View of a grey Derwent River, with cloudy skies. Bruny Island is in the distance.

To Tell the Truth

I’ve been sitting on this post for a few months, writing when I felt the urge. It seems fitting to share this today, which I just learned is the International Day of Happiness, because I am the least happy I have ever felt in my life and I don’t know what to do about it. Admitting that is difficult, because I know my friends and family will want to help me, make things better, do something to make me happy. The reasons for my unhappiness are complex and there are no easy fixes. Trust me, if there were, I would have done them by now.

This has been building since I lost more physical independence after my femur fracture in 2016. That catastrophic event took away my ability to independently drive my van, and increased the number of personal care hours I require. It also caused me to change how I use the bathroom, limiting my ability to pee freely as I described in this post. OK – to be fair, I’ve never been able to pee freely. But, until I broke my leg I was not limited to the use of three bathrooms on the planet.

The loss of independent transportation required me to move – twice – in the past eighteen months. I have been using my local paratransit system for most of my travel to and from work and events. Paratransit is a shared ride system, which means you are not guaranteed a direct ride from your pick up location to your destination. There have been days that I am picked up at my house (which is 15.9 miles from my office) to ride around for two hours, picking up and dropping off other passengers until I am dropped off at work. On average, I spend two and a half hours every day on the bus to travel my 32 mile round-trip commute. This is time I don’t get to write, volunteer, read, work, or just relax.

Last September, my friend and former college roommate Chris surprised me with a phone call. We hadn’t spoken since the start of summer, but our friendship is one where we can pick up exactly where we left off even if it has been months since the last conversation. We we played catch up and traded stories, I admitted that the past several months had been stressful. My exact words were something like, “I’m not really doing well and feel like I’m barely keeping it together most days.”

Chris was quiet for a moment, then responded, “Well, I wouldn’t have known that from your Facebook posts! You’re so busy, and always writing about volunteering with Rotary.”

The truth? I hate being negative all the time. So I don’t share all the crap I’m dealing with on social media.

I am not alone in this. According to a survey conducted in Great Britain, only 1 in 5 people are truthful in how they portray themselves on social media sites like Facebook and Twitter. According to the marketing company Custard, who performed the survey:

When asked how people’s lives differ online, 31% of respondent said that their social page is “pretty accurate, just with all the boring bits removed” and 14% said that their profile makes it look like they have a “much more active social life.” The survey also showed that men are more likely to lie about their lives through social networking sites, with nearly half (43%) of men polled admitting to fabricating facts.

I don’t feel like I’m lying on social media. I am not making up the things I share publicly. In my case, I choose to try to keep complaints to a minimum on Facebook. I am consciously not sharing most of the daily stress that is causing me to slip further into a pit of unhappiness. At least, I try my best to keep the negativity to a minimum.

But I’m struggling. Right now, finding positivity is a chore I force myself to complete each day.

It used to be my natural way of operating. I am an optimist. I see the glass half full. I believe things could always be worse. Yet, recently I don’t feel up to the challenge of maintaining optimism.

I have withdrawn from friends and family who care. I text instead of calling because it requires less energy. Until last week, I hadn’t sent a birthday card to anyone in at least two years. At a time when I should be surrounding myself with other positive people because I’m an extrovert who gets energized in social situations, I am hibernating.

I am not writing as often and when I do it’s not my best work. Writing helps me process what is happening in my world. It is a way for me to maintain balance and emotional stamina. A glance at my blog statistics shows I only posted 55 times in 2017. That may seem like a good number. But when you compare it to 2015, the year before the femur fracture, it pales to the 164 posts I shared.

Before any of you start sending me notes reminding me that you love me and that life is not all bad, I need to tell you something. I KNOW this is temporary. I KNOW what is happening in my life is not the worst thing in the world that could happen. I KNOW there will (eventually) come a day when my new wheelchair doesn’t make me cry in pain. I KNOW I will (someday) get that new wheelchair accessible van with the high tech driving controls which will enable me to participate in my community at will. I KNOW there are millions of disabled people who would love to have the difficulties I am facing right now – people who don’t have accessible housing, access to paratransit, full-time employment, adequate personal care assistance. I KNOW I am speaking from a world of privilege they do not have and would gladly take in a heartbeat.

Knowing those things does not make the challenges I’m facing less real or less of a barrier in my life.

Last week I attended a book reading at my local independent living center. During the community discussion after the reading, someone mentioned the anger disabled people feel – anger that is not acknowledged or validated. Often, well-meaning people will listen to me vent in frustrated anger and respond by saying, “Well, at least it’s not this (insert awful thing here)” or “It could be worse! You could have (insert other disability or illness here).”

Those comments don’t help me feel less angry. They don’t acknowledge that here and now, I am living with levels of fear, anger, and unhappiness which threaten to burst out at inappropriate times. They don’t validate my feelings of discouragement at having to battle and navigate a bureaucratic system which is supposed to be helping me but has not produced anything meaningfully helpful in 18 months (I’m talking about you ACCES-VR).

So, today, on this International Day of Happiness, even a gratitude list doesn’t make me feel happy. I debated whether or not to share this post and eventually decided perhaps there was someone else who is not happy today who could benefit from knowing she is not alone. I edited, deleting swear words and prepared myself for the reaction it will bring.

Tomorrow I’ll be better. That’s the way it’s been for over 2 years. This too shall pass. Periods of happiness can be found, just not for me today.


My Go-To Tunes: Old School Country

I have always been a person who associates memories with music. I can’t always remember what I was wearing for a specific event, but I can tell you what memories are attached to songs.

Growing up, our house was always full of music. The stereo was playing, or one of my sisters was practicing her musical instruments. I learned to sing songs which may or may not have been appropriate at a young age.

One of the first songs I remember singing is “Rhinestone Cowboy” by Glen Campbell. I used to have an orange plastic rocking horse with a blue mane. I named him Filbert. I would ride Filbert in my parents’ living room, wearing my cowboy hat, and sing “Rhinestone Cowboy” at the top of my lungs. I still know all the words. I don’t know whether to be proud of that.

Today I heard the news that Glen Campbell passed away. In honor of his life and legacy, I give you my Old School Country memory. Thank you for the music Glen.


Laughter as Therapy

Last week, my friend Shameka sent me a text inviting me to join her for a night out. The comedian Josh Blue was coming to town – did I want to go?

Of course, I said yes. I love Josh. His comedy is super funny and smart. He uses his disability (he has cerebral palsy) in his stand up routines, but not in an inspiration porn way. If you’ve never seen him perform, here’s a clip from his special “Sticky Fingers.”

After the week I had, I was looking forward to a night out with good friends. Kelley, Shameka, Katie and I arrived at the comedy club early because we wanted to be able to get a table which would accommodate 3 wheelchairs and still give us a good view. I expected to see more disabled peers in the audience because so many people I know like Josh, but we were the only three visibly disabled people in the room as far as I could tell.

Josh didn’t disappoint. He was hysterical! We laughed, and laughed, and laughed. At one point, I made the mistake of taking a drink when I thought he was pausing. I was not ready for the joke and almost spat my mouthful at Kellie. I don’t think she noticed.

It was very interesting to watch the mainly nondisabled audience respond to his jokes about disability. As a person who often jokes about the stupid crap nondisabled people say to me, Josh’s jokes were spot on. I don’t claim to have the same timing or talents, but whenever I make comments like he did I never notice the tension in my nondisabled listeners as was present early in the show last night.

Here’s the thing – laughter is an important tool in helping us find common ground with those who are not exactly like us! Josh said it himself in his show last night when he quipped, “Doesn’t it feel good to laugh?”

Yes! It felt great to laugh last night. As I’ve written about in several posts, the past eighteen months have been some of the most challenging months of my life. I have not had much laughter. I miss it. I dislike being angry, bitter and depressed. I have tried to embrace gratitude, and strive to keep public complaints to a minimum. But, sometimes things just suck.

Last night, surrounded by friends who “get it,” watching a comedian who “gets it,” I felt more like me than I’ve felt in months. This morning I woke up still laughing.

Thank you Shameka, Kelley and Katie for a wonderful night of friendship and fun. And thank you Josh for the work you do to help the nondisabled laugh at disability the way we’ve been laughing at it for years.

If you’re reading this in the Capital District of NY, Josh is performing again tonight (Saturday, July 29). His website lists his tour dates for other cities. You should go see him if you can. Maybe you’ll get to pose for your own photo after the show!

Photo of two women using wheelchairs and a man kneeling between them. The woman on the left is black and wearing glasses and a black shawl. The woman on right is white and is wearing a red shirt and blue skirt. The man has a beard and is wearing a black t-shirt  with the word "DELETE" in white letters. All three are laughing.

Out of the Mouths of Babes

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

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

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

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

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

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

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

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

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

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

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

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

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

Oh, you work?!

And my personal ‘favorite’…

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

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

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

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

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

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

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

Saying Yes

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

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

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

They were shaping what would become my manifesto.

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

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

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

Say yes. Do it all.

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

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

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

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

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

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

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

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

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

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

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

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

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

But you won’t know until you try.