An Ancient Roman Bridge (France), 10?x12? oil on canvas, unframed
$275 CDN + $25 shipping – click here for more info

I’m applying for my first Canada Council arts grant today. It’s been anything but fun. (Turns out, I would rather have my nails pulled out than write grant essays. I am assuming this feeling lessens with practice.)

It’s an equity/disability travel grant and I’m hoping it will offset some of the costs of the Paris program coming up in January. (There are a lot of zeros.)

Writing art grants are a big part of an artist’s life and it’s time that I started practicing. So whether I’m awarded any money or not, it was a useful exercise – I updated my resume, filled out their budget and most importantly, had to write an essay that would persuade a group of strangers who have never seen my work that I am a worthy of investing $1000 in.

It took me a week to write the 3 page essay. There was a lot of stomping around the house in between writing sessions, as I overflowed with frustration and fear.

Am I doing it right? Will they like it? What if they read it and laugh at me? 

In the end, I just sat down and did it. No magic, just fingers to keyboard, words to screen. And after a while, I began to remember my passion for what I’m doing and forgot about the anonymous people reading it. I allowed myself to get caught up in the pleasure of writing something well.

I’m proud of what I wrote. It expresses clearly and passionately why I’m going to Paris and the Louvre, why I care, and how it’s going to affect my work. Even if nothing comes of it, I wrote something meaningful.

And the hardest part of all was naturally where all of the juicyness was hiding. I had to explain how the work I made was a part of “disability arts” – arts that express the views and opinions of disabled people. I was worried because my work does not immediately strike anyone as something that could be described as disability arts. It’s not political and I don’t make social commentary.

This is what I wrote:

At the age of twelve, I was diagnosed with Chronic Fatigue Syndrome and fibromyalgia. Art became my way of coping with my changing world and the physical discomfort of chronic illness.

The work that I make is a search for the opposite of my own experiences. In a world that can be harsh, I seek out the beautiful. In a life where my body has not always functioned the way I wished it to, I paint the intricacies of the human body to remind myself how elegant and exquisite it can be.

To be disabled is to sometimes forget your own humanity, to reduce your sense of self to only what you cannot do. And yet to make art is so distinctly human. I am interested in that humanity and the truth that resides inside it. My work is representational and realistic because I want to see the world clearly and without distortion; it is about truthful perception.

To be human is to make peace with our own fragile vulnerability and our strength, and for me, nothing epitomizes that more than the flesh, blood and bone of our own bodies. The Old Masters captured that sense in pieces that can still take our breath away, even hundreds of years later. I want to study and incorporate that understanding and that feeling into my own work.

It is nothing but honest truth.

And in writing and re-reading those words, they feel important. They feel soul deep. Sometimes it’s easy to forget why I started making art in the first place, the reasons and passions that drive me. I have seen darkness, I have been through trauma and suffering. My life has not been served to me on a silver platter.

But I believe in the lightness of life. I believe in the good, in the beautiful, in the kind. And I make art to remind myself and others of the beauty that is around us every single day. 

I am not as sick as I used to be. I am lucky. Over the past 12 years, I have learned to manage my symptoms and it’s not something that even crosses my mind on a daily basis. Like a diabetic learns to monitor their insulin, I’ve learned to listen to what my body needs.

And now, I’m fortunate enough to be going on this crazy adventure, spending half the year in France, and studying the art that I love. I’ve been there the last 2 years and it still boggles my mind that this is my life.

It’s not easy by any stretch, and at the beginning of each new year, I have my freak out moment as I crunch the numbers for the year ahead and it always seems impossible. But somehow, between fundraising and loans, I get there. And I’m still going!

If you’re interested in finding out about my crazy French art adventure, click right here to read all about it. If you’re interested in helping me fund my dream, you can always sign up for Sketches from the Road!

I’ve written a lot about my experiences living with Chronic Fatigue Syndrome and Fibromyalgia. I was diagnosed at 12, and the first 5 years were the toughest of my life.

Back in 2010, I wrote another post for ME/CFS Awareness Day about how art helped me find purpose in my life and gave me a reason to live again.

In a way, my illness and my art are interdependent – without getting sick, I think it would have been a long road to my art. Without my art, I don’t know if I could have moved past being sick to building a better life.

I can’t say that I’m grateful for having a chronic illness – I can only say that without it, my life would have been very different and that I love the life I have right now.

But I like to think that I would have built a happy life, no matter the hand that was dealt me.

So today, instead of talking about how hard it’s been (and lord, some days it’s been hard), I want to celebrate the delights in my life. I want to talk about the good things that have happened the past 11 years.

I have spent time honouring the difficulties. Now I want to honour the achievements.  

11 wonderful things for 11 years of illness

1. Jesse.

If you know me, you know I’m not the kind of girl whose whole life revolves around her man. But my man is just so lovely, he has to go to the top of this list. For over 5 years, he’s been my best friend, my cheerleader, my shoulder to cry on, and the celebrator of my total dorkiness (since he’s a complete dork himself). We’ve been through a lot together, and come out stronger for it.

I’m grateful to us for us. We built this life together and it’s a pretty damned good one.

2. More amazing friends than I know what to do with.

You know who you are. I am so blessed to know so many delightful people who support me and love me.

3. My independence & freedom.

Six years ago, I didn’t believe that I could ever live on my own or support myself financially. Look at me now! I moved across the country & built a home for myself in a place where I knew no one.

4. Prince Edward Island.

Thank you for being my very first home. Thank you for welcoming me with open arms. Thank you for introducing me to some of the loveliest people I know.

5. My art.

Of course. The art that I make is one of the most positive forces in my life.

The River Cam I, 11"x14" oil on canvas ©Sarah Marie Lacy, 2012 SOLD

6. Studio Escalier & France.

My experiences last year were transformational. I still can’t believe that it happened. I still can’t believe that I’m going back in 10 days. I am so grateful and so blessed that this opportunity came into my life.

7. My collectors & supporters (that’s you!).

You are the reason that I make art, that I write and the reason that I got to France. Thank you from the bottom of my heart for all of the support that you’ve given me the past 4 years.

8. The little things.

Because even on days when I feel sick and small and scared, there are still steaming cups of tea, sunshine, cookies, laughter, books, raindrops and pets who will curl up under the blanket with you. I will never stop treasuring the small, sweet moments of life.

Study: Sugar Cookies, 5"x7" oil on canvas board. © Sarah Marie Lacy, 2012

9. My family.

They’ve always been a huge source of support for me, even when I start doing things that I couldn’t possibly explain to them. They may not always understand why I do what I do, but they’re always there.

10. I am grateful to my body.

After 5 years of being very, very sick, I began to trust what it told me it needed and since then, we’ve been able to develop a rhythm that works for us and my body has healed itself of so much. I just need to trust it, and it will take care of itself.

11. That still, small voice inside.

I am grateful to myself for listening to that voice. I wouldn’t be where I am today without it. It has been my guiding light back home to myself and out into the world. I don’t know if it’s instinct, intuition, a wiser part of myself or some sort of external force. I just know that when I listen to it, good things happen.

I am still here and I am still dreaming.

I will keep dreaming. I will keep savouring the small things and painting work from my soul. I will go back to France and learn how to make the art that dances in my heart.

I will love and live and laugh, not in spite of being ill, but alongside it.

ME, CFS and Fibromyalgia are devastating illnesses, don’t get me wrong. There needs to be more awareness, more research, more forward movement.

But in the meantime, those of us who deal with this have to learn to live. And that’s what I want to celebrate today – life. The life that flows through us, even when our bodies don’t work as well as they used to.

If you’d like to find out more about ME, CFS & FMS, click here to go to the ME/FM Action Network website.

The River Cam II, 10"x12" oil on canvas, unframed, $275. © Sarah Marie Lacy 2012

I’ve spent most of this year flip-flopping between 2 states of mind.

In the first state of mind, I am strong, confident, powerful, and focused. Everything goes swimmingly. Jobs show up, paintings practically sell themselves, and my voice is clear and strong. The words that I want to share flow freely from my fingertips. I know that my actions have meaning and that I am creating the life I dream of.

Then there’s the second state of mind. Here, I get stuck. I feel helpless, convinced that everything I do is meaningless and that I have no control over my future, my success, my fate. Everything is in the hands of the Universe and the Universe is cold and unfriendly. It’s all just going to end in tears.

When I’m in this place, I stop writing because I think I have nothing “important” to say. Any kind of promotion or marketing is painful, like it’s being dragged from me physically, barbed wire across skin.

Everything stops. There is no flow. There is no satisfaction or joy.

These 2 states of mind act like a form of amnesia.

When I feel strong, I can’t remember what it’s like to feel small and helpless. I can’t even understand my own thinking and am puzzled that I could have felt that way.

When I feel powerless, I can’t remember how to get back to feeling strong. It feels so foreign, so far away. I know that I used to feel it, but I can’t remember why or what caused it. I just feel like everything I do is pointless.

The in-between of metamorphosis

I struggle between the two places as I work to transform my life. Going to France in 2 weeks isn’t just about eating croissants and drinking wine. It’s about starting a new kind of life, a new adventure. It’s about spreading my wings and teaching myself to fly, both creatively and personally. (Which, in my opinion, are practically the same thing.)

Being in my hometown again triggers my feelings of powerlessness. It’s not just that I’m around people who have never known the stronger & more confident me (and so it feels uncomfortably like introducing a new person you really want people to like, but you’re so invested in it that you’re constantly nervous.)

But it’s my physical environment as well. This is a city and a home where I spent 8 years feeling completely helpless. Weeks and months spent in bed, cut off from the life I’d expected to have.

I lay in bed and watched my world crumble around me and was powerless to do anything about it. I couldn’t stop it. I kept trying to glue the pieces back together, only to watch them fall apart again. Every step forward was accompanied by 5 steps back.

I clung to my old dreams, to my old expectations of myself and who could blame me? It was all I knew. I was a kid, thrown into an adult situation and I had none of the skills to cope.

I was intensely, painfully aware of my own helplessness.

And so it is a comfortable groove in my brain, a place that it is easy to slip into and difficult to get out of.

Bringing awareness to it

I always know when I’m in that place. It’s actually the most frustrating part – I am aware that I feel helpless & that it’s not true, but I feel too helpless to change it.

So what I try to do is give myself compassion and permission.

Compassion for myself, for the experiences that led to this rut in my brain. Permission to be here as long as I need to. Every time I’m in this place, it’s because there’s something else to heal, something else to learn. It’s not a reason to beat myself up for being a victim again.

Deep in my heart, in my truth, I don’t believe that I am a victim. Inside, I hold so many truths – about my power, about my ability to create the life that I want. That still small voice inside of me knows what’s what.

And yet the rut is still there. It’s still deep. Yet I’ve been creating new grooves in my head – grooves that flow, that remind me that I’m powerful and strong, that I can create whatever I want. That I’m not helpless against the tides of fate but that my life is in my hands, to do with as I will.

And so I flip flop between the two, learning to radiate and learning to heal the parts that want to hide, that feel small and weak.

I am teaching myself that life around you responds to you.

You can’t control it. Life is too powerful. You’re a part of it and yet it’s outside of you. You can’t predict it, but you can learn to work with it. You can learn to co-create alongside the world around you.

The small part of me wants to be safe, wants all of the answers and wants nothing to change.

The strong part of me is okay with only having partial answers and great mysteries. The strong part of me is willing to get up and dance alongside life, like the Matisse painting. You learn to dance with the mystery.

The Dance, Matisse

And part of the mystery is not always being as strong as we’d like to be. Sometimes, we are weak. Sometimes, we are helpless. It’s painful to sit with it. It’s painful to live it.

As humans, we are deeply vulnerable. We are so fragile. Our bodies are not invincible. We bleed, we break. Our hearts love the people who hurt us, even though we know we shouldn’t. Our friends get sick. We get sick. Then one day, we die.

And despite all of this, we carry on. Our lives change, shatter, and we rebuild. We create new dreams, new lives, new loves, new bodies.

The same way our bodies grow new skin when we’ve been cut, we grow when we’ve been hurt.

The human spirit is almost unfathomably durable. It can hurt so much that we want to die, and yet somehow you wake up the next day and you carry on. You’re still alive.

Life wants to be lived.  

Sunrise from my studio window.

Eleven years ago today, I got sick. The emotional effects didn’t hit me till weeks later, but today was the day it started – 11pm at night, suddenly awake and feeling ill. And then that feeling just never going away.

It’s been a long road to the place where I am now.

Last year felt monumental – a whole decade. Christ, I thought, that’s a long time. I felt like I’d spent 10 years picking up the pieces, and with super glue and duct tape, trying to put back together a semblance of a life few thought I could have.

I used to joke that my only goal was to be a self-sufficient cripple. But I wasn’t really joking.

Just as much as I’ve tried to reassemble my life, I’ve been working at reassembling my Self. When you grow up defined by your illness, it’s hard to see outside of that. When it’s all anyone ever talks about, or focuses on, or remembers you for, you start to forget that there is anything else inside of you.

I defined myself by what I couldn’t do. I saw so much of my weakness, and so little of my strength. It’s taken me so long to understand what happened, to move beyond being just the “sick girl” everyone saw me as.

I will never forget the utter hopelessness I felt nearly 6 years ago when I thought that my life was over. I was so sick, I barely left my room, let alone the house. My doctor suggested when I felt a bit better I could take a couple watercolour classes at the community centre.

All I could think is, “Is this what my life has come to? Is this all there is for me?”

So I made a commitment – a commitment to come back to myself, to remember who I was outside the doctors’ offices and hospital rooms, and the endless list of “miracle cures.”

That was in July of 2006. Every day since then, I’ve been taking baby steps back to myself and towards the woman that I want to be.

I decided that I was an artist. I learned (ha! still learning) to embrace the boundaries that my life has, and to grow a brilliant life within them.
A bonsai tree is beautiful and wondrous because of its boundaries, not despite them.
I chose an unconventional path, found ways to support myself by working at home. I became the self-sufficient cripple that I’d always said I’d be.

I climbed out of the hole that I’d fallen into, and now I’m sitting on the rim, looking out at this bright and crazy world which is larger and fuller than I’d ever expected.

When I was 18, a lot of doors had shut in my face. I’ve spent the last 6 years learning to open windows. It hasn’t been easy. So much of me still believes all of the doctors, all of the advice for years to just play small, stay small, keep your head down and don’t set your sights too high because you’ll fail.

I’m teaching myself that these things aren’t true; that there are parts of me that are strong, that I can dream bigger dreams.

This year, I feel like I’ve come full circle. Once upon a time, before I got sick, I dreamed of living in Europe, being self-employed and independent. I gave up on that dream for so long.

This year, I’m working on reclaiming it. I found the art school of my dreams in France last year, and after 6 months there, I knew it was where I was meant to be. This year, I plan on returning for 18 months to continue studying and honing my craft.

It’s the next step in my journey. I’m dreaming bigger than my bank account – right now, I have no idea how I’m going to fund such an experience. If you read my blog, you know that in November, I barely made rent.

But I have to try. I can’t explain it, but this is what I’m meant to be doing. I’m following my heart, my gut, every cell in my body that’s just yearning towards this.

A step at a time, I’m stretching the boundaries of what I used to think was possible. I’m creating the space for my dreams.

Become a patron of the arts

I need to pay my tuition ($2000) by Friday, January 20^th (6 days from now). I have just under $650 of that right now, so I’m a quarter of the way there! (BOOYAH.)

Awesome Way #1 to Join In: Sketches from the Road

This is my totally awesome, exclusive inside look to living life in France (and exploring other bits of Europe) while going to a private art school. It’s kind of like my own reality TV show with a weekly video, love letters to you, photos of everything I see and my progression as an artist.

It’s just $20 for 18 months of food, wine, travel, silliness and visual pleasure.
(And you’re not tied in to 18 months. You can unsubscribe at any time. Although trust me, you won’t want to. I’m too cute. )

Sign up for Sketches from the Road

Awesome Way #2: Buy some art! (Sketches from the Road subscription included!)

Surrounding yourself with beauty is good for your soul. You know that art makes your world better, brighter and more hopeful. Get yourself a painting as a symbol for the dreams you’re dreaming.

Buy yourself something beautiful

If you can’t contribute financially, but still want to help out, I’d love it if you shared this post with your friends and networks and helped to spread the word. Thank you!

Carnations © Sarah Marie Lacy, 2010. Acrylic on canvas, 16"x20", framed.

On Monday, I was featured in an article in our local paper, the Guardian. (You can read it here.)

It talks about my journey from being very ill, to creating a life for myself that I love. It’s a great piece and the reporter, Mary MacKay, really captures my voice and my energy.

I’ve had some wonderful, positive feedback from it, but I’ve had a few people respond with an attitude I haven’t seen in a long, long time – pity.

“Oh you poor, poor girl. You’ve suffered for so long.”

Come again?

I know that this attitude comes from a place of well-meaning. They see my pain and they want it to be fixed. They only see the suffering, and maybe that’s what they can relate to, or maybe they have their own beliefs where you can’t possibly be “disabled” and happy.

I’m about to say something really blasphemous here…

Some days, I forget that I’m sick.

It’s not that I don’t have symptoms – I do. I can still get some pretty hefty pain. My energy levels can be wonky and unpredictable. I may need more naps than the average person.

It’s just that it’s no longer my focus. I don’t give it the time of day anymore. There’s no drama around it. I have an attitude of “Okay, this leg is in some serious pain. What helps? What can I do?” And then I do it. Sometimes that means going to sleep. Sometimes that means hot water bottles.

But I am no longer a victim.

And that’s what bothers me about pity.

Pity assumes that I am helpless. Pity only sees my suffering and magnifies it. Pity doesn’t empower me to create a fabulous life despite and alongside chronic illness.

It just assumes that suffering is the major focus of my day and that’s the end of it.

Pity misses the other 75% of my story.

I may have pain and I may have weakness, but my life is f***ing fabulous. I have done more than most 40 year olds. I live an intentional life.

I do what I love every day. I live exactly where I want. I get to make beautiful things, inspire people, and change the world. I am in a mutually adoring relationship with a guy who can make me laugh till I cry. I am supporting both myself and him (a student) with the money that I make.

Yes, that’s right. The disabled girl supports herself and another person. We split some costs (he contributes where he can) but I just make a lot more money than he does.

And let’s face it – I’m going to France for half a year to study what I love with some of the best artists in the world. I don’t need any pity.

There’s a line in the movie Frida, about the life of artist Frida Kahlo, where she says her only goal is to be a self-sufficient cripple. I first watched it about the time I started turning my life around and I clung to that like Rose clung to her floating door.

I wanted that. I wanted my independence and my freedom back. I’ve fought long and hard to get here, to be a “self-sufficient cripple”. To my own surprise, I’ve  moved past that – I’m a self-sufficient artist now. I’m an Independent Woman, she said tongue-somewhat-in-cheek.

So please, for the love of all things chocolate, don’t pity me.

And don’t pity anyone else either. Look for their strength, not their fragility. Look for where they shine and not where they fall down. Acknowledge their wins instead of focusing only on their losses.

It’s not about disregarding trauma or pretending that it isn’t happening or acting like the world is all rainbows and sunshine.

It is about respecting their wholeness as a human being. It’s about acknowledging their strength and courage in the face of pain, loss, abuse and grief.

It is about celebrating their strength and their willingness to carry on and then encouraging and supporting them in doing that.

Life is about just that - life. Focus on the life that is flowing through their veins, not just the loss. Focus on their power, not their pain. Respect them by seeing them in their entirety, not just in their smallness, but in their largeness. See the whole scope of their spirit and their life force, not just the places where they have shrunk from pain.

My principle at school was the first person to acknowledge me in my entirety when I first got sick. Everyone around me didn’t know how to react – they responded with fear, pity, and grief.

He looked me in the eye and said, “You are one courageous girl.”

In one sentence, he acknowledged both my pain and my strength. He acknowledged both my loss and my will to live.

It’s all any of us try to do. We try to live with the grace, dignity and courage that we all possess.

We’re all fighting the good fight. Don’t degrade it with pity.

I realized though that none of you knew me 5 years ago. You don’t truly get how f***ing awesome it is for me to be in this place.

And I wanted to share that with you. I want you to understand why this is totally blowing my mind.

Warnings, Caveats, etc.

This video is passionate and emotional. I almost cry at one point. I talk about depression and suicide. I talk about being very ill. If these things are upsetting or triggery for you, please do not watch it.

Also, the illnesses I had (and still have, but much more managed) are Chronic Fatigue Syndrome and Fibromyalgia – I forget that not everyone knows my medical history. I couldn’t get out of bed because I was sick, and so that was making me depressed, not the other way around, yes?

It’s a long video – over 7 minutes. (I know, I know, it’s only supposed to be max 2 minutes or whatever or no one will watch. So shoot me.)

I needed to say these things – I need you to understand that your dreams can come true. I need you to understand that hope is important and that you shouldn’t give up on yourself.

Why you should never, ever give up. from Sarah Lacy on Vimeo.

I am terrified nervous to share this video. It’s pretty raw. For that reason, comments are off. If you feel moved to share something, please feel free to email me, or DM me on Twitter.

If you’d like to help me get to France, please click the button below:

Me in the studio, with a nude in progress.

I am, occasionally, accused of working too much (usually by well-meaning friends).

It’s probably true. I work a lot. Longer than 8 hour days, by far. Probably closer to 10-12.

But it doesn’t usually feel like work to me. This is what I’d be doing for fun if I had a cubicle job. This is what I would choose to do over almost every other activity. I get really excited about art and business. I always have, ever since I realized that it was totally possible for me to do both those things.

But it goes deeper than that. It’s not just “this thing I do for fun.”

It is my passion, and my life line. More importantly, it’s how I remember who I am.

Most importantly - it’s mine.

Mine and y’all can’t have it.

I started my business because I felt like nothing belonged to me anymore. My body hardly did – it belonged to the doctors who poked and prodded at it. I was completely dependent on my parents for everything. I had no form of independence. My life wasn’t my life anymore. My life belonged to medication, naps, doctors’ offices and attempts to finish school.

But when I started my business, it had nothing to do with those things. My parents tried to give well meaning advice and wanted to help me run it. I think they were baffled by how protective I was of it. I didn’t want their help. I didn’t want anyone’s help. I wanted to make these decisions on my own. I wanted to do things by myself.

My business was my first taste of independence. As I breathed life into it, it breathed life back into me. It gave me something to think about, even if I was too sick to leave my bed for a month. It gave my life purpose, meaning.

It gave me hope.

Now it’s my safe place.

When life gets scary, or hard, or it hurts, I usually retreat to my business. I work harder, longer hours. Partially I do it to forget, but partially I do it to heal. My business reminds me that I have something bigger to work on than the day to day pettiness of life. It gives me perspective, helps me to step back by giving my mind something else to chew on apart from my own fears.

Sometimes I’m writing here, sometimes I’m planning new marketing tactics, sometimes I’m just painting, or photographing my work. Doesn’t matter. There is a calmness in working on my business that I don’t get from a lot of other things. It helps me to center, to remember myself amongst the chaos.

My business is my baby, as much my own creation as any of my paintings. Not everyone understands, but it’s mine.

Strawberries, © Sarah Marie Lacy, 2010. 5"x7" oil on canvas board.

I just kept finding that flow. I contribute a lot of that to the Dance of Shiva. It just gets my brain all wired up for creativity.

But the most important thing I did to go from 2 hours a week in the studio, to over 16 hours over 4 days?

Prioritized.

Sounds so obvious, so blase right? But it wasn’t like that. I didn’t do it the way those time management gurus tell you to, with their military sense of time and their punishing ways- oh the guilt and shame! So not my thing.

There was no list making, no “This is the most important, and this is second most important and blah blah blah.”

I made a decision. I said to myself, “What is important? What matters the most to me, out of everything that I need to do in a day?”

And of course, the answer came back, Art.

That was that. My day now revolves around my art. The very first thing I do in the morning is my art. It has priority. And when I’m finished with that, everything else can happen. But not before that. No emails will be checked, no dishes will be done, no websites will be designed.

First, I will paint. Everything else can sort itself out.

Not to mention, one of the brilliant side effects of this method is that I’m embarrassingly happy for the rest of the day. I skip, I sing at the top of my lungs, I dance around the house, I smile like an idiot.

I’m doing what I love. What more could I ask for?

And I’m making sure that I’m doing what I need to do to support my creativity – I do 15 minutes of Dance of Shiva (just started level 2!) and then 10-15 minutes of savasana meditation. Bam! I’m in flow. I’m on. My brain yells, Create! and I happily follow its command.

I’m still kind of playing with things. I mean, I didn’t blog all week and I don’t want to completely abandon the ways that I share my art, so I’m going to have to find a balance between my art and my marketing time as well as my jobs. It’s a work in progress. I’ll have to experiment and see what works best for me.

In the meantime, you can enjoy this interview with me over at Magpie Girl, with the wonderful Rachelle Mee-Chapman in her Chronically Creative series.

Also, some of the pieces that I’ve been working on:

Nude work in progress, © Sarah Marie Lacy, 2010. 12"x16" oil on canvas.

Strawberries, work in progress. © Sarah Marie Lacy 2010. 5"x7" oil on canvas board.

Self Portrait work in progress, © Sarah Marie Lacy. 12"x16" oil on canvas.

The White House, © Sarah Marie Lacy. 16"x20" oil on canvas, SOLD.

It was like I imploded. Something inside collapsed, and all I could feel was sad, discouraged, listless.

Sometimes I forget that I even have CFS. I’m so used to it, that it no longer really factors into my daily life. It’s just a part of it, like having two legs or blue eyes. I know what I can, and can’t do. Sometimes I need naps, sometimes I’m in a lot of pain. But that’s just part of “being Sarah”.

I forget that to (some) others, I have this mysterious chronic illness. I have a “disability.” And they express their concerns over whether it’s very sensible for me to do A or B, because of this disability. I forget that, because they know nothing else about me, the only thing they can see is my limitations.

But they don’t know me, or what I’ve done, or what I’m capable of. I know those things, but when I’m presented with this other point of view, it’s like I forget all of that.

Suddenly my thoughts start running like this:

“Oh yeah, I am sick. Maybe they’re right. Maybe I can’t handle this situation. I probably shouldn’t even be trying to do X. Who do I think I am anyways? I mean, I’m just the sick girl. I should probably just go home and do some finger painting. It’s not like I’m ever going to amount to anything.”

And then I start to give up hope. I implode. I feel like all they, or anyone can see, is that I’m the sick girl.

It was my self definition for so long. “Hi, I’m Sarah and I have CFS.” You spend long enough traipsing around from hospital to hospital, doctor to doctor, soon it’s all you see because it’s all you ever talk about.

Go to the doctor’s, talk about the CFS.

Go to school, figure out how to deal with the CFS with your teachers.

Go home, figure out how to do homework while dealing with the CFS.

On the weekends, explain to your friends that you can’t go out with them because of the CFS.

Rinse and repeat. For 5 years.

I completely forgot who I was underneath all of that. I lost myself completely.

Then I found art

I still knew that I loved art. Art still made sense. So I decided to pursue it. Slowly, I regained my sense of self as a human being and not a disease. I haven’t looked back since.

It’s been over 3 years since I’ve had to explain my illness to someone else, since I’ve had to negotiate around the CFS. Sure, I talk about it all the time on here, and in my bio – I’m certainly open about it. But it no longer has power over me. I’m the one in control. I’m the one who says, “Yes, I can do this.”

Being in a situation where I wasn’t in control, where I was waiting for someone else’s permission – it threw me off. It made all of those feelings of inadequacy come rushing back. To the other person, it was just a decision.

For me, it was like waiting for a death sentence. It was like waiting for permission to be myself again, and not just “that girl with the weird chronic fatigue illness thingy.”

I so desperately did not want to be her again. I didn’t want to be defined by that. I wanted to be seen clearly, for all of the awesome that I bring to the table, and not the one thing that I have no control over.

Fortunately for me, I have people around to remind me of who I am, but who also understand how hard it is for me when I forget. How discouraged and lost I feel. How afraid I am to go back to that place where I’m a shadow of myself.

But I’ve got so much more power now.

Back then, I was pretty helpless. I didn’t have a lot of control over how my life was run.

Things are different now. I’m the one in control, and no one can take that away from me. Others may decide to define me by what I am and am not physically capable of, but I don’t have to do the same thing. I have a choice. I can choose to let that define me, or I can choose to remember that I have so many other skills, so many other wonderful things to bring to the table.

I can choose to see myself as a burden, or see myself as an asset. I never have to feel like that girl again.

I’ve found myself.

I pottered around for a few hours, did some web design work and then wandered into the living room to look out the bay window, see if anything interesting was happening.

That’s when I noticed them.

The wild rose bushes had finally bloomed.

They are, unexpectedly, bright Peptobismal pink. They’d looked a deep fuchsia when they were still small, tightly wrapped buds. I had to paint them.

Our garden is a little on the wild side. We can’t even identify some of the plants – and I’m not useless at flower identification. There’s a huge magnolia bush, and 2 wild roses, some bright purple tiger lilies, forget me nots, buttercups, queen anne’s lace and some crazy tall purple things that look kind of like hydrangeas but grow really tall, not in a bush form. Then there’s the straggly purple flower that looks like it’s been shredded – we thought it was a weed, but someone down the street with a very well tended garden has a lovely bed of them, so clearly it’s not. I’m baffled. *

*So Google helped me a little bit – tall hydrangea thingy? I think it’s a fireweed.

But I digress. Basically, the garden is wild and that’s exactly the way I like it. And after yesterday’s misery (lots of pain, lots of foggy, lots of exhaustion), sitting outside in the sun and painting the roses was exactly what I needed.

Wild Roses © Sarah Marie Lacy, 2010. 8"x10" oil on canvas board

This is actually the first plein air painting I’ve ever done. It’s not brilliant, by any means. But it was an experiment and it was relaxing and fun. It was what I needed. It reminded me that even when I feel like I’ve been mowed down by a truck, I’ve still got my art. It heals me, even if I’m reluctant to let it.

I still feel sick now and I think I’m going to go lay down for an hour or two, but you know what? When I was painting I forgot about the hurt, I forgot about the tired, and I forgot about the crap. I just lost myself in the loveliness of a sunny morning, painting roses. Those two hours of hope is all I need to keep me going.