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Living and Working with Chronic Illness [Guest Post]

This post comes from one of our recurring guest bloggers, Reina Grosvalet. Reina is living with mitochondrial disease but is currently doing what she can to make the best of life. She spends time not only working and caring for her cats and her cat sanctuary, but she also tirelessly educates others on what it’s like to live with debilitating and chronic illness and pioneers to make the world a more equitable and accessible place for those with disabilities.

The time is seven A.M. Your alarm is ringing, and it is time to wake up and get ready for the day. You press the snooze button hoping for just a bit more sleep. This is a routine that is all too familiar for the working class. For someone with chronic illness, things are far different.

Starting the Day with Chronic Illness

When someone with chronic illness wakes up for the day, the energy batteries are starting out at 50% or less. A person with chronic illness is not going to start the day with a full charge of energy in the same way as a healthy person. I like to compare those of us with chronic illness to a cell phone with an old battery. Think of how an old cell phone functions when the battery capacity is no longer at its peak because the battery is old. With such a cell phone, the user is limited to what tasks can be performed. The user must determine which apps are most important to run and only do what is essential to make the most of this old cell phone battery.

Chronic illness and the energy deficiencies that come along with it limits how much we can get done. Ad pain to the mix, and we are drained even further. Even though many do not believe this, but everyday tasks can be immensely draining. Depending on how bad the illness is, getting dressed and getting out the door can be a huge ordeal. The morning routine is so taxing to some that they feel drained before they even arrive at their places of employment.

Those of us with chronic illness need to determine how much we can do. If we work or care for a household, we must look at all our tasks and determine what is most essential and what can be put off until later. We cannot afford to use our limited energy on nonessential tasks. Counting the cost is a daily occurrence in the life of someone with chronic illness.

Counting the Cost

When we want to work, perform chores, take a vacation, socialize or engage in fun activities, we need to look at our energy budget. We assess how we are feeling, and we determine what each activity will cost us. Then, we work hard to balance our energy budget in the same way we balance our checkbooks. We strive hard not to go into energy debt because if we do, we pay a steep price. For some, it is a week in bed. For others, there are more severe consequences, such as a metabolic crash or crisis. We need to determine how much we can do without pushing our bodies into energy debt.

Balancing the energy budget takes lots of planning. Some of us with chronic illness decide that certain activities can only be done on certain days to allow time to rest or to keep from overexerting ourselves and suffering tremendously. For many of us who work, we may choose to only care for housework and errands on weekends and do nothing else but work and commuting during the week. Those of us who want to engage in a fun activity that may last for the entire day will take a period of rest that lasts anywhere from a couple of days to one week to ensure we have the energy we need to get through that day, and sometimes, that is not even enough. It all depends on the extent of the illness and how it impacts our lives.

Chronic Illness and Today’s work Culture

Living with chronic illness is challenging, especially when coping with today’s workplace culture which holds constant productivity in high regard. Many of us who live with chronic illness push ourselves into energy debt trying to keep up with the demands of our employers, and we must spend our weekends recharging and not doing anything else which causes our quality of life to deteriorate significantly. When all that is done is working and resting, there is no time for socializing, doing fun activities and caring for other responsibilities.

Many of us with chronic illness need to assess our situations on a continual basis and make changes where necessary. If we find that our current jobs are too taxing, we need to change our course and seek employment that will suit our circumstances. It is not unheard of for those living with chronic illness to work 100% remote because the demands of commuting and being at the office are too much. Finding jobs we can do and having supportive employers make all of the difference in our world.

My Experience with Chronic Illness

As I got older and as my condition progressed, I found myself having less energy to get all the things done that I needed to in a day. I have Mitochondrial Myopathy, a form of Mitochondrial Disease. As the disease progresses, the sufferer contends with less energy because more of the mitochondria start to fail. The mitochondria are the power houses of our cells, and they provide us with the energy to function and sustain life. In addition to contending with less energy, I have also experienced more nerve pain.

At first, I was able to commute and work at the office with some difficulty, but it was manageable. I needed to be careful how many other activities I did outside of work that would sap my energy. I had a rule that household chores and errands could not be done during the week as I could not work and take care of my chores and errands. Commuting on public transportation to and from work almost three hours each way took lots out of me. And of course, I also had to work eight plus hours a day. This strategy of handling chores and errands only on weekends worked for me for many years. Then, my health deteriorated so much that this strategy no longer worked.

Now, things are different. I must work from home as a 100% remote worker. I simply do not have the health or energy to commute and work in an office setting. Quite often, I work from my bed. I am thankful that my employer is accommodating and understands what I need in order for me to continue to do the job that I love. I am thankful I have a large support network who understands me and who is willing to work with me and love me struggles and all.

For those of us who live with chronic illness, we need love, compassion and understanding. If we tell you our energy levels are low, please accept that and show us all the love and compassion you can. If we need help with activities, please extend your hand without judgment. Also, understand that just because we could do something yesterday does not mean we can do it today because we may be too tired or in too much pain. Also, do not consider us to be lazy. Sometimes, even the smallest activities cause us to feel like we want to fall out. Being part of this chronic illness journey is tough enough, but your love and understanding can make a significant difference in our lives.

More About My Book-Updates and Resources!

First, a big thank-you to all who have read, reviewed, and promoted my new book. We couldn’t do it without all of you!

The book is available on Amazon in paperback and Kindle formats, or from me in accessible PDF, MP3 audio (using synthesized speech), digital braille, and hard-copy braille.

Check out all the information here!

A self-narrated Audible version is planned for early 2022.

Want to learn more about the book?

Check out my interview on the BlindAbilities podcast (transcript included)

Check out a video about the book, including a short reading

My book is live-get your copy today!

I love when things happen ahead of schedule. It’s a rare joy that helps balance some of the franticness of life.

My memoir, titled Just Human: The Quest for Disability Wisdom, Respect, and Inclusion, is now available for purchase in paperback and Kindle formats here:

Accessible PDF and hard-copy braille formats are also available through direct purchase, with other formats coming soon! Email me at arielle@disabilitywisdom.com for more details.

About the book:

Born without sight, Dr. Arielle Silverman has never missed the visual. Being blind never bothered her much but, as she grew, she discovered others saw her blindness very differently. Many people saw her as either helpless or inspirational, but rarely did they see her as just human, with the same capacities and desires as her peers.


Arielle has spent a lifetime exploring ways to foster respect and inclusion, not only for blind people like her, but for all of us whose bodies or minds differ from the norm.


In Just Human, she reflects on her formative years and presents unique anecdotes from her life that carry teachable moments for all of us. She recalls the feel of her mother’s embrace, the smell of her grandparents’ brisket, the inner sensations of a preteen crush, the music on her wedding day, and scholarly lessons from her dissertation research. Her words paint pictures from her mind’s eye: a vision of a world where we can radically accept ourselves and our fellow humans, while at the same time work to change systems of inequality. As she writes of the past and the present, Arielle looks toward the future, considering how we can build a more inclusive world for those who come after us.

………..


Just Human will inspire you… Not in the feel-good way some stories do, staying at the surface level of the lives of people with disabilities. Instead, Arielle’s memoir immerses you into the real-life reflections of a blind woman, from birth to adulthood. At times heartbreaking and at other times light-hearted, her narrative cloth methodically weaves in threads of disability history, theory, and wisdom. This vast compilation of experience, research, and applicable strategies has the potential to heal age-old misconceptions and stereotypes that perpetuate barriers to inclusion and equality. Arielle has done much of the work for us. Now we must be willing to dive below the surface to listen, human to human.”

—Sarah Mason, mother of a blind daughter, and educator of blind children and youth

A New Chapter (Or Chapters)

If you haven’t forgotten about me yet, you may have noticed I haven’t blogged in a while. Don’t worry, I’m still alive and kicking. I’ve just been busy.

On September 7, 2021, I started a new job as the research specialist at the American Foundation for the Blind. I’ve also continued working part-time with the NFB of Virginia, supporting our wonderful Project RISE youth mentoring program. It’s taken me some time to figure out how to juggle my new roles.

However, though I haven’t been blogging, you’ll soon have the opportunity to enjoy a really long blog post of mine, i.e. a book!

On November 15, I will be releasing my memoir, titled Just Human: The Quest for Disability Wisdom, Respect, and Inclusion. It’ll be available on Amazon (paperback and Kindle) and as an accessible document via direct purchase.

I started building this book by considering events from my life, many that I’ve already shared here, such as that time I licked my grandparents’ dog, and that time I slacked on my algebra final. I tell the stories, and then I reflect on the lessons and implications for the Disability Wisdom philosophy, and for society more generally. Within each of the 18 chapters, you’ll read a story, and you’ll also learn about relevant disability history, research, and receive a call to action.

In the summer and fall of 2020, as I sat in my home office sheltering from COVID, hearing about police brutality, racism and political unrest, I wrote the final chapters of this book with my mind on the younger generations. There, the story shifts from my own storytelling to a presentation of practical things we can all do to make life better for them, and for ourselves.

Truthfully, I don’t expect to get rich from this book. I might not even recoup my initial investment. But I want it to get into the hands of disabled young people, parents, educators, employers, policymakers, and everyone else who has the power to make the world more inclusive. If even one young person reads my book and comes away understanding they are “good, whole, and have infinite human worth,” it’ll be a win. If even one parent reads my book and gains hope and strength around their child’s new disability diagnosis, or if even one educator reads my book and transitions from punitive methods to collaborative solutions when working with a “behaviorally challenging” student, it’ll be a win.

I’m asking for your help making these wins happen. Here’s how you can help:

  • If you’re on Facebook, join my book’s Facebook group to get updates on the book launch.
  • On November 15, purchase my book using the Amazon link (coming soon) or email me at arielle@disabilitywisdom.com for a direct copy.
  • If you like the book, consider posting a review on Amazon.
  • Share the book information with people you know, especially professionals in the disability field, parents of disabled kids, and disabled young adults.
  • Suggest it as material for your book club or reading group, if you belong to one.

I appreciate your support and look forward to sending more updates soon!

Blind Just Is [Repost]

Picture of Alysa Chadow
Picture of Alysa Chadow

This week’s post comes from Alysa Chadow. Alysa Chadow was born and raised in New York, and has taught the blind and visually impaired at all grade levels in both New York and California. This tale about Alysa’s first guide dog is just one of the stories she has been writing since her retiring from the California School for the Blind in 2017, where she spent 18 years as a classroom teacher. In addition to her background in Special Education, she has taught Anthropology and English. She lives with her third guide dog Carmel, a black lab-Golden Retriever mix, and her partner Brian, a retired Civil Engineer.

  Sometimes, fitting in can be a real challenge.

  I’ve been visually impaired since 16, when a brain tumor damaged my optic nerve. I can see some from my right eye, and none from my left. I used a cane for years, and received both good and bad attention. I decided that having a guide dog would help me blend in. I hoped that the $30,000 spent breeding, raising, and training a dog would do that.

  In 1998 I received Patsy, a Yellow Labrador Retriever. She was an excellent guide dog who took me anywhere I needed to go and stayed focused while doing that, except for the times she shoplifted.

  First, there was the candy rack caper at my local drug store. Guide dogs are trained to walk on their handler’s left side. I have no vision on my left side. Of course, the candy rack was on my left side. Patsy darted for it, and I gave her a strong leash correction. I made my purchase, praised her, and made ready to leave the store. That was when I noticed a large Nestle’s Crunch bar sticking out of her mouth. I snatched it from her, tossed it onto a nearby check-out stand, and fled as fast as our six feet could carry us.

  The local bakery had baskets with bread in them, the lowest level with Patsy’s head. Often, I had to pull her away from the basket while shopping. I got pretty good at it, too. One day after leaving the bakery, I decided to tell Patsy what a good girl she’d been. She looked at me, tail wagging, a huge Kaiser roll protruding from her mouth. People walking past must have seen the roll. I wanted the sidewalk to open up and swallow me, but all I could do was grab that cursed Kaiser roll and throw it at a tree. That was her first bakery heist.

  In the second, we were in the grocery store when I busted her. I caught her when I squatted to reach my favorite tea. Imagine the stock clerk’s surprise when finding a soggy Kaiser roll among the boxes of Oolong and Earl Gray.

  Suddenly her shoplifting spree stopped. Patsy’s criminal career was over, and we went about our business blissfully blending in.  Life was beautiful!

  One day, while walking home, Patsy lunged to the left, my blind side. I gave her a strong leash correction, then moved on, satisfied that I had done my job controlling my girl. People passed us, broad smiles on their faces. No doubt they were marveling at what a great dog Patsy was. Now that was the kind of attention I could live with.

  We passed someone with a dog. Typically, Patsy would leap at it like a giant salmon. She didn’t. What a good dog!

  At a street crossing, a young man on a bicycle pulled up beside us. I could tell he was friendly, and about to complement me on my dog. I could hardly wait!

  “Excuse me Miss. Do you know your dog has a piece of pizza in her mouth?”

  I stared at Patsy, who looked at me, a huge slice of cheese pizza dangling from her jaws.

  That was why she lunged. That was why people smiled. That was why she ignored the dog. Thirty thousand dollars’ worth of training undone by a $3 slice of pizza.

  “Patsy!” I said, trying to keep murderous thoughts at bay. “Give me that!” and snatched it from the mouth of my highly trained dog.

  “I’ll throw that away for you, Miss.”

  “Thank you.” Just the kind of attention I wanted.

  We walked the last blocks home without incident…thank God. It was time for Patsy’s dinner, and feeding her took my mind off that stinking slice of pizza.

  It was my routine to groom Patsy after her dinner. “Patsy, sit.” She obeyed, and then half closed her dark brown eyes as I ran a brush through her thick yellow coat.   Suddenly, something occurred to me. Yes, Patsy snagged a piece of pizza. Yes, she attracted unwanted attention. Yes, she made me feel different.

  But mostly, she guided me perfectly across streets, on and off buses, in and out of stores. She made me feel like anyone else. She made me feel in control. She made me feel safe. The value of that was a small price to pay for being a patsy.