Tonight you are sleeping in a prison cell, not in the soft comfortable bed that you deserve. I now think I understand why, and you should too. You have been living in the prison cell of your body your entire life, unknowingly suffering unlike other people. We have a genetic connective tissue disorder called Ehlers Danlos Syndrome -Hypermobility Type. You know how you’re severely double jointed? Yeah. It’s turns out, that’s not normal. The growing pains you had as a kid, those were not normal. They were an early symptom of this genetic disorder. Let me try to explain.
Right before I started talk therapy again in late September, a shift had already started occurring in my life. My bi-weekly sessions have fortified my “then do something about it” attitude. I have found myself having very little patience with people who are not actively working to improve themselves, their lives, or doing SOMETHING in the world.
Anything. Are you bored? Get a new hobby! Seriously, try something completely different. You want more friends? Go out to events. Meet new people. Friend them on Facebook. Invite them for coffee or a drink. There are great people out there. Give one a chance! Need a stress outlet? Get out and exercise. Tired of being fat? Work on your food addiction. (Ouch. That one hurts because, shit, that’s directed right at my giant belly.) Dealing with volatile emotions? Get a therapist.
Whammy: Learned how to fly a kite.
I realize that I’ve spent a great deal of time, floating through my adult life like a plastic grocery bag that got caught in an updraft, took flight, and aimlessly wandered through a random parking lot or, in my case, was blown down a bunch of dead end streets. That’s okay. Floating is fine. It’s easy. It doesn’t require much effort. And eventually you’ll land. You may not like where you land, but hey, you just floated there; both willy and nilly. It’s where you are. And that’s a fine place to start learning to fly your kite.
Tie a string to your grocery bag. Start learning which way the wind blows. Start learning to fly your life kite. How much slack can you give yourself before you start to flop? Right now, I can’t give myself much slack. If I do, I’ll get stuck on the couch with a book, and live another day of my life, wrapped in the fiction of someone else’s story.
Right now, I have to practice flying like it’s my job. And actually, it *is* my job. It’s my job to take care of myself. It’s my job to find my happiness. It’s my job to do things that equal loving myself; exercise, getting enough rest, not allowing myself to be bullied. It’s my job to address my problems, personality flaws, and addictions. Living my life is my job. And just like any other job worth doing, the harder I work, and the more fun I have at work, the more I love my job. I’ve always been a workaholic.
I ain’t got time for your excuses on why you can’t learn to fly your own kite. If you’re floating right now, that’s cool. Enjoy it. But don’t bitch about where you land. That’s your launchpad. Treat it reverently, and move on. Do the work. And don’t tangle your chaotic strings into my kite. I’m trying to keep it afloat. You’re welcome to stand by me, and give me pointers. Or let me show you some tricks. We can always fly kites together. In fact, let’s.
It’s my 3 month L-Dopaversary today. I’m exhausted and crabby! I’m going to bed before sundown. But, holy fucking shit, I feel like myself again! Myself, with a bit of fin flop, but what a difference 8-10 little yellow pills a day can make. Hallelujah!
There is a scene in the movie Awakening where Dr. Sayer, played by Robin Williams is speaking to the mother of his patient. The patient is Leonard, and is played by Robert DeNiro. Dr. Sayer is a neurologist, and believes that L-Dopa will bring Leonard out of his 35+ year catatonic state. He is trying to convince Leonard’s mother to give consent to try the drug on Leonard. Here is the dialogue.
Leonard has Parkinson’s disease?
No … His symptoms are like|Parkinson’s disease – but then again, they are not.
What will the medicine do for him?
I do not know what it will do for him,|if anything at all.
What do you think it will do?
I am not sure, it was designed for|a totally different disorder.
What do you hope it will do?
I hope … it will bring him back from|wherever he is.
– To what?|- To the world. What is there here for him|after all these years?
You …|You are here.
Many of you reading this haven’t had your life severely interrupted for more than a few years by a health condition. So, it may seem like a completely foreign concept to truly believe that you are never going to get better. People get sick. Usually, the illness runs it’s course or there is a treatment, and you get better. Life sucks while you’re sick, but you’re going to get better. So, you hunker down, take your lumps, and be sick. Most of the time, if you don’t die, you get well again. And if you did die, and you’re reading this, OMG, YES! There is Internet in the afterlife.
People with chronic illnesses and complex illnesses start out just like everyone else. Okay, I’m sick. There’s something wrong with me. I will take the treatment, do everything the doctors tell me, and even though this is going to last a long time, or forever, you still sincerely believe that if you play along, you will get better. At least a little better. Possibly a remission?
I don’t know how many of you know this, so I’ll just go ahead and say it, and if you have cancer or know someone that died of cancer, yeah, me too. This is just an emotion that people with chronic illness have sometimes, and they have to feel it, or… oh, shut up, Bunny, and just say it. More than a few times over the past 16 years, I have heard both sides of the “Cancer Conversation”.
One side of the “Cancer Conversation” are people that find out you have an illness that they can’t pronounce or know nothing about. When you tell them, “I have Ehlers Danlos Syndrome” or “I have Dopa Responsive Dystonia”, their immediate response is, “Well, at least it’s not cancer.” The other side of the conversation is when you realize that your chronic illness is never going to get better, despite treatment. The chronic illness patient says, “Damn, I wish it was cancer. At least I might have a chance at being cured, or go into remission. Or at least get a casserole and a get-well-from-cancer gift basket.”
Both sides of the “Cancer Conversation” are awful. But because cancer is the illness we gauge all other illnesses by, it is what it is. When you have a rare or complex disease, people have absolutely nothing to gauge your illness by, so, most people become very uncomfortable and don’t even want to talk to you about what it wrong with your body, or how it might effect your life. And nobody wants to admit that, as your friend or family, that they are scared. They’re scared for you. And they are scared for themselves. How will this change you both? What will it do to your relationship? The result of this fear is typically…silence. It’s hard enough to talk about cancer! But this? Where do you even begin?
If you’re Leonard, and you’re not going to get better, they put you in a place called, “The Garden”. It’s where you go when all you are capable of doing for yourself is being fed and watered. While not in a catatonic state, I myself, lived almost two decades in “The Garden”. I still pretended to try to be a mother and wife, friend and daughter. I even held down a full time job until I realized that it was dangerous for me to be in the office. There was a fire drill. And a surprise ice cream party at the spot where you go to meet your team in the designated fire drill spot.
I never made it to the ice cream party. I made it down two flights of stairs, being mobbed by bodies faster and more capable of descending a staircase. Of course, I kept smiling and loudly joking, “Go. Save yourselves! Leave me behind! If this were a Zombie Apocalypse, I volunteer to be bitten! Please. Kill me!” Nobody stopped to help, of course. No one even asked. Put on your oxygen mask first. And if the building is on fire or there is ice cream, push the crippled lady against the wall and run! I made it down from the second floor to the parking garage. I got down, and laid spread out in one of the handicapped parking spaces. That’s as far as I could go. I texted Basil. He rescued me, and that was the day that I decided to leave work. I wasn’t going to get any better. I needed to go home. I needed to be in “The Garden”. All of my social friends were already gone. And the day I left my coworkers was the last day I had any friends in real life.
My universe became smaller and smaller. In “The Garden” there is Basil and Beckett. And now, there is Geronimo. And there is social media. I have no idea how people lived for decades in their own gardens without the Internet and social media. It hurts my heart to know how terribly lonely they were. The profound loneliness I have experienced would have been unthinkable without a 24/7 connection to at least live vicariously through my former friends eyes. I still miss them all so much.
I rely very heavily on my social media networks for love, friendship, and support. That’s hard! Because, while it’s wonderful, it’s hard not to feel connected physically. When I’ve met someone face to face, the bandwidth is so huge, I remember everything. I soak in features, memorize your voice, notice the little gap between your teeth, and can’t believe you’re so much shorter than I had imagined you! And then, when we are back online, I have all of those little gems to roll around in my hands, while we interact online.
The people that I am close to online that I have never met in person. Oh my God, some of them are my lifeline. Some of them are my closest friends. And sometimes, I wonder if I am delusional, and have just made them up, like imaginary friends. This is very hard to describe. If you go out and hang out with actual real human beings regularly, I probably sounds insane. But, fellow home-bound and bed-bound people, who’s with me?
Whew. Really, there is a point coming.
This weekend is my 3 Month L-Dopaversary! I have graduated from “The Garden”. I’m not full strength, by any stretch of the imagination, but I can bathe and feed myself now whenever I want! I even started shaving my armpits again. I still have trouble being upright for more than a few hours. L-Dopa is my magic bullet for dystonia. But my autonomic nervous system is still extremely dysregulated. I still have EDS. I always will. But, now I have a disease that people have something relatable to gauge by. Now, I say, “I have something very similar to Parkinsons.” Ohhhhh.
I’m leaps and bounds happier outside of “The Garden”. But, I would be lying if I didn’t tell you that I’ve had those moments. Severe darkness overcomes me sometimes when I catch a glimpse of myself in the mirror. I was 32 years old and living in the paradise of Hawaii when this hit me. I was strong and young, a new mother with a bright future. In those years I was fit, had loads of friends, owned my own business, and traveled the world.
2003 – 32 years old – Kaua’i
The dialogue:
What do you hope it will do?
I hope … it will bring him back from|wherever he is.
– To what?|- To the world. What is there here for him|after all these years?
The increased depression and the suicidal ideation side effects of L-Dopa will lie to you. They have been lying to me everyday for three months. They whisper in my ear.
‘Look at you now. What do you have to come back to? You are a fat, middle aged, loser with no friends left. They don’t want to see you now. They don’t care about you anymore.
Your career is gone. You can never get that back. You’re a dinosaur now. Besides, we’ve got you. We won’t let you leave the neighborhood, remember? Stop bragging about how you can walk. That’s barely walking. You’re not going anywhere. You have nowhere to go.”
But You …|You are here
And that’s why I want to be here, too. Be patient with me as I step out of “The Garden”. I’ve been away for two very important decades in life. If awakening during midlife isn’t enough to bring on a crisis, I’m not sure what is. I have thrown myself into a new hobby. Many dystonia experts agree that the arts can help alleviate symptoms, and I have definitely found this to be true. It’s called a Sensory Trick. Most people use dance. I would dance, but I can’t stand long enough. Baby steps.
So, I paint. Using my brain creatively and going through the motions of painting is an amazing sensory trick. I might be shaking my way through a cup of coffee, but as soon as I am mixing colors, I can pull a straight line without a tic, tremor, or grimace. The brain is an amazingly weird and wondrous place to live.
I’ve completely forgotten what it’s like to be a person, or really have people in my life and to do things. I’ve been here. But I’ve been so far away. I want to experience everything, and at the same time, I want to hide. I’m so out of practice. I’m all over the place. It’s all so much, and it’s never enough. I’m afraid to go to sleep, like Leonard in the movie. Dr. Sayer says, “I’ll be right here when you wake up.” Thank you for being here. You. You are here.
I finished this piece today. Tomorrow, my niece will be 19 years old! Happy Birthday. I took this photograph when she visited with us in Atlanta. She must have been around 12-13 years old in this photo. She was modeling a necklace for me. She struck this wonderful pose, and I’ve loved this photograph for years. Being able to transform it and give it new life was super fun, and I hope she will like it.
The day after Dog Day, I was just talking to Geronimo, while snuggled up on the couch. And I realized that we should talk to our people the same exactly the way we talk to our dogs! How much better would life be if we felt the same freedom to talk like this to our fellow humans.
“What it is? What is it? It’s okay, come here. Come here.”
*whispering and touching face* “I love you so much. I love you so much, schmoogy wooogy.”
“Oh, you don’t want to go out? Okay. We’ll do it later.”
“Who wants to go for a ride? Who wants to go for a walk?”
“I’m so glad I found you!!! You’re the best!”
“Goodnight, buddy. Get some sleep. You had a big day.”
“You’re my best friend! Thank you for rescuing me.”
Most of the old hand tinted photographs you see were done using pan pastels. It’s a dry medium, while of course watercolor is very wet. Ive always enjoyed retouching, but doing it the old fashioned way is much more satisfying. When I learned digital retouching, I’ve always been clumsy with a mouse, because I’m a lefty and I mouse with my right hand. Using a stylus helped, but there’s just something so satisfying in blending colors with your fingers and feeling the paper.
I thought I’d do a super quick session this morning, to show the difference in two hand tinting techniques. The one on the left is pan pastels with a tiny bit of watercolor where you see blue and purple. The one on the right is all watercolor. They can be used in combination, of course, to create just the look I’m going for.
This is all I’ll get done today. Shaky hands and I need to get horizontal. But, this was a fun and satisfying little experiment.
I have been waking Beckett up for about 14 years to shower, get dressed, have breakfast and go to school. Every single day was a struggle. Tears, fights, absolute misery. During lower Montessori (preschool), he would throw himself on the ground and I would literally roll him into the classroom and squeeze out of the door with his hands, clinging to the door jam. It never got better.
Now, he jumps out of bed on his own, showers, makes his own breakfast, and plans out his day. Today, he went to work. He packed his lunch, was chattering away happily in the kitchen. And played DJ on the ride in. He asked to stop and grab a cup of coffee, which he pulled out his money and PAID FOR. Then, I watched him dash across the street and walk happily into work.
Life is for living. Maybe I see things through different eyes because of what I’ve been through. But, being happy and mentally healthy might just be about the most important goal in life. Everything’s gonna be okay. Remember that today. Change something. Change everything. Or just breathe right where you are.
If we are just meeting, welcome. My name is Beth. And a bunch of people in my life call me by my nickname, Bunny. I don’t have a preference, so call me whichever you like most. I’m starting this site as a way to share myself in a way that short form social media has squashed like a crunchy, beautiful beetle.
We are all so much more rich, complicated, and quirky than we can express in a newsfeed or scrolling through photos. I am a confessed chronic documenter and storyteller. I believe everyone’s life is fascinating, from the most mundane details to the daring risks we are willing to take daily to make our hearts feel full. I am a dreamer, yet a hardcore realist. I am a hopeless romantic, and also a complete mess of confusion, rage, and breathless whimsy.
I am 48 years old. Your typical middle aged, too chubby, bifocaled Generation Xer who is totally okay with driving a minivan, because it’s got super cold air conditioning, bitchin’ stow away seats, and can easily carry my little family plus my wheelchair and electric handcycle, which I call my Chopper. Yes, I am disabled. And I’m finally okay with saying that with no disclaimers.
I lost almost 20 years of my life to a mystery illness that kept me debilitated, mostly housebound, and eventually mostly bedbound. I went through multiple misdiagnoses, ranging from the benign diagnosis of being out of shape all the way up to deadly diagnoses, such as Autoimmune Encephalitis and Myasthenia Gravis. I lost most of my 30s and most of my 40s to maintaining and trying to keep myself alive, while raising my only son from infancy into a gorgeous and talented young man of 15, at the time of this writing. I have been more than gifted with a great husband, who is my best friend, and my little family has supported me unconditionally, even without any hope for me being correctly diagnosed or ever treated. And then it happened.
On June 1st, 2019 I finally got hit by the WHAMMY I was looking for. On that day, I started a drug called Carbidopa-Levodopa. Levadopa is a synthetic form of L-Dopa, made popular by the 90s hit movie, starring Robin Williams and Robert DeNiro called Awakenings! If you have haven’t seen it. Go watch it. It was directed by Penny Marshall, and Marge from the Simpsons is in it. You’ll love it. Trust me. Here’s a link to the trailer… Awakenings Trailer (1990)
L-Dopa is a precursor to dopamine. Dopamine is one of your brain’s most important neurotransmitters. Here’s a snippet about dopamine from a great article in Psychology Today. Read the Entire Article: Dopamine
What Is Dopamine?
Dopamine is one of the brain’s neurotransmitters—a chemical that ferries information between neurons. Dopamine helps regulate movement,attention, learning, and emotional responses. It also enables us not only to see rewards but to take action to move toward them. Since dopamine contributes to feelings of pleasures and satisfaction as part of the reward system, the neurotransmitter also plays a part in addiction.
Dopamine is heavily involved in the motor system. When the brain fails to produce enough dopamine, it can result in Parkinson’s disease. The primary treatment for Parkinson’s disease, therefore, is a drug called L-dopa, which spurs the production of dopamine.
Apparently, I am extremely deficient in dopamine. I will talk more in another post about how I figured this out, and what tests are being run to determine exactly why, but by supplementing my body with 800-1000 MG of pharmaceutical synthetic L-Dopa, I went from wheelchair to walking a mile in EIGHT DAYS. That may sound hard to believe. It certainly was for me! Here’s a photo of the morning that I walked my first mile, without a cane, walker, or wheeelchair. Powered only by my flat Fred Flintstone feet, I walked over 2,000 steps! I still don’t have an “official diagnosis”, but I’m pretty sure it will land somewhere close to Dopa Responsive Dystonia, if you want to Google that.
Since my WHAMMY, I have been on L-Dopa for almost 12 weeks. I have undergone a transformation of epic proportion. I feel better than I have since 2003. That was 16 years ago. I’m walking now, standing (STANDING!!!), showering instead of taking baths, and my brain is starting to come fully back online. I have been creating art again. I am an actress, puppeteer, photographer, and graphic artist from my past life. Right now, I am exploring combining photography and hand painting in a unique technique that I call Pigmentology! This site is a place where I can celebrate, mourn, talk about surviving chronic illness, answer questions, help people who are alone and have been lost, like me.
I will be talking about the ups and downs of daily life, dopamine, Dystonia, Parkinsonism, health, art, love, documentaries, my mighty dog Geronimo, and you know… stuff. Subscribe below if you want to get email updates. You can also follow me on Facebook or Instagram. I’ll link to all of that stuff later. I’m still working on this site, adding menus, writing the blah blah blah stuff. But I’ve tackled the blank white screen. First entry in the books.
I look forward to sharing with you, and hearing from you. Everything will be categorized, so, if you don’t want to read about my artistic process or my health crap, you can click the category you’re most interested in. Categories will show up as I begin to write about them.
WHAMMY 