It's been awhile since I have done an art show. Five years to be exact. I haven't been very active with art for the past couple years. Part of it is because I have been dealing with my health thus the lack of motivation as I've been struggling with these new chronic symptoms unrelated to my muscle wasting disorder that have, at times, genuinely crippled me. It's been difficult. It's been lonely. I have spent many many days and nights the past two years crying. Probably more than I have cried at any other stage of this journey. Those days in my darkened room without the eyes of others felt hopeless. So many times I was ready to give up. I’ve been struggling. I’ve been struggling a lot. Much has changed in two years.
I briefly described some of what I've been going through this year in a previous post “What Is in a Year: What Is Chronic”. I began this year feeling alone and reeling from side effects and withdrawal symptoms from drugs and anti-depressants prescribed to try and curb my undiagnosed chronic itching, chronic pain and nerve pain. I’ve never taken antidepressants for emotional use but today they are often prescribed for a list of other health issues.
These drugs were ineffectual and once again I was faced with medical professionals who weren't listening to me. I was forced to be my best advocate like I’ve had to be the past 20 years. These drugs gave me EVERY single debilitating side effect possible for four months and when I finally forced my doctor to take me off the drugs, he abruptly took me off without weaning — an amateur move for such a well regarded orthopedic surgeon since this I common knowledge to those prescribing.
I even said, “Shouldn’t it be gradual?” He said I would be fine. Once again, I made the mistake of trusting my doctors
I was bedridden for five-six weeks, alone, with chronic nausea, no appetite, migraines (which I have never experienced), sleep deprivation, radiating and worsened pain, dizziness, throwing up, blurry vision, seeing black spots, severe cotton mouth, brain fog, brain zaps, never-ending stream of stinging tears and every other symptom you can get. Most of these were symptoms I experienced over duration of my treatment but now worse. I still have some of these symptoms like stinging eyes and blurry vision. I couldn’t eat much of anything for six weeks.
Later after I researched the antidepressant drugs more (prescribed to block chronic body pain), the withdrawal symptoms that can occur for some were compared to heroine withdrawal. It was pure hell. And when I expressed my feeble condition, there was little concern or help from my doctor. This was horrible for anyone but a disabled person with muscle wasting that’s hardly eating is cause for concern. I immediately left his care like I’ve had to do so many times. Among health professionals the symptoms related to discontinuation of anti-depressant Cymbalta is regarded bad enough to warrant its own diagnosis. There are many forums with patients sharing their nightmare and worsening of condition. The discontinuation syndrome can last for months, some have permanent symptoms.
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During this time I cried every single day – some days all day for five months. I was so distraught about absorbing more health issues. With this and my mother’s one year anniversary since she passed around the time I started taking the drugs, I chalked the endless crying to these events happening in my life. While these things were contributors I later realized through research that the antidepressant drugs were the cause of my involuntary crying, as it’s a listed side effect. So is suicide and even violence. My emotional and physical disposition was worse on these drugs.
My body has never done well with prescriptions so I usually avoid them. What works for certain people may not for others. But I was so desperate, averaging up to 1-2 hours of sleep for months over the past couple years due to mindless chronic itching and chronic body pain from head-to-toe. If I could share a mental snapshot of my lonely nights, it would paint a much better picture. It's a cruel, cruel joke to experience incessant head-to-toe Itching and not have the arm/hand/finger strength to scratch yourself. I felt so alone in my shell. So often I feel alone. Everything is so hard and it's not going to get easier.
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After I removed myself from the drugs and worked on more natural ways to help myself, my condition improved. I also oddly felt less depressed, and I didn’t even go to the doctors for depression.
Antidepressants aren’t just used for depression anymore, they’re prescribed for a whole host of things like pain, and in some medical circles this rise in prescribing antidepressants (for other uses), much like opioids, is controversial and lacking justifiable evidence for many in the industry. Psychiatric drugs are even prescribed to children. In fact, the fastest growing market for psychiatric drugs since 2008, at 53%, rate, is babies from 0-1 year old, and next fastest growing market is 2-5 years old.
What most people don’t realize is if a drug receives FDA approval for any purpose, it can then be prescribed by a doctor for any other purpose and to a person of any age without research or trial. Your baby could be treated for irritability but you may not know it’s an antipsychotic drug used to treat schizophrenia.
(*As I’ve mentioned before, every person is different and prescriptions are needed and work for many. We shouldn’t be a pill shaming culture. Only you know what’s best for you but the more sides you know of any subject, the better. This is only my experience as well as a well-documented perceived epidemic unique to us, in addition socio statistic rises like suicide and violence paralleling increased use of these drugs. Always closely monitor yourself and consult doctors you trust have your best interest at heart over drug sales. Trust your intuition.)
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My symptoms are not gone and still undiagnosed, but it’s better than those bleak 5-6 months. I'm still living with the pain, nerve pain and my itching has come back with a vengeance — all on top of dealing with a muscle wasting disorder that is driving me to immobility. For the last few months I was averaging three hours of sleep every night. But lately, sleep has been better.
It’s hard when you have the spirit of a doer but so much of your time has to be spent on trivial moves, endless medical professionals and diagnoses, worrying about medical bills you can’t afford and traversing a health care (insurance) industry whose bottom line doesn’t include helping those who are sick.
Towards the end of June David Luong, a Blizzard Entertainment artist, curator and founder of Photonic Playground gallery, asked me if I would like to do a solo show of 20 pieces set to open on August 1st. My initial thought was of insecurity and “no”.
For one, I had been having such a horrible time with my health. I hadn't really been drawing consistently for the past 3 years other than freelance, so worried I wouldn't be able to draw or draw well for that matter. How was someone like me with chronic debilitating symptoms and a disability going to get a show together in a month or so?
I didn't want to disappoint and I don't like signing up for things if I can't do my best work. I don't put my name on projects that aren't of my standards so, void of confidence, I almost said “no”. But my husband Jason assured me I could do it, so nervously I accepted the challenge.
Second, through the years I haven't been confident about my illustration skills. I have done a couple group shows and one mini solo show at 'Share and Do Good' boutique that utilizes the giving back business model (highly recommend this shop. The owner is wonderful and giving). But other than that, this would be my first big show.
We are often our own worst critic and I’m no exception. This was an issue I had as an automotive design major among a small studio consisting mostly of guys. My insecurity that I didn’t design or draw as good as others greatly crippled my ability to improve. I spent so much time trying to look like everyone else that I prevented myself from excelling in the ways I wished I could have. Granted, I’ve had great success since once I released myself from the bubble of competitive college and I also was going through incredible uncertainty and insecurity with my unknown ailing health, but I knew I could’ve been better if I had stopped getting in my own way.
But that’s me. Whatever I do I rarely allow time for a pat on the back and instead think of how it could’ve been better. Like I said. We are our own worst critic.
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My education was in Industrial Design/Automotive Design at a Detroit art and design school. My training was drawing cars and products. So I’m a self-taught illustrator. I only began illustrating in 2011 when I realized blogging isn't the only way to communicate my advocacy, so I began illustrating as a way to give a snapshot of the emotion behind constant loss. We have all experienced loss through a death of a loved one. Now imagine that loss is constant and unrelenting every single day for your entire life.
While I did go to an art school and could draw, illustrating is a completely different animal than industrial design.
In 2011 I entered the world of illustrating with a doodle of myself doodling. I wasn't trained and didn't know how to illustrate a story but I began trying to pour my feelings in a single image, anyways.
My husband is a concept illustrator for the entertainment/video game industry so I had an inside look into the illustration field through him and our friends. Los Angeles/California is a hot bed for some of the best artists and illustrators in the industry and fortunately we are friends and among some of the best talent ranging from animation studios like Pixar and Cartoon Network to Marvel. The Los Angeles illustration/art/animation/video game/entertainment field is big but not really. Everyone seems to know each other somehow.
It's been great having friends in this field, but on the flip side I have felt insecure about putting my work out there among friends and professionals who studied and work in illustration. I've felt like I wasn't good enough to mix with this group and only posted my images for the sake of gaining understanding for my GNE Myopathy. This insecurity is bad, I know. Because I would be the first to tell anyone that you don't necessarily need training to be considered a writer, artist, cook or whatever interests you. While I'm not saying training is unnecessary, to me the expression and sentiment is the point. You don't need degrees and expertise to express yourself. Expression and sharing allows our emotions to transpire in healthy ways rather than destructive.
But as usual we are kinder to others than ourselves and don't always follow our own advice. At the same time I don’t shy away from trying new things I’m inexperienced in. I learn how to do things and I’m a natural wanderer that wants a hand in trying as many new things I can.
This exposure to a different side of art has made me realize how much I love story-telling. I began story-telling out of necessity for my blog, which was, I believe, the very first blog for GNE Myopathy (aka HIBM); a very rare and genetic muscle wasting disorder that I have. I have found story-telling through art has been a wonderful and cathartic experience and my true self shows through my images, whether I want it to or not.
Click on illustration to read about the inspiration behind each one.
For my art show I wanted to include old pieces but I didn't want my entire show to be pieces people had already seen, so I set out to complete seven new pieces, which seemed very ambitious for me.
I hadn't drawn seven pieces in three years, was I nuts?
I draw much slower than most so everything I do requires more time than the average person. To save time I decided to do all my new pieces in similar style and subject. I tend to jump around styles because I like trying new ones and/or certain styles speak better to the message I'm trying to convey.
My inspiration was 'invisible illness' and all the chronic symptoms I had been experiencing this year. Invisible/chronic Illness is misunderstood by the public and a different kind of disability. Even I was unaware and “ignorant” about this sect but my crash course on chronic illness meant I had a lot to say about the subject.
With the support of my husband, I managed to do new art, frame, write and put a 21 piece collection together that spoke to my experience within a month. I was surprised but proud.
With a computer and internet it’s easy for someone like me to be independent and navigate the entire ship.
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I had some jitters before my solo opening on August 1st. I always do. As public as I am, I am often uncomfortable being in the spotlight. It sounds strange since I so freely share some of the most personal aspects and emotions of this journey. It can be uncomfortable, yet I am very comfortable sharing and public speaking. It’s weird.
But sometimes it can be tiring sharing and sometimes I want to shout that I'm not just about my disability.
I don't like sharing this because I don't want my friends, family or strangers to feel afraid to ask questions. I WANT people to ask questions. I want people to want to learn and understand. I think many people are ignorant, but not all ignorance is malice. Some people live in a bubble and don’t receive diverse experiences which leads to ignorance, fear, defensiveness and thus cruelty. For so many people I have been their first exposure to disability so I want to educate. If they still don’t get it after they’ve been educated and choose to stay ignorant, then that is on them. I did my part.
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In other art shows I felt uncomfortable and awkward just sitting there – waiting for strangers to address me as if I had a big sign on me saying “Disabled”. I knew I was so much more but have often felt like this is all I'm seen as because I have made it my main message for over a decade. From nonprofit work, Bike for Kam, writing and my art — I have strongly attacked advocacy since I realized my voice could be of help in a time when very few patients were going public with their diagnosis and story. But it's never been without struggle. I’m more naturally a private person.
Sometimes when I share something personal online, I complete a mental somersault afterwards asking myself why did I just share so much and does anyone really care? Does it really even matter?
For so many years I have been a very loud and active advocate and sometimes I have felt advocacy has robbed all the things I wanted to do that comes just from me and not my disability. I have felt my advocacy chains me to my disability when at times I want a break. Those two parts of me have been at odds for more than a decade. But I have embraced it. I have realized while this is not all of me it’s a significant part of my daily life, and I have found ways to insert my self without the disability into my advocacy.
I don't want attention for attention sake but I know my message is important. I don't mind sharing and find it necessary. Not only advocacy for my rare GNE Myopathy and disability but for those going through struggle. I've always been very sensitive to those who feel alone. If I was honest, loneliness has been a part of my life since I was a child so it's an emotion I understand and can easily observe in others. Maybe it’s from being an orphan and starting life with such uncertainty. Either way it's horrible feeling alone, especially when you're in the trenches of illness and disability. I’ve experienced loneliness on all spectrums but this is the loneliest.
My sharing is to reiterate that you're not alone. Someone else sees and understands you in this world.
After closeting myself for a month and working non-stop to fulfill my vision, the day of the art show was here. The night went way better than I thought it would. I SOLD OUT! I sold all 21 pieces and most of my smaller limited edition prints! I was shocked, overwhelmed and encouraged.
There were many things different about this art show than my previous ones. I didn't feel awkward or insecure sitting there. I didn’t feel like I was just the girl in the wheelchair in the corner waiting for someone to take pity and buy her moderately good art. Perhaps I had grown more comfortable in this role of public advocacy. Perhaps I’m seeing what others see.
From the time the show opened until it closed I was talking to friends and strangers non-stop. Even the UCI Neurological staff who handle conditions like mine and ALS came to support. They purchased a piece for their hospital wall which was probably the highlight and biggest compliment I could have received.
An hour-and-half into the show my friends tapped me on my shoulder, pointing to all the red “sold” stickers. I didn't have time to look up during the show so I hadn’t noticed. I was shocked. Then grateful. Grateful that others saw themselves in my work. Grateful to Photonic for seeing something in my work and inviting me to share. Grateful to Jason for always believing in me.
A recent quote I discovered from political/social artist and activist Ai Weiwei says everything I have been feeling the past few years.
“ If my art has nothing to do with people’s pain and sorrow, what is ‘art’ for? ”
My buyers were an equal mix of friends and strangers. By the end of the show I sold every piece except two (they sold at closing). This told me my message was relevant and I wasn't as bad at drawing as I thought I was.
I loved interacting, especially with those who felt open and vulnerable enough to share what they were going through. I feel privileged when people approach me with their struggles and share how they relate to my story.
One of the unexpected side effects of sharing my story is it has given permission to everyone around me to share some of their most darkest, deepest struggles and secrets, and this art show was no exception. Strangers came up to me sharing their stories of illness or depression. They shared stories about their loved ones struggling with illness and what that is like to watch. Vulnerability is ok.
What I have learned is most everyone is struggling with something and people desire authenticity.
One of the aspects about my show that surprised me was seeing pieces I had drawn over the years all together on a single wall. My art works better as a collective narrative. There was one story on the wall and it was mine. As I scanned the wall I felt like I was traveling through time. Sentiments and emotions over a span of years collectively had a voice. It was wonderful even for me to experience my work in this way. This art show was reaffirming and the best thing I did this year. I look forward to furthering my advocacy through art and writing.
My next big project is my children's book. It will be based on an older drawing I did conveying struggle and acceptance. Follow me on my instagram to follow the development process as I put together this world. I plan to begin in the New Year and have a few projects I’m excited to share in the near future :).
My art gallery
Today is International Persons With Disabilities Day. The annual observance day of International Disabled Persons was proclaimed in 1992 by the United Nations. It aims to promote the rights and well-being of persons with disabilities in all realms of society and development, and to increase awareness of what we face in every aspect of political, economic, social and cultural life.
To celebrate I’m launching my first (trial) limited edition run. I still have my Society6 shop (third party print shop), but testing out the success of limited edition printing, signing and shipping certain prints myself.
'PAINstaking' print (limited edition of 25) is now AVAILABLE online! (US & Canada only)
Purchase today at: https://www.kamredlawsk.com/shop/
12x16 (standard frame size)
giclée print on Moab Entrada cotton rag
hand signed