Wednesday, May 20, 2015

Confidence

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 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.

Thursday, March 26, 2015

Hey Blondie

Sometimes, I worry I lost the old part of me. The part before all of the brush with death and illness stuff. The part who, forgetfully, loses her wallet or leaves her coat behind at a restaurant or forgets all of the group’s tickets to a show. After many scars and an early dose of life experience, I, sometimes, find pride in the awareness and mindfulness these scars have cultivated. And, sometimes, I loathe these scars. 

When I lose something or pay for a movie when it is clearly offered, for free, on Netflix streaming, my dad is notorious to offer his conditioned response, Hey Blondie. This phrase is as old as I am in years. Many people question the color of my hair, and my dad is happy to assure every skeptic, that every inch of my hair is the color with which I was born. There is no question in his mind. Whether due to my age or my forced maturity, his use of this phrase diminishes over time. I don’t find it an insult either way, but, I must admit, when I do hear it, I know we are back to normal. I know emotions left over from accidents and pain and huge life changes are on the back burner for a bit. I know this because when he says, Hey Blondie, he’s only seeing me, his little girl that used to forget everything and lose the most important papers and fail to understand the simplest of instructions. That part of me that could care less about the real stuff and just wanted to play in her Barbie Dream House.

Yesterday, after a better than normal doctor visit, I wheeled to my car and plopped my bag on the seat of the car, and took Belle for a walk. She, now, comes with me to the doctor and loves every minute of the visit. The sun was shining and the sky was so blue, I thought it would be nice to go for a quick walk around the parking lot and building. After our quick walk, we returned to the car and headed home. As I was gathering my phone, keys, and wallet before we headed into the house, I realized my wallet was missing. I searched the inside of the car, the glove compartment, and my big bag. I searched several times, hoping the wallet would suddenly appear. Then, I decided, the wallet was taken when we were on our two minute walk. I failed to realize, in the moment, the doors were locked, my phone,  and my bag were still left. In my mind, the wallet was gone. I called my doctor’s office to see if it fell on the floor, no luck. A sweet nurse even walked the parking lot to see if it was anywhere to be found, no luck. So, I called the bank and cancelled my credit card. I called the police to place a police report because my license was gone. And then I called the insurance adjuster because the kind police officer told me to file a claim for the cost of the wallet. I was devastated. Mostly, because I now had to apply for a new driver’s license and replace the wallet I’ve had for a decade. It might be faded and worn and have threads coming out, but I love it so very much for all of these reasons. The wallet tells a story and is soft from so much wear and tear. I, reluctantly, packed up my phone and keys, grabbed Belle’s leash and we headed in the house.

And, then, I passed my trunk. I felt this huge rush. I opened my trunk. And there was my wallet. My wallet, just sitting there, waiting for me to find it. The very wallet I locked in the trunk to prevent theft. Hey Blondie, was all I heard. I called the bank, the cop, and the insurance adjuster. Each of them responded with laughter and an abundance of kindness. Without question the bank reversed the block on my card, the officer stopped the cancellation of my license, and the adjuster refrained from filing my wallet claim. Then, I called my doctor’s office. And the nurse who answered the phone, after hearing the story, said, “At least we know your hair color is real!”

You know, I don’t mind a good blond joke. I especially don’t mind it when it reminds me of who I was and who I still am. Even though I am covered in scars, I can still make the mistakes I did before all of the pain. I can still laugh when I find out what was lost is found. 

The end of a relationship changes us and makes us feel lost. Death and near death experiences make us feel like we are just wandering through life without a purpose and don’t recognize the person looking back at us anymore. Addiction and pain make us feel like we are scarred and damaged for life and all innocence is gone. But, every once in a while, we are reminded, we are still there. We may be changed and bruised a bit, but that person who played in her dream house, is still alive. She might not be out front and visible, but a good look in the trunk and we will find her. 


Friday, March 20, 2015

Spring


When I'm stuck with a day that's grey and lonely
I just stick up my chin and grin and say, oh

The sun will come out tomorrow
So you gotta hang on
'til tomorrow, come what may!
Annie.


Tomorrow’s forecast calls for high sixties and abundant sunshine. Today, the first day of spring, is grey and cold. Spring reminds us tomorrows are available every second of every day. She proves forgiveness and resurrection and new beginnings, can and will, live right along side the remainders of a long and dark winter. Our task is to look for the new life forcing its way out of the mud. It is up to us to learn to forgive and begin again. We must do this for others and, most importantly, for ourselves. Spring is a state of mind and she is always there, waiting to sprout her beautiful and hope filled buds.



Monday, March 16, 2015

Sleep is Not Easy for Me

Sleep used to be a given. I neither struggled to fall asleep, nor did I struggle to stay asleep. Sleep was like eating and seamlessly mingled together with the other, natural, pieces of my day. And then the fevers grew higher and hotter and when they finally broke I was left in a pool of sweat. The vomiting became so frequent, I feared choking in my sleep. The illness, the trauma, the anxiety, and the depression fought sleep and won in the end. This, previously, natural rhythm of my life just stopped. I failed to sleep for three solid years. I, valiantly, attempted to fall asleep, desperately trying to form good habits. I turned out the lights at the same time every night. I used breathing techniques and mediation tapes, drank teas, and swallowed melatonin. Nothing worked. Sleep was gone and I couldn’t get it back. 

Those years, without any sleep, were so rough they left lasting scars. One of the scars is the extreme anxiety that comes when I toss and turn for any amount of time. I replay those former days filled with agitation and a relentless need and want to just fall asleep. I barely functioned, certainly didn’t heal, and was teetering on the edge of survival. I was in a bucket without a bottom and one day I just couldn’t tread water any longer. Finally, with red, swollen, blood-shot eyes, and a body so frail and weak it could shatter into pieces with a single fall, I asked my doctor for help. 

I think sleep deprivation is one of the hardest struggles to admit. Sleep seems so simple. I am tired, so I sleep. And when this so-called easy, last moment of the day doesn’t come, it feels like a big, fat failure. And on top of the failure, it is painful and affects the entire body and mind. The shame that accompanies it is almost too unbearable to admit. The usual components and causes of sleep deprivation are depression and anxiety. Words that carry so much weight and are so stigmatized, we run from them at all costs. Some choose to believe these ailments don’t exist. Some choose to believe they are conditions of our mind and our own making. And some choose to believe they are modern, first world problems. The trouble with each of these theories is they further exacerbate the stigma and alienation and shame of sleep deprivation and depression. 

I speak from experience. These feelings are not a choice. For three years, I yelled, negotiated, and bargained with my head, urging it to just get it together and sleep. Positive thoughts were lost on my tired brain and heart and the more desperate and tired I became, the less I functioned. 

Judgement is cruel. It makes us feel like we are doing something wrong and contributing negatively to our own lives. When in reality, most of us, are doing the best we can. I don’t deny there are a number of factors that are instrumental when it comes to the complex world of depression, anxiety, and sleep disorders. Just as there are a slew of different causes, there are also a slew of different treatments. Judging how we treat these painful feelings is what makes it so hard to walk into the doctor’s office and ask for help.

When I finally gained the courage and found the brave vulnerability to share my feelings and express I knew I didn’t feel quite right, I was met with compassion and understanding. I assure you, very few doctors judge such courage. In fact, they applaud it. And if one doctor does judge this brave act of admission as a personal failure or downfall, then move on to the next doctor. A doctor’s job is to do no harm and to only help and heal. Right away, my doctor prescribed me a sleeping pill that is used to treat deep physiological depression. It was a tough pill to swallow. As it made its way down my throat, I knew I was admitting a weakness, but, at the same time, I knew taking this pill and asking for help wasn’t weak, it was very, very brave. 

Last night, I didn’t sleep the entire night. I still carry a bit of trauma from these years of sleepless nights. I suffered the consequences of lying wide awake even though I was desperate for sleep, all day today. I was grouchy and irritable and tired. I still get a little bit scared that I still suffer from these deeply depressed wounds and can be a bit hard on myself. But, then I remember, my awareness and my admission are two effective tools to help heal these wounds. I try to breathe and remember, I found the bottom of the bucket and am no longer treading water. Sometimes, I fall a little bit too deep into the bucket’s swirling waters, but I know, now, how to climb out. I know it’s okay to ask for help. I know I am not weak. I know I am just dealing with feelings that can crush and end lives. And instead of allowing these feelings to hide behind a curtain, I choose to reveal them and pull away that curtain. 

Today, as hard as it was, showed me I am not longer afraid. I may not sleep one night and that can feel scary and worrisome, but I also know, I know how to ask, I know how to treat the lack of sleep, I know I will be okay, and, most importantly, I know all will be well. Days like today, remind me of how terrified I was of my own darkness and inadequacies. But in the end, I didn’t need to feel shame, nor did I need to feel inadequate. I tread the water, I found the bottom of the bucket, and I climbed out. It isn’t easy work, but its brave work and we all have a little bit of brave living behind the curtain.


The Hill and The Singing Hens

A few of my practice entries...

The Hill

There are only a few really difficult hills at the river where I walk Belle. One of these hills, the most treacherous, is avoidable. Most days, instead of choosing the alternate path, I accept its challenge. I like to live through and tackle the hard stuff and this hill is no exception. During this kind of hill climb, I feel each push of my chair, the burn rushing through my arms, and the jaws of defeat clenching tighter and tighter. And just as my shoulders feel disconnected from my body, I turn my wheels one last time, using any power I have left, and I am over the top and, once again, on flat land. The toughness eases over time, but that last push is always the hardest. 

I don’t really think about much as I push up this hill, other than keep going, almost there, and I wish Belle would stop pulling to the side to sniff. But, today was a bit different. I think the cold air helped drive my pace up the hill and as I pushed my last push, looked back in disbelief that I was finished with my climb so soon, I had a visual memory of a warm day last spring.

My friend, Austin, was with me on this day when a t-shirt was enough and sunglasses were mandatory. The first big hill we climbed, Austin was behind me and I checked to make sure he wasn’t pushing me with a bossy, “Hey, don’t push me.” And he responded, “I am not touching you!”

We finished the rest of the walk and towards the end we came to the hill. The really big hill. As we were about two thirds of the way up, Austin said, “This hill is tough. I really want to push you now.”  And before I could utter the beginning of no, don’t, he continued, “But I get it. I wouldn’t want anyone to push me either.”

Austin is tall and extremely athletic. I am not so tall and not very athletic. Austin is able-bodied and I use a wheelchair. On the outside, we are not the same, at all. But on the inside, the thing he taught me that day, without any hesitation on his part, is that on the inside we are all the same. Exactly the same. Our determination, our grit, our independence, our perseverance to get to the top of our own hills, it’s all the same. Our hills come in different forms, one might be a harder climb for some than for others, but the will to get to the top is the same. 

My pace may be slower and I may dread this hill and desperately want to give up mid-climb, but I am determined to get to the top. I hope I remember this story more often because it teaches me, though I may look different or have different abilities, I am the same as everyone else. I’m just trying to get to the top of my hill. 


This memory today was a moment of joy and gratitude, all mixed up in one. Sometimes the hardest climbs are the most rewarding. I go beyond my limitations and the real me, the one that lives inside this body, takes control and tells this body, yes you can make it to the top and you will make it to the top


The Singing Hens

It’s Friday night and with the anticipated end of the snow on the horizon, I chose House of Cards and a cozy night of rest. I want to be ready to meet spring with much enthusiasm. As I settled in for the evening, I sent a text message to the hens and asked a quick question about Instagram. The hens are my go-to social media gurus. Bridget, the youngest, responded to my question. Accompanying her response, was a short note . She shared she listened to the Dixie Chicks this week and it brought back a flood of memories for her. And then her message initiated a flood of tears from me. Earlier this week, Shania Twain was on The Chew. And just as Shania was introduced the tear ducts opened, the corners of my mouth turned upwards, and the happiest of tears poured out of my eyes, like a baptism of happy. 

You see, years ago, so many years that I still walked and Bridget still sat in a booster seat. The hens and I used to just drive around with the sunroof open, blaring Dixie Chicks and Shania Twain, and singing the lyrics of their songs like we were the back up singers to their bands. We drove through drive-thrus and ordered Vanilla Diet Cokes, pressed pause, collected our Diet Cokes, pressed play, and drove away, singing. I can’t even remember if we had a destination other than a drive-thru to get a drink. 

A lot of the work I do with mindfulness and awareness and stillness suggests the past is like the wake left behind a boat. The wake stays behind and the boat moves forward. But, every once in a while, there is a bit of the past I want to scoop out of the water and pull onto the boat. This kind of memory isn’t just the past, it is a chapter that contributes to the story that is my life. 

There are smiles on our faces and then there are the smiles only the heart can birth. Driving around with these girls, sunroof open, and loudly singing is a part of my past I don’t ever want to leave behind. I think its perfectly okay to collect the good stuff and carry it along the ride. It’s what gets us through the hard stuff. And when I feel stuck and confined, I pull out this chapter and remember the days when we didn’t have to be anywhere but with each other, singing our song. 

Life moves along and there are always more memories to create and live and breathe. But, I’m taking this moment with me and not letting it go for anything. A moment in time like this teaches me the power of letting go, feeling the sunshine on my face, and the importance of, simply, spending time  with the people I love. 

I had no idea these singing, dimple faced girls would lift me up so highly when I needed it most, so many years later. They are the most beautiful adults now and I can’t help but think of the loving and brilliant mark they left on my past, leave on my present, and will leave on my future. 

So, my message is this...take from your past what is good and warm and feeds you. Take it and water it and let it grow. 



The hill. It takes practice.