30 Days of Thanks Day 22 – Mike

There have been many stories in the media this past year about people with disabilities experiencing disrespect and maltreatment from law enforcement during times of crisis. I’m fortunate to have a different story to tell.

Those of you new to my blog may not remember that I started 2016 with the discovery of a theft. I returned home from vacation on January 3rd and learned over $1000 was missing from my checking account because a blank checkbook was stolen. Officer Mike Dilbone responded to my call when I reported the theft. I ranted about the inconvenience of returning from vacation to discover a crime. I spouted off for several minutes before apologizing for swearing.

You think that’s the worst I’m going to hear tonight? I just started my shift a couple hours ago and guarantee I’ll hear worse.

Officer Dilbone (we weren’t on a first name basis then) followed up with me throughout that week as he gathered evidence and subsequently made arrests in the case. During his visits, he asked about my home care staff and the steps I was taking to prevent future burglaries. I’m pretty sure he didn’t like all of my answers, but he was respectful and, unlike other law enforcement officers I’ve known, did not attempt to tell me what he felt I “ought” to do.

I figured that would be the end of my police contact for the year. But of course, the following week I fell and called 9-1-1 for an ambulance. My Personal Assistant answered the doorbell as I lay sobbing and writhing in pain on my bedroom floor. I heard the door close and the squeak of leather as the responding officer walked through my apartment.

Denise – what happened?!

A hundred thoughts went through my head, something like, “Crap. It’s Dilbone again. And this time I’m half naked. And I’m bleeding because I just got my period. And there’s snot running down my face into my hair. And this man has already seen me raging and crying once this year. He’s going to think I’m crazy and incompetent. He’s going to think I’m crying because I’m in pain. He doesn’t realize I’m crying because life as I know it is over. He’s just going to see a vulnerable person. This is a life-changing fall. I won’t be able to drive if my leg is broken. I can’t live at home if I can’t transfer in and out of my wheelchair without a mechanical lift. I know what this injury means, and I don’t have the strength to deal with it right now. And I can’t breathe because my nose is clogged. And I really need a tissue because now there is a bubble of snot coming out of my nose. And I don’t want to be this crazy woman who is always crying and raging whenever I call the police!”

I think I actually said something like, “What are you doing here? It’s not your regular shift.” The exact details are fuzzy because all I really cared about was stopping the agony.

After giving me an update on the ambulance, Mike helped cover me up and then crouched down next to me. He grabbed a tissue and gently helped wipe my face clean, holding my hair out of the way when I complained about the snot running down my face. He encouraged me to just keep breathing, while asking me to relate what had happened. I flashed back and forth between telling him about the fall, and directing my Personal Assistant who was trying to pack a bag for me to take to the hospital. I did my best not to be consumed by the fear of what this would mean for my future if my leg was indeed broken, but just before the rescue squad arrived a fresh round of tears and sobbing came on. I was tired, overwhelmed, embarrassed, and angry. 2016 was not off to a great start – a theft, a sinus infection, and unexpected wheelchair repairs. Now, on the 13th day of January I was half naked on my bedroom floor with snot in my hair and a potential broken leg.

“I can’t do this,” I wailed. “I’m not strong enough to do this.”

Mike calmly said something which stayed with me during the weeks to come.

Denise – yes you can. You’re a strong woman. You’re going to be OK. You can get through this.

Police officers often calmly tell distraught victims of accidents and crimes they will be alright. At least, the ones who have responded to me when I have called for assistance have done this. I usually discount these attempts to keep me calm, but on January 13th I clung to Mike’s words as the emergency medical technicians assessed my wounds and worked to get me onto a gurney and into the ambulance. I’m pretty sure I repeatedly told him I wasn’t strong enough.

But Mike, then a relative stranger who didn’t know much about me, was willing to issue a challenge. That is how I viewed those words – a challenge to make it through what was happening. It didn’t matter if I felt weak, terrified and vulnerable. Someone who saw me at my absolute worst, in a pile of blood, snot and tears on my bedroom floor, thought I was strong enough to get through my latest obstacle. I have never backed down from a challenge, and I was not going to prove him wrong.

Thank you Mike for being calm and rational when I was at my most vulnerable. You ensured the rescue workers listened to and honored my requests. You may not have known you were issuing me a challenge on that horrible January afternoon, but it was exactly what I needed. I appreciate your ongoing visits throughout my recovery, and your assistance as I moved into town this summer. I’m grateful for your friendship and support throughout this difficult year. Here’s hoping I have no reason to call you in a crisis in 2017!

A Caucasian woman with brown hair and glasses is seated in a red power wheelchair next to a Caucasian man wearing a police uniform.

Two geese on a green lawn with a pond in the background.

Are You Ready?

Earlier this year, while stuck at home recuperating from a wheelchair vs. knee incident (tip – the 250 pound power chair always wins these showdowns), I had a conversation with my sister Caroline. To be honest, I had conversations with all of my sisters who called to check on me that week. But, for this post, let’s focus on the conversation with Caroline, also known to all of us as ‘Crinnie.’

During our call, Crinnie and I were discussing one of my past relationships and she said something which got me thinking. I told her to hold on as I furiously scribbled it down. Crinnie is always doing this – offering me sentences which serve as great writing prompts. Thank you Crinnie. I’m finally getting around to using your prompt.

I have read several blog posts and articles about “how to live without fear” or “conquering your fears.” I’ve even written about facing fear. You might think I would not need to have my head whacked by a comment from my sister to realize there is more to the story. But there I was last January, wrapped in a penguin fleece blanket with an ice bag on my knee, discussing future plans and…BANG! Crinnie comes out with this keen observation.

You can’t be fearless until you are in the right place.

This sentence served as one of those “a-ha moments.” I instantly started spouting off about how I had not been able to be fearless in 2011 when I was miserable and stuck in a job I did not enjoy. I often let fear hold me back when I am struggling to maintain adequate personal assistant staffing. For almost two years after my sister Mary Jane died I cultivated my relationship with grief, which left me mired in fear without strength to pursue any of my passions. Then, I had to recuperate from my illness and near-death experience in 2013 before I was strong enough to recognize I needed to face fear and resume my personal writing.

In 2014, I enrolled in an introduction to memoir writing course, and realized I would have to share my personal writing – not just the writing I routinely do for my profession – with others for the first time in almost twenty years. I knew the only way I was going to continue to write and make progress in my writing was to practice in a public manner which is why I created DeeScribes. The tag line for this blog is “Following her writing dreams.” In a nutshell, it is why I started this blog.

Sharing work I am paid to create is different than sharing work I choose to create. Sharing my personal stories requires me to be vulnerable. Professional writing does not contain my personal opinions or ideas. The content I create for my employer is not my unique voice.

But when I share my personal stories, I expose a piece of my spirit and identity to others. I draw back the curtains I use to hide my walls and defenses, often to reveal something I’ve previously kept hidden. This is scary stuff and sometimes causes many writers to keep their content to themselves. It kept me from sharing my writing for decades.

Though I eventually did take action – participating in classes and starting a blog – I was never fearless. I am scared every time I share a new essay. Even with this post, my 170th post on this blog, there is a quiet voice inside my head saying, “What makes you think anyone is going to read this and find it useful or worthy of their time?” I fear my words will not be helpful, my meaning not understood. I worry someone will grant me the honor of five minutes of their valuable time and, upon reading my words, think, “Well, that was a waste.”

Just because I am in the right place to take action, does that mean I am in the right place to be fearless? What does it even mean to be in the right place to be fearless – and is fearless what I want to be?

These questions almost cause me to cease action. Then I challenge myself with the same query I offer other members of my writing group when they bring up similar thoughts.

Who am I writing for? Am I writing because I have an audience, small as it may be, or am I writing for me?

I know the answer. I am writing for me, just as I was when I wrote this post, and this post, and every post here on this blog. I am writing because nobody else can tell my story exactly as I can. I am writing because it helps me process my thoughts and understand my emotions and ideas. I write each day because when I don’t, it feels like something is missing, there is a gap which must be filled.

I have never been scared of writing. My fear comes when I must share my writing with others. The fear comes from comparing what I have written to the words others have written and thinking I may not “measure up.” But comparing myself to others does not further my attempts to complete my writing goals. It does not matter if I am “good enough.” I am telling my story in my words, the best way I can. If others choose not to read it, should I stop telling it?

If I honestly examine my journal writing and the thoughts in my head, I know I no longer want to be fearless when it comes to sharing my writing. Even if I may be in the “right place” in my life, even though I feel compelled to write, I want to keep that tingle of fear which gives me pause each time I prepare to hit ‘publish.’ I want to remain critical as I edit a guest post again, and again, and again, and yet again. Fear keeps me striving to learn more, to continually try to improve, to rally against complacency.

Even when we feel we are in a strong place in our lives, when things are going well and we are ready for action, it is still difficult to face fear. Perhaps the answer is not finding strength to face the fear, but rather finding resources to help us take small steps forward with the fear instead of letting it paralyze us.

I didn’t take physics in high school, but I know a body at rest stays at rest until an outside force acts upon it while bodies in motion tend to stay in motion. Forward motion is necessary – even when we fear we may fall, or pale in comparison to others. If we let fear keep us still, we will never be able to touch and help others with our unique gifts and talents.

Redefining Disability Challenge – Question 10

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the tenth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.

Here is this week’s question:

Does disability affect you in other ways? If so, how?

If you have read my recent posts in this challenge, you know the past few questions have asked how disability affects specific areas of my life – school, family, and leisure. My responses have sparked some good conversations among readers, and I have enjoyed the dialogue. I have been hesitant to discuss the issue of how disability impacts my romantic relationships, but I guess now is as good a time as any to write about it. I am not writing this post in an attempt to gain sympathy or pity for my experiences. I am not sorry for the experiences I have had. They have been funny, cringe-inducing, sad, endearing, traumatic, genuinely lovely and downright pathetic. And I wouldn’t change a thing.

Well, maybe I could have skipped the experience with the guy who showed up for a blind date at a fancy restaurant wearing a faded camouflage sweatshirt. And one Shaun was enough – Sean (who was really Steve, as I found out later) and Shawn were just overkill.

I didn’t date in high school. I think I went on a grand total of two dates during my college years. This wasn’t because of lack of desire, or lack of opportunity. It was because I didn’t view myself as “date worthy material.”

I was learning what it was like to live with a body which was not society’s traditional definition of beautiful. I saw the fashion magazines, the models on the runways, the girls who had multiple boyfriends and I knew I did not look like any of them. My body was misshapen. My arms were contracted. My feet were inverted. My spine was, still is, crooked. I couldn’t do what they did.

Whenever I looked in the mirror, I saw everything I wasn’t. I saw a short girl who would never be able to carry off the fashions others appeared to wear with ease. I saw uneven hips which made my skirts hang unevenly unless I altered the hems. My journals from those days are full of rants about not being perceived as pretty, attractive or sexy.

I didn’t see the woman I see now. I didn’t see thick, dark hair which adapts to any hair style I attempt. I didn’t see an engaging, genuine smile. And my boobs? Well, they weren’t the attribute I now strategically use at times to my advantage! They were just abnormally large for my narrow, skinny shoulders and made buying clothes a challenge.

My views on dating and myself as a viable dating option changed around the time I turned twenty one. That was around the time I realized my own self-perception was negatively affecting my ability develop a romantic relationship with anyone else. I started smiling and maintaining eye contact with attractive men, rather than looking away. I began to approach and engage men in conversation once I recognized they might be intimidated and hesitant to approach me. I asked questions and learned to let them talk. Men like women who let them talk and then act as if they are interested – all the dating books say that and it works!

As my confidence grew, so did the number of dating opportunities. And I was not shy about meeting men. I was an early adopter of online dating. I threw myself into dating, crafting a witty yet honest profile. I had one hard and fast rule: I never knowingly dated anyone who was already taken. Otherwise, I responded to everyone who reached out to me, keeping a journal and taking notes about my escapades – one day it will make a GREAT book!

After noting a trend, as an experiment I created two profiles on separate sites. They had the same text. One had photos which showed my wheelchair and the other only had head shots which did not indicate any physical impairment.

Guess which ad resulted in zero dates and zero messages?

Guess which ad resulted in fifty six dates in eleven months?

It is difficult for other people to find you attractive or perceive you as a potential date when you are unable to view yourself in such a manner. As a young woman in the dating world who happened to use a wheelchair, it did not help my newly found confidence to come across men who held the stereotype that I, as a woman with a disability, was “less than” or lacking. After twelve, I stopped counting the number of men who told me, “You’re tons of fun, you’re a great person, but I just can’t handle the wheelchair.”

The wheelchair. Like it was something I could magically change. As if it was something I chose and wanted for myself. Were they thinking I was looking for a caregiver?!

“It’s not what defines me!” I would say with exasperation.

“Sure – pick the ONE thing about myself I have no control over and throw that in my face as a way out,” whined the voices in my head.

It’s hard not to take this personally when it happens repeatedly. I wish I could tell you it has changed in twenty years, but it hasn’t. To this day, the reason I hear most often when men tell me they want to stop dating me is “the wheelchair.” I’m reasonably certain most times it isn’t really “the wheelchair.” But it makes a convenient excuse.

Over time, I have come to realize this statement is more of a reflection on the men than on me. Really, they are doing me a favor by getting out and breaking ties early. If you can’t handle all of me, thank you for not wasting my time. But, do you really have to blame my disability? Couldn’t you simply say I wasn’t a match for what you are looking for?

The unfortunate result is I now have walls and barricades around my heart and emotions which are taller than the Great Wall of China. The byproduct of needing to appear as a strong, competent, independent woman for so long is I have difficulty allowing others to see me as vulnerable, just like anyone else. It’s my issue, and I am the first to admit I have sacrificed potentially great relationships because I was too scared to let someone I was interested in see me in a vulnerable position. Intimacy is built on authenticity and honesty, which requires me to slowly take down the bricks I have used to build the strong exterior.

We all experience fear of rejection, and we all have “stuff” we want to hide from those we are attracted to. You don’t have to have a disability for that statement to apply to you. I am no different than anyone else who wants to project a certain image, knowing the every day reality might be different. Some people hide their drug addiction. Some people hide their gambling or their dismal credit score. Some people hide their gender identity. I hide the details of the daily impact of disability until I am reasonably sure the man I am dating realizes I don’t expect him to be my permanent caregiver.

I openly discuss my disability with anyone who asks. Believe me, I’ve heard every question you can think of.

Yes, I can feel “down there.” I am not paralyzed and have full sensation all over my body.

Yes, I can have an orgasm. Do you know how to give them?

Yes, I could get pregnant and carry a child. But I won’t because I absolutely do not have any desire to be a parent. I am the “fun aunt” and embrace that role with enthusiasm.

Yes, I can have sex. But not with you because you asked me in Starbucks five minutes into our first date. (True story – and not the only time it’s happened!)

There have been strong men through the years who were able to see beyond the obvious and recognize the unique qualities I bring to the table. I have known great love and intimacy. I am certain love will find me again when it is meant to be a part of my life. Since my early twenties, my self-worth has never been tied to my ability to maintain a romantic relationship. I have found fulfillment and happiness in life. The fact I don’t NEED a man or a relationship to make myself feel worthy is intimidating to weak men, but appealing to others. At least, that is what men have told me.

Dating is difficult for everyone. The benefit of doing it from a wheelchair is you get some great stories over time. I really do need to write that book.

Recently Acquired – The Camaraderie of Writers

In response to The Daily Post’s writing prompt: “Recently Acquired.”

I rarely write blog posts in response to the writing prompts here on WordPress or in the writing groups I follow. I participate in blogging challenges, but most of the time I have many ideas I want to explore in writing and I don’t rely on the prompts to get me started. It might be related to the writing responsibilities at my job. I spend time at work almost every day writing something in response to a task or assignment from someone else, so when I get to write for me I want to follow my own ideas.

Today’s challenge is to take on a prompt from the Daily Post. The one I chose asks me to write about something I now know about blogging which I did not know last month. I have learned so much since I started this blog in September. However, within the last month I have started to develop deeper relationships with writers and bloggers from around the world. Sure, these mainly online relationships are new, and are not the same as the face-to-face relationships I have with my long established friends.

However, these virtual relationships are special because they are all built from the foundation of our identities as writers. I have found peers who understand my frustrations, my fears and my pride at accomplishing goals.

“But Denise, you don’t have to be a writer to understand those things.”

You’re absolutely right. We all understand the emotions and fears involved in pursuing our passion. But just like my peers with disabilities have a different view of my personal struggles with mobility impairments – my writing peers can relate to my efforts to find my muse, to select the perfect word, to edit again and again and again and again.

I have connected with bloggers from Australia, including two who live in Tasmania. I hope to meet them in March when I visit. I have been inspired by bloggers who use their platform to share breathtaking photographs from around the world. I have been challenged by writers who make me question my beliefs and make me examine my daily practices.

At first it was tempting to compare myself and my writing to the others I encountered. After all, there are fine writers and talented artists telling their stories here each and every day. But they are sharing their stories, not mine. As much as I enjoy their stories, the writers I have connected with appreciate the courage I display when I share my own stories in my unique voice.

I continue to write, and I do my best to act as a cheerleader to the new bloggers and writers as they join our groups. Nobody likes to be the “new kid” sharing for the first time. The extrovert in me thrives with these new connections, and I hope I get to meet some of these wonderful people in person some day. Until then, I remain grateful to them for welcoming me into the fold and for helping me follow my writing dreams.

Redefining Disability Question 1

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the first question posed in the Redefining Disability Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up in later questions. This first question is really four questions and I will answer all components of the challenge.

Q – What is your experience with disability? Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities?

Disability has always been a part of my life. I was diagnosed at the age of three with a form of muscular dystrophy. Actually, I was misdiagnosed the first time around. For the first half of my life, I thought I had Charcot-Marie-Tooth (CMT) disease. CMT, also known as peroneal muscular atrophy, is a disorder which affects the peripheral nerves. These nerves are outside the brain and spinal cord. They relay nerve signals to the muscles and sensory organs in the limbs.

When I was twenty-two I was correctly diagnosed as having a form of Spinal Muscular Atrophy (SMA). SMA is a motor neuron disease and affects the part of the nervous system responsible for controlling voluntary muscle movement. There are different types of SMA. Doctors tell me I have some symptoms of Type 2 but my progression more closely resembles Type 3. Medical professionals have offered genetic testing but at this point, testing will not make a difference in my daily life so I have decided not to pursue any further investigation into my diagnosis.

I was able to walk until I was twenty years old. In May 1994 I had surgery to fuse my left ankle so I would not have to live with chronic pain. The surgery left me in a cast for the next three months. Despite four additional months of intensive physical therapy, I was not able to regain the strength to walk again. I knew there would come a time when I would require a wheelchair for all of my daily mobility. I was not prepared for it to happen during my senior year of college. I dealt with it as I usually deal with unpleasant declines in my physical ability – by ignoring it and pushing away those friends who encouraged me to attend to my emotional and mental health. I’m glad they stuck with me and were forgiving.

I began using a power wheelchair in 2002. This change made a huge difference in my ability to engage with the world around me because I no longer spent all of my energy propelling my chair and battling inclines. I began to use personal assistance at home in 2007. I manage my own care using Consumer Directed Personal Assistance (CDPA). Instead of being dependent on a homecare or nursing agency to control my life, CDPA allows me to recruit, train, supervise and manage the staff I choose. This self-directed model of care allows me to live as independently as possible, in the community where I belong.

I have many friends and some family members who live with a variety of disabilities. As my family members age, they are facing some of the challenges of adjusting to reduced mobility or the need to alter their daily routines. This has brought about some meaningful and eye-opening conversations about what it means to be independent when one relies on others for assistance.

I am not typical when one looks at disability statistics in the United States in an important aspect. I have been employed full time continuously since November 1996. According to the American Community Survey, a US Census Bureau Survey, only 20.9 percent of non-institutionalized persons of working age (21-64 years) with a disability in the United States were employed full time in 2012, the most recent year for which numbers are available. Compare that number to the 56.4 percent of non-disabled persons of working age who are employed full time. In other words, nearly 80 percent or four out of every five persons with disabilities between the age of 21-64 are NOT employed full time. The numbers in some states are even more stark – like West Virginia where only 15.3 percent of working age persons with disabilities report full time employment lasting for a year. The percentage in my home state of New York is 20.1. You can see the numbers for yourself at the Disability Statistics website created by the Employment and Disability Institute at Cornell University. The reasons for this gap are many, and I am hopeful future questions will permit me to address these.

All of my full time employment has been related to disability in some way. I am a licensed speech-language pathologist and worked in geriatric rehabilitation for the first ten years of my career. I then worked in a public health program tasked with improving health and wellness for persons with disabilities and creating a more inclusive public health infrastructure. I am now employed by a disability related nonprofit organization. My job is to educate, communicate and advocate for CDPA as an alternative to the traditional medical model of homecare. I encounter a variety of disabilities in my daily professional life.

My personal and professional life experiences with disability make me a stronger advocate. My exposure has provided me with empathy towards others of all abilities. The peer support I have gained over the years has been beneficial to my success navigating challenges and obstacles. I also revel in knowing I belong to the only minority group anyone can join at any time – and if you live long enough chances are you will join “my group” as incidence of disability increases with age. I can never be Asian. I can never be Black. I am not a lesbian. But anyone can end up disabled, temporarily or permanently. When I advocate, I am not seeking access for just me but access for all.