Today I was spending some time in the backyard with my niece. She was in the pool, and I was soaking up the sun in my wheelchair, about two feet away from the pool’s edge. It was a beautiful, sunny day and we were laughing and having fun, like we always do together. I was counting how many seconds she could hold an underwater handstand, she’d come up for air and then go back under, trying to beat her record time of 19 seconds. After several minutes of this, she started swimming towards the edge where I was sitting. She popped her head up and looked at me with her beautiful brown eyes, but they were full of sadness.

“What’s wrong?” I asked, “Are you hurt?”

“Auntie, I don’t want you to leave.”

Her voice was meek and I could tell she was holding back tears. I was caught off guard by her sudden sadness. I had no plans to go anywhere; I didn’t know what she was talking about.

“Baby, I’m not going anywhere.” I assured her.

“If the lady says you can’t live here, she will take you away.” She responded, tears in her eyes.

Cold, harsh reality slapped me across the face as I realized what she was talking about. My caseworker from the state was coming that afternoon to check my living situation. We had spent the morning making sure the house was spic and span, and explaining to my niece that it needed stay clean until this lady left. I don’t know how she came to the understanding that this lady could remove me from the home if that’s what she thought was best, but my niece is a smart cookie, and she wasn’t wrong.

“Oh, baby, she’s not going to take me away. She is just checking out the house, they only take people if they aren’t safe or if they aren’t cared for but your mommy always makes sure I’m safe and I’m cared for. So I’m not going anywhere, and I don’t want you to worry or be sad because there’s nothing to worry about. We were having so much fun, let’s keep having fun!”

With that, I got a smile as she dove back into an underwater handstand. I smiled back and started counting out loud.

 

The caseworker came and left, and everything was fine. But I still can’t shake the feelings that were stirred up by the conversation with my nice. To be honest, that worry and uncertainty that she was feeling, those same feelings have been eating at me a lot lately. Every time my brain has the freedom to wander, I end up at this spot where I feel anxious, uncertain and worried about my future. I can see where I want to be, but that place is just out of reach; it’s like a mirage.

 

I hate complaining because I am fully aware that I am blessed. But, like I said, I can’t shake these feelings and I feel compelled to share them (maybe it’s part of His plan?), so please, bare with me.

 

 

As a disabled person, I have never felt so discouraged, so helpless, so insignificant. This isn’t me hating on myself, I know I have a lot of talents and skills  to offer, given the opportunity. The problem is that opportunities for people with disabilities are few and far between. We are not just limited by what we can physically (or cognitively) accomplish, but society often limits us by not seeing us for who we are or accepting us as valued citizens with a lot to contribute to the world.

 

I wasn’t born into wealth, my parents scraped by, using all their resources to provide for their kids. So here I am, in a position where I depend on government programs to live. It is scary to depend on this entity when I feel like the decision makers of this country don’t see any value in me; I am just an expense, a line on the budget that needs to be cut. I can’t even watch the news anymore. Hearing the proposed cuts to Medicaid and Social Security sends me into a panic. How can these people even consider cutting back or eliminating programs that people’s lives and livelihood depend on? But it happens, and it’s been happening.

 

The overwhelmingly cynical thought is killing me on the inside, that at the end of the day, money is more important than human life. I cannot live without the programs that provide me with a monthly allowance for rent, food, gas, and bills; with nurses and care givers to take care of all my physical and medical needs; with medical supplies like wheelchairs, feeding pumps, and breathing machines. The people in charge of these programs dictate the quality (and quantity) of life for me and countless others living in similar circumstances. It scares me to no end. These feelings creep up and they consume me, it seems impossible to extinguish them.

 

All I can do is remind myself that I’m not in charge, and that’s okay. I get comfort from knowing that God made everything beautiful and perfect in His sight. He has a reason for giving me this life and this body. He has a plan for everything and everyone, and with Him beside me I will get through anything that happens. With all the uncertainties frequent anxiety, I can live with joy because of His love and grace.

When I was six years old, I wanted nothing more in life than to climb a tree. I know it seems ridiculous, but I guess I was a simple child, because it’s really all I wanted. The kids in my neighborhood were always climbing trees and hanging and swinging on them. I would sit at the base of the tree, looking up at them, the blue sky and the sun bursting through the leaves behind their heads. I was sure that if I could climb to the top of a tall tree, I would be able to see the whole world from my perfect spot. The thought of that filled me with wonder.

 

 

Even as an adult, I look at trees with the same sort of amazement that I did back then. They tell their own story – it might be happy or sad or scary – but it is always a story about life. They tell a story of standing tall for years, weathering storms, steady and brave; and of embedding their roots deep into their home, providing shelter, and comfort to their community. At least that’s the story they tell me, and that’s why I paint them – to tell their story.

With a blank canvas in front of me, the world is my oyster. I sit and ponder the possibilities, with music blaring into my eardrums, and then an idea strikes! I grab my small script liner brush and some gray Liquitex paint and start putting down a rough outline of my vision.

To paint the sky, I use a 3:1 mixture of white and light blue paint with a medium sized flat brush. While the paint is still wet, I blend in streaks of white here and there to give a realistic depth. I paint the sky upside-down so I can reach it better.

After painting the blue sky, I decided to change it to a colorful sunset sky. I find that my vision changes its mind a lot as my painting develops, and I let these new ideas guide and shape my art as I go.

 

 

For the sunset, I start by mixing white and yellow to give me a sort of pastel yellow, that I put around the mountain peak farthest to the right because I imagine the sun is hiding behind that mountain. I add some pure yellow (no white added) in some areas for depth. Then I repeat the process with orange above the yellow and then magenta off to the left.

Next come the mountains – purple and pink to really accentuate their beauty, with a natural gray undertone, as well as some dark blue in the cool shadowy areas. Keeping in mind that the sunlight is coming from the right, I made the left side of each peak darker and right side really bright as if they are reflecting sunlight.

Having some texture in specific areas on the canvas can really really bring a painting to life, so I add heavy brushstrokes to the trunk of the tree to define the bark, the branches, and the roots.

After the thick paint dries – which can take some time, I call it my Pinterest time – I can fill in the background without worry because I can see the raised outline of the tree beneath the new layer of paint.

Once everything is filled in, I add in the leaves and the shadows. Staying consistent with the idea that the sunlight is coming from the right side, the left side of each object is darker, and the shadow is cast to the left of the tree.

You can see that I, once again, changed my mind on a few things in the final picture. I couldn’t deal with the rows of flowers, so I just made a field of flowers. I also added colored leaves to the tree. Then, finally, after 23 days of work, I sign my name to complete the painting. And it felt so good!

Ecclesiastes 3:11

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This week I’ve been reading 1 Corinthians and, in the spirit of Christmas, I’ve been thinking a lot about giving and receiving, and the importance of each. This one verse really stuck out to me:

1 Corinthians 4:7, “For who makes you differ from another? And what do you have that you did not receive? Now if you did receive it, why do you boast as if you had not received it?”

I will tell you what this verse means to me, but first, let me tell you a little bit of my background, so you might better understand my perspective.

I come from a family of six, I have two older sisters and a younger brother. We struggled a lot financially, as my mom stayed home to take care of my brother and me (who both have SMA, and were always sick) and my dad had a hard time holding on to a job. For a short period, the six of us lived together in a tiny little trailer in Escondido, CA. We didn’t have it as bad as other people, but we definitely went through some tough times. Through all of it though, I never felt poor – I never felt the struggle. My needs were always met and I always felt blessed with love.

Back then, and still to this day, I received so much. On a daily basis, I get by on receiving help from others who are kind enough and patient enough to assist me. I am fully (sometimes painfully) aware of the fact that everything I have, everything I am, is because I received it – from family, from friends, from doctors, from teachers, from insurance companies, from the government, from God.

In contemplating this verse, I thought “What does anyone have that they did not receive?” We are all given so much in this beautiful life and many times, I think, we fail to recognize all of our blessings. I think we fail to recognize that our blessings don’t come from ourselves. Every day that we wake up breathing is a gift – not a guarantee. Having a job is a gift that allows you to earn the money to buy the things you need and want – not everyone has that, if you do, you are blessed!

We are accustomed to the luxuries that surround us and they are often taken for granted. We are obsessed with stuff – getting as much as we can in any given situation, and feeling so proud of our accumulation of things.

To me, this verse simply means that all we have – whether material objects, intellectual ability, or spiritual gifts – it was given to us. Nothing we have makes us better than anyone else, for we are all given different gifts for different reasons.

This Christmas, I urge you to take a break from all the consumerism, to think about all you’ve been blessed with, to take the time to truly appreciate your life as it is right now, and give to someone in need.

I love to draw, paint, design — pretty much anything artistic. It makes me feel happy and accomplished to create something that didn’t exist before I imagined it. I like to paint things in a way that is familiar and recognizable, but at the same time I like to show things in a whole new light, using bright colors to emphasize the beauty in this world, and to give the viewer a sense of joy.

With a paintbrush in my hand, and good music filling the spaces around me, I feel completely at peace as I lightly and methodically place brushstroke after brushstroke on the canvas. Nothing else matters, I am completely focused, completely capable.

For awhile, I lost the inspiration to paint. It’s not that I couldn’t do it, I just stopped doing it. I stopped getting that feeling of peace, I no longer felt content. Painting made me feel crippled, it made me feel angry, it made me feel sad.

SMA is cruel that way. The way it takes everything away from you. I stopped painting because my right arm – the one that I still have some use of – started getting weaker. I couldn’t hold it out to reach my easel in the same way that I used to. My hand would get shaky and my arm would flop down out of exhaustion and remain unusable for several minutes.

I would sit with my arm hanging down, not quite ready to ask for help, just thinking. In my frustration, I thought how ridiculous it was that I couldn’t do something as simple as reach my arm out. I thought about what it would be like when I can no longer move at all, when I can no longer breathe on my own. I thought about how and when I would die. I thought about the things I will never experience – love, marriage, building a family of my own. I allowed myself to cry for just a minute.

 

For awhile, SMA won. I let it hold on to a piece of me for way too long before I realized that my whole life has been a series of losses and adaptations. I got through all that happened before and I would get through this. I am stronger than SMA.

The painting above is the first one that I did after my period of adaptation. It took forever, and it was a lot of work! For me, this is a personal best. At 11×14″ it’s much smaller than what I used to do. The smaller size allowed me to work on my lap without having to reach so much. I still used my bright Liquitex colors, but the smaller canvas and smaller brushes allowed me to do so much more detail work.

This painting means so much to me. This ballerina is very much a part of me – or who I wish I was. It is a stormy day, but still so bright and full of beauty. The ballerina is out there, dancing in the wet sand because it is her place of peace. She is not using the umbrella because she is not afraid to get wet, she embraces life as is comes, experiencing all of it.

One day I will be this ballerina.

 

Philippians 4:13.

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