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.
Yesterday was the 25th reunion of the premiere of The Shawshank Redemption. I watched it last night, while I was nursing my knee after dislocating it from falling down the stairs of a neighbor’s deck while chasing Geronimo. Geronimo likes to play the game of escape and chase. And while I can at least stand and walk now, I can’t run or chase him. He always runs into our neighbor’s yard, which is fenced, so I can get him back. But, it’s a humbling game. Me, with a dystonic gait, trying to lunge after a 7 pound ball of pure energy. I only fell down a few stairs, but dislocated my patella, sprained my wrist, and came home with dirt on my face, where I had planted on the ground.
I can’t explain the phenomenon that has happened to me since I started Levadopa in June. Something that was locked in an area of my brain that I had no access to has been unlocked! Visual art is flowing out of my left hand at breakneck speed. It’s wild and wonderful, and I’ve finished over 50 pieces of art since June. It’s good and it’s powerful stuff, and I’m proud of it. But my heart is aching so much, and no amount of paint is going to make it stop.
It’s a beautiful distraction. When I’m here, in my studio, I’m just free. I can be myself. I don’t have to be the young woman I was before my life was interrupted, and I don’t have to face the daunting future of what happens next. It’s just me, the paper, and the paint. It’s now. It’s all that matters.
In Shawshank Redemption, Brooks Hatlen quietly tended to the library, his only companion an old raven that took up residency with him through the prison’s small windows. Filling the cart with books, Hatlen spent his days going through the motions of life, resigned to living small and discreetly among the books and the boys that he visited with his squeaky rolling cart. After over 50 years inside, Brooks was paroled, and walked out of Shawshank with a suitcase and nothing but dusty memories of the outside world. Institutionalized, they’d call him today.
This morning I got showered and prettied up to take Beckett and his girlfriend to the mall. She is here for her birthday, and I was here to play chauffeur and guide. I sent Geronimo off to daycare, so he’d get lots of exercise and not be in his crate all day. The kids got up, and told me they had decided to just go shopping closer Intown, so I dropped them off and wow, there I was, alone in the car, with no kids, no dog, nothing to do. Nothing between me and whatever I wanted to do. I texted Basil. Maybe I’ll go have a slice of my favorite blueberry pie and a cup of coffee. It’s hot outside, so nowhere that I have to walk far, and Manny’s is always nice and cold inside. Or maybe I’ll go see The Master Painter’s Exhibit at the High. But my handcycle blew a front wheel, and with my wrist, I can’t push myself manually through the museum. As I started wandering through the city, I felt like Brooks. I was driving too slow. People were honking. I passed the High. I drove through the parking lot at Manny’s and didn’t pull into a spot.
“I don’t want to sit and eat pie in a restaurant by myself like a fat person.” And I’m a fat person. My chest started to constrict. I couldn’t breathe. Tears started falling down my cheeks. I’ve been alone so long, locked inside my own mind, inside my little bedroom, inside my house, I felt paralyzed. Basil called and was worried when I answered the phone crying. We talked and he is sweet, as always, “I understand. I’m sorry. I’ll give you a big hug when I get home.” But no, you don’t understand. And I don’t want a hug. I just want to go home. I look alive, and I have on nice shoes and my hair is pulled up. But the only place I feel safe is in my studio. Or in my bed, with my tattered blanket and the safety of the online story I’ve created. Institutionalized, you might call it.
I don’t have friends to call and say, “Hey, I just got cut loose for a couple of hours, where are we meeting?” I mean, YES, of course I do. Ten people will respond to this post and tell me to call them anytime. But how do I do that after being so alone for almost 20 years? I don’t know how to be a person in the world anymore. I don’t know how. I talk too much. I am desperate and needy. I don’t feel comfortable. I’m terrified. I’m nervous. I don’t know how to be a person anymore.
I want what I can’t have. I want my friends back. The ones that knew me, that I don’t have to talk. The ones that would just know what I’m thinking by the look on my face. I want Robert. I want Lucky. I need Michael. I want Evita. I need Marc. I want everything to be the way it was before it just stopped. I know it can never be that way again. I know. I know. I know. But I got trapped there, and life went on without me. And I feel cheated and scared, and so alone. It’s so unfair. And I’ll be fine. Of course I will. I always am. But I’m not sure I’ll ever get over it. The pain, and the loneliness are so big. I’m old now. Everything is different. I just want want one more day. But that’s all gone. And I was the only one that got stuck in this goddamn cage. My heart is broken into a million pieces. And now I’m painting it all back together, one stroke at a time.
I have to remind myself that some birds aren’t meant to be caged. Their feathers are just too bright. And when thy fly away, the part of you that knows it was a sin to lock them up does rejoice. Still, the place you live in is that much more drab and empty that they’re gone. I guess I just miss my friend.
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.
WHAMMY 