Race for Hope 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

My Go-To Tunes: Go Me!

Happy belated anniversary! Oh, you missed it too? Don’t worry. So did I.

Two years ago, on September 7, 2014, I swallowed my fears and hit “publish” for the very first time. I had no idea my little personal writing blog would grow. I thought maybe I’d get 50 followers, with most of them being friends and family. I worried people would laugh at my writing, or question me when I claimed to be a writer.

Well, look at little DeeScribes now! I’ve succeeded at this writing adventure!

  • 268 posts
  • 18,181 views (I love this palindromic number)
  • 9,428 visitors
  • 287 followers

Last year, I was encouraged to set blogging goals and I jokingly responded that I’d have 300 followers by the end of 2016. I never thought I would be this close to reaching the goal by September!

Thank you for sticking with me as I follow my writing dreams. Your words of encouragement, particularly this year, have sustained me when I was ready to crawl in a corner and withdraw. You honor me by taking some of your precious time to read my writing, and I appreciate the gift of your comments and feedback.

To celebrate our anniversary, I’m sharing a very “Dee Song.” Yes, it’s a real thing.  Just ask my friends. Don’t believe me?

Ten years ago, while I was nursing yet another broken heart, my college roommate Chris sent me some music to make me smile. This song, “Supergirl” by Saving Jane, was one of the songs on the CD,  and when I told her I loved it, Chris told me it was a very “Dee Song.” See – I told you so.

“Supergirl” has been my phone ring tone for the past four years. It is a fixture on my Friday afternoon “move it” playlist. I use it whenever I need a reminder that I am flirty, fabulous, and fantastic. I searched for an official video, but the live versions I found were not as easy to understand as the original recorded version. You don’t need to watch the video, just listen to the song.

Happy two years!

Sitting Will Kill You

A couple of weeks ago on a Friday morning, while scrolling through Facebook, a colorful image of empty chairs popped up in my feed along with the headline, “The Futility of the Workout-Sit Cycle.” I hesitated, then fell victim to the click bait and opened the link. Here’s a brief excerpt from the conversation in my head:

Why are you reading this? It’s just going to make you angry. I bet you the author concludes sitting will kill you. What are those of us who can’t help but sit supposed to do? Am I the only one who reads this and thinks ‘I’m screwed?!’ 

It’s the same conversation I have with myself whenever I read an article about some new study related to physical activity and health. Some group, in this case it’s the American Heart Association, issues a report such as this one with the catchy title of “Sedentary Behavior and Cardiovascular Morbidity and Mortality.” Then someone writes a summary, which appears in a magazine like the article I saw in The Atlantic. I read the article to see if there is any mention, just one tiny mention, of disability. Usually, there is not.

After reading the article in The Atlantic, I shared it on the Disability Visibility Project (DVP) Facebook page (full disclosure – I am a co-moderator of the page). Founded by the amazing Alice Wong, the DVP is an online community dedicated to recording, amplifying and sharing disability stories and culture. The DVP Facebook page is public, and the articles often lead to some interesting discussions about disability culture and identity, ableism, and media representation of disability. When I shared the article, I wrote:

Once again, a major medical organization tells us that sitting can kill you. As someone who has no option to stand, I always wonder if activity and exercise performed while sitting is even considered by these researchers. What are those of us who aren’t able to stand supposed to think when we see these articles? Yes, I know a sedentary life is not healthy. If that is the message, why not just say that and be inclusive of those of us unable to stand?

As the day progressed, and the comments continued, I realized I was not the only one to have these questions. Knowing I might write about this article, I asked if I could share comments. Some of the thoughts and comments are included here. While I have edited them down for brevity, I have kept the original language each person used.

Sparrow: “That’s an excellent point and one I confess I hadn’t considered. No one is researching active sitters and that’s a huge omission….Thank you for helping me re-think the whole “sitting is bad for you” assumption. I’m going to be more careful with my language around that now. I write ad copy part-time and had to write about a standing desk last week and would have written differently if I’d read your comments first.”

Luticha: “I have spoken to researchers about this. and basically it boils down to disabled bodies behaving differently than nondisabled bodies. So while they know that disabled folks have higher rates of obesity and heart issues the issues don’t stem from disability per se but lack of access to recreational sports or accessible gyms. And for those completely immobilized there isn’t much outside of controlling diet.”

Linda: “I dislocate things when I exercise (or even move sometimes), any part of my body… Even walking more than a few feet makes me dizzy and fall. The only way I can lose weight is to starve myself – even back when I could and did exercise for hours each week, it was like this. I ended up with anorexia, twice. Not planning on risking that again. Anything other than life saving surgery is way too risky, so lapband surgery etc is also out. I move my muscles when I can to keep the blood flowing and the nerves fresh, but other than that, what’s a girl with rotten metabolism in the best of circumstances to do? I like that this research is done, but I hate reading it…”

Shayna: “It’s not written well to consider people who use wheelchairs or have disabilities/illnesses/injuries that mean being upright for long, or at all, is not an option. But this part of the article talks about raising your metabolism to 1.5 times being completely still (which they describe as sitting or reclining). And that would mean that seated activity would count. So that’s good, would be nice if they had considered this and stated it explicitly though.”

Heather: “Good points shared and yeah, I usually read this kind of stuff with a grain of salt and long stop taking blanket advice like drinking 8, 8 oz glasses of water a day..way too much for this body, bladder response is like hell naw.”

I decided to search the original report from the American Heart Association and read it instead of just reading the summary article. Sure enough, on the second page there it was:

Therefore, we restrict this advisory to adults without ambulatory limitations.

Again the voice inside my head speaks up: Right – because who cares about the health of adults with ambulatory limitations? ‘They’re disabled and their health must be poor anyway, so why should we focus precious research dollars on them? It’s not like they worry about their health anyway, because they have such poor quality of life.’ That’s what you’re really thinking, right?

The report defines sedentary and gives examples of sedentary behaviors. Basically, anyone who does not get moderate-to-vigorous physical activity (MVPA) is sedentary. What is MVPA? According to the article (and the Sedentary Behavior Research Network), “MVPA is defined as activities that expend at least 3.0 metabolic equivalents.” In case you didn’t know (because I had to look it up too), one metabolic equivalent is the energy expended while a body is sitting at rest.

I may be sitting all day, but I am NOT sedentary! I can get an increase in heart rate simply by trying to reach for my phone when my Personal Assistant (PA) has moved it without thinking. I can break a sweat trying to transfer in and out of the driver’s seat in my van. When I go for walks around the neighborhood, my muscles are actively engaged trying to maintain an upright posture in my wheelchair as it rolls over uneven surfaces. Even sitting and reading can get my blood pumping – especially when I read articles which equate sitting with sedentary! But I was talking about the article…

The focus of the article was to explore the research to identify potential public health messages or guidelines to reduce sedentary behaviors. After describing the clear need for more research (do articles ever NOT say there is a need for more research?!), the authors conclude with this simple advisory, “Sit less, move more.”

Sure. I’ll get right on that. As soon as I figure out how to move more once I’m no longer sitting – given that sitting is my only means of mobility and I cannot independently move if I am not in a seated position.

Yes, I understand that what they really mean is “move more,” be more active, don’t sit and stare at the computer screen for hours on end without moving. Well, if that is what they really meant – why couldn’t they just say that? Why do the recommendations always involve an activity I (and millions like me) cannot do?

In 2015, the United States Surgeon General issued Step It Up! The Surgeon General’s Call to Action to Promote Walking and Walkable CommunitiesThe report aims to, “get Americans walking and wheelchair rolling for the physical activity needed to help prevent and reduce their risk of chronic diseases and premature death.” To help involve people of all abilities, the National Center on Health, Physical Activity and Disability (NCHPAD) launched the “How I Walk” campaign. The campaign is described on the NCHPAD website as a “movement to rebrand the word walking by challenging individual and societal perspectives.” In doing so, the campaign aims to focus on inclusive physical activity for everyone, recognizing that each individual has their own means of “walking” or moving.

A girl in a gray t-shirt, with a long, brown ponytail in a wheelchair walking through an accessible park on a beautiful, cloudless, sunny day. The text on top of the image reads: “Systems designed to meet the needs of people with disability will meet the needs of everyone”.

As someone who “walks” differently from most people, I appreciate this effort. Of course I realize the majority of people “walk” on two feet. I even use the term “taking a walk” to describe what I do when I head out to explore the trails and paths around my town. That doesn’t mean I don’t want people to consider how I “walk” when they are planning their public health interventions. When public health professionals consider all adults, and design systems and interventions which meet the needs of people with disabilities, they will meet the needs of EVERYONE. An inclusive public health infrastructure will benefit everyone, including disabled adults who are three times more likely to develop a chronic disease than nondisabled adults.

Now, if you’ll excuse me, I think I’ll go for a walk. I am now living near the Champlain Canal Trail and I feel like exploring before I die from sitting too long.

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!

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

In Appreciation of My Forever Friends

My hometown of Bainbridge, New York, is small. According to the most recent census, the population is approximately 3,000 people (of which 1,300 live in the village of Bainbridge). In a town like Bainbridge, everyone knows everyone else. I may not have appreciated growing up in a small community during my teen years, where I was one in a class of just 66 students, the youngest daughter of the manager of the grocery store. But things change as you mature, and now I am grateful I had the chance to grow up surrounded by a group of people who are my forever friends.

My forever friends have known me, quite literally, all my life. I met my best friend Stephanie at the summer playground program when I was three. Erin’s family moved across the street from my family when I was four. Sheri and I convalesced together when we both had the chicken pox in kindergarten. Rebecca, George, and I used to ride to and from religious education classes throughout elementary school. Allison volunteered to spend recess with me in third grade after I had surgery, and then was in almost every single class with me for the next 8 years. For most of high school, I saw the same friends all day as we moved from class to class.

After high school, some of us moved away for college and careers. Some stayed to make their lives in town. Though I no longer have daily contact with most of these friends, they are still the people I turn to when I need to be reminded of who I am. These are the friends who will challenge me if I say something out of line. They will question me if I appear to be acting out of character. They are quick to remind me of my importance in the world when I am facing difficult times.

This year I have come to recognize how much I value their presence in my life. During my hospitalization in January, their support and encouragement gave me the energy I needed to continue my recovery. Knowing they believed in my ability to endure fortified my resolve when the pain was too intense. Cards, emails, and letters seemed to appear whenever I was low and needed a lift.

When I was younger, the people who came back to town for their class reunions with their forever friends always seemed more mature than I currently feel. I always assumed they had life’s questions all figured out. I never imagined one day I would be the one going out to dinner with my school friends, laughing over memories, reminiscing over a meal and drinks on a summer night.

But that is exactly where I found myself on Saturday. Last weekend I gathered with some of my forever friends to commemorate 25 years since our high school graduation. Sitting at the table, laughing about summer marching band trips, prom, and favorite teachers, I was reminded how fortunate I am to have my forever friends. Time passes between our visits, yet we are held together by our shared history. We have adult lives now, and are spread in different cities and states, yet thanks to social media it is easier than ever to remain in contact. In fact, most of them will probably read how I feel about them when this post appears on Facebook.

I am most thankful to my forever friends for always accepting me for me, regardless of changing physical abilities. My forever friends always found ways to make sure I was included in activities. When my Brownie troop marched in the Memorial Day parade, my fellow Brownies pulled me in a wagon so I could be in the parade too. When we played games during recess, my friends allowed me extra time to “run” so I could play along with them. Friends pushed my wheelchair during marching band season so I could fulfill the requirement to march (it’s hard to play an instrument and wheel at the same time). They danced with me at school dances and never questioned why I was there. It wasn’t until I left high school that I encountered the “oh, it’s great to see someone like you out having fun” reaction on a dance floor.

Now that I have a disabled peer network, I have learned about the shame and isolation many of them experienced as youths. I never felt that. Sure, I was picked on by classmates. I remember being called names by other kids in school. But I also remember my friends sticking up for me, telling me I was better than those who might try to put me down. I never faced malicious bullying as a child.

Aristotle wrote, “In poverty and other misfortunes of life, true friends are a sure refuge. They keep the young out of mischief; they comfort and aid the old in their weakness, and they incite those in the prime of life to noble deeds.” My true forever friends may not have kept me out of mischief as a youngster, but their continual comfort and assistance enrich my life in many ways.

Too often, we forget to express our gratitude to our friends because their friendship has been a constant in our lives. I have used my 30 Days of Thanks posts to publicly thank those who matter to me. How about you? When was the last time you wrote a thank you note to a friend? Why not take a moment to brighten a friend’s day right now? I guarantee it will make both of you feel better.

I Want To, But…

I want to write about so many recent events and their impact on my life, like the brutal murder of 19 disabled people in Japan and Jerika Bolen’s desire to end her life, but I don’t have the energy to write anything which can compare to what others have already shared.

I want to celebrate my most recent rehabilitation victory (I transferred out of my driver’s seat into my wheelchair ALL BY MYSELF for the first time since January’s femur fracture this past week – three times!), but I am too busy trying to find Personal Assistant (PA) staff to help me get out of bed in the morning to be excited over this accomplishment.

I want to attend meetings, events and parties, but I do not have PAs available or healthy enough to work the hours I require so I can be an active member of my community this week.

I want to make plans to have fun this weekend, but I will be working on Saturday and Sunday to make up for the work time I have missed this week due to lack of PA staff.

I want to watch some of the Democratic National Convention tonight, but I will have to shower instead because I don’t yet know who is helping me get out of bed tomorrow and if they will have time to help me shower in the morning.

I want to be a more productive employee and deliver the quality my employer has come to expect from me, but meeting my basic needs is requiring time and energy which is normally devoted to work.

I want to travel, but I am forced to put those plans on hold because the only bathroom I can use is in my house.

I want, I want, I want.

But, what do I really need?

I need to remember there are people who are willing to help at a moment’s notice, and who come when called so I can get out of bed (thanks Stacey!).

I need to be grateful for my accessible vehicle, when so many are unable to access their community due to lack of transportation.

I need to share the great pieces written by disabled authors and advocates I respect, so others can learn how ableism threatens disabled people and understand the violence disabled people everywhere face.

I need to thank my employers – current and previous – for recognizing my unique needs and granting me the reasonable accommodations which make it possible for me to remain employed full time for twenty years, unlike 80% of disabled people of working age in the United States.

I need to find patience while telling myself this too shall pass, and do my best not to stress over things beyond my control.

And I need to congratulate myself for completing a goal, and posting a new post in the 38 minutes of free time I had alone today.

Not only that, but now I know who is helping me get out of bed tomorrow. Although I’m still going to shower tonight in case something happens…

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?