Bored Panda works better on our iPhone app
Continue in app Continue in browser

BoredPanda Add post form topAdd Post Search
Tooltip close

The Bored Panda iOS app is live! Fight boredom with iPhones and iPads here.

I Document The Progression Of My Rare Disease In Heartbreaking Illustrations
User submission
15K
274.7K

I Document The Progression Of My Rare Disease In Heartbreaking Illustrations

ADVERTISEMENT

At age 20 I set out to complete an Industrial Design Bachelors degree. At the same time I began experiencing mysterious physical symptoms, symptoms that would lead me to an unimaginable future.

I went from kicking soccer balls, running and leading an active life to making use of leg braces, canes and today a full-time wheelchair. After 5 years of searching for a name for this uninvited stumbling block, I would learn I had an extremely rare muscle deterioration genetic condition called HIBM (today it’s called GNEM) which could take my once active body to quadriplegic state. This rare condition affects one to three thousand people worldwide. My condition is known to the medical world as an “orphan disease” which is ironic since I was born an orphan in South Korea.

All the doctors told me there was no hope, I was too rare to ever meet another patient like myself and I should quit college and lead a less ambitious life. According to their medical textbooks my future looked bleak.

After completing my Bachelors I flew to California and found a design job as a toy designer. I also found brothers who had my condition. One is a doctor, the other a research scientist. Together they set out to help propel advocacy and research science for HIBM. I was no longer alone and the medical world was wrong.

My world had opened and I began advocacy to help spread awareness about my condition. I offered my design services and fundraised but it’s hard for people to empathize with medical textbook definitions so I began blogging about my personal experiences with HIBM. Then I realized some respond to stories visually. So I taught myself illustration and began drawing out my experiences to raise awareness. I hoped my simple drawings would not only educate the viewer about HIBM but also the viewer could see themselves in my drawings and relate it to their own struggles.

ADVERTISEMENT

18 years I’m wheelchair bound but live life even larger than when I was able bodied. I’m constantly traveling and participating in daredevil stunts. My upper body has begun weakening and one day could be immobile, unable to draw…So, what do you do when you find out your future will be different than you thought? You draw, you live.

More info: kamredlawsk.com | Facebook

It’ll Be Alright

At the time of this drawing I was still walking but I could literally feel my steps slipping away from me, as I was fitted for my first wheelchair. I was saddened. This was a significant milestone—one that I had done my best to avoid, hoping I would make it to clinical trials and bypass the chair completely. If HIBM (aka GNEM) was like a tree, this is how it spreads, with a ball of yarn clinging to me, drawing me in closer and closer. I titled the illustration, “It’ll Be Alright,” because this is what I tell myself as I push through the increasingly difficult stages of this condition.

I Don’t Want To Be An Inspiration Today

Being an advocate and public about my condition makes me feel like this most of the time.

ADVERTISEMENT

I often hear “You’re an inspiration”. I get it. I say this to others too. But the truth is I don’t want to be an inspiration. Sometimes this comment makes me feel like a fraud. Like I’m on a pedestal under false pretenses because I don’t want to be an inspiration. The “inspiration” just wants to be normal, preferably unknown.

Daydreaming

Much of my work involves female figures – adult and/or childlike. They are me and come in many forms. Sometimes it’s a juxtaposition of me being able to run as a child versus being wheelchair bound today. Sometimes it’s a commentary on the relationships between our childlike versions versus our more stoic adult versions. Our freer self versus our fearful self. Beauty and pain. Humility and perspective. Stillness and turbulence – it’s our struggles personified in some distant dream-like land. The past, present and future lies within each of us and they battle for dominance and recognition.

Many of my environments are inspired by recurring childhood dreams.

Please Don’t Leave Me

ADVERTISEMENT

This represents the degradation of my upper extremities. One day I looked down at my hands and realized they began mirroring other HIBM patients whose hands and fingers have progressed into languid fixtures. What has happened to my legs is now happening to my arms, fingers, hands, shoulders and neck. It’s a hard experience. An unexpected and unwelcomed life lesson.

ADVERTISEMENT

Losing your legs is one thing but losing your arms, hands and fingers is an entirely different experience. With each level of progression I’m reminded of the depth and severity of this condition. Pieces of me are disappearing like sand in the wind and time continues to haunt me.

Waves

Waves of life inevitably grab us, its how we sail through the turbulence that matters.

Better Days Ahead

I love window light and its endless patterns. They are so simple, yet so graphic and descriptive. They tell a story of their travels; where they have been, where they are going.

Window light seeping in between blinds always makes me think of solitude, loneliness and contemplation. It makes me think of the days you don’t want to get out of bed, when you would rather let the strips of light lay on your body and make it bend to you rather than bending to life. Enough warm light to caress your face, as if those strips bring you some connection to the outside world, but hidden enough to stay disconnected so no one can see you. We all have bad days. Today, tomorrow or the future sometimes taunts us. The things we are struggling with, whether it be a disease, disability, depression, death, loss, relationships or life’s obstacles that seem to hold us down with little hope. In those moments I turn my head towards the warm ray bans and murmur to myself, “Better days are ahead”.

ADVERTISEMENT

Baby Mine

As an adoptee it was a dream to have children, particularly a daughter. But some dreams never come true. In order to keep moving, you have to gently send them off into space and move onto new dreams.

Oneiros and I

ADVERTISEMENT

Oneiros (the monster lurking in the trees) is the HIBM monster that follows me. It’s a part of me. A part I don’t want, nor invited, nor created but a part of me, nonetheless.

He knows not what he does, only that he has to be with me. He grieves and ponders over my constant desire to escape him. My apathy for him saddens him. This is what he was designed for.

HIBM is Oneiros. Like an innocent child, he has real feelings, real purpose and a real attachment to me. Sometimes he does wonderful things for me and other times I want to be left alone. I’m waiting for him to leave. He is a constant reminder of my past, present and future.

It’s a part I have no control over. A part that is both good and bad, creating shaded grey areas of emotions. I can’t be completely angry over something that has brought about such perspective but perspective is sometimes painful but there is no way around it. It’s a process of working with our little monster. And so in my head I’ve personified him, an entity that also has real emotions, hurt and pain.

ADVERTISEMENT

So here we are. We have a relationship. There is an Oneiros in all of us.

Raven Girl

Cycle of life. From pain there is beauty, from beauty there is pain.

What’s Everyone Staring At?

“What’s wrong with you?” is a common question I get from immediate strangers. Society tends to like what is the same and easily defined so when something different “rolls” in it can sometimes feel like this.
However difficult this condition is, stripping me of choices and the life I wanted for myself, I can still say that I love that I am unique. It has taught me so much, and I have never been as confident as I am today. Uncomfortable can be a good thing. In fact, I say, the more you can put yourself into uncomfortable situations, the better.

To those who ask, “What’s wrong with you?” I answer, “There is nothing wrong with me. I’m just fine.”

Ponytale

In 2013 I wrote: “My hair has been short for the last few years but recently I have been growing it out. My shoulders, arms, hands and fingers are significantly weaker than they were a year ago. This makes tasks like washing my hair, blow drying and doing something as simple as tying a ponytail much more difficult and glaringly obvious of what has left and what is leaving.

I remember grabbing my hair and tying it up with a rubber band as a child, teenager and young adult. Never did I give this act a second thought. It was effortless. It took a second to accomplish. I took it for granted.

Last month I tied my hair for the first time in years and frustratingly took five minutes to achieve. My weakened shoulders make it difficult to raise my arms. Holding a bundle of hair now gives my diluted fingers a challenge.

“This has never been hard in the past,” I thought. “NOT this, too…”

With a progressive condition there is no end, no finale, no rest. This trivial task serves as a reminder of things to come. It is the moments that make up a story.

In Pieces

Signs

ADVERTISEMENT

One weekend I was exploring and paid particular attention to a row of street signs. “Are they talking to me?” I wondered.

Like Them

One afternoon at a traffic light I looked up and saw a flock of birds sitting on a telephone line. The day was overcast and those birds felt ominous. I felt like they peered down at us, watching us before they in unison flew into the sky and disappeared. I thought “freedom”. And I wanted to be like them.

Essence Remains

What Is Sexy?

Growing up, I never saw “sexy” and “beautiful” figures offered to me in the form of a “disabled” person. This inevitably fed an initial perception of disabled persons being essentially “asexual.” Obviously, now that I am an adult with the intimate experience of being “disabled,” I know that such an idea is completely wrong.

And, yet, I have to say that, while perspectives are slowly changing, society still largely looks at disabled individuals as objects of care or somebody one is obligated to be nice to.

The disabled are often desexualized, ignored and babied, and if one happens to have a partner, then that person is deemed some kind of saint for even considering taking on the wounded—as if disabled individuals are incapable of inspiring romantic love or eroticism. A person’s physical dependence on others is automatically equated with emotional and intellectual dependence, and many can’t seem to fathom how one could even have the brain space to think about sex.

275Kviews

Share on Facebook
You May Like
Popular on Bored Panda
Join the conversation
Add photo comments
POST
creativewritingdias avatar
Amy Dias
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These are so powerful not just through the extraordinary imagery but through the messages they convey. These will inspire so many.

davidobrzut avatar
David Obrzut
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

First of all she doesn't want to be an inspiration so you should respect that, second of all do not over interpret, they are quite simplistic images, beatiful but at the same time showing despair by every day life even though she seems to keep going through it

Load More Replies...
sunnyrei82 avatar
sunnyrei82
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Beautiful style, color palette and powerful message. The subtle and light elements work together so well! You don't feel the images saturated or heavy. It is so smooth. Great job. Keep illustrating, it simply beautiful. I really really liked your work.

15lpilkington avatar
ChubbySquid
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I'm so impressed with how you cope with this- keep it up! I also have an orphan condition (Narcolepsy) and there is a community of people with the same condition I'm in that meet up once a year to discuss how everything is. Maybe it would be a good idea to look for a community of people with HIBM so you don't feel so alone. Just a suggestion- don't take it to heart if you don't want.

kimkam_design avatar
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for your wonderful suggestion. I've actually been in contact with HIBM patients since 2007 and was among the first 3 to be a public advocate for more awareness for our rare condition. I started the development of more patients coming out and sharing their stories and even flew to other countries to help other patients start their own patient advocate groups for our condition. All my doctors told me I would never meet one and I've met over 100 and active role in growing patient advocacy. But you're right, community helps :).

Load More Replies...
luyendao avatar
Lu
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Incredibly wise and heart wrenching. An honest reminder of the essential and impermanent nature of life. Thank you for sharing.

junepixeld avatar
June Pixeld
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

It is beautiful work with a powerful message and your work could help find strenght in people with similar condition, but also healthy people who do not appreciate the things they have and leave no mark on the world out of fear to pursue their dreams. Hope you find more support you deserve it!

annathouvenin avatar
Anna Thouvenin
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I feel these drawings so strongly. My ex-bf has an orphan disease as well; that will eventually put him in a wheelchair at some point around his 40th birthday (only if he survives this long). He's been dealing with it a way less quiet path than you. I hope that you will find ways to keep doing your amazing drawings, I particularly liked the Raven girl.

creativewritingdias avatar
Amy Dias
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

You are reaching out to the world through your incredible spirit. I am going to your work in my high school writing class.

gedmaybury23 avatar
Ged Maybury
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I'm grateful for this. Some of the images are very painful, raw and honest - and that is good. I engage with this better than those butterflies-and-fairies New-Age pep-talk pop-psych Let's all-be-positive! things. ::puke!:: I'm moved to empathise (I have ME/CFS). and also be grateful that my condition is less dramatically degenerative. You comment on sexuality is particularly poignant. Thank you for committing so deeply to your extraordinary life.

mary-tonningsen avatar
Mary Tonningsen
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Ged, I have ME/CFS, too, and because it has changed my life so dramatically it does make it easier to empathize with others who are disabled. Empathy is a gift of this disease that we didn't expect.

Load More Replies...
jlmoore80 avatar
Jessica Nussbaumer
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is so heartbreaking - your attitude is admirable, keep being you and life will remain beautiful.

helltams avatar
Hallak65
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

If sb want to read more about this disease: https://en.wikipedia.org/wiki/Hereditary_inclusion_body_myopathy

stellaadebayo35 avatar
Stella Adebayo
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Your illustrations are beautiful and heartbreaking all at once, I'm sorry.

riverplace42 avatar
Linda Tracey
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I searched and found more info about her here: https://globalgenes.org/raredaily/bike-for-kam-paving-the-way-for-treatment-for-hereditary-inclusion-body-myopathy/ There is a video there as well of her. Her drawings speak to my heart. What a beautiful and talented person.

mdulbergsdesigns avatar
Monica Michelle
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you. I have eds and until I couldn't use my hands well went to illustrations.

bkindlefam avatar
Beth Kindle
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

love your illustrations. you inspire with the humility and humanity of not wanting to be an inspiration.

jacqueduffy avatar
Jacque Duffy
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Pam, your images are beautiful and tell your story perfectly, your words too. Congratulations on being able to express yourself. I hope you don't mind but I am sharing a quote of your words as they mirror my own thoughts and actions 'Waves of life inevitably grab us, it is how we sail through the turbulence that matters.'

liane-fleury avatar
Liane Fleury
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Wowww!! Beautiful illustrations and the words that come along with them are powerful. You should turn this into a book. I have RSD/CRPS, which is considered the most painful condition there is. It's a malfunction of the autonomic nervous system. The nerves are constantly misfiring and sending pain signals. It started in my left hand but has since traveled to both of my feet and up my legs. I am now dependent on a scooter to go places. The last part of this story fits me to a tee. I'm 54, divorced and live alone. I haven't dated in 10yrs and although I would love to find a partner I feel as though no one would be interested bc of my disability. That they would just look at me like a broken person. So thank you so much for these wonderful Illustrations. I hope that your disease doesn't progress too quickly and you can keep drawing and writing. You ARE an INSPIRATION to me!!! 💕 Hugs

hidaya_7 avatar
Terri Rowland
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

For as long as your hands and fingers allow it keep drawing. I know that when the time comes you'll find a new and equally beautiful way to bring awareness to the many you already reach. 💕 😊 ❤👼🏽

christinasvarva avatar
Christina.frey
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is so inspiring, amazing, uplifting, beautiful and totally devastating all at once. True art in all it´s dept. I truly wish you the best, and thank you for sharing your soul trough your art!

gabe_lujan avatar
Gabe Lujan
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for sharing your art and message. Wow! This is extremely powerful, and well put together.

rabreid423 avatar
Robert Reid
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

The sign of a great artist, in my opinion, is one that makes the viewer stop and think, and not just as a passing thought but actually 'think'.. Your paintings and the words you place with them are incredible. I simply love the .. humanity, in all its frailty! We take so much for granted and society does so sadly see those that are disabled as non-sexual, non-persons. This is a truly sad indictment on us all and I hope throught the power of social media, your story, your artwork and your words reach as many people as possible. I truly do not know where to begin to express my admiration of your courage and talent .. I wish you all the very best that I can muster. Much love, Robert

nehringclaire avatar
Claire Bear
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These are amazing and beautiful and sad and hopeful. Thank you for sharing.

susanhforbes avatar
Susan Forbes
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

"We all have our own Oneiros" really hit home to me. These are very powerful images.

blackwidowmansion avatar
Alice Lupin
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I know I don't have to tell you this, because you probably tell yourself every day, and that is the reason you are still going strong, but: hang in there. You have a beautiful mind that is capable of overcoming this terrible disease, and I just wanted to tell you that even though there is no escaping this, you are doing a great job at making something of your life. There are plenty of people that are nowhere near where you are in your development of self.

johanna_9 avatar
Johanna Swanson
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This hit me right in the feels. I too have a rare condition, but for me it sent me all the way down to fully paralyzed, and then I climbed my way slowly back up to functional again. I remember the first time someone handed me a brush to brush my hair as I was recovering and I couldn't muster the strength to push it through my long hair.

zori-i-iana avatar
Zori the degu
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is one of the most heart breaking things ever posted on Bored Panda. I do hope more people hear/read about this story. If there's more awareness there would be more scientific research as well and soon the society might be able to find a way to battle this previously-unknown and awful disease. Because no matter how rare one condition is, it shouldn't be ignored because some day it might also affect us, or a friend, a family member or the neighbor next door.

tarahg avatar
Tarah G
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

But some dreams never come true. In order to keep moving, you have to gently send them off into space and move onto new dreams. Your quote is exactly what I needed to read in my life thank you and thank you for sharing your talent .

ksaleib83 avatar
Kerolos Saleib
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This brought so much reality to the fact that we take so much for granted. Thank you for creating such a real heartfelt awareness. I felt what you were going through, even thoigh I will never fully understand it, i can empathize on a certain level. Sending you lots of love and courage

bubs623 avatar
Beth Arriaga
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Damn girl. Every illness, or setback or assault ...on the mind, the body, the soul. We all feel. We all hurt. It makes us human. It bounds

sriganeshninja avatar
SriGanesh.Ninja
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

You are an inspiration and a role model to those who think they can't when there limbs are good like normal ppl. you achieving when the docs said your life is bleak after you sit in your wheel chair. from soccer to wheel chair and making other ppls life a good inspiration - you can do more. A hard slap to those(me too) we procrastinate and think anxiety or negativity thinking we cannot get great life with what we can do with the resource we can get, not like others who disabled by medical conditions. You are great sir/madam.

mattnmandeemckeown avatar
Amanda McKeown
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This art is moving and beautiful. I love the story and the art. Thank you for sharing.

missfairyfay avatar
Fay
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I relate to this so much. I have CIDP. It's only a matter of time before I'm wheelchair bound too. Thank you for these drawings *huggles*

freytag-frances avatar
Kirby
Community Member
5 months ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

You... this... I just am having trouble putting it into words but it's amazing! It's sad how your dreams of becoming a mother and it's horrible that people see you as a monster if you date someone with a disability. It's even sadder because they don't call people with invisible needs like ADHD, Anxiety, etc. Monsters... YOU ARE CHANGING THE WORLD THROUGH YOU LIFE AND MORE SO KEEP IT UP AND NEVER GIVE UP DREAMING!!!

christovovap avatar
Petra Christovová
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I must say that I was really moved by this. The paintings are so strong and personal .. hard to find words for this. Thank you for sharing your world with the others through your amazing art.

mary-tonningsen avatar
Mary Tonningsen
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Kam, thank you for sharing your art, story, and thoughts with us. It's very eye-opening and touching. You are one tough cookie and I wish you all the very best on your journey!

leannemariedantoni avatar
Agnes Jekyll
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These are so beautiful. You are very talented. Thank you for creating these.

alusairalustriel avatar
Alusair Alustriel
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Feeling of helplessness that washed over me is awful. I so much wish there was something we could do for her and other people with this rare condition. I'm not pitying them, as I know they wouldn't want it. I just feel sorry and sad that even though we are so far in technology and medicine, there are still some cases that we can just stand aside and watch and we can't do anything ;(

veronique_lejuez avatar
Veronica Kouwenhoven
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

"This lazy Panda forgot to write something about itself" No, she drew and wrote and bared her soul instead. Maybe Bored Panda should be less rigid in its ways and words?

creativewritingdias avatar
Amy Dias
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These are so powerful not just through the extraordinary imagery but through the messages they convey. These will inspire so many.

davidobrzut avatar
David Obrzut
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

First of all she doesn't want to be an inspiration so you should respect that, second of all do not over interpret, they are quite simplistic images, beatiful but at the same time showing despair by every day life even though she seems to keep going through it

Load More Replies...
sunnyrei82 avatar
sunnyrei82
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Beautiful style, color palette and powerful message. The subtle and light elements work together so well! You don't feel the images saturated or heavy. It is so smooth. Great job. Keep illustrating, it simply beautiful. I really really liked your work.

15lpilkington avatar
ChubbySquid
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I'm so impressed with how you cope with this- keep it up! I also have an orphan condition (Narcolepsy) and there is a community of people with the same condition I'm in that meet up once a year to discuss how everything is. Maybe it would be a good idea to look for a community of people with HIBM so you don't feel so alone. Just a suggestion- don't take it to heart if you don't want.

kimkam_design avatar
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for your wonderful suggestion. I've actually been in contact with HIBM patients since 2007 and was among the first 3 to be a public advocate for more awareness for our rare condition. I started the development of more patients coming out and sharing their stories and even flew to other countries to help other patients start their own patient advocate groups for our condition. All my doctors told me I would never meet one and I've met over 100 and active role in growing patient advocacy. But you're right, community helps :).

Load More Replies...
luyendao avatar
Lu
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Incredibly wise and heart wrenching. An honest reminder of the essential and impermanent nature of life. Thank you for sharing.

junepixeld avatar
June Pixeld
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

It is beautiful work with a powerful message and your work could help find strenght in people with similar condition, but also healthy people who do not appreciate the things they have and leave no mark on the world out of fear to pursue their dreams. Hope you find more support you deserve it!

annathouvenin avatar
Anna Thouvenin
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I feel these drawings so strongly. My ex-bf has an orphan disease as well; that will eventually put him in a wheelchair at some point around his 40th birthday (only if he survives this long). He's been dealing with it a way less quiet path than you. I hope that you will find ways to keep doing your amazing drawings, I particularly liked the Raven girl.

creativewritingdias avatar
Amy Dias
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

You are reaching out to the world through your incredible spirit. I am going to your work in my high school writing class.

gedmaybury23 avatar
Ged Maybury
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I'm grateful for this. Some of the images are very painful, raw and honest - and that is good. I engage with this better than those butterflies-and-fairies New-Age pep-talk pop-psych Let's all-be-positive! things. ::puke!:: I'm moved to empathise (I have ME/CFS). and also be grateful that my condition is less dramatically degenerative. You comment on sexuality is particularly poignant. Thank you for committing so deeply to your extraordinary life.

mary-tonningsen avatar
Mary Tonningsen
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Ged, I have ME/CFS, too, and because it has changed my life so dramatically it does make it easier to empathize with others who are disabled. Empathy is a gift of this disease that we didn't expect.

Load More Replies...
jlmoore80 avatar
Jessica Nussbaumer
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is so heartbreaking - your attitude is admirable, keep being you and life will remain beautiful.

helltams avatar
Hallak65
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

If sb want to read more about this disease: https://en.wikipedia.org/wiki/Hereditary_inclusion_body_myopathy

stellaadebayo35 avatar
Stella Adebayo
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Your illustrations are beautiful and heartbreaking all at once, I'm sorry.

riverplace42 avatar
Linda Tracey
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I searched and found more info about her here: https://globalgenes.org/raredaily/bike-for-kam-paving-the-way-for-treatment-for-hereditary-inclusion-body-myopathy/ There is a video there as well of her. Her drawings speak to my heart. What a beautiful and talented person.

mdulbergsdesigns avatar
Monica Michelle
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you. I have eds and until I couldn't use my hands well went to illustrations.

bkindlefam avatar
Beth Kindle
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

love your illustrations. you inspire with the humility and humanity of not wanting to be an inspiration.

jacqueduffy avatar
Jacque Duffy
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Pam, your images are beautiful and tell your story perfectly, your words too. Congratulations on being able to express yourself. I hope you don't mind but I am sharing a quote of your words as they mirror my own thoughts and actions 'Waves of life inevitably grab us, it is how we sail through the turbulence that matters.'

liane-fleury avatar
Liane Fleury
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Wowww!! Beautiful illustrations and the words that come along with them are powerful. You should turn this into a book. I have RSD/CRPS, which is considered the most painful condition there is. It's a malfunction of the autonomic nervous system. The nerves are constantly misfiring and sending pain signals. It started in my left hand but has since traveled to both of my feet and up my legs. I am now dependent on a scooter to go places. The last part of this story fits me to a tee. I'm 54, divorced and live alone. I haven't dated in 10yrs and although I would love to find a partner I feel as though no one would be interested bc of my disability. That they would just look at me like a broken person. So thank you so much for these wonderful Illustrations. I hope that your disease doesn't progress too quickly and you can keep drawing and writing. You ARE an INSPIRATION to me!!! 💕 Hugs

hidaya_7 avatar
Terri Rowland
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

For as long as your hands and fingers allow it keep drawing. I know that when the time comes you'll find a new and equally beautiful way to bring awareness to the many you already reach. 💕 😊 ❤👼🏽

christinasvarva avatar
Christina.frey
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is so inspiring, amazing, uplifting, beautiful and totally devastating all at once. True art in all it´s dept. I truly wish you the best, and thank you for sharing your soul trough your art!

gabe_lujan avatar
Gabe Lujan
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for sharing your art and message. Wow! This is extremely powerful, and well put together.

rabreid423 avatar
Robert Reid
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

The sign of a great artist, in my opinion, is one that makes the viewer stop and think, and not just as a passing thought but actually 'think'.. Your paintings and the words you place with them are incredible. I simply love the .. humanity, in all its frailty! We take so much for granted and society does so sadly see those that are disabled as non-sexual, non-persons. This is a truly sad indictment on us all and I hope throught the power of social media, your story, your artwork and your words reach as many people as possible. I truly do not know where to begin to express my admiration of your courage and talent .. I wish you all the very best that I can muster. Much love, Robert

nehringclaire avatar
Claire Bear
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These are amazing and beautiful and sad and hopeful. Thank you for sharing.

susanhforbes avatar
Susan Forbes
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

"We all have our own Oneiros" really hit home to me. These are very powerful images.

blackwidowmansion avatar
Alice Lupin
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I know I don't have to tell you this, because you probably tell yourself every day, and that is the reason you are still going strong, but: hang in there. You have a beautiful mind that is capable of overcoming this terrible disease, and I just wanted to tell you that even though there is no escaping this, you are doing a great job at making something of your life. There are plenty of people that are nowhere near where you are in your development of self.

johanna_9 avatar
Johanna Swanson
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This hit me right in the feels. I too have a rare condition, but for me it sent me all the way down to fully paralyzed, and then I climbed my way slowly back up to functional again. I remember the first time someone handed me a brush to brush my hair as I was recovering and I couldn't muster the strength to push it through my long hair.

zori-i-iana avatar
Zori the degu
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This is one of the most heart breaking things ever posted on Bored Panda. I do hope more people hear/read about this story. If there's more awareness there would be more scientific research as well and soon the society might be able to find a way to battle this previously-unknown and awful disease. Because no matter how rare one condition is, it shouldn't be ignored because some day it might also affect us, or a friend, a family member or the neighbor next door.

tarahg avatar
Tarah G
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

But some dreams never come true. In order to keep moving, you have to gently send them off into space and move onto new dreams. Your quote is exactly what I needed to read in my life thank you and thank you for sharing your talent .

ksaleib83 avatar
Kerolos Saleib
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This brought so much reality to the fact that we take so much for granted. Thank you for creating such a real heartfelt awareness. I felt what you were going through, even thoigh I will never fully understand it, i can empathize on a certain level. Sending you lots of love and courage

bubs623 avatar
Beth Arriaga
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Damn girl. Every illness, or setback or assault ...on the mind, the body, the soul. We all feel. We all hurt. It makes us human. It bounds

sriganeshninja avatar
SriGanesh.Ninja
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

You are an inspiration and a role model to those who think they can't when there limbs are good like normal ppl. you achieving when the docs said your life is bleak after you sit in your wheel chair. from soccer to wheel chair and making other ppls life a good inspiration - you can do more. A hard slap to those(me too) we procrastinate and think anxiety or negativity thinking we cannot get great life with what we can do with the resource we can get, not like others who disabled by medical conditions. You are great sir/madam.

mattnmandeemckeown avatar
Amanda McKeown
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

This art is moving and beautiful. I love the story and the art. Thank you for sharing.

missfairyfay avatar
Fay
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I relate to this so much. I have CIDP. It's only a matter of time before I'm wheelchair bound too. Thank you for these drawings *huggles*

freytag-frances avatar
Kirby
Community Member
5 months ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

You... this... I just am having trouble putting it into words but it's amazing! It's sad how your dreams of becoming a mother and it's horrible that people see you as a monster if you date someone with a disability. It's even sadder because they don't call people with invisible needs like ADHD, Anxiety, etc. Monsters... YOU ARE CHANGING THE WORLD THROUGH YOU LIFE AND MORE SO KEEP IT UP AND NEVER GIVE UP DREAMING!!!

christovovap avatar
Petra Christovová
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I must say that I was really moved by this. The paintings are so strong and personal .. hard to find words for this. Thank you for sharing your world with the others through your amazing art.

mary-tonningsen avatar
Mary Tonningsen
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Kam, thank you for sharing your art, story, and thoughts with us. It's very eye-opening and touching. You are one tough cookie and I wish you all the very best on your journey!

leannemariedantoni avatar
Agnes Jekyll
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These are so beautiful. You are very talented. Thank you for creating these.

alusairalustriel avatar
Alusair Alustriel
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Feeling of helplessness that washed over me is awful. I so much wish there was something we could do for her and other people with this rare condition. I'm not pitying them, as I know they wouldn't want it. I just feel sorry and sad that even though we are so far in technology and medicine, there are still some cases that we can just stand aside and watch and we can't do anything ;(

veronique_lejuez avatar
Veronica Kouwenhoven
Community Member
6 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

"This lazy Panda forgot to write something about itself" No, she drew and wrote and bared her soul instead. Maybe Bored Panda should be less rigid in its ways and words?

Popular on Bored Panda
Trending on Bored Panda
Also on Bored Panda