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.

The Citrus Peeler

This past weekend I sobbed because of a citrus peeler.

You’re right. It really wasn’t the fault of the peeler. But the sobs snuck up on me when the peeler was in my hand, so it’s a convenient excuse.

Wait, you don’t know what a citrus peeler is?

A citrus peeler is a plastic tool used to help peel citrus fruits. I know, you got that from the name. It has a sharp cutting hook on one end that can be used to slice through the skin of an orange, or in my case yesterday a grapefruit. The other end is a thin, slightly curved, flat piece of plastic which can be used to peel a section of peel away from the fruit. You use the cutting edge to make slices down the sides of the fruit, then peel the sections away with the peeler.

A blue plastic citrus peeler.
My citrus peeler.

Do you need a citrus peeler to peel an orange or grapefruit? Of course not.

However, my father used to swear by his peeler. From the first time he brought one home around the time I was ten years old, he rarely peeled an orange without it. He enjoyed his citrus peeler so much, he bought an extra just in case his trusted peeler broke.

When I was a teenager, Dad would grab his citrus peeler and an orange at night when we sat on the couch to watch Jeopardy! together. We would share the orange while I shouted out answers, trying to beat the contestants. Sometimes, mouth full of fruit, I would frantically wave my hand at the television, moaning when I knew the answer but the contestants got it wrong. Dad would laugh and shake his head.

If you ever make it on the show Neecie, don’t bring any food.

Yesterday, I sat watching a movie, a half peeled grapefruit in my lap, sticky citrus peeler in my hand, and it hit me. I eat fruit this way because of my father. Without warning, the memories of shared snacks came at me.

Grief is sneaky like that. You can be perfectly calm, doing something mundane like peeling a grapefruit, and all of a sudden you find yourself unable to breathe because your insides are being twisted by a crushing vice. I feel as if it waits for you to delude yourself into thinking you’re managing. You’re in your routine, coping as best you can, not mired in overwhelming feelings of loss, and BAM! Like a coiled cobra, grief lashes out and strikes, the venom paralyzing you in a heartbeat.

Which is how I found myself crying over a grapefruit yesterday, holding a sticky citrus peeler. And once the floodgates opened, they didn’t close.

After Dad’s death in December, I knew eventually I would have a melt down. I thought it might happen on his birthday in January. When it didn’t, I thought maybe I’d break down when I next visited his grave. I never expected it to happen on a Sunday afternoon in March while I peeled a grapefruit.

I’m sure it will happen again. I wish I could say that it won’t. But grief doesn’t work in neat, predictable patterns. Next time it may be something other than the citrus peeler. I hope it is, because I’ve cried enough tears over that!

 

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… 😉

Image of blank computer keyboard with the words "BIG DATA" resting on the keys.

I Still Don’t Like This

A year and a half ago, my friend Crystal and I wrote guest posts for our respective blogs about an experiment we conducted on social media. You can read her original post on my blog here, and my post can be found on her blog here.

Both Crystal and I stopped using the “like” button on Facebook to see if we noticed a change in our news feed, or perhaps a change in how we interacted with social media. I have not gone back to using the “like” button since we began our experiment in August 2015. For a year and a half, if I have enjoyed, or disliked, or had a reaction to something in my news feed, I have taken the time to write a comment. Or, I have simply scrolled on by if I felt no real need to comment at all.

This change caused me to be more intentional with social media. Instead of my use of Facebook serving as a giant time suck, I now go to the site with the intent to catch up on what my friends and family are doing. I can’t stop using the site since my employment responsibilities include managing two Facebook pages, and I also help administer my Rotary Club’s Facebook page. Last year, I agreed to help serve as a volunteer moderator for the Disability Visibility Project Facebook page. Do I spend more time on Facebook than I probably should? Yes, but I view the site as a tool which can help me maintain connections to friends and family when I might not have time for a phone call and I am too much of an extrovert to give it up.

Then last week my friend Tonia shared an article about Big Data which I read with interest. The article, which was originally published in Das Magazin, described how political campaigns use psychometrics (sometimes called psychographics) for “innovative political marketing.” Now more than ever, it is easier for companies to use a person’s digital footprint to predict how that person will act in a given situation. I don’t claim to understand all the research, but it makes sense that data gleaned from a person’s social media feed or digital activity can be used to make predictions about that person.

For example, if you were to look at my “saved” files on Facebook (which I use to bookmark articles I want to read when I have time), you would find articles from the Washington Post, New York Times, The Guardian, and several websites for media outlets such as PBS, NBC News, and ABC (Australia, not America). You would also see blog posts related to writing and crochet, and many disability blogs. A scan of my saved articles indicate about fifty percent of them relate to disability, twenty-five percent relate to writing, and the rest are a mix of articles about crochet, baking, musical theater and dealing with grief.

Based on just this information (remember, I have not provided any “likes” to analyze), one can fairly accurately predict I pursue writing, and that either I have a disability myself or am very active in disability circles. My hobbies (baking, crochet, and musical theater) are apparent. It’s no wonder that ads for Broadway HD show up with regularity in my news feed!

But, how are all those data points used by others? What else do I see because of assumptions made by analysis of my digital footprint? Which articles are placed in my view based on my social media activity? Would it change if my online behavior changed? I will admit, I never noticed a significant change in what I saw on Facebook once I stopped using the “like,” yet it’s possible there was a difference I just didn’t observe.

Do I think I have some semblance of privacy because I choose not to use the “like” button? Of course not. My smartphone acts as a transmitter, giving apps various information such as my location, how often I travel certain routes, what I search for on Google, and how often I win or lose at Words with Friends. Sure, I could opt out of using my phone as often or restrict certain apps to gain more privacy. But I use my phone to help me manage my personal assistant staff which limits my ability to disconnect.

For now, I will continue to steer free of the “like” button. I will also probably stop taking online quizzes – because how many times do I really need to prove I am an extroverted word geek who has a vast knowledge of show tunes? I think I’ve provided enough evidence of this to Big Data, especially since I just aced the “name the musical movie from one screen shot” quiz.

How Do You Measure a Year?

My world changed a year ago on January 13, 2016. That was the day one of my former Personal Assistants (PAs) did not follow my instructions, resulting in her dropping me to the floor during a transfer and fracturing my left femur.

I’ve written many posts about my progress this past year. I explained how it all happened in this post, then provided an update from the rehabilitation hospital in this post. I blogged about my transition home, and the challenges I faced as I struggled to prioritize my needs as I continued to heal.

There have been many gains this year. After months of therapy, I was able to successfully transfer into my driver seat in my van in April. Granted, performing that transfer requires such a high amount of my limited energy so I only drive when absolutely necessary. And I still can’t independently transfer back into my wheelchair when I arrive at my destination, which means I must have someone meet me so I can get out of my van.

That’s not entirely accurate. I CAN transfer out of my driver seat if I am parked on an uphill incline. Gravity still works, and when parked uphill, it gives me a boost when I slide back to my wheelchair. However, if I’m parked on an uphill incline, I can’t get back into my driver seat so I can drive back home. Stupid gravity – who said it was a good thing?!

I am still pursuing a new vehicle which will be modified with a high tech driving system. This will allow me to drive while seated in my wheelchair. The evaluation process is stalled for the moment, thanks to matters that deserve and will get their own blog post. But, eventually I will be fully independent for driving again and it WILL happen in 2017.

Five hundred twenty-five thousand six hundred minutes. Anyone who is a fan of the musical Rent, written by Jonathan Larson, knows a year contains 525,600 minutes. But as the opening song in the show tells us, time is just one way to measure a year.

I can measure the past year in the number of hospital admissions (2), the number of new internal permanent screws in my leg (8), the number of new PAs I’ve hired (4), the number of months absent from work (4) and the number of address changes (1). I can also measure the number of new great nieces and nephews born (2), the number of visits with my best friend (5), the number of blog posts (72) or the number of funerals (thankfully, only 1).

But when I think about this past year, the one word that keeps repeating itself in my head is the one thing Jonathan Larson encourages us to measure most – love. This year, I have been blessed to be the recipient of so much love from friends, family, and readers. When I first started writing about my fracture and rehab, I received cards and letters from around the world. I had at least five visitors every day for the month I was hospitalized. People called, sent Facebook messages and Skyped when I was unable to leave my house.

Although I need assistance every day in order to survive, I am bad at asking for it. I would rather do just about anything else than ask someone to help me when a PA has called in sick or has quit. However, this year I had to repeatedly ask the people in my support network for their assistance and you know what happened? Almost 100% of the time they said yes! Whenever I asked for help, I received it. If that isn’t love, I don’t know what is.

So while 2016 was full of more challenges than I’ve had to face in quite some time, it was also full of love. I’d rather measure the love.

I searched for a good video of this song and was overwhelmed at how many hits came up. Then, I stumbled on this one with ASL interpretation and knew this would be the one to share.

Sister Email

I am the youngest of Sam and Dolly’s six daughters. “The sisters” are the women I turn to for support, guidance, affirmation, information, and love. Susan, Mary Jane, Donna, Sandy and Caroline (and I suppose I need to include me too) all bring unique insights to every situation, even though we come from the same background. Each of us have different strengths and skills.

For example, if you want all of the sisters to know something, tell Sandy. She is a pro at disseminating information in a timely and efficient manner. If you want something organized – a party, your pantry, your dining room table – call Susan. If you want a laugh, just wait until you get the perfect birthday card from Donna. I truly don’t know how she does it year after year. Caroline, or “Crinnie” as we call her, is a pro at crafts and makes the best jams and pickles. And Mary Jane was always honest but never in a spiteful or mean way. As for me – well, I’m good at public speaking and explaining medical information in a crisis. You’d have to ask the others how they would describe me.

Over the years, we have adopted different technologies to stay in touch. For several years, all of us except Crinnie communicated by sister emails. Someone would start a note to the rest, and everyone would respond as time allowed over the course of a day or two. There were several emails which ended, “Now if only Crinnie had email we would be all set! I’ll call her to let her know what’s going on.” One of us would pick up the phone to pass along the latest and then respond to the rest of the group with any new input.

Around 2009, Crinnie joined the new century when she got the internet at her house. She quickly learned how to connect to email and ‘reply to all.’ Within a few weeks, she had learned about emoticons. “I can put a smiley face in, too. Aren’t you all impressed? :-)” Of course we were.

Sometimes the sister emails are used to coordinate sister gatherings. The flurry of notes planning our annual DiNoto Cookie Bake, held at Crinnie’s house on the last Saturday in November, occasionally starts in mid-October. The emails include a list of needed ingredients and our assignments, along with locations of good sales. We should be getting an update from Crinnie any day now.

These days, most of our messaging is done via text. A sister, usually Donna because she is an early morning person, will start a conversation early in the day about a topic. The rest of us will chime in as we are able. Even if we are replying to just one sister, we reply to all and it is up to the recipients to know when a sister is talking directly to you. Often, the topic will change without warning. I often say these strings of texts would make for an interesting study in sister dynamics to an outsider who is not familiar to us.

To illustrate, I offer you this actual series of texts from July which started with a question about chocolate crinkles. Hey – we’re cookie bakers. What did you expect?

Susan: I read the recipe for chocolate crinkles on Sandy’s blog. Then I checked my recipe. Maybe I copied wrong all those years ago, but I only use 1/4 c of oil, not 1/2 c.

Donna: My cookie book recipe calls for 1/2 cup

Me: I’ve never made crinkles.

Donna: (Photo of crinkle recipe in cook book) Some batches are better than others, don’t know why.

Donna: WHAT!!??

Susan: Try using 1/4 cup of oil!

Me: Never. Mare always made them so I never did. Sara makes them now, so I don’t!

Donna: I will because sometimes the dough feels soft, even after having been in fridge overnight.

Donna: Good for you Denise.

Susan: I made some tonight and rolled them in granulated sugar because I felt they would be too delicate to transport if I used confectioners sugar. They reminded me of those chocolate Archway cookies.

(Archway is a brand of cookies which were sold in the store my father managed)

Donna: And they are yummy! The Archway cookies. Remember the guy that rented the garage from dad?

Susan; Yes. And he was reported to the police by a busybody neighbor who thought it was illegal or some sort of Mafia activity.

Donna: Seriously? I don’t remember that, funny.

Susan: True. Because the delivery truck came at night. I remember the police coming to the house to talk to Dad. I’ll ask him on Friday. I’m going to take him up to the VA hospital.

Me: I remember “helping” George, the Archway man.

Donna: That’s his name, was trying to remember. Going to bed, will be in touch.

Sandy: Betty Crocker recipe online uses 1/2 cup. Tried to send link.

Sandy: Yes. Chief Payne asked Dad what was being delivered there. Dad asked him, ‘What do you think?’

Sandy: Dad told him if it was anything more he’d be driving a nicer car!

Donna: Too funny. Dad really does have a good sense of humor.

Crinnie: You’re baking @ 9:00 PM?

Susan: Yes!

Sandy: I was baking at 9 PM too last night. Tried a new lemon butter cookie. Tried to use a cookie press but it was a disaster so I rolled cookies out.

The discussion continued for the next week, although in between we talked about Mom’s skin tear, Dad’s appointment, the aprons my sister Donna made us, and the truck my brother-in-law drives for work. Then, two weeks later we got this message from Susan:

You know the old rule – always be sure you have all the ingredients before you start. Well, I ran out of vanilla so I added mint extract to the chocolate crinkles. Very yummy!

This just goes to prove that all the people who ever said the DiNoto girls never finish a conversation are wrong! It may take us weeks to circle back to our original topic, but we DO come co a conclusion. Eventually.

I Wonder about Dwayne

Each November when I was younger, my mom would tell me about her experiences in 1963 on the day of President Kennedy’s assassination. She kept newspapers from the day, and told me it was the kind of event that caused an imprint on your brain.

When something like that happens, you always remember where you were and who was with you.

Fifteen years ago, on the morning of September 11, 2001, I had an appointment to have some car repairs completed at 8:00 AM. My plan was to have the work done early that morning so I could make it to work by 10:00.

I sat in the lobby of Warren Tire in Waterford, NY, listening to the radio while working on the daily newspaper crossword puzzle. Dwayne was behind the counter, answering the phones and asking me more than once if I wanted a cup of coffee. Just before 9:00, the radio station interrupted the music with a special news report.

Dwayne and I looked at each other in wonder. Almost in unison, we said, “Did he just say a plane hit the World Trade Center?”

Dwayne dove for the television remote. We watched in horror as the picture came up. I reached for my phone to call my student intern. Just as she said hello, Dwayne and I watched the second plane slam into the South Tower.

I don’t remember much of the phone call. I don’t remember when I started crying. I don’t remember the other mechanics coming into the waiting area to watch the television.

I do remember at one point realizing that Dwayne was standing next to me, with his arm around me, holding me as I sobbed. He kept handing me tissues as the tears ran down my cheeks, apologizing if some of them had his greasy fingerprints on them. I might have told him that was the least of my worries.

The rest of the day passed in a blur. In the nursing home where I worked, every common room television was tuned to coverage of the unfolding tragedy. Residents and staff sat and stood around in horror. Very little work was done.

My sister and nephews came to work that night to give me a ride back to my car. As we drove, I stared at the clear blue sky amazed at how strange it was to not see any planes or contrails overhead. The silence in my neighborhood felt oppressive. It was a gorgeous late summer evening but instead of hearing children laughing and playing, there was stillness.

Like most of my friends, I moved through the next week in a daze. I checked in with others to see how they were coping. I went to work every day, but often came home to realize I couldn’t remember anything I had done that day. I watched the news occasionally until it became too much and I started crying again.

In early October, my car was due for an oil change. I went back to Warren Tire. Dwayne was behind the counter, once again. This time we greeted each other as friends. Dwayne wasn’t just the man who answered the phone. He was the one who gave me a hug while we watched a tragedy unfold. We both knew people who had died that day. We both had friends and family who were still suffering.

Our bond remained for the next year. Each time I stopped in, Dwayne and I would catch up on how we were coping, how our friends were doing. President Kennedy’s assassination was my mother’s imprinted event but September 11, 2001 was mine.

A couple years later, Dwayne moved to a new job. Then I found a new job and a new mechanic near my new worksite. Life moved on as it often does.

But every year on September 11, I always remember Dwayne. I wonder how he is doing, where he is now, and how life is treating him. And I always say a prayer of thanks for the comfort he gave me on a Tuesday morning in 2001 on the day the world changed.

Moving Day

When I moved into my apartment, I never imagined I would still be here twenty years later. It was August 1996, and my roommate Stacey and I were excited to start out in our first ‘adult’ apartment. Together we shopped for housewares and established a place where we felt at home.

Stacey moved in and out for the next few years as she progressed through graduate school and the start of her career. When she moved into a place of her own, I first began to think about moving as well.

Life has a funny way of throwing curve balls into our plans. Over the next ten years each time I seriously thought about moving, something happened to prevent it. The end of a serious relationship, a car crash, an injury – many things kept me here.

One of the reasons I stayed was I simply couldn’t find anywhere better for the same cost or less. Affordable accessible housing is extremely difficult to find. Sure, I found many nice places. But as a single woman who must abide by income restrictions in order to be able to receive home care, I could not afford a fully accessible luxury apartment. The places I could afford were not any better in terms of accessibility, and did not solve a major problem – transportation.

Our local paratransit service, which provides transportation to disabled people unable to access the fixed bus route, only operates within .75 miles of a fixed bus route. My apartment is 2.2 miles off the bus route. When I was able to independently drive my van, this was not an issue. Now that I cannot independently drive my van, this is a barrier.

In order to maintain employment and independence, I have to move closer to the bus route. In order to save money for a new van, I must move to a place that is less expensive so I can hopefully save a bit of money for a downpayment on a new vehicle.

Today I am starting the move out of my apartment. Thankfully, my new place is not far away. I will be renting some rooms from a friend who lives down in town. My ZIP code will stay the same, I can keep the same phone number, I can still use my library card. Even more important, my new place is close enough to my current apartment so I do not need to hire a new crew of Personal Assistants.

For the past two months, I have been sorting through my possessions. While I still have some things to toss, my life (minus my bedroom furniture and my computer) is contained in these boxes and bags stacked in my living room.Boxes and bags stacked in rows in an apartment living room.

It is amazing what you find when you start the packing process. Cards from my mother, photos from college and Australia, letters from friends and family, and old research papers have made me laugh and cry – sometimes simultaneously. A few items have been placed in a “keepsakes” box because I know I want to save them, but I don’t have time to go through things right now.

Some finds may well be antiques now. My old Walkman and Discman seem to be in good shape. My mini-cassette recorder, record cleaner and typewriter eraser brought great laughter. The PA who was assisting me had never seen a mini-cassette recorder and did not know what a typewriter eraser was. When did I become an adult with “outdated” possessions? How did that happen?

Thanks to dedicated friends and family, the majority of my possessions are now in my new place. We completed the move before the rain came. All that is left is to unpack and store everything. I did not supervise all the packing, so I imagine there will be some fun surprises.

Although, it will take something very neat to top the Walkman and mini-cassette recorder!

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?

Photo of a waterfall seen through ferns and leaves.

Six Months of Practicing Daily Gratitude

Six months ago, Wednesday, January 11, at this very moment, I was writhing in pain on a gurney in the emergency room at St. Peter’s Hospital waiting for the results of my x-rays. I was trying not to snap at my sister Sandy, alternating between bursts of crying followed by deep breathing. Every fifteen minutes or so, when she would try to tell me to calm down and not think too far ahead, I tried to ground myself with a gratitude list.

I am not alone.

You are here with me.

They finally got an IV started.

The orthopedic intern is cute. Cocky and arrogant, but cute.

I am not in a coma.

They brought me a warm blanket.

I can feel my feet.

That was the list. I kept repeating variations of it throughout the evening as we received confirmation of my broken femur and I was admitted to a bed on the orthopedic unit. The list grew throughout the night. I was grateful for surviving the transfer from the gurney to a hospital bed, a roll on and off the bed pan, and the manipulation of my leg into an immobilizing splint. I doubt I adequately conveyed the depth of my gratitude to Sandy for her willingness to spend that first night with me and adjust my bed every 15 minutes. The hospital was unable to locate bed controls I could operate independently, so Sandy pushed the buttons on command as I begged her to raise and lower my head and feet, adjusting pillows along the way.

I am not alone.

You are here with me.

My feet are warm.

The pain meds are working.

I am not in a coma.

I only broke one leg. Can you imagine if they were both broken?!

Over the next 2 days while I waited for surgery, the list changed. I was grateful to several nurses, but after four failed attempts I was especially appreciative of the fifth nurse who tried to insert a catheter into my bladder around 10:30 PM Thursday – the one who FINALLY got it. I was grateful for my boss, who stopped by to tell me not to worry about work. I was grateful to my friends who came to relieve Sandy so she could get some rest.

I am not alone.

You are here with me.

They are going to be able to do surgery.

I can drink all I want without having to worry about transferring to the bed pan since they finally got the catheter in. Did you ever think I would be grateful for a catheter? Thank God I have a sense of humor.

Thank God I went to Australia last year!

I’ve written about my experience with rehab, and the transition home. I’ve shared my triumphs publicly along the way through my blog and social media- transferring in and out of my van, driving, and returning to work. My updates have been some of my “most liked” posts, garnering many comments along the lines of “Atta girl!” and “Good on ya!” Throughout it all, I kept finding ways to be grateful. Even when I was in the middle of a “this-sucks-and-I-HATE-that-everything-has-changed” self-pity cry fest.

I am not alone.

You are here with me.

I have heat.

There is food in my fridge.

I can binge-watch ‘The Doctor Blake Mysteries’ all afternoon if I want and find out if the good doctor ever finally ends up with Jane.

My job allows me to work from home, for the most part.

Thank God I have an understanding employer.

Six months after the latest event which completely changed everything about my life, I recognize my significant progress. I am thrilled to be driving – yet still remain dependent on others because I cannot independently transfer from my driver’s seat to my wheelchair. I am grateful to have new Personal Assistant staff – but remain distrustful due to recent burglaries at my home. I am excited to see improvements in my knee strength and range of motion – but the chronic pain is exhausting. I realized last week that I no longer complain about pain in any other part of my body. I don’t even notice pain anywhere else anymore because it doesn’t compare to the pain in my knee. That’s not because I’m taking pain medications. I mentioned the burglaries, right? Guess what was stolen?

The biggest hurdle is my inability to access a toilet outside my home. Since I am still not weight-bearing on my broken leg, I cannot perform a stand-pivot transfer from my wheelchair. I use a slide board to transfer on and off the toilet. The board I use, combined with my limited trunk control, requires me to transfer on/off a platform seat. I wrote about this when I described transitioning home from the rehab hospital in this post. Since the only toilet I can use is located in my house, I am limited in how long I can be away from home.

Think about the number of times you use the toilet throughout each day. Now, imagine you have to return to your house every time you need to use the toilet. It doesn’t matter if you have a meeting, or a lunch appointment, or plan to volunteer somewhere in your community. Now, imagine you not only need to return home, but you need to have a nondisabled person at home with you every time you need to use the toilet. Then, imagine you are a menstruating female and think about using a slide board while you are bleeding for five days each month. Or, transfer onto your bed to use a bed pan.

Too graphic? Sorry – but it’s reality. And reality is not pretty. It’s messy and complicated. Life is like that for everyone, not just those of us who live with disability.

It is the main reason my gratitude lists “post femur fracture” are particularly important now. Because when I am stuck in the middle of of a “this-sucks-and-I-HATE-that-everything-has-changed” self-pity cry fest (and there have been lots of those these past six months), one of the only ways I know to pull myself around is to force myself to grateful. I don’t have to be grateful for the pain, or grateful for the fracture which is giving me plenty of life lessons and fodder for writing. I just need to concentrate on the start of my list, the same two lines I use to start every gratitude list I make.

I am not alone.

You are here with me.

Strength is not found in the number of repetitions performed during an exercise routine. It is not described in the extra degrees of range of motion measured during a physical therapy re-evaluation. The strength to endure comes from knowing the burden is carried by more than your own shoulders. The strength to persevere comes from understanding we don’t have to face our latest challenge alone.