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.
I woke up very hungry this morning and decided to make something for breakfast using whatever I could find in my fridge. My eyes landed on the package of blueberries next to the yogurt and I immediately thought, “Pancakes would be great!”
With the help of a quick search, I found a recipe for Fluffy Greek Yogurt Blueberry Pancakes and my personal assistant Brooke started gathering ingredients. Together we measured and stirred, ticking off the list as we added each item, flour, baking soda, sugar and so on.
We were about to add the dry ingredients to the wet (that’s flour mix into egg and yogurt for you non-bakers) when I realized the recipe didn’t call for vanilla. I am a firm believer that most any baked item can be improved with the addition of a little dash of vanilla. So, even thought it wasn’t listed, I tossed some in.
I have had personal assistant staff look at me in horror when I changed a recipe by omitting or adding something. Thankfully, Brooke has cooked enough with me to know I like to modify ingredient lists and often agrees these changes result in good outcomes.
This was the case today because we both give these pancakes a 5 out of 5 review! They were fluffy, as the title promised. They puffed up and each bite contained at least 2 blueberries. And yes, the vanilla added just the right amount of flavor to make this my new go-to.
So many things in life are like a new recipe. You can follow it step by step as written and get good results. Or, you can try changing a step to see if it makes a positive change.
The change could result in disaster. Nobody wants me to repeat the adventure when I accidentally used flour instead of powdered sugar while making icing. And despite what “they” say, sweet potatoes can’t always substitute for pumpkin in baking recipes. When I tried to change my personal care routine a few years ago to having evening showers instead of morning, my schedule fell apart.
But, sometimes the addition of an extra step makes for the perfect twist. Don’t believe me? Try adding just a splash of almond extract to your next batch of chocolate chip cookies. Or, try pausing a moment each day to make a short gratitude list during your morning routine. This addition will help you be present with a more positive outlook as you face another day of possibility.
I don’t have the perfect recipe or instruction set for life. What I have is an ever-growing collection to help me achieve what I want. Over time, I modify the recipes to meet my needs and tastes. Some recipes appear and become favorites, while some are memories of a different time when my tastes or needs were not as developed as they are now.
Whatever recipe you are following, you have control of the final ingredient list. If something isn’t working, or tasting right, keep working at it until you find what is missing. Or, toss that recipe out and start a new one.
Just don’t stop experimenting. You’re worth a 5 star review!
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!
It has been months since I’ve written a blog post. Months since I sat and stared at the cursor and thought, “That’s worth sharing with my followers.” So much has happened – COVID, adapting to remote working, protests, theater shut downs – you know. LIFE. Maybe not life as we know or knew it, but life as it IS.
If I’m honest, I’ve not been consistently coping well. But I’ve been coping. Doing the best I can, like most everyone else I presume. I mastered Zoom. I hosted virtual happy hours. I called and Skyped with friends from around the world.
It’s not been easy. At a time when I want to be out in the streets, I am home because I know my chances of surviving another pneumonia-induced ICU hospitalization are poor. I should be out exploring the world in my new van. I have been to the gas station to fill it up four times since March 13.
Throughout the past six months, the relationship I have relied upon and leaned on the most is the sisterhood I have with my bestest best friend, Stephanie. Together we have laughed, cried, hosted a Hamilton watch-party, consumed tubs of popcorn while on opposite ends of the phone, and kept each other as positive as possible.
This week we’re both struggling. I have an injury. She has a multi-day migraine. I’m suffering Zoom fatigue. She’s managing an empty nest and caregiving for family. It’s difficult to maintain optimism and positivity when you are in pain and feeling overwhelmed.
This afternoon, she sent me the following words. I told her it captured a great deal of what I’m feeling and would make a great blog post. Actually, what I really said was, “I think your rant makes for a great blog post. It makes me wish I wrote it first. But I don’t have the energy to write, or a shoulder that would let me type that long.”
She gave me permission to share it, as long as I gave her credit. So, here are her words, unedited and raw. Today they describe where we are at. Tomorrow we’ll be better. Tomorrow we’ll go back to being optimistic. Or we’ll need another day.
But we’ll have each other. And for that, I am blessed beyond words.
I’m Over It
by Stephanie Canfield
I’m over people.
I’m over the ones that work at a job for a short time, maybe a couple months to a couple years, always looking for something better, and call those jobs a “career”. I have a career in banking…I’ve been doing it for 24 years. Not two years, until the next best thing came along, but for more than half of my life.
I am over the ungrateful ones that get a job and then complain about that job from day one. And when they finally do leave, are ungrateful that the institution even gave them a chance to begin with. I’m tired of the ones that are 25 years old, working for a 79 year old boss, that refuse to understand the generation gap and that your ideas about how a business should run and how you treat people might be a little different. And that not all of those practices are bad just because they may seem outdated.
I’m over people blaming their job for all of their problems, including “inflaming my tennis elbow so I wake up in pain and have to go to the chiropractor and get acupuncture”. Pick a profession…I’ll show you that doing the same motion over and over will eventually cause problems with any given part of your body.
I’m also over the people that don’t realize that just because they live their life a certain way that it isn’t the same for everyone else. Just because you have a great relationship with your parents doesn’t mean you’ll have one with your kids. Or that anyone else will. Or has.
That just because a person isn’t Black doesn’t mean that they can’t stand up for the Black Lives Matter movement, or that just because they ARE Black it means they have to. I’m tired of people’s opinions about masks, COVID, politics…and the fact that sometimes when people ask “how do you feel about this mask stuff” that maybe they’re just trying to start a conversation with you, or engage in small talk, not have you judge them because they don’t agree with you.
I’m over political ads. I’m over everyone’s feelings being hurt because they don’t feel included in whatever the hot topic is at the time, or the conversation at work, or the dinner table, or whatever. I’m over people fighting one another about kids going back to school, or not, or homeschooling, or remote learning. I’m over the debates about there being no jobs but seeing “help wanted” signs everywhere, and stimulus checks, and not getting charged taxes for now but paying them back later, about who should get bonus unemployment money, the definition of essential workers, and disgruntled workers that have jobs not getting paid as much as those on unemployment simply because they’re still going to work every day.
I’m tired of people forgetting how to be kind. I’m tired of people that are selfish but think they’re acting on behalf of the majority, when in reality they’re only self serving. I’m tired of people that think educational institutions have to take only their child and their child alone in to consideration instead of looking at what is best for that educational community.
I’m tired of people that are lazy and don’t take care of themselves or hold themselves accountable for their own well being. I’m over well meaning people pissing me off because they think I can’t handle simple tasks, like getting myself up on time, so they feel the need to “wake” me up, even when I’m awake. How the hell have I managed to get up and to work on time this many years without their help???
I’m over so many things, dude, and I’m ready to yell FUCK OFF to the entire world. To tell them all to get over themselves, take accountability for their own actions, quit blaming others, do what you feel is really and truly right and all the freeking rest will PROBABLY fall in to place. Do what you need to to get yourself to survive, and along the way if you have the opportunity to help someone else then you damn well better step up and take it! If you are able to hold yourself accountable DO IT, and then help those that TRULY aren’t capable, not the ones that are just too damn lazy to do it.
And for fuck’s sake, BE NICE TO OTHER HUMAN BEINGS. And animals. Be nice to them, too.
OK. Maybe I’m done.
And I probably have opposite opinions on everything I just said, since I can hardly ever pick a side, because of my damn ability to see more than one side to most situations.
I’ve been sitting on this post for a few months, writing when I felt the urge. It seems fitting to share this today, which I just learned is the International Day of Happiness, because I am the least happy I have ever felt in my life and I don’t know what to do about it. Admitting that is difficult, because I know my friends and family will want to help me, make things better, do something to make me happy. The reasons for my unhappiness are complex and there are no easy fixes. Trust me, if there were, I would have done them by now.
This has been building since I lost more physical independence after my femur fracture in 2016. That catastrophic event took away my ability to independently drive my van, and increased the number of personal care hours I require. It also caused me to change how I use the bathroom, limiting my ability to pee freely as I described in this post. OK – to be fair, I’ve never been able to pee freely. But, until I broke my leg I was not limited to the use of three bathrooms on the planet.
The loss of independent transportation required me to move – twice – in the past eighteen months. I have been using my local paratransit system for most of my travel to and from work and events. Paratransit is a shared ride system, which means you are not guaranteed a direct ride from your pick up location to your destination. There have been days that I am picked up at my house (which is 15.9 miles from my office) to ride around for two hours, picking up and dropping off other passengers until I am dropped off at work. On average, I spend two and a half hours every day on the bus to travel my 32 mile round-trip commute. This is time I don’t get to write, volunteer, read, work, or just relax.
Last September, my friend and former college roommate Chris surprised me with a phone call. We hadn’t spoken since the start of summer, but our friendship is one where we can pick up exactly where we left off even if it has been months since the last conversation. We we played catch up and traded stories, I admitted that the past several months had been stressful. My exact words were something like, “I’m not really doing well and feel like I’m barely keeping it together most days.”
Chris was quiet for a moment, then responded, “Well, I wouldn’t have known that from your Facebook posts! You’re so busy, and always writing about volunteering with Rotary.”
The truth? I hate being negative all the time. So I don’t share all the crap I’m dealing with on social media.
I am not alone in this. According to a survey conducted in Great Britain, only 1 in 5 people are truthful in how they portray themselves on social media sites like Facebook and Twitter. According to the marketing company Custard, who performed the survey:
When asked how people’s lives differ online, 31% of respondent said that their social page is “pretty accurate, just with all the boring bits removed” and 14% said that their profile makes it look like they have a “much more active social life.” The survey also showed that men are more likely to lie about their lives through social networking sites, with nearly half (43%) of men polled admitting to fabricating facts.
I don’t feel like I’m lying on social media. I am not making up the things I share publicly. In my case, I choose to try to keep complaints to a minimum on Facebook. I am consciously not sharing most of the daily stress that is causing me to slip further into a pit of unhappiness. At least, I try my best to keep the negativity to a minimum.
But I’m struggling. Right now, finding positivity is a chore I force myself to complete each day.
It used to be my natural way of operating. I am an optimist. I see the glass half full. I believe things could always be worse. Yet, recently I don’t feel up to the challenge of maintaining optimism.
I have withdrawn from friends and family who care. I text instead of calling because it requires less energy. Until last week, I hadn’t sent a birthday card to anyone in at least two years. At a time when I should be surrounding myself with other positive people because I’m an extrovert who gets energized in social situations, I am hibernating.
I am not writing as often and when I do it’s not my best work. Writing helps me process what is happening in my world. It is a way for me to maintain balance and emotional stamina. A glance at my blog statistics shows I only posted 55 times in 2017. That may seem like a good number. But when you compare it to 2015, the year before the femur fracture, it pales to the 164 posts I shared.
Before any of you start sending me notes reminding me that you love me and that life is not all bad, I need to tell you something. I KNOW this is temporary. I KNOW what is happening in my life is not the worst thing in the world that could happen. I KNOW there will (eventually) come a day when my new wheelchair doesn’t make me cry in pain. I KNOW I will (someday) get that new wheelchair accessible van with the high tech driving controls which will enable me to participate in my community at will. I KNOW there are millions of disabled people who would love to have the difficulties I am facing right now – people who don’t have accessible housing, access to paratransit, full-time employment, adequate personal care assistance. I KNOW I am speaking from a world of privilege they do not have and would gladly take in a heartbeat.
Knowing those things does not make the challenges I’m facing less real or less of a barrier in my life.
Last week I attended a book reading at my local independent living center. During the community discussion after the reading, someone mentioned the anger disabled people feel – anger that is not acknowledged or validated. Often, well-meaning people will listen to me vent in frustrated anger and respond by saying, “Well, at least it’s not this (insert awful thing here)” or “It could be worse! You could have (insert other disability or illness here).”
Those comments don’t help me feel less angry. They don’t acknowledge that here and now, I am living with levels of fear, anger, and unhappiness which threaten to burst out at inappropriate times. They don’t validate my feelings of discouragement at having to battle and navigate a bureaucratic system which is supposed to be helping me but has not produced anything meaningfully helpful in 18 months (I’m talking about you ACCES-VR).
So, today, on this International Day of Happiness, even a gratitude list doesn’t make me feel happy. I debated whether or not to share this post and eventually decided perhaps there was someone else who is not happy today who could benefit from knowing she is not alone. I edited, deleting swear words and prepared myself for the reaction it will bring.
Tomorrow I’ll be better. That’s the way it’s been for over 2 years. This too shall pass. Periods of happiness can be found, just not for me today.
DeeScribes 