You Don’t Have to be Someone’s Inspiration

Kolya Alvarez

By Kolya Alvarez

I am always glad to celebrate someone’s successes. Everyone’s accomplishments look different, especially when you live with a chronic illness or a disability. While I love congratulating people on their achievements, I’ve noticed that some ways of doing that are better than others.


Kolya Alvarez


When scrolling on Facebook, I sometimes come across inspirational videos involving people with disabilities. They often follow a similar format. The amputee who runs marathons. The girl with autism who was asked to prom. The guy who lost his limbs, but has a wife and kids and a job as a motivational speaker. These videos say to us that if these people can do this, then we can do anything.


While these videos can inspire some, they also send an unintended message to other people with disabilities. These videos say that my illness is no excuse for not doing as well, if not better, than someone who’s able bodied. It says to others that their struggles are less valid because, “If this person can do it, so can you!” It says that real success is going above and beyond, even if this world was not built with us in mind.


Some videos even seem to paint us as tools to make non-disabled people look better. It shows them that they should get a cookie for treating us like anyone else, like the example of the girl with autism getting asked to prom. This kind of video assumes that treating us with dignity is a good deed, rather than the bare minimum of what we deserve.


These videos also gloss over many other people with disabilities. For every girl with autism that is asked to prom, there’s another who is non-verbal and can’t go to a public school. These videos gloss over people with invisible disabilities, like chronic pain, heart or lung conditions, and other things they “can’t see.”


success on couch


The word success is tied to the idea of pushing our limits. This can be incredibly harmful for many of us, and even impossible for others. Instead, I challenge us to change that definition and recognize what our successes look like. No two people’s needs are the same, and there is no one-size-fits-all definition for success. Recognize what someone’s achievements are, and congratulate them on those instead of someone else’s. Rather than running a marathon, maybe the real victory is taking a day to rest at home.




Kolya Alvarez is a Spoonie with Ehlers-Danos Syndrome. Kolya is very active in making sure that disability rights are added in social justice movements, especially for those with invisible disabilities. Kolya is interested in current topics such as representation of LGBTQ people, women, and people with disabilities in the media. They work to include disability rights in equality movements, spend a lot of time in the local music scene, and have also been trying to make those spaces more accessible. Also of importance to them are the topics of gender equality, LGBTQ rights, and equal treatment of people of color. Kolya notes, “I was shocked how little these groups knew about rights for people with disabilities.”


Rolling, in my Three Wheel Scooter… Hating the Glaring…Needing Some Caring

not every disabiliy is visible

What’s Endured when using Assistive Devices when you have an Invisible Disease…

I was over the moon when I was finally approved for the use of an electric scooter. My orthopedic doctors signed off, my occupational therapist signed off, and my insurance company covered enough to make it affordable. However, my joyfulness soon turned to angst. The looks, whispers, and glares over powered the joy my scooter brought me. One particular memory was during a recent weekend trip to Washington DC with my family.

not every disabiliy is visible image

Sightseeing in DC…Don’t Forget the Charger

Our first day of touring Washington DC with our exchange daughter from Germany and our son started out full of wonder and ended…well, let’s just say…not as wonderful. That morning I loaded up the backpack with the day’s essentials, grabbed some bottled water, and we headed out to the Metro. But wait… how does one get to or on the metro using a scooter?…we asked ourselves.

Luckily I had downloaded the Metro app on my phone and was easily able to search for the one, yes one, and only elevator that would take us below ground. I soon discovered that you needed to seek out the brown outhouse looking building that would be near the Metro entrance, but not at the actual entrance in order to find the elevator. We were able to spot it and made our way down below. Once underground I was directed to the next one and only elevator to get to the train platform. All I kept thinking was, “What if it breaks down and I get stuck down here?”.

I was getting very anxious as that thought kept running through my mind, so I began to distract myself by looking around and taking pictures of the kids. It was at that moment I took notice of those around me staring, and whispering. Most were looks of compassion, and sympathy, with some inquisitive questions by little ones to their parents.

No I didn’t Borrow it from Grandma…

However, the negative glares and stares came from the older generation. It was as if they were judging me with their eyes and disgruntle facial expressions, as to say, what gives
you the right. I felt like I needed to tape my DMV disability card to my forehead and wear a sign that listed my illnesses. Once the train came, I was just grateful that boarding and exiting
was easier than anticipated. Getting over those two hurdles helped calm my nerves as we ascended into the light of day through the “outhouse” Metro elevator.

Read the Map Upside RIGHT…

I typically have very good navigation skills, but the brain fog had set in from the anxiousness and trauma of the Metro causing me to look at the map wrong. I had north and south upside down. You wouldn’t think it would be a big deal since we were sightseeing anyway; a few extra blocks wouldn’t hurt. However, a few uphill blocks in the wrong direction would soon play their ugly hand in the game of sightseeing with a scooter.

using assistive devices with an invisible disease
I scooted up and down, block after block, in and out of museums, navigating at butt level the whole time, which is not the best point of view unless you are walking in a herd of animals. I had people step over my scooter, walk in front of me, bump me or even try to push me out of the way, and most hurtful of all were the disapproving looks I received. It was as if I was a nuisance and inconveniencing them instead of them being an inconvenience to me.

And Then it Happened…

It was time to make our way to dinner. I was scooting along, when this repetitive beep began and then the scooter came to a full stop. You got it; the battery was on its last leg. Remember the earlier subtitle…”Don’t Forget the Charger”…well we forgot the charger. I still had to make it several blocks to the restaurant, then to the Metro station and back to our hotel before the day was done.dead battery on scooter

My Husband is Truly a Gift from God…

So, my dear husband began pushing the scooter, as I drove in slow turtle speed.*
I did say DC has a lot of hills… well his calf muscles can surely attest to that fact. We arrived at Hard Rock Café, ate dinner, recharged ourselves, and hoped the battery possibly rested some too. Over dinner my husband and I had decided to put our twelve year old son in as the scooter driver. He weighs less than I and it would be a lot easier to push him up and down hills.


Something Strange Happened…

Soon it became apparent that the looks, whispers, and glares were different. My son was getting loving, compassionate, warm and fuzzy responses to his “needs” of riding a scooter. He even got to ride the Metro for free. But, what was the difference, I wondered. It was the same scooter, we were all the same people. Then it hit me; its because he is a child.

At my age, early forties, I am seen as lazy or a faker, but at his age of twelve, he is seen as a poor dear child with needs. It must be something terrible if a child has to use a scooter. There is just no other explanation. Now keep in mind, no one was asking him questions, or inquiring why, they just accepted it and knew he needed compassion.

Maybe if I let my hair grow out grey, and I quit dressing “young” and wear certain types of shoes, I would be considered “of age” for scooter riding. I mean where are the scooter guidelines?
Where is it stated that I have to look a certain age or be physically handicapped? What happened to honest compassion and caring for all people? Instead of judging or worst yet assuming you understand me, just be real and ask me how I am doing. Not all disabilities can be seen and not all people abuse the system. The majority of us with invisible, chronic illnesses no more want to have to use assistive devices, than people think we ought to have the right to use them.

Lessons Learned…

As our day came to a close I learned to make sure that I always have the scooter charger and that don't forget you scooter chargerI have to be the better person. I can not let the glares, and whispers affect my peace of mind or steal my joy. I can educate others and I can be a better advocate for all my sisters and brothers who live with this dilemma each and every day. I will continue to roll through life on my scooter. On the bad days I will have to charge a little longer, but on the good days I will be in full rabbit mode!*
*Turtle and Rabbit mode refer to the speed setting on my scooter, so my kids and I coined the phrase full rabbit and slow turtle.


Written By:  Tracie Denison-Felgentreu

Top 5 songs for bad days

music for bad days

As a spoonie each of us has our own way we handle the bad days. You know the ones. The ones where the pain seems never ending, where everyone around you only make things worse. The ones that make us feel like never getting out of bed because if we do it’ll only make things worse. Those are the days that make us feel like we can’t fix one illness before another gets worse or shows up.

For many of us spoonies we turn to music. Music has been my go to coping technique since I was first diagnosed with Epilepsy as a child. Since then I’ve learned to relate music with my feelings good, bad and everything in between. This is my list of my top 5 songs I listen to on those bad days. These are songs that keep me pushing forward and the lyrics that help me get through those bad days when I can’t seem to keep going.

War At Home by Josh Groban

This song was written by Josh Groban himself after he spent time in the hospital with injured vets when they returned home. I think it speaks to spoonies as well and the war we battle everyday with our illnesses.
“A fallen brother,
He’s a
A fallen husband,
He’s about to be woken in his hospital bed
Doesn’t want to rest
Just wants to run
And he’s tired of being told that he’s the lucky one
A caped crusader,
She’s a
Newborn leader, but
You should see her when her daughter’s on the phone
And she wipes the tears away
And she laces up because there’s still hell to pay
And it sure feels like hell today”


There, There Katie by Jack’s Mannequin

Andrew McMahon the lead singer, who is a spoonie himself, wrote this for his sister Katie while he was under going treatment for his Cancer. He has since gone into remission but I feel no matter the name being sung all spoonies can relate to the lyrics being sung.
“And Katie
Katie, I’m sorry
That in your condition
The sunshine’s been missing
But Katie
Don’t believe that it isn’t there
Oh and Katie
Katie, be happy
This world can be ugly
But isn’t it beautiful”

Superman (it’s not easy) by Five For Fighting

Five For Fighting is one of my favorite singers ever. This song reminds me that it’s okay to not be okay and that I don’t always have to be so strong. That sometimes even the strongest spoonie needs to break down.
“It may sound absurd but don’t be naïve
Even heroes have the right to bleed
I may be disturbed but won’t you concede
Even heroes have the right to dream
And it’s not easy to be me”

Swim by Jack’s Mannequin

This one to me is the spoonie version of Dory’s from Finding Nemo “Just keep swimming, just keep swimming.”
“You’ve gotta swim
Swim for your life
Swim for the music
That saves you
When you’re not so sure you’ll survive
You gotta swim
And swim when it hurts
The whole world is watching
You haven’t come this far
To fall off the earth”

My Reply by The Ataris

This is a song that was written by the lead singer in response after a young girl with Cancer sent the band a letter saying she may not have much longer but wanted to thank them for their music helping her through the tough times. It’s one of my favorites and helped me a lot while being a spoonie in high school.
“I wish there was something I could say
To erase each and every page that you’ve been through
Even though its not my place to save you”

From one spoonie to many others, no matter what helps you get through the bad day I hope you find some strength in the songs listed above. Remember when you feel like you can’t go on there’s always another spoonie cheering you on from a far and always a song to say the words you can’t.

“After silence, that which comes nearest to expressing the inexpressible is music.”

Keti blogs on Indie Nerd Girl