Strengthening My Advocacy Muscles

I have never considered myself a political activist. Sure, I have advocated for causes I believe in and participated in legislative visits and meetings with my elected officials. But I have not attended rallies or marches. I have never chained myself to an escalator or thrown myself in front of inaccessible buses, like other disabled activists I admire and respect.

However, because of my job and my situation as a Consumer who uses Consumer Directed Personal Assistance to remain independent in the community, I am in a unique position to speak to the importance of adequate wages for home care workers. Last Tuesday, Bryan O’Malley, the Executive Director of the Consumer Directed Personal Assistance Association of New York State, and I spoke about this issue with Liz Benjamin on Capital Tonight, a political news program broadcast statewide in New York on Time Warner Cable. You can watch the interview by clicking on this link.

Then, yesterday I did something I have never done. I gave testimony at the New York State Assembly Hearing on Home Care Workforce in Albany. The hearing, which was held by the Assembly Committees on Health, Labor, Aging and the Task Force on People with Disabilities, brought together people from licensed home care agencies, state and county offices of health and aging, managed long term care plans, fiscal intermediaries, unions, home care workers and Consumers. Over thirty people spoke at the hearing, which went on for more than ten hours.

I was the first Consumer using home care called to speak at yesterday’s hearing (there was a hearing in New York City last week). Some of my friends have asked me  about my remarks, and since they will now be part of the public record, I am happy to share them here. You can find them below.

As I sat and listened to the many speakers yesterday, I noticed some consistency among the comments:

  • Recruiting good home care staff is a challenge around the state, particularly in rural areas where the distance between Consumers may be 15-20 miles.
  • Many elected officials still don’t have a clear understanding of Consumer Directed Personal Assistance, and why it is a vital option for many people who rely on home care.
  • When home care agencies increased wages for home care workers, they were able to recruit and retain staff. But, since most long term care is paid for by Medicaid, without the state increasing funding, agencies and fiscal intermediaries are not able to support higher wages.

What next? I will continue to work with my employer and with other advocates to make sure the Consumer voice is heard. We must ensure that legislators understand when they are talking about this matter, they are talking about real people, with real families and jobs, with real needs. I raise my voice because I know I have peers who may not be in a position to be able to speak out.

For those who are interested in my testimony, here is what I said yesterday at the hearing:

My name is Denise DiNoto, and I live in Waterford. For the past 10 years, I have managed my home care services as a Consumer through the Consumer Directed Personal Assistance program. I am here today because of the difficulties I face ensuring I have adequate staff.

As a Consumer, I get to be the “CEO of me,” in charge of personnel. I recruit, train, supervise and manage the staff I hire to be my Personal Assistants, or PAs. As their employer, I am given the maximum amount of independence, allowing me to live independently. Because I have PAs, I am able to work full time, volunteer for causes I believe in, and serve my community as President of my Rotary Club.

My PAs are dedicated, kind and caring workers. They serve as my arms and legs, helping me with every activity of daily living. From 6 AM every day when the first one enters my house until 9:30 PM when the last one leaves, they provide vital services such as getting me in and out of bed, on and off the toilet, showering, dressing, and grooming. They prepare my food, do my laundry and grocery shopping. They open my medications, clean and change my bi-pap supplies, and help me perform daily range of motion and exercises.

Recruiting and retaining staff has become increasingly difficult since I started using Consumer Directed Personal Assistance ten years ago. One of the key reasons for this is the low wage I am able to offer my staff. Some of my PAs have been employed with me for ten years, and have only seen one raise during that time. That is not because they do not deserve a raise. It is because the Medicaid reimbursement to my Fiscal Intermediary has not permitted a raise. Consumer Directed Personal Assistance is a Medicaid funded program, so if the funding to Fiscal Intermediaries, the agencies we must use to help us pay our employees, is not adequate, the wage we pay our Personal Assistants is not going to be attractive.

The job of a Personal Assistant is deeply intimate, and is not for everyone. I have been forced to retain workers who showed up consistently, but were not quality workers, simply because having someone was better than not having anyone. This action brought about disastrous results last year when one of my former PAs dropped me during a transfer because she did not listen to me or follow my instructions. I fractured my femur, which required a lengthy surgery, and then spent a total of 4 weeks in the hospital and rehabilitation. I have been continuously recruiting staff since returning home last February.

At any time, I usually employ 14 PAs to cover the 70 hours of care I am authorized to receive each week. Of these, 6 are my primary workers, with the rest being back up or “emergency” staff. In just the past year, I have had 6 PAs leave my employment, and have been continually recruiting new staff since February 2016. When I asked my former PAs why they left, the number one reason was that they were not earning enough money.

Without my staff, I would not be able to live in my house. I would not be able to work. I would not be active in my community. I would not survive.

I respect the work performed by my staff, and home care workers across our state. I would like New York State to respect that work, by allowing Consumers like me to pay an adequate wage. Then, we can more effectively recruit and retain quality staff, keeping us in our communities and homes where we belong.

My Go-To Tunes: Musical Memories

Sometimes, I’m going through life doing something completely mundane when all of a sudden my brain becomes aware of a song and I’m instantly transported to a different place and time. This happened yesterday as I was completing an overdue monthly expense report for my employer. I heard the high hat and the keyboards and started bopping in my chair. In came the bass, and I turned up the volume on my headphones without even realizing what I was doing. I started singing the first chorus before I became aware of the sound coming out of my mouth.

Sidebar – this happens all the time, much to the annoyance of my former cubicle neighbors when I used to work in the cube farm. “I’m sure you think you have a lovely voice, but it’s very distracting when you sing at your desk.” Um, well, I actually do have a good voice, but most of the time when I’m singing at my desk at work, I really don’t notice that I’m doing it. I’ll try not to listen to music but you screaming into  your phone is a distraction too! Is it any wonder I didn’t last there?

Back to the story…

When this happened yesterday, I was transported from my home office in Waterford, New York, USA, to the house on Mirramar Park in Blackmans Bay, Tasmania, Australia. I was sixteen years old in September 1990 when my host brother, Mike, blared the song at 6:45 AM and yelled at me to get out of bed. I remember the moment because it was one of the few mornings I did not get up before Mike to get ready for school.

This memory sparked another memory – February 15 is Mike’s birthday! A glance at the clock and some quick calculations and I realized it was already February 15 in Australia. I left a quick note on Mike’s Facebook page, sharing my musical memories and birthday wishes. He replied this morning (well, morning for me but I’m guessing he’s heading to bed).

Denise – You are AWESOME! I still absolutely love that song!!! i will play it tomorrow to my 3 daughters in your honour! I love how the bass line kicks in half way through the bar on the off beat…gold!

I love that music can be a universal language, connecting me to friends and family who happen to be on the other side of the world. Some people associate memories with food or scents. I know someone whose memories are triggered by clothes. But my memories have always been sparked by music.

The song that served as my memory spark this time was Modern Times by Daryl Braithwaite. Included on his album Rise, it is a staple on my “Aussie Tunes” playlist. I’ve listened to it hundreds of times, but yesterday I was struck by the second verse. Though the song was released twenty-seven years ago, the lyrics are still relevant.

Somebody pulls the trigger, while somebody waits to get hit

Somebody freezes in the winter, and I’m complaining about the heat

Nobody listens these days, though they’ve all got something to say

I’m singing songs about waiting, and you’ll come back some day

Now I need to go listen to the song again. You can listen to it too, in honor of Mike’s birthday.

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.

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!

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.

Going Up

Last week, my wheelchair died. I had just transferred from my chair into bed on Tuesday night, and decided to start moving it out of the way while waiting for my Personal Assistant (PA) to put the transfer board down. Only, when I pushed the joystick nothing happened.

I’m not a stranger to this. Sometimes, I don’t wait long enough for the drive motors to engage before trying to drive. I’m impatient. I like to go when I want to go. But, I know there is a start up sequence that has to run and if you try to operate the chair before it is ready, it won’t go. You’ll push on the joystick and nothing will happen.

So, last Tuesday night I did what I always do. I counted to five and tried again. Still nothing. I turned the chair off, then turned it back on and waited for another five seconds.

Zero movement.

My chair has a powered seat, so I tried those controls next. The seat base elevates and moves forward and backward, giving me more clear floor space in front of my chair during transfers. My seat elevator also makes it possible for me to reach higher objects, rise to a standing height during speaking engagements, and helps me get my own drink off the bar when I am out with friends instead of relying on others.

Last Tuesday when I tested the seat controls, it moved forward and backwards but did not change height. This was a problem because it was elevated. I elevate it most of the time I transfer out of my chair because, well, gravity still works. It’s easier to go from higher to lower than to transfer uphill.

The final piece of the puzzle came to light when I looked at the screen on my joystick. Highlighted in yellow was the message “drive fault.” This told me it was probably either the joystick, the controller (the computer brain of the chair) or the drive motor. None of them were good possibilities, but without a diagnostic tool I couldn’t do anything further. I had my PA disengage the drive motors, push my good chair out of my bedroom and get my old clunker chair out of my office.

Thank goodness I listened to Bob, my wheelchair repair guru, when he told me to put new batteries in my old clunker. Sure the old clunker isn’t comfortable to sit in for long periods of time, and I wasn’t sure how I would manage in it with formerly fractured femur, but at least the chair was made to my measurements. Five years ago, this was my daily chair. Even if it had outlived it’s daily use, it would be better than a loaner which didn’t fit me.

I used my clunker last Wednesday while Bob ran diagnostics on my chair. Of course, when my PA brought the chair to the shop, it worked perfectly. Try as he might, Bob couldn’t get the chair to fail. From how I described the error code, Bob was fairly certain it was the seat elevator, not the joystick, motors or controller. He played with some loose wires, adjusted the seat elevator actuator (a known problem on prior repairs to my chair) and arranged for delivery of my chair back to me later that day.

Fast forward to this morning, a week later. I drove my chair under the bathroom sink after breakfast, ready to brush my teeth. I activated the seat controls and moved my joystick to elevate my chair. All normal activities, except the chair didn’t move. Ugh.

Opponents of funding for complex medical technology always say adaptations like seat elevators are luxury items and not really necessary for people like me. Luxury? Well, here is a list of things I have not been able to independently perform in the 90 minutes since noticing my broken seat elevator:

  • I have not been able to brush my teeth. The bathroom and kitchen sinks are too high for me to access without my seat elevator. I could grab a cup to use as a spit cup but…
  • I can’t reach the cups in the cabinets because I can’t elevate my wheelchair. No access to cups means nothing to use to help me brush my teeth or take a drink.
  • I can’t wash my face  – another task requiring the ability to reach the sink.
  • I can’t get my sweater off the hook behind my bedroom door. I’ve tried using my reacher. It doesn’t give me enough height.

I’ve already called Bob. He’s going to look at my chair as soon as my PA gets it to him. Thank goodness for Bob. Every wheelchair user needs a Bob, and those of us who have a Bob know how fortunate we are.

 

The Will to Write

Two years ago, when I started this blog, I felt guilty calling myself a writer. I worried people would laugh at me, not take me seriously. I had to talk myself up each and every time I hit “publish” and put my work out into the world.

Fast forward two years to this September. I started a new memoir writing class with my friend and mentor Marion Roach Smith. I committed to finally working, really working, on the book – the book I promised my late sister Mary Jane I would write. I wrote daily, sharing my work each month with the others in my class. Finally I felt comfortable saying the words, “I am a writer!”

Confession time: I haven’t written in two weeks. Life has a way of changing the best laid plans. At least, it always seems to happen to me.

My beloved father passed away on December 14th, giving me a healthy dose of perspective just as I was starting to get mired in pre-holiday stress. In an instant, I went from “How will I ever get the rest of my cookies done?” to “How will I get home to Mom and my sisters?”

After the funeral, the family gatherings, the tears and the laughter, there was still Christmas. And work. And life. And a book still waiting to be written.

That is how it happens. We gather with loved ones to offer comfort and share memories. Then, we return to our new normal and try to make our grieving selves fit back into our prior routines.

Somehow, I never manage to fit.

When my sister Mary Jane passed away five years ago today, I learned how easy it was for me to cultivate a relationship with grief. At the time, I wasn’t aware it was what I was doing. Now, I recognize the listlessness and lack of focus.

I am on vacation this week. Once again, my sister Caroline has agreed to let me crash at her house for the week. It was supposed to be a week of writing, crochet and relaxation.

Every day this week I have sat to write, and nothing has come. Well-meaning friends have offered me encouragement. Just journal. Write to a prompt. Set a timer and write for just ten minutes.

I started this post two days ago. Today, because I made Mary Jane a promise and I always try to keep my promises, I am finishing something – anything – just to say I am writing.

I know enough to know that I need to listen to myself when I don’t have the will to write. It is fine to take a break, to grieve, to allow myself to retreat and take a respite.

The trick is to not encourage myself to stay in that dark place, to not allow my voice to dwell in the grief and sadness in my heart. Even though I may want to sit and mourn, I know how easy it is to become mired in the sorrow and not move forward towards the goal.

I am a writer. It is what I do to help process the world around me. I think in words, stringing thoughts together in my head whenever I have moments to myself. When I don’t write, I feel like part of me is not fully functioning.

My goal today was to write a post and get it up – no matter how long, even if I think it’s crap. My goal tomorrow is to write 750 words about my experiences as a former poster child.

Goals are good. They provide focus when you feel lost. They can be modified when life throws you curves. Sharing goals helps me remain accountable. Hence, I state them here so I know someone else is aware of my plan.

I’m not thinking beyond this week. I’ll spend the next few days playing with my sister’s dogs and crocheting in front of the fireplace.

But come next week, I’ll write again. Because I am a writer. And writers write.

Unruly Underwire

Last month, I took part in the 2nd Annual Brava! This event is a fundraiser for the YWCA of the Greater Capital Region. The evening features local writers performing readings on the subject of brassiers in their lives. I read my essay “Just the Bra for This” last year, and was honored to have another essay selected by the jury for this year’s successful event. Thanks to my sister Sandy, who was also one of this year’s featured writers, you can watch a video of me reading this essay.

Yes, this is a true story. Yes, I still talk to Don and he knows I shared the story publicly. I know I am not the only wheelchair user who has had odd things stuck in her wheels. Since I shared this video on my Facebook page, friends have shared their stories of underwear, hair ties, socks – you name it – stuck in their wheels. To my knowledge, I am the only one with an unruly underwire though.

Unruly Underwire

My longest romantic relationship started because I was being held hostage by a bra.

When Don first called in late September 2001 to ask me on a date, I was using a lightweight manual wheelchair. It had removable armrests, swing-away footrests and weighed less than 22 pounds. It was everything I wanted and needed from a wheelchair at the time.

The only part of the chair I didn’t love was the front wheel, or caster, mount. My front casters were four inches in diameter, held in place with a fork mount allowing them to spin and rotate easily, too easily. Things were always getting caught in them – hair, yarn, string, even fake cobwebs at Halloween.

I don’t really know how it happened. I was sitting in my bedroom, sorting laundry when the phone rang. The basket tumbled off my lap as I dashed across the floor to grab the cordless headset. Don said hello as I backed up to collect the wrinkled shirts and pants now on the floor around me.

Except, I didn’t move. My front wheel was stuck, not rotating, not turning, nothing. I almost flipped backwards as I uselessly struggled to reverse my chair off the pile of clothes. Looking down I realized something was wedged into the caster fork, through the front wheel.

My pink underwire bra, a favorite because of the fit, color and comfort, had somehow become twisted up inside the wheel. The wire itself, which had been threatening to come loose from its casing for weeks, was now wedged across the wheel, effectively locking it. My attempts to move and turn had simply lodged the bra firmly in place, preventing any wheel movement whatsoever.

I sat listening to Don, wondering how to bring this up in conversation. How exactly do you tell a male stranger that you are held hostage by a bra? A bright pink bra?

Um, excuse me Don. You don’t seem like a psychopath, and I’d like to talk to you, but there is a bra stuck in my wheelchair so now’s not the best time for us to have our first conversation.

Yeah – to pull that off without scaring a guy obviously flirting with me, who is interested in me, and who called me? As a rule, men didn’t often pursue me, so I was not going to jeopardize a potential romantic connection just because of an unruly underwire!

I continued to talk with Don as I frantically tried to come up with a strategy to set me free. All my adult life, I have joked with friends that living with disability has made me a female MacGyver, the TV hero who could get himself out of any sticky situation. Put me in a tough spot with very few resources, and I can problem solve my way through just about anything. But try as I might, I could not release the bra from the wheel. I twisted and contorted my body, bending forward, trying to pull the strap to move the wire while still maintaining a grip on the phone.

Yes, I love visiting bookstores.

I grabbed a pen off my dresser and attempted to push the bra out through the hole in the wheel.

No, I haven’t been to the new Barnes and Noble.

I leaned over the opposite way to take weight off the wheel praying to get it to spin freely, all the while making what I hoped were appropriate responses and encouraging remarks to Don.

Coffee on Sunday? I think that sounds great!

After an hour I realized the only way to liberate myself was to sacrifice the pink underwire and just cut the bra loose. I could see my scissors on the desk next to my bed, four feet away. Somehow, I had to get them.

So, I removed an armrest and used it to push the laundry basket across the floor to the desk. Turning a dirty pair of pants into a lasso, I tossed one pant leg over to the desk. The pants and the scissors slid and after four attempts, fell into the laundry basket. I dragged the basket containing the coveted scissors back to me with the chair armrest.

Snipping the offending undergarment into multiple pieces, I laughed in vindication. I wheeled backwards, taking in the tattered pink satin scraps scattered on the floor like cotton candy confetti. I wielded my shears in victory as I tossed the misshapen underwire into the trash.

MacGyver’s got nothin’ on me.

The words "30 days of thanks" in cursive writing on a green square.

A Week After 30 Days

It has been just over a week since my last 30 Days of Thanks post. As I do after each blogging challenge, I have been reflecting on this experience and trying to gather my thoughts into something worth posting. Although this is my third time completing this challenge, there are still lessons I am learning along the way.

1. Guests are Great!

This was the first year I asked others to consider taking part in my 30 Days of Thanks. I’ll be honest and admit I did this for selfish reasons. Guest posts meant less content I had to create myself. I am taking a memoir writing course this year, and the daily writing required for the course takes up time I would have otherwise used for my blog posts.

Thankfully, several of my friends took me up on my invitation to write, granting me the privilege of sharing their amazing work to my loyal readers. Reading their work also caused me to stop and think about their writing, how they crafted their messages, what devices they used effectively and how I might try to incorporate these in my future writing. I am grateful for their generosity, but embarrassed to admit…

2. I Left Out a Post.

Early in my blogging life, I connected with a delightful writer, Lily. This year, Lily branched out and started writing about daily random acts of kindness on a new blog. I asked her if she would be willing to write a piece for my 30 Days of Thanks. Lily wrote a very insightful piece, thanking a man who broke her heart. I was honored she offered it to me and scheduled it (I thought) to appear in late November. Then, two days before it was to post, I realized it was not in my list of posts. What’s more, I couldn’t find the email and file containing the post. I panicked. I searched late one night then went to bed, promising to do it first thing in the morning. Only, I didn’t do it because work, Personal Assistant illness, life – you pick it. I forgot. I forgot to fix my mistake, and I never ran Lily’s post. I have apologized to Lily, and I hope she will forgive me and let me make it up to her. Now I’m owning up to all of you, because I feel like I’ve let Lily down and I dislike being the cause of anyone’s disappointment.

3. “Not All Rock Stars Play Guitar.”

Prior to last month, I averaged 50 blog visitors per post. The largest number of visitors to DeeScribes in one day occurred in September 2015 when I wrote the post, I Never Said He Wasn’t Being Kind. Two hundred seventy six visitors read that post, a record which held until November 22 when I wrote this post about my friend Mike. Within two hours of posting, I had 50 visitors. The post was shared by multiple people and then Mike shared it. After eight hours, it had been seen by over 200 people. I knew before I went to bed that night it had broken my prior “daily record” and was approaching 290.

I can never predict what will resonate with readers, and what will appeal to a large number of people. I am convinced if you put a photo of an attractive man in uniform with your post, your blog stats will improve for the day. I told Mike I planned to use his photo with a random post just to test my theory sometime. He’s the one who gave me the quote at the start of this section, as well as the story for an amazing day on my blog. Thanks again Mike. You and the other officers are definitely getting cookies this year.

4. People Like to be Surprised with a Thank You Note.

Before I write and share my 30 Days of Thanks posts, I always ask the subjects of my posts if they will permit me to share my thank you note to them on my blog. Only one person has ever refused, and of course I honored her wishes. This year, for the first time, I wrote posts about each of my sisters without telling them in advance I planned to feature them individually. Once the first post about Sandy went live, Donna, Susan and Caroline knew their own posts would be coming. But, I did not share my posts with them in advance. They all responded to the memories I shared, and sent me delightful notes or comments in return. I’m glad I took the time to write separate posts for all of them as gifts for all they do for me.

Thank you to everyone who supported me and my guest bloggers through my 30 Days of Thanks challenge. I am grateful for your comments and shares. I hope you will continue to practice daily gratitude for the people and blessings in your life. And if you have time, send someone a thank you note. It will make their day.