Wednesday, May 20, 2015


I am strong, some days. I am weak most days. I am fragile everyday. 

A friend recently told me she couldn’t live the way I live. She just couldn’t do it. She insisted she isn’t strong like me and continued to repeat, I am just not like you. I can’t even imagine how I would survive.

Here’s the thing. When I was ten and making lists of baby names and husband names and dog names and places I wanted to live and jobs I wanted to have, I assure you, I did not include a lists of wheelchairs I would like to use. I did not include a list of ways to be so ill you’re life is a blur for an entire decade. Or lists of surgeries and IV antibiotics I would like to try. Nope. Not even on my radar. 

And then it happened. I woke up in a hospital bed, paralyzed from the waist down, and then I spent the next fifteen years learning how to cope with my new body. I still learn. It’s not an education that ends with a diploma. And this coping and caring doesn’t stop at five o’clock each day and on weekends. My body is always with me, always begging for my attention, and always paralyzed. 

I learned to be strong when I need to be strong. And even then, that so-called strength, is full of fear and full of tears. I used to be ashamed of the tears and try to portray a stoic confidence. But the thing is, pretending to be confident, that really isn’t confidence. The definition of confidence is the feeling or belief that one can rely on someone or something. This feeling or belief part of the definition is the true essence of confidence. Before I could show up and look strong, I had to feel and believe I was strong. I learned my confidence doesn't simply rely on the outcome of whatever bad or good thing happened; it has to come from me. It is a muscle I learn to build.

Most days, I doubt if I can live this way. Most days, my strength muscles are so sore, I end up in a puddle of tears.And, then there’s that day. That day when I bust through the can’ts, cross items off my list, and think, hey I can do this whole paralyzed thing. And, then, something happens to shake this momentary burst of enthusiasm. But, enthusiasm only shakes and cracks. I am still worthy...even with the doubt and the broken pieces that are fused together to make me whole again. This broken mess is still worthy. 

This is why I don’t give up, even when I want to. It isn’t because I am strong or mature or some super person. It is because I feel and believe I am worthy to live a good and full life. Even just writing that sentence reduces me to tears. It took my a very long time to realize my worthiness comes from within. It took me an even longer time to feel and believe I was worthy. And it still takes time to learn this worthiness comes with tears and doubt and fear. And that’s okay. Strength and fragility aren’t mutually exclusive. They go together. 

I am not cut out for this life anymore than anyone is cut out for this life. I choose to keep going and living. That’s it. I make the choice and work to move in the direction I choose. If something throws me off course. I might sit and mourn the other route for a minute, but I always get back up and try again. I do this because I learned no one is born with the confidence to overcome every hardship that happens. I do this because I learned I am worthy, just like you are worthy. None of us is stronger than the other. We are all worthy of a good and full life. We just have to believe it and feel it. 

Thursday, May 14, 2015

A List of Do's

For some odd reason, I see a lot of lists pop up with titles like, Top Ten Things Not to Say or Do to a Person in a Wheelchair and Ten Ways Not to Act Around a Person in a Wheelchair. I don't really mine the lists so much and some of the items on the lists are funny. Although, they are really only funny if you are in a wheelchair and understand the humor and perspective. While the lists are fine and harmless, I think they only further separation. Imagine if you handed out a list of ten things someone shouldn't say to you or do around you. I am not sure that's very warm and inclusive. 

In my bit of a rant about the lists, I composed my own list. With the emphasis on the two words my and own. I do not speak for anyone else in a wheelchair or any other person. This is a list of the way I feel and the conclusions I drew from my experiences. We all have our own perceptions and experiences. 

A List of Do's instead of Don'ts When Interacting with a Girl in a Wheelchair,  Named Sarah.
  1. Do understand I am not trying to be like you. I am like you. We may put our pants on differently, but we both wear them. I adjust, everyday, to life’s ever changing flow. I adjust when I learn to live with my pain, even though my physical brokenness happens to be quite obvious and maddening. Just because I can’t readily see your scars doesn’t mean they aren’t there. Just like you, I am trying to overcome and find the beauty in a world that makes me cry as much as it makes me laugh. I feel joy and sorrow and concern and hope. I am just like you, only sitting down.
  2. Do have patience with me. I am perpetually late. I spend quite a bit of time taking care of this body and learning to accept its unpredictability. Over the last several years I learned the importance of patience and learning to practice patience. I need patience to deal with my own life and my own body and their constant disruptions and needs. Once simple tasks now take substantially more time. Getting dressed is much more difficult and requires focus and a bit of strength. This need to cultivate and practice patience opened my eyes up to everyone around me and how much patience I must give, as well. We are all doing our best. We are all trying our best. 
  3. Do offer help. To offer assistance is an example of kindness. I would never discourage kindness. But, just as much as I respect your intention to be helpful, please respect my answer to your offer. After fifteen years, I did finally learn the fine art of help. I need it sometimes. And, sometimes, I will have even have to ask for it. It’s not often that I need help, though. Mostly, I need assistance to reach items from high shelves and change light bulbs. Your offer to help only makes it easier to ask. If you do ask me, just trust my answer. 
  4. Do ask me for help and let me help you if you need or want the help. Yes, my life can be hectic and a ridiculous amount of work sometimes. This truth doesn’t change that, like you, I choose to be aware and offer a hand when I see a person who needs my hand. And like you, I want to help when I am able. A mom at the river trail was struggling with her jacket. The sleeves were entangled in the straps of her baby carrier. Her sleeping newborn, finally asleep after many loops around the park, was her priority. She, carefully and slowly, tried to untwist her jacket sleeves. I approached her and offered my help. She looked up at me, still delicately unwinding her jacket and said, “Ugh, I don’t know. Wait. Just wait a second. I might. I’m just not sure yet.” I sat with her and waited. She freed her jacket and said, “Thank you.I think it was great to have you around just in case I needed the help, thank you.” Just as I might not need your help sometimes, you may not need mine. I think it is far easier and better to offer the help. We all need a bit of help now and again. Even if we just sit with a person. 
  5. Do ask questions. I don’t mind questions born from curiosity. Understanding is crucial to a better, more peaceful, and inclusive world. If I am uncomfortable with a question, I usually just don’t answer. And if the question seems a bit strange to ask a stranger, then probably don’t ask the question. I welcome thoughtful questions and I do my best to give a thoughtful answer. I am not an expert. Just an expert on my own life. I feel the more I open up about my own loss and pain and sudden life change, the space of mutual understanding only grows larger. And when we contribute to the growth of this shared space, we begin to heal each other’s wounds. Physical and mental injuries, alike. 
  6. Do understand my SCI is an injury. I didn’t choose this way of life. It just happened. I had plans. I had travel plans and life plans. I danced a lot and never sat still. One evening, my plans were interrupted. And even though I struggled immensely, I began to notice the sudden change to my outside world didn’t have to affect my inside world. The world where the dreams live. I could still live from the place I did before my injury. The place that knows what she really wants. Only now, this injury forces me to be still and this stillness provides a clarity I didn’t know existed. I may look a bit different to you and appear to live my life a bit differently, but, I assure you, I am simply a person learning to adjust to the sureness of change. Just like you.
  7. Do assume I work very hard. In order to live a good life, I must stay very mentally and physically fit. This takes discipline and a great deal of effort. My life is a constant balancing act, just like yours. You may not understand the work I do and that is okay. I work to contribute in any way I can and I try to live a purposeful life. Just because half of my body doesn’t function anymore doesn’t mean I decided to stop functioning. I work that much harder to start on an even starting line, but I am okay with it. I am willing to show up. But it took work to get here. And it still takes work.
  8. Do say you think I am an inspiration if you happen to think that I am an inspiration. My guess is the reason please don’t call me an inspiration shows up so frequently on the other lists is because it’s sometimes difficult to be called an inspiration for simply living life. I understand this perception. However, when I really think about what inspires me most, it is the regular, just living life stuff. The way we all make it through the day’s unpredictability and life’s uncertainty. The we all carry heavy burdens and, despite these weights, continue to move forward and wake up each day. When I look in the mirror I don’t see an inspiration, but I bet you don’t see one either. We can’t decide what inspires some and what inspires others. Life is about inspiration. We are supposed to breathe in and fuel others. 
  9. Do know I am aware of my wheelchair and different abilities. I know what it is like to live an able-bodied life. My life is completely altered. Before my injury, I knew very little about Spinal Cord Injuries. Now I know what it is like to be me in a wheelchair. Not anyone else. Only me. The days can be long and hard and, also, full of life. My life isn’t over, just a bit different. My fragility is now my strength. This fragility leads me to new and better perceptions of the wonder that lives all around me. But, this awareness of what once was, never goes away. It’s a grief that’s simply absorbed. I learn to balance the grief and the hope, just like you.
  10. And finally, do assume I dream and love and hurt and hope just like you. Though they may have been for a bit, my dreams are no longer paralyzed. I don’t allow life to only exist in my pain. I regularly seek the good and look to see it others. The only thing that is different about me is the outside. That is it. My insides are just like yours. If anything, I have learned that what our physical eyes can see is nothing compared to what our soul eyes can see. We should all look at each other with these eyes, the soul’s eyes.
"We are all alike, on the inside."
-Mark Twain

Monday, May 11, 2015

Thank God for Dirty Dishes

Dirty dishes are the worst part of cooking. Their ability to quickly multiply, taking over the sink, is daunting. I, also, insist on keeping the dishes moving through the sink and the dishwasher. I fear stacks of dirty plates and food covered bowls, I religiously keep up with them to avoid a pile up at the end of the day. And when I am feeling extra dramatic about effort it takes to clean them, I decide either a cucumber with hummus or popcorn will serve as the perfect dinner. I regularly complained about the dishes, until last night. 

A Course in Miracles, defines a miracle, partly, as a shift in perception. The miracle occurs internally; it is something that happens inside of us. This idea is layered and takes me endless amounts of reading and time to begin to comprehend. Somedays I feel like I understand and other days I don’t have a clue. 

Yesterday, a friend shared a few pictures of her Mother’s Day moments. One of these pictures was a sink full to the brim with dirty dishes. She posted a message, along with her pictures. Her message lovingly described the meal her family planned and prepared in her honor and then she ended her message with a quote. And, honestly, her simple quote and sink full of dishes affected me in a huge way.

I work on gratitude, as well as my perception. And I really work to find the lotus moments that grow in the mud. The kind of moment when I am almost blind to that small flower of gratitude. I can conjure up a decent gratitude list most of the time. And, although, I am surprised by some of the little things that end up on my list, I am sure dishes have never made an appearance. But, I made a commitment to cultivate a shift in perception and more gratitude, so I shouldn’t make exceptions. Even when it comes to the dishes.

“Thank God for dirty dishes. They have a tale to tell. 
While others may go hungry. We’re eating very well.”

I assumed food was an easy place to discover the joy of gratitude and a shift in perception. I just noticed the rainbow of color that fills my refrigerator. What I failed to see is the dirty dishes are connected with the healthy food. You can’t have one without the other. Their crusty sides and black bottoms are the leftovers of conversation and connection, of health and wellness, of sharing and love. They are the mud needed to grow the lotus. Dirty dishes might be a silly and very small teacher, but their dirt and my friend’s beautiful sentiment, taught me to shift my perception, in the right direction, just that much more.

Dirty dishes in the sink. They are messy beautiful.