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KAM REDLAWSK

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My story: Watch 44 years in 3.5 minutes

This is 44

April 15, 2023

Time is the best teacher; unfortunately it kills all of its students. - Robin Williams 

This is 44. Last week I made another trip around the sun. I shared a video compiling 44 yrs (watch  here: https://youtu.be/ehQjezw97Jw) so I felt like sharing some near mid 40s thoughts.

It’s funny. Since I turned 40, I forget how old I’m turning every year. Convenient forgetfulness.

I like the visions that come with time and experience: You care less about what others think and observe yourself behind less obstructed eyes. Though, let’s not fool ourselves, we still feel the ebb and flow of insecurity and even find new ones as we age. But there’s a stronger sense of self, a confidence that lives beyond boastfulness. You also give yourself the time, patience and experience to see yourself for the first time. And that is beautiful.

I met my mortality when my rare progressive disease began and I’m meeting it again as I age. When I was younger, I didn’t think aging would bother me, but somehow it does a little as these two worlds collide.

When you turn 40, you begin to assess or view it as a halfway point. At least I did. Except, I’m not even sure if it’s a halfway for me because, it turns out, dying from this muscle wasting condition is not impossible. At one point, it was once thought my condition was excluded from fatality (my condition is still pretty new in the medical books) until I learned of (asian) patients my age passing the last few years from the residual effects that can occur when your house, your body, begins to crumble.

I know I shouldn’t, but I view everything in ‘how much time do I have left?’ I’ve been conditioned to view time this way when the bang of my prognosis hit me like a rushing waterfall—saturating me from head to spirit.

Having this muscle-wasting condition has pushed so much of the flow of my life, but I’ve also pushed back and influenced a path. I’m not a believer in “things happen for a reason”. Personally, I find this to be a dangerous statement. It promotes complacency and weakness, as if we have no agency or control. Think of how an abuse victim believes through that lens. Just accept whatever bad or abuse happens to you because it happened for a reason or we “were chosen”. Too many horrors or lack of self reflection get swept under the rug because of this blank statement, “Well, it happened for a reason.”

But I do believe in giving reason to the things that happen to us.

The thing I’ve realized most, as someone getting older, is how little control we have and that we don’t actually matter. Not that we don’t matter. But it’s a common thing for me to say: We are everything (to someone) and nothing at all (to the grand scene)—all in the same orbit. So relax, and don’t think too highly of yourself, rather focus on what good you’re contributing to this human experiment.

While I have difficulties and constant health issues, I’ve never felt more confident as a woman, as a human, than I do now. Oddly, I think my disability has helped unearth so much of this confident and innate exploratory heart and grab ‘em by the balls kind of attitude.

Now confidence doesn’t mean a lack of insecurity. Like everyone, I have my list of insecurities on recycle and some of them have been with me since birth, taking years to shed (still shedding). And then at 20, the time when you get to put your middle finger up at highschool and proceed to live life for real, I discovered I had a body that would become disabled as the years passed. This was another unexpected curve and I’d have to learn to love my body just as it is.

It wasn’t until my 30s I began liking my body and how I looked. We assume a specific kind of person or look is insecure, but insecurities have less to do with how we look and more with our origins and environment. I was abandoned at birth, and a difficult time being accepted in a homogeneous upbringing, and while this wasn't a screeching thought throughout my childhood, abandonment has been a part of my subconscious, leading to uncertainty and insecurity.

“I get tired of "under 40" lists. Show me someone who got their PhD at 60 after losing everything. Give me the 70-year-old debut novelist who writes from a lifetime of love and grief. Give me calloused hands and tender hearts.” - Doug Murano

With age and wisdom you begin to unlearn all those narratives, and in essence, I like who I am and where I'm going. While I was ambitious at 30 (and 20), it's true that time can really elevate you.

To achieve something young is wonderful, but I want to hear the stories long after-for only then we'll see how much we've changed. A life well-lived, worth reflecting, takes time. To give ourselves this time and grace is to free ourselves from a clock so loud it subdues us into fear. 

I’ve learned worrying is futile. Don’t worry, you still worry as an older person (all the time), but maybe just a bit more informed worrying. I’ve learned to work through fear to live the life you want. People think I’m fearless, when no such thing actually exists for anyone. I’m afraid all the time, but when a clock is screaming at you, you learn that if you never challenge yourself, you’ll never know what you’re capable of.

Aging is happening…including the fatigue, the sagging of favorite body parts (thank goodness for push-up bras) or the forgetting of very simple words like “table” and “door”. All this in parallel with a disease that’s visually changing my body. The thing is, you can’t have one without the other. You can’t have the vantage of experience without the passage of time, including passage of body, and so it’s something one needs to work through as they age—which hopefully resolves on: it’s completely worth it to have this view. 

As my body progresses, it often feels like a 100 year old sack of russets, but I love what has happened to my mind in this aging and disabled journey. My mind feels more vibrant and capable than ever before, and I’m thankful I’m still able to be me in some ways. This has been possible through creative adaptation; finding ways to fill losses and staying curious as I replace lost loves with new ones. Life didn’t play out quite like I thought, but it’s not supposed to. It’s up to us to adapt and build something.

Sometimes, we’re focused on a rigid path we envisioned which can become a battle with oneself because it omits openness to the unexpected and possibilities. This is futile because plans never happen the way we want. I’m controlling enough—and at times too much when it comes to achieving quality in whatever I do—but free enough to know every path can be built upon, revealing things one couldn’t imagine.

The opportunities I’ve been given, and where I feel I’m going, were completely unplanned, but there have been delightful surprises. This can come from committing to opening the doors to the unknown and having faith in oneself (and the moment), fully knowing you can transform paths the winds shift you to and still make it beautiful.

Forty four and I like the vista of my life; all I’ve been through, seen and done, and all I’ve yet to see. I love what getting older and living life has done for my mind and vision. I’m at a place where I like who I’ve become and know where I’m going, more or less. 

As we see the sun setting on our lives, there is a clearer scope. One of the great things about getting older is you sorta get to shed the old skin and see things from a new view. I’ve learned, years spent is where true beauty lives, and I think, however difficult it is, the fact there is an entrance and exit into this world is beautiful. 

For all the struggles and loss, I’ve been able to do and see some amazing and off the main line things. I’ve lived and don’t regret much. I’m grateful for 44 years. I hope to have a few more. #kamswheelstravel

For ♿️ travels, disability & accessibility musings, mini-memoirs and art, visit: Instagram.com/kamredlawsk. I post more frequently there.

← My First Children’s Book WeekJudy Heumann - The Mother of the Disability Rights Movement / Dec 18, 1947 - March 4, 2023 →
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“Not an Ostrich “ photography exhibit at Annenberg Space for Photography with selections from Library of Congress. / “New Designs:Ingo Maurer Bulb” 1970
@librarycongress
@annenbergspace
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#libraryofcongress #photooftheday
“Not an Ostrich“ photography exhibit at Annenberg Space for Photography with selections from Library of Congress. @librarycongress @annenbergspace
“Not an Ostrich“ photography exhibit at Annenberg Space for Photography with selections from Library of Congress. @librarycongress @annenbergspace .
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#libraryofcongress #photooftheday #annenbergspace #NotanOstrich #wheelchairtravel
Silo sunset post rain. #flashbackfriday #wheelchairtravel #sunset
I’ve been laying here dealing with aftermath of an overly busy & labor intensive trip to my home state. When I get like this my whole body feels like a mass of bruises. I barely slept on the trip due to working on projects for family, visit
I’ve been laying here dealing with aftermath of an overly busy & labor intensive trip to my home state. When I get like this my whole body feels like a mass of bruises. I barely slept on the trip due to working on projects for family, visit
Lake Huron sun rising. “The darkness is at its deepest. 
Just before sunrise.” -Voltaire
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#wheelchairlife #wheelchairgirl #wheelchairtravel #accessibletravel #travelblogger #michigan #puremichigan #lakehuron #bebound
Saw 7 freighters in one sitting. .
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#wheelchairlife #wheelchairgirl #wheelchairtravel #accessibletravel #travelblogger #puremichigan #lakehuron  #travellikeagirl #girlswhowander #femaletravelbloggers #instagood #wheeliesaroundtheworld
Sitting on the dock of the lake.
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“When the mind is silent like a lake the lotus blossoms.” -Amit Ray #latergram #wheelchairtravel .
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#wheelchairlife #wheelchairgirl #accessibletravel #travelblogger #michigan #puremichigan #lakehuro
Another new one I did for my art show. This one was sold, no prints available. I imagine doing a series of this one as self-doubt is feeling we all journey through. This image comes very clearly to me when I’m dealing with my own self-doubt. .
Another new one I did for my art show. I like trying new styles.
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“Bottled Up” / “This one is about my muscle wasting disorder and the list of ambiguous chronic symptoms of pain, nerve pain and relentless itching. It’s the ph
It’s #VisibleWomen Day. I’m an LA based artist who documents her rare, debilitating  and degenerative muscle wasting disorder and its emotions through illustrations. This muscle disorder will eventually take my hands like it has my legs.

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