts. We saw familiar teams – Susan’s Busy Bee’s and Linda’s No Taste Bakers – along with new groups. Runners of all ages completed the course, and this year boasted quite a number of stroller entries. One of the women from Linda’s team said many of their runners were walking with strollers this year.

Although the race venue and order of events remain the same, change is happening because life has a way of moving forward. Team members are having children and using strollers instead of running. Children who used to watch from the sidelines are now walking the race. New shirts are ordered because young ones are outgrowing the shirts they used to wear. New relationships mean new team members.

This year, I spent most of the race with my niece’s children – her three year old son snuggled in my lap and her six year old daughter riding on the back of my wheelchair. Together we danced in the parking lot, visited with dogs, shared a huge chocolate chip muffin, and cheered on the runners while waiting for Mommy and Daddy to finish the race.

In prior years, I have spent at least part of the race shedding a few tears while thinking about how my sister and brother-in-law would be so proud watching their children and grandchildren continuing to honor Mary Jane’s request that they do something for others who are facing brain, head and neck cancer. Instead, this year I laughed. How come nobody told me having a cuddly three year old boy wearing a Yankees cap in your lap was such a good way to avoid melancholy thoughts?! And you would have thought I’d known the enthusiasm of an energetic six year old would be infectious. I think I knew both of these things, but it hit me yesterday how spending time with happy children can improve your mood when you are searching for your own “happy.

Mary Jane knew this. A few weeks after the birth of her granddaughter (the one who spent the day riding around on my chair yesterday), she sent me and my other sisters an email of the following photo with the subject “first babysitting job.”

Hi all – Zip and I spent the afternoon babysitting. What a perfect way to spend the day. MJ

A woman wearing a pink fleece jacket and a blue hat holds a sleeping infant wrapped in a crocheted blanket. They are outside on a suburban street with trees and houses in the distance.

My sister was a smart cookie. She knew how important it was to help others, even when facing your own obstacles. She taught those of us who loved her how to live in the moment, to cherish each and every day. And she understood unconditional love, like the love of a child, was a key to happiness.

So, we continue on, even on the days when happiness seems to elude us. We connect with those we love, and do our best to make life better for those around is. It is what Mary Jane would have done, what she would want us to do.

Because I’m Happy (At Least, I’m Trying)

This year has not been a happy year for me. Sure, there have been moments of laughter and joy. But if you look at the year as a whole, I have been depressed, cynical, sarcastic, moody, and angry. I know I have not been myself and recently I’ve been hit upside the head by what is really happening.

Since my femur fracture in January, and throughout the subsequent months of rehabilitation, I have not bothered with much beyond the basics when it comes to my daily habits. Most days, if I’ve been able to get out of bed, pee, and get dressed, I’ve been content to call the morning a success. Bonus points for the days I’ve managed to shower!

I am not a vain person, but I have been blessed by the hair gods. My hair is thick and pretty much does whatever I ask it to do. Every now and then I find a stray gray, but nothing that makes me want to rush to color it. As I dried my hair on Wednesday while preparing for a work event, I realized it had been at least six months since I took the time to dry and style my hair. Unless you count a pony tail as a style, my hair hasn’t had much of a style this year.

Friends and family know I can be counted on for lipstick. I don’t wear much makeup, but I always have at least four or five lipsticks with me. A few years ago at a family reunion, I provided various shades to all my aunts and many cousins before we took the group photo. Yet, I can count on one hand the number of times I have worn lipstick in 2016.

I love music. There are over 6,000 songs in my iTunes library. I am usually singing or humming, and most of the time I don’t realize it. This always makes for interesting times at work when I am not aware I am singing at my computer while people are trying to do work around me. But since January, I have rarely listened to music. Even sadder, today I realized I have not even opened iTunes on my computer since I moved in August except to download audiobooks from the library onto my iPod.

For the past twenty five years, I have treated myself to new perfume at Christmas. Since 1998, my signature scent has been “Happy” by Clinique. I like the scent because, well, it makes me happy. Friends say it’s “very Dee.” Wearing one spritz per day, it takes me about a year to finish a bottle. Today, I looked at the bottle of perfume I purchased last December and realized I have not worn any perfume this year.

I am an extrovert and draw energy from being around other people. Every time I have completed a Myers-Briggs Type Indicator personality inventory, my scores on the extroversion/introversion scale have been the same – total extroversion, not a single introversion answer. I draw energy from being around other people and seek out social opportunities. I nurture friendships and do my best to connect with others on a regular basis. Some people tease me for having too many friends. Not this year. I haven’t gone out to happy hour since last December. When I have free time, I don’t call friends or seek out opportunities for socialization.

These observations made me realize I am falling back into the trap of withdrawing from the world and nurturing my relationship with grief. I have a comfortable relationship with grief. I stoically cultivated it four years ago as I trudged through the “year of funerals.” Fourteen funerals in thirteen months can do that to a person. I became good at sitting alone with my thoughts, ignoring the habits which bring me joy and make me feel nourished and alive.

I’m walking down that path again now and I need to turn back before I go any further. This year, I am not grieving the loss of loved ones or friends. Rather, I am grieving a further loss of independence and mobility due to my injury, the loss of my ability to manage daily pain to a level which does not interfere with my daily routine, the loss of my ability to drive independently, and the loss of trust in some of my Personal Assistant staff.

When I am mired in grief, my daily habits change. Priorities shift. I compromise, trying to balance what I would like to do, what I need to do, and what I actually have the energy to do. Instead of practicing daily gratitude, I engage in destructive list making. I expound on all that is negative, ignoring all the good still surrounding me.

Today, I pledge to make a shift in my daily habits. I will resume my daily writing. I will start wearing perfume and lipstick again. I will practice daily gratitude. I will schedule time with friends and reach out to those I have been avoiding. I will enroll in that writing class I have been considering. I will submit that essay I have been working on. I will sing songs that always make me happy.

Because sometimes when you pretend to be happy, you find out you really are happier than you think you are. And Straight No Chaser singing one of my favorite songs really does make me very happy.

 

Getting Lost

I have always loved to read. Some of my earliest memories involve books. My mother and older sisters frequently read to me when I was a toddler. I often say they taught me to read before I started kindergarten just so they wouldn’t have to listen to me pleading in a whiny voice.

Will you read to me?

You can ask them if it’s true. I suspect it might be.

As a child who found it difficult to walk and impossible to run, reading allowed me to explore the world. I would sit on the floor in my parents’ living room listening to the “Greatest Classical Composers” albums (we had the entire set) while reading about Tchaikovsky, Mozart, Bach, and Beethoven. Beethoven amazed me then as much as he does now. Imagine hearing the Ninth Symphony in your head and not being able to hear the performance as you conduct it? I would memorize trivial facts as I read. These will help me if I ever succeed in becoming a contestant on Jeopardy!

When I was in the third grade, Mom and I read the Little House on the Prarie series by Laura Ingalls Wilder each night before I went to bed. We would alternate the reading responsibilities. Mom would usually fall asleep when I was reading, which allowed me to get an extra chapter or two completed before she awoke with a start.

It is easy for me to get lost in a book. Once I start a compelling story I can stay with it until the end, ignoring food, responsibilities, and other people. In high school, I did not have much time for free reading during the school year. However, each summer I spent many hours in the sunshine, my face buried in a book because Mom questioned me if I spent too much time inside.

“How long are you going to sit there reading? Can’t you see it’s beautiful outside?!” 

Inevitably, this would make me take my current book out to the backyard or garage. Mom complained less about me spending the day reading if I was outside.

I blame my sister Caroline for my love of a good spy thriller. I stole her copy of Robert Ludlum’s book The Bourne Identity the summer after ninth grade. I was hooked. As soon as I was done, I checked out every Robert Ludum book in my little hometown library. They were my escape. In those pages, I visited the world beyond my little town – France, Russia, England, and more. Is it any wonder I wanted to be an exchange student and explore the world?

I discovered Frederick Forsyth during my year as an exchange student to Australia. My first host family gave me a bedroom with a full bookshelf. One rainy Saturday morning, alone in their house, I opened The Day of the Jackal after breakfast and quickly found myself lost in the story of an assassin’s attempt to murder Charles de Gaulle. I didn’t emerge from France again until my host parents returned home for dinner. That night, I questioned them about Europe, the reasons they decided to leave their home in Holland, and why they chose Australia. Reading fosters cultural growth and informed conversations.

Although I love spy thrillers, I get lost in other genres too. For several years, the Harry Potter books served as my “I’m-reading-all-day-leave-me-alone” books. I was one of those adults who eagerly bought my copy as soon as I could, although I never waited up to buy one at midnight. I do have standards.

In 2005, I purchased my copy of Harry Potter and the Half-Blood Prince as soon as it was released on July 16. I was unable to read it right away though. I was hosting the Ms. Wheelchair America pageant here in New York, and the contestants were arriving. I was surrounded by people reading the book throughout that week – pageant contestants, their families, volunteers, other hotel guests. I avoided spoilers and begged everyone to stop discussing the book whenever I was around. The book was my reward for making it through the week of the national pageant. That following Saturday, I started reading at 7:15 AM and stayed lost in Hogwarts and the Ministry of Magic until I finished the book at 12:40 AM Sunday. I collapsed exhausted on my pillow, as if I had been running from Lord Voldemort along with Harry, Ron and Hermione.

This weekend, I devoured my latest “I’m-reading-all-day-leave-me-alone” book, The Black Widow by Daniel Silva, the latest in the Gabriel Allon series. I have read all sixteen books in this series, so starting the most recent one is like becoming reacquainted with an old friend. There is the art restorer/master spy and his loyal team, as well as characters from prior novels. This time, Silva created one of his best villains – a terrorist named Saladin.

These days, I consume most books in audio format so I can accomplish other tasks while “reading.” Yesterday, I turned on my computer and hit “play” after I stirred my morning coffee. As the narrator (the wonderful George Guidall) began, I picked up my yarn and left my apartment for Paris where the opening plot scenes occur. Throughout the day and into the night, I was transported to Israel, Syria and Washington, D.C. Anyone observing me might have seen a woman crocheting in her upstate New York apartment while listening to an audiobook. Truth is, I was following my friends as they attempted to foil a terrorist scheme. I am not going to give any plot spoilers, but listening to this book felt a bit too much like listening to the news at times. The author included a forward to the book to explain how he almost delayed the book release in light of recent events in Europe. I’m glad he did not.

Today I am back to reality. I am attending to my responsibilities – “adulting” as some call it. It would be so easy to get lost in another book. There are four waiting for me on my iPod. But they will wait until next weekend, or the next time I need to escape my life for a day or two.

How about you? When did you first lose yourself in a book? Has it happened recently? What book should I try the next time I want to get lost?