Out of the Mouths of Babes

Friday night was special. I spent the evening with family celebrating my great niece’s seventh birthday. Seven is a fun age, and her party was packed with things a seven year old girl would enjoy – pizza, new clothes for her doll, and a three layer cake covered with pink frosting and chocolate chips.

One of the reasons I enjoy family events is because of the laughter and love we share whenever we are together. Emily, the birthday girl, and her younger brother Evan who is four years old, kept us smiling all night. But it was an exchange that happened early in the party that continues to play in my head.

I was sitting with my sister Sandy when Evan approached us. Like most children, Evan is intrigued by my wheelchair. When he was younger, he was content to simply ride on my lap. Now he is determined to figure out how the controls regulate the various aspects of my chair, such as speed and seat elevation. Standing next to my chair, he displayed remarkable restraint keeping his hands at his side rather than reaching for my joystick. Suddenly, he turned his quizzical gaze to Sandy and this delightful interchange took place.

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

Sandy: Because I don’t need one yet. Maybe someday I’ll have one.

Evan: (looking delighted and excited, and clapping his hands) Then you’ll be twins!

The three of us laughed as Sandy picked up Evan for a hug. The party continued, with pizza, presents and cake. But Evan’s comments stuck with me and caused me to reflect as I boarded the bus to go home.

At four years of age, Evan already knows that a wheelchair is a cool piece of equipment. He does not view me with pity. He does not perceive a wheelchair or a disability as being a Bad Thing, with a capital b and capital t as said by the late, great Stella Young. Of course, he doesn’t understand all the intricacies of life with a disability because he is just four years old. But he understands critical information other nondisabled adults seem slow to grasp, such as:

  1. I am my own person.
  2. My wheelchair is not the worst thing in the world, or a reason to shy away from me.
  3. I do not have a poor quality of life.
  4. I am capable and competent.

Evan is not unique in his abilities. All of my nieces and nephews, and now their children, have been exposed to my wheelchair and my disability their entire lives. They have all developed a level of disability cultural competency through their interactions with me, a disabled family member. This has created a level of comfort with disability at a young age in many of them which their peers may not have developed.

When I am with my young family members, I don’t hear negative comments about disability. I don’t hear pity. I don’t hear insensitve or ableist comments like the ones I hear from strangers on a regular basis, such as:

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

You’re so pretty for someone who uses a wheelchair.

Oh, you work?!

And my personal ‘favorite’…

I don’t know how you manage. If I had to use a wheelchair, I’d kill myself.

My young family members who have been exposed to my reality as a disabled woman say different things. They say things like:

That man has a red chair like Aunt Denise’s!

Maybe you could drive us to skating when you get your new van Aunt Denise.

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

If my young nieces and nephews can understand disability is not the worst thing, why can’t more adults figure it out?

A wooden boardwalk extends over water. The side railings are shades of green and yellow. There are mountains in the distance under a partially cloudy sky.

Saying Yes

I was born with a progressive neuromuscular disease. When I was diagnosed at age three, doctors could not predict how long I would walk, when I would need to use a wheelchair, or even how long I would live.

My parents chose to raise me as a person with capabilities, rather than limitations. Sure, there were activities I could not do. This did not excuse me from chores I could perform, such as washing and drying dishes, or setting and clearing the table.

I was raised to be an optimist – to look for possibilities when others might see challenges, solutions when faced with barriers.

They were shaping what would become my manifesto.

I left my small upstate New York hometown on August 16, 1990, to live for a year as a Rotary Youth Exchange Student in Tasmania, Australia. Thousands of students participate in this international exchange program each year. However, I was one of the first disabled students to successfully complete an exchange year through Rotary International, and the first wheelchair-using student in the program.

Living on the other side of the world for ten months as a teenager taught me important lessons about tolerance, culture and advocacy. But the most important lesson came from advice I received the night before I left home when our neighbor, Doctor Kenneth “Doc” Benson, DVM, came over.

Denise, you are going to be invited to many events this year. You will have lots of opportunities to see new things and meet new people. Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

Say yes. Do it all.

During my exchange year, I said “YES!” to every invitation. I went to dinners, barbecues, parties, sailing trips, basketball games, museum tours and concerts. I traveled from the island state of Tasmania to mainland Australia three times. I toured Tasmania with fifteen other exchange students and then toured mainland Australia with eighty-four exchange students. It was one of the best years of my life.

By the time I returned to the United States, saying yes had become a way of life. I have a wealth of stories to tell because I chose to say yes when others may have said no.

Want to go for a spur of the moment ride to New York City on Saturday rather than sit in the dorms? Sure!

Travel to Rhode Island to watch the local hockey team win a play-off game on the weekend of college graduation? I’m in!

Enter a national competition for women who use wheelchairs? Why not – sounds fun!

Sing at an event in Washington, DC on the eve of a predicted snow storm even though you might get snowed in? It would be an honor!

As my physical capabilities have declined, it has become more challenging to say yes. I still say yes as often as possible, but doing so now requires more effort and planning. In 2014 when I was asked to return to Australia to speak at a 2015 conference, I said yes on instinct without thinking. Thankfully, I had a year to prepare. It took months of research, planning and the assistance of many to make the trip a reality.

Living with disability makes saying yes an exercise in problem solving and strategic thinking. Yet, it is not impossible to say yes even when one relies on others for personal care assistance.

I have required more assistance for over a year due to a sharp decline in my abilities following last year’s femur fracture. I have not been able to drive independently for months, and may not be getting a new van until the end of this year. I have been constantly recruiting and training new Personal Assistants to meet my basic needs. It has been one of the most challenging periods in my life.

It is tempting to just withdraw while I wait for more independence. I have not always wanted to say yes because sometimes it is just easier to say no. It takes less effort to say no. It costs less time and money. It is less stressful.

Whenever I feel like saying no, I am transported back to the summer of 1990. I am sixteen years old again, about to leave for what will end up being the most influential year of my life. I hear Doc’s voice once more in my head and I am reminded that I have no regrets about missed opportunities.

Whatever happens, say yes. Do it all. You never know if you’ll get another chance.

The next time you find yourself faced with opportunity, give yourself permission to say yes. It may not be your first instinct. It may not be easy. It might take planning and preparation, and even then it may not be worth it.

But you won’t know until you try.

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?

Mission Accomplished!

For the past five months, I have posted rehabilitation updates on my Facebook feed as I reached rehabilitation milestones. I have been overwhelmed by the support and encouragement from hundreds of friends whenever I shared a progress report. Yesterday, I shared an important update – one I was not confident about achieving back in January when my former personal assistant dropped me and I fractured my femur

Rehab update: I have been discharged from outpatient physical therapy (PT)! And my sitting left knee flexion is 90 degrees! Without pain! 

Yes, I have been discharged from outpatient PT! The range of motion in my left leg has improved dramatically from January. Although pain is still a frequent companion, it is less debilitating than it has been in months. My tolerance for physical activity has increased. I have lost twelve pounds since my discharge from the rehabilitation hospital in February.

Do I sound like I’m bragging? I AM!

On January 11, while sobbing on my bedroom floor waiting for the ambulance, I knew I had sustained a life changing injury. When you live with a progressive neuromuscular disease, you know these types of events can strip you of independent mobility and function. It has happened to me in the past, and I was fearful of how this incident would impact my daily life.

I knew recovery would be a long, painful process. I was not wrong. There have been countless times when sudden pain caused instant tears and furious outbursts of expletives. Rehabilitation has been tough, and certainly not pretty. I have been cranky, moody, short-tempered and brusque with those who love me. I have snapped at family members who offered assistance, and pushed away well-meaning friends because I didn’t have the energy to be social.

But I am not a quitter, particularly when an orthopedic surgeon who doesn’t know me well tells me I will never do something again. Those who DO know me understand the best way to get me to do something is to tell me you doubt my ability to get it done.

And I don’t know how to fail with humility and grace. If I set my mind to do something, I stubbornly persist until I have accomplished the goal.

Back in January, I could not predict how long it would take me to get to this point or if I would ever get to this point. Yet, somehow I have made significant progress and my therapists feel I can be set free to continue rehabilitation without their assistance.

I WILL continue my rehabilitation program even though I have been discharged from PT. I know it is working. I see it in my movements and feel it in my leg strength. I have worked too hard to stop now. The scary truth is this injury may have finally created what physical therapists have tried to create since I first started PT as a child back in 1978 – a Denise who voluntarily engages in and enjoys routine exercise.

Current status: Relaxing with a gin and tonic while shopping online for a cute bathing suit in a smaller size. 😉

 

 

On the Road Again

One of the biggest hurdles in my recovery from my broken femur has been driving. I drive an adapted minivan, a sleek silver vehicle I have named Clyde. Clyde has a ramp which allows me to drive my wheelchair in and park it where the middle row of seats would normally be. My driver’s seat is mounted on a transfer seat base which allows it to swivel. I slide out of my wheelchair into the driver’s seat, rotate the seat to the front, slide forward, and drive. At least, that is how the process has worked for the past fourteen years until my orthopedic surgeon restricted me from putting weight on my left leg after surgery.

Since February I have worked in physical therapy to regain strength and function with the goal of being able to independently transfer in and out of my driver’s seat. My apartment is located in an area not served by our local public transportation. The disabled paratransit service does not come to my apartment as I live too far from a fixed bus route.

If I cannot independently drive, I have three options. I can ride as a passenger in my own van while someone else drives. I do this when I have to, but I am a terrible back seat driver in my own vehicle. Another option is to have someone help me get in my van at my starting location and someone else help me get out of my van at my final destination. Or, I can have someone accompany me every time I need to drive somewhere.

I have used each of these methods to remain employed and engaged in my community, and I am appreciative of the friends and family who continue to assist me. But when you are used to the having the ability to get up and go whenever you want, scheduling your activities around someone else is limiting. Like most people who have been driving for decades, I am used to the freedom of movement which comes with the privilege of being a licensed driver who owns a vehicle.

In early April, I reached an important rehabilitation milestone when I successfully transferred in and out of my driver’s seat. I required assistance, but I did it! After a few practice sessions, I began to drive around my neighborhood. Within two weeks, I was driving to and from my office once or twice each week. My knee protested from time to time, and realistically I was unable to drive for more than 45 minutes at a time before the discomfort became too much of a distraction. But I was driving!

Behind the wheel for the first time in April.
Behind the wheel for the first time in April.

This past Tuesday I reached an important milestone when, for the first time since January, I transferred into my driver’s seat and put on my seatbelt completely independently! It took me a good five minutes, and there were a few choice words flying out of my mouth from time to time, but I did it!

I still require assistance to get out of my driver’s seat and get back into my wheelchair, so I am not completely independent with driving. I don’t know if I will reach that status given the changes in my leg. This may be as far as I get with my rehabilitation when it comes to driving. I plan to make the move to driving from my wheelchair using hand controls within a year, so I just have to find a way to function until then.

For now, I know if I had to get somewhere in an emergency, I could get in my van and go. I might not be able to get out when I get there, but that’s a problem for another day.

My experience has given me a new perspective on the transportation difficulties people with disabilities face on a daily basis, particularly those who live in suburban or rural areas. I have not been as strong of an advocate for transportation as I could be. I plan to change that going forward. The push for community living can only be successful if people have access to their community and accessible transportation is a crucial component of independence.

In the days immediately following my discharge from the rehabilitation hospital while I was relearning how to function at home, I wondered if I would ever be able to take a road trip and spend the night anywhere other than my apartment. I enjoy traveling and the prospect of not being able to explore the world was frightening and depressing.

This is Memorial Day Weekend in the United States, the unofficial start of summer. I have spent every Memorial Day Weekend in my hometown except the year I was an exchange student and the year I was in the hospital after my gallbladder surgery. I was determined to find a way to make it home this weekend. Once I transferred into my driver’s seat on Tuesday I knew it would happen.

Yesterday I drove my van down the highway in the bright sunshine. I rolled down the window, cranked the music and sang the songs from my “move it” playlist with the wind blowing on my face. As I rolled to a stop at the end of the exit for Bainbridge, I couldn’t help smiling in triumph.

Sure, there is more work to do in my journey towards independence. But this weekend, I am content to be on the road again.

Happy Birthday Mary Frances!

Today is National Teacher’s Day. My life has been enriched by many teachers through the years. I would like to thank them all for helping to shape me into the woman I am. But I would especially like to express gratitude to a new friend – a teacher who taught me important lessons of perseverance and strength this year when I was facing new challenges.

I met Mary Frances shortly after my arrival at Sunnyview Rehabilitation Hospital on January 27. I was sprawled on my bed, waiting for the next doctor to assess me, counting down the hours until I could take more pain medicine. The nurse was attempting to make my broken leg more comfortable by rearranging the pillows while giving me information about the unit. She looked up as a woman was wheeled into the room saying, “And here’s your roommate, Mary Frances.”

Hello. How are you? Welcome to rehab.

The sonorous voice modulated in pitch and prosody, the syllables elongated – a technique I used to teach my clients when I worked as a speech-language pathologist. Mary Frances sat regally in her institutional chrome wheelchair, feet firmly planted on the foot pedals. Her slightly askew smile lit her face and the twinkle in her eye told me we were definitely going to cause a ruckus together.

My years of employment in a variety of healthcare facilities gave me multiple opportunities to observe the social interactions between patients and their roommates. The right roommate can make or break  your rehabilitation experience. Negative roommates or those who complain nonstop can make recovery more taxing for the people on the other side of the curtain.

Mary Frances was the best roommate I could hope for. She was optimistic, intelligent, determined, and talkative. We bonded quickly as we shared our respective stories. Mary Frances was recuperating from a stroke which had affected both her fine and gross motor skills as well as her speech and language. Like me, she was learning to do everyday tasks a new way.

The two of us connected over the silliest rehab moments – things which were incredibly meaningful to us but perhaps not to an outsider. She was seated on the other side of the curtain the first time my occupational therapist and I attempted to use a slide board to transfer me onto a bedside commode. I can only imagine what we sounded like as we struggled to find the right positions and hand holds. When my session was over, mission successfully accomplished, I saw that same gleam in her eye as she congratulated me.

You peed on the potty like a big girl! 

Each night, we watched Jeopardy! together. Mary Frances didn’t mind me blurting out the answers to questions. A former teacher, she did well on the literature and history questions. She also beat me on most of the pop culture questions, even with her speech delay.

Mary Frances was determined to do her best every day. She challenged herself in her rehabilitation, often working on hand exercises during down time in our room. One afternoon I returned from the therapy gym to find her making faces at herself in a small hand-held mirror. She attempted to excuse herself for what she assumed must look like silly behavior. I laughed at her, and asked to see her speech therapy homework. Thus began our daily routine of extra speech and language assistance. We spoke to Mary France’s speech-language pathologist who agreed extra practice would be wonderful, as long as it reinforced what they were working on in therapy sessions.

Mary Frances wasn’t my client and I knew it was unethical for me to act as her therapist. However, having the opportunity to use my clinical knowledge to help her provided a reminder that I was more than just a patient. At night when we practiced conversation repair, word finding techniques or facial exercises, I was able to escape from my own pain and injury for a brief time. I felt better because I was helping a friend who was making improvements each day.

Patients at Sunnyview are welcome to move independently about the facility as long as they have been cleared by therapy and nursing. Once cleared, you are given a green wrist band to indicate your freedom of movement. Not knowing this rule, I had been wandering the halls for two days before receiving my green tag. Mary Frances received her green tag a couple days later. We would go down to the cafeteria together for real coffee (Starbucks, not the kind they sent to our rooms on the morning trays). If she was too tired to wheel herself down the carpeted hallway, I sat closely alongside her so she could grab my handlebar, giving her a tow with my power wheelchair. Staff laughed at us before they realized they probably shouldn’t encourage this behavior. We ignored their warnings. Although we worked diligently, we both knew how to be non-compliant at times.

Mary Frances was self-conscious about her oral weakness and took steps to eat without drooling her food and beverage down her clothes. A few days before her discharge, we sat in our room eating roasted peanuts. Mary Frances concentrated all her energy on using her weaker hand to pick up the individual nuts and put them in her mouth. I asked Mary Frances if I could write about her and our rehabilitation adventures on my blog. She stilled her hand, swallowed her mouthful, and thoughtfully gave me verbal consent. I thanked her, then made a comment about how well she was doing eating the nuts without drooling.

Survivors adapt. Other people drool. Put that in your blog!

Survivors adapt. Two simple words with a meaning much more complicated and nuanced.

Thank you Mary Frances for helping me adapt to my new normal. Your encouragement and optimistic support made my rehab journey fun, something I never considered as a possibility. I am grateful for your friendship and so happy we have kept in touch. You continue to inspire me with your progress and improvement.

Today is Mary Frances’ birthday. She is celebrating with family, something she was not certain would be possible while we were together at Sunnyview. Happy birthday Mary Frances – may your day be full of love and laughter.