With Gratitude, Optimism is Sustainable

Once in a while, the YouTube algorithm will get it right. I will be watching something, and when it ends, the recommended videos will include a clip which sparks my interest.

It happened a few weeks ago. I forget what I had been been watching, it’s not really important.

The suggested video was an interview with actor Michael J. Fox. In it, Jane Pauley talked with Fox about his life with Parkinson’s. I am always wary of these videos turning into inspiration porn. However, I thought this was well done for the most part. If you would like to see the video, you can watch it for yourself here.

At the end of the video, Fox describes how he maintains his positive attitude in the face of a progressive neuromuscular disease. This is a question often asked of people like me and Fox who live with serious disabilities. The answer he provided is one I also ascribe to.

With gratitude, optimism is sustainable.

I use gratitude lists to help me get through dark times, as I have written about in many earlier blog posts. I find optimism by counting my blessings. I have no control over much of what happens with my disability. I can’t control the speed at which my muscles deteriorate. I can do my best to preserve what function I have, but I know I will continue to decline over time.

What I can control, what all of us can control, is how we react to the activities in our lives which challenge us. Do we choose to wallow in self-pity for days on end or do we decide to tackle the unknown one small bit at a time? Do we ignore the support of others and try to fix a problem on our own, or do we reach out and ask others for help? Are we vulnerable in our need, or do we shelter ourselves due to fear of rejection?

There are times when I may do all of those things. I make poor decisions. I wait too long to ask others for assistance due to my stubborn need to prove I can manage independently. I have been known to shut out the world for an afternoon of feeling sorry for myself while indulging in a pint of mint chocolate chip ice cream instead of calling a friend.

However, underneath it all I am an eternal optimist who is always grateful things aren’t as bad as they could be. When I have had enough sulking, the way I pull myself out is to start a new gratitude list. It is what got me through the emergency room after I broke my femur. Gratitude lists made it possible for me to endure the long wait for independent mobility when I bought a new accessible van. Well, that plus antidepressant medication. I mean, gratitude lists can’t do everything!

But, they can help you shift your mindset from one of misery to one of optimism. If you don’t believe me, listen to Michael. With gratitude, optimism is sustainable.

Finding the Right Words

Like many college students, I struggled to decide what occupation or course of study to pursue. After a few months, I decided I wanted to become a speech-language pathologist. One of my professors, Dr. Mark Ylvisaker, taught me a definition of language I still use in my own presentations and writing. According to Dr. Ylvisaker, language is a shared symbolic code used by members of a group to express shared beliefs, ideas and values.

You can learn a great deal about a group by observing language. This week I was reminded how many people use negative language about disability rather than just saying the word “disabled.” Negative language just proves what we disabled people already know – nondisabled people don’t have a positive view of disability. (Side note, if you haven’t heard of the #SayTheWord campaign started by Lawrence Carter-Long, go do your research after you finish this post.)

What do I mean by negative language? I mean the back-handed compliment someone tried to give me by saying, “You’re so much more advanced than others who are dealing with your affliction.” It’s the stranger at the pharmacy who watched me wheel past a display and said, “Look at you handling that so well!” Or the person on Zoom who said, “You don’t even look handicapped Denise!” While all three of these caused my teeth to grind, I’d like to focus on that first example for this post.

That first sentence was said during a phone call with someone, whom I’ll call Helen, I had considered as a potential health provider. In the moment of conversation, I knew I would have to do some education if I were to continue with Helen. I have no problem educating others about disability positive language. I routinely perform this education when I go see my neurologist, who is based at a teaching hospital and has students accompanying him. However, when I am seeking help for myself, I don’t want to have to be the educator for the person I am looking to for assistance. I needed Helen to see my life as valuable, and her stating I had an affliction, which is defined as something that causes pain or suffering, did not set the right tone for me.

If I’m being honest, my disability has given me some privileges in life. Thanks to my disability, and the state of New York, I am eligible for both Medicaid and employer-sponsored health insurance. This means I have not paid out of pocket for hospital stays or medical appointments since 2008. Three surgeries, four hospitalizations, a two week stay at a rehabilitation hospital and countless doctor visits – plus a new wheelchair – at no out of pocket cost to me.

My disability has also provided privilege at other points in my life. I have been able to skip lines at tourist attractions thanks to my wheelchair. I have also been able to bring a companion for free or at a reduced cost sometimes. And who can forget the parking?!

I think most people who use language that may cause me to grind my teeth are just trying to find a common ground. They are afraid to say the wrong thing, at least that is what I tell myself as I try to be patient with myself and with them. After all, I am well-known for opening my own mouth and shoving my foot down my throat.

This is why I am a firm follower of the “oops and ouch” technique. Whenever I say something that doesn’t come out the way I intended, I say, “oops” and explain my intended message. And if I hear something that doesn’t sit well with me or offends me, I say “ouch” and explain why I am having a reaction. This exercise has helped me communicate more effectively with friends, work colleagues and during group presentations. The trick is staying present in the conversation, to apply it when the “oops/ouch” occurs.

I failed to respond immediately to Helen this week when faced with unexpected negative language but I still learned about communicating nonetheless. So, the next time I speak with Helen, or someone who uses language like she did, I can be more prepared to have a meaningful conversation.

I’m Still Here!

Hello friends – I’m back! It has been such a long time since I’ve written and I have missed the connection. I was almost ready to archive my blog but recent events have given me the jolt of energy I needed to resume my daily writing.

What have I been doing? Well, here’s a brief summary to catch up you to speed.

Like so many others, I struggled the past few years. The COVID pandemic has been a challenge, particularly the early days. Even though I have been fortunate to avoid sickness and infection so far, it has been difficult to watch the devastation on my disabled peers and their lives.

I finally admitted to my own mental health issues and depression which have been growing, and this caused me to reprioritize certain activities. I am on medicine, but I continue to struggle to find a therapist to help me further heal and recover. I do not want to have to help a clinician unpack their own internalized ableism while they are supposed to be helping me with my past trauma.

Almost a year ago, my family helped my mother transition from this life to eternal rest. She passed away peacefully on the day that would have been my father’s 95th birthday. I am grateful to everyone who sacrificed to allow her to spend her last days at home. Although it was sad to say goodbye for now, it was wonderful to gather with friends and family to celebrate her legacy. Mom was known for her hospitality and kindness to all. The world would be a better place if we accepted each other without judgement, but rather with compassion and love as she did.

I changed jobs in 2022, and then again this past September. While I love advocating for home care for people with disabilities, my strength is not in the realm of care coordination or social work. Medicaid home care remains in crisis but my own mental health issues meant I was burning out as a peer advocate. Fortunately, a position opened up which provided an opportunity for me to return to public health work. I spent just over a year working in a state program focused on building a more accessible and inclusive public health infrastructure and increasing health outcomes for people with disabilities. I enjoyed the challenge, but never felt like it was the place I was meant to be.

Then, an opportunity presented itself and I couldn’t resist taking a chance. Three months ago I became the new Executive Director of the New York State Independent Living Council. The work is challenging, but it feels purposeful. I have a great staff to work with and amazing Council Members who are committed to independent living for people with disabilities. Most days I feel like I’m playing catch up and still trying to figure out what I’m really doing, but at the end of the day I am grateful to have the chance to make system change happen on a larger scale.

I remain involved with Rotary at both the club and district level. I served as District Governor for the greater Capital Region of New York (Rotary District 7190) from July 2022-June 2023. It was an honor to serve and support the clubs in my district as they resumed in-person meetings and events. If you are familiar with my writing here, you are aware of my history with Rotary and my prior travels as a Rotary youth exchange student.

The highlight of this year was a return trip to Australia in May. This time I was able to bring my bestest best friend Stephanie with me and we had an AMAZING adventure. There are many future blog posts to come about that, so please stay tuned. During our trip, we visited my former host families and Rotary hosts, and participated in the Rotary International Convention. We ended our two-week tour with a brief stay in Sydney where we were wined and dined by my best friend from Australia, Ulla.

Stephanie, Ulla and I enjoying a glass of wine at the Sydney Opera House.

I’m looking forward to getting back into blogging and sharing my writing. Thank you for taking the time to reconnect. I hope you will come back in 2024 as I get back into DeeScribes!

A Good Morning?

As I start typing this, it is 7:31 AM on a Thursday. I have only been awake for an hour and a half, but already I feel like I have worked a full day. Some days, it’s like that when you use Consumer Directed Personal Assistance (CDPA) or self-directed home care.

In CDPA, I am the “CEO of me” and I am in charge of personnel. I recruit, train, supervise and manage the home care workers (Personal Assistants or PAs) who work for me. A business called a Fiscal Intermediary is responsible for the administrative paperwork and payroll required so my PAs get paid. In New York, where I live, I choose my Fiscal Intermediary. I happen to be employed by the Fiscal Intermediary I chose, Consumer Directed Choices.

It’s difficult to explain to nondisabled people who don’t use CDPA how intimate personal care is. Personal care creates a codependency in which both parties, the care recipient and the caregiver, rely on each other for a variety of reasons. I cannot function without the women I employ. They cannot function without the wages they earn from their work. We are tied together by complimenting needs, but we have developed relationships over time which go beyond typical employer/employee constraints. And for me, the most important member of my care team is the morning PA.

Today started like most mornings. My alarm buzzed. I shut it off and took stock of my surroundings. I heard Tina, my morning PA, in the bathroom. I smelled coffee. So far, so good.

As soon as Tina came into my bedroom, I knew something was wrong. Her energy was flat and she was not her usual upbeat, positive self. I could tell she was not feeling well and knew this would impact my morning. Tina and I have worked together for seven years now, so it is easy for me to gauge how she is feeling with just a look. She is the first person I see most days and normally makes my transition from sleep to work an easy one. We can anticipate each others movements and know how to make the morning routine go smoothly.

So today I was not surprised when she looked at me and said, “You OK for a minute Dee?” before running to the bathroom as I nodded. Tina was sick and I was going to have to change my routine before even getting out of bed.

This is what happens when you rely on other people. At least this is what happens to me.

When one of my PAs is sick or unable to work, I instantly go into problem solving mode. This level of executive functioning is necessary for me to be able to juggle my own bodily function needs while still balancing the need to show up for my job as my employer expects. The thoughts that filtered through my head this morning went something like this:

Is Tina too sick to at least get me out of bed? Is a shower out of the question? If I send her home, is there anyone else I could call to finish her shift? What is absolutely required for me to be able to function today?

Thankfully Tina was able to help me get out of bed. However, it soon became apparent she was too ill to continue her shift. Then the questions in my head shifted:

Is there anyone else I could call to help me use the toilet? If I don’t shower this morning, when can I shower? What time is my first meeting today? Am I on camera? If Esther helps me use the toilet after her shift at her other job, would I need to reschedule any work meetings?

I sent Tina home after she helped me put on a clean shirt (at least I will be presentable on camera!). I left a message for Esther and turned on my computer. I said a prayer of gratitude – at least I’m out of bed drinking a cup of coffee!

I logged onto my work computer to check email. My body started sending me signals that waiting for Esther wouldn’t be possible. I opened my contact list and started scrolling. The questions began again:

Who is relatively close and could spare an hour to help me use the toilet? Sally can’t make it before she has to be to work. Brooke has class this morning. Margaret never responded the last time I was looking for someone so is it even worth asking her? Maybe Sandy hasn’t left home yet and has time to stop on her way to work.

Thankfully, I caught my sister Sandy just as she was getting ready to leave home. She didn’t need to be at the office today until 10 AM. She had time to stop over and help me use the toilet. It was time for a quick gratitude list:

• I’m up and out of bed.
• I have coffee.
• The internet is working.
• I am able to work from home so it doesn’t matter if I am only dressed from the waist up (Guess what? I’m only dressed from the waist up today!).
• And I’m getting a quick visit from my sister.

Now it is 8:15 AM and Sandy just got here. It’s going to be a good morning after all.

Does It Inspire You to Action?

Inspiration. What is it? According to Merriam -Webster, it is:

• 1. An inspiring agent or influence
• 2. The quality or state of being inspired
• 3. The act of drawing in – specifically the drawing of air into the lungs
• 4. The action or power of moving the intellect or emotions

People find inspiration or become inspired in many ways. For some, a sunrise can be inspiring. Others are inspired by observing an act of strength or sacrifice. Words inspire me. They have the power to move my emotions and influence my behavior.

This weekend I had the privilege to listen to several inspirational speakers as part of the Rotary Empire Multi-District President Elect Training Seminar (MD PETS). Social gathering restrictions meant this year’s seminar was held virtually rather than in-person. While this reduced the opportunity for spontaneous fellowship, it allowed the planning committee to invite amazing speakers from across the globe who would not have been able to attend if our event had not been virtual. At the end of the seminar yesterday, I made a list of the steps I can take to be a stronger leader in my Rotary club and professional life. I started to imagine how the words of inspiration could translate into new activities.

Whenever I feel inspired, I challenge myself to look deeper. I try to identify how I can convert my feelings into at least one new action. This activity was caused by my own emotional reaction to nondisabled strangers calling me inspirational. My automatic responses to what was intended to be a compliment were limiting my chances for meaningful discussions.

I am an open person, not shy about sharing my personal stories in my writing and public speaking. I want to be an accepting, humble, and grateful person. I am proud of my accomplishments but I don’t see myself as having done great things “in spite” of my disability. Rather, I have completed many tasks, activities and adventures as a woman who happens to be disabled, just like I happen to have brown hair. My disability has always just been a part of who I am, not something I have had to “overcome” in order to live.

But when nondisabled strangers labeled me as inspirational, I rushed to judgement without giving them the benefit of the doubt. I internally rolled my eyes, assuming they found me inspiring because of my disability rather than taking the time to question them about their statement. I closed myself off to a possible dialogue or the gift of connection because it was easier to group that stranger with people who gave compliments to make themselves feel better about themselves. After all, doesn’t everyone know disability is a fate worse than death? Instead of taking the time to learn why a stranger offered me what might be construed as praise, I would jump to cynicism.

Once I realized what I was doing, I began to examine the reasons why. If friends or family called me an inspiration, they often told me the reason. This meant I did not doubt their motive or intent. So, I started to ask a follow-up question whenever a stranger told me I was inspirational. Instead of automatically assuming intent, I began to smile and say, “What have I inspired you to do?” or “How have I inspired you?”

The responses to this question have been varied and revealing. Only a few people told me they were inspired because my own disability made them feel better about themselves. One brave person actually said, “If you can do everything you do being so disabled, I don’t have any excuse.” Some people are stunned, shocked at my response. A few people have felt challenged and become brusque, responding with comments such as, “Well, I was just trying to be nice!” or “Can’t take a compliment?”

Then there are the people who redeem my faith in others. They tell me they are going to advocate for inclusion. They are going to stop holding public events at venues that aren’t accessible for everyone. They are going to start captioning their YouTube videos. They are going to stop assuming all disabilities are visible.

When we rush to judgement, we lose the chance for meaningful discussion. If we act on our incorrect assumptions, we never have the opportunity to be blessed with insight about ourselves. My quick dismissal of the “inspirational” label applied to me by others robbed me of a gift. My own story could have an impact in meaningful ways, just like I am moved to action by the words of others. Some of these may be related to disability, but not always. Why did I continue to assume the worst for so long?

I continue to struggle when others call me inspirational. There are times I feel unworthy of the praise. But I am still doing my best to try not to rush to judgement and indignation. Asking questions has helped me understand I can be viewed as inspirational for non-disability related reasons, even by those who do not know me well. And when I offer the word to others as a compliment, I tell them why in case they are internally rolling their own eyes.