Saturday, November 30, 2013

It's Silly, but I Believe

“Faith is believing when common sense tells you not to. Don't you see? It's not just Kris that's on trial, it's everything he stands for. It's kindness and joy and love and all the other intangibles.”
-Miracle on 34th Street

Just a silly story to begin the holiday season...

I love the movie, Miracle on 34th Street. Not the new version. The old black and white version with Maureen O’Hara and Natalie Wood. Since childhood, I watch this movie at the start of every holiday season. For those of you who haven’t yet seen it, it is a story that begins on Thanksgiving and ends on Christmas. Santa Claus is on trial and a little girl struggles to truly believe in him. A heart warming tale that leaves me in happy tears, no matter how old I get. 

In keeping with tradition, I watched this movie a few days ago. I honestly can’t remember which day I watched it, because the days all seem to run together during these holiday weeks and weekends. That’s kind of the joy of this season...time stands still for a moment and days run together. I am kind of a sucker for this time of year and even though I don’t want to decorate this year because of all of the renovations, I still switched out all of my candles and hand soap to scents like, Vanilla Bean Noel and Hot Buttered Rum and Citrus Holly Wreath. Oh the dreams that run wildly in my head for next year. Luckily, I have an entire year to plan my first holiday season in my first home. But, back to the story...

So I watched the movie with my usual preparedness. A box of tissues in hand and my dog sleeping on my legs. Though, this time, the lines rang a bit differently, they struck a new chord. I couldn’t quite figure it out at first, but about halfway through the movie, it hit me. 

Recently, I learned the power of positivity and dreams and imagination. I always thought these were things kids posses naturally, without practice, and then adults, naturally, cling to realism and so goes life. But, the more I read, the more I learn, the more I grow, the more I know for sure the imagination holds so much power. It is a place of freedom and expression and bliss. I work on honing my dream and imganitation skills constantly. I just assumed this was new to me...until I watched Miracle on 34th Street for the umpteenth time. 

There is a particular line in the movie I love, have always loved. “It’s silly, but I believe.”

Young Natalie Wood says this over and over and she tries to trust her friend, Kris Kringle. She says it kind of haphazardly, which I adore. I kind of love repeating lines of movies and television shows. I do it quite a lot, sometimes without realizing it. And, as silly as this is to admit, in the past thirteen years since my accident, I find myself repeating this line too, haphazardly. Just the other day when I thought I hit a road block with my health, instead of allowing my head to venture off into negative land, I switched gears, looked in the mirror and repeated, it’s silly, but I believe. The line just turns my thoughts to hope instead of despair. That’s all. Nothing too complicated. What I learned, though, as I watched this movie, is that I repeat this line all of the time. And not just in the last thirteen years. As a child, any time I was said or feeling down, I would look in the mirror or utter softly to myself, it’s silly, but I believe. I’ve probably been repeating it for thirty years.

What I do know now though, is I never say it or said it because I needed convincing Santa Claus is real. I say it because it is a short statement or affirmation, as my new self-help lingo calls it, of hope. Plain and simple. A quick reminder to focus on the dreams and images of a better day. Basically, in one quick sentence, it says, I believe in a better moment. I believe in a better tomorrow. I believe in a better time. I believe in those lovely intangibles called kindness and joy and love. It’s silly, but I believe.

Just think, I could have saved all of this time and money on self-help books and just watched Miracle on 34th Street. Clearly, I joke, but how eye-opening to learn I always practiced my affirmation. 

That’s all for now. I spent the day with dear friends at a brunch that lasted well into the afternoon. None of us noticed the passing of time, just kept talking and eating and enjoying. Now, I will end this day with The Godfather. I know, quite an extreme opposite of Miracle on 34th street. But, hey, I’m all about taking the good with the bad. I look forward to a sunny river walk, with Belle, tomorrow morning. And to cap off the weekend start of the holidays...I will watch Homeland with Kelly and eat appetizers for dinner because we can. It’s the holidays. Not a bad start to a season of joy...especially for an introvert like me, right Steph, Jenni, and Jos? A lot of down time peppered with meaningful moments shared with true friends and loving family. Here’s to joy...‘Tis the season.

Wednesday, November 20, 2013

A bit of praise

Now, more than ever before, I understand my life is a game of chance. I surrendered to this truth a long time ago. Yes, there are some aspects of my life I can control, like my perspective and my attitude, but the day to day happenings of my health and my condition, well I am certainly spinning a roulette wheel. One day I might feel empowered by this fact when I find solutions to challenges I once though insurmountable like laundry or grocery shopping. And then the next day, I feel defeated by the spinning wheel of chance. I might be dressed and ready to head out and a wheel pops or I feel nauseated and lightheaded and must stay home against my will which leads me to swirl the drain of negativity. Frustration, negativity, and anger only cause me further resistance. I am not a person who responds well to any of these things. In fact, I shut down rather than fight when confronted with negativity. 

The past few weeks proved especially difficult. Right now, I spend a majority of my time on my health. And not the good for my soul eating well and exercising kind of time. I spend time coordinating nurses, sitting through nursing visits, emailing about nursing visits, going to the doctor, and lugging around a machine that is part of my treatment. And if any of the help or services I set up happen to decide not to show up, well I must email and coordinate all over again, which takes hours and even days. This way of life is grueling and exhausting. In the midst of all of this, I desperately try to stay on my own personal schedule. I try to fit in what I love like eating well, walking Belle, and meditation, and praying, writing, and reading, and even watching Real Housewives. I rarely get to the last one, but I try. The items on this list most important to me are the hardest to skip. Instead of a shrug of the shoulder, I can easily spew negativity in my own direction. And then the cycle continues, I feel like a failure and continue to fail. I resist instead of cooperate.

The funny thing is, I know this method does not work. I know, from many years of experience, this method does not work on children. I cheer children on with words of encouragement and excitement and find positivity far more rewarding and know it produces for more and far better results. I easily and fervently cheer for other people. And just when I was thinking about this quandary of negativity I seem to swim in, when I feel like the world is conspiring against me, I am smacked right in the face with a lesson. And a lesson from my dog, no less.

Today, as we walked our river walk, she taught me a huge and important lesson. I wear this negative pressure machine right now. It sucks out the bad stuff, while healing the good. It is a little box, attached to a tube that attaches to my body. The box is about three inches thick and about five by seven inches in size. When we walk, I wind up the tubes and tuck them behind my back and hook the strap of the machine to a bar on the back of my wheelchair. This way I don’t have to worry about it falling off of my lap and disconnecting from the force of the fall. Occasionally, while we walk, the machine slides down the bar, and rubs against my tires. It makes an awful grating noise that Belle just despises. The noise freaks her out, to put it lightly. She stops cold and ducks her head as if she was just hit with a brick. She does not enjoy the noise one bit. Belle then resists the walk and just decides to stop. I can see her fear every time I adjust my legs or my sunglasses. Instead of these simple adjustments, she thinks I reach for the machine and it will soon grind against the wheels. She cowers, digs her paws in the ground, and refuses to walk any further. I remain determined to keep her moving forward because I don’t want to instill fear or cause her to associate the river walk with fear. 

Today, she stopped right at the path’s entrance. I practically dragged her for the first ten minutes of the walk. I tried everything to get her moving, but nothing I tried worked. I tried to look forward and just keep moving, hoping she would follow my direction. I tried to keep picking her up and moving her along so she would see we were continuing the walk. Nothing worked. I grew frustrated and became a bit agitated and stern. I actually thought my refusal to back down might work. Instead, all it did was make her more scared. She isn’t used to sternness or frustration or anything of the sort. She is used to silly voices and kisses and cuddles. Then I had a thought. Instead of resisting her resistance, I chose to adopt the sweet, high pitched voice, she seems to lure out of me, and encourage and cheer her along. And what do you know, she trotted along side of me with the smile and happy prance I am so accustomed to on our walks. The more I encouraged and cheered her along and said good girl, that’s my girl, such a sweet girl, the more she walked and forgot about the evil machine. And as this moment continued, I felt my eyes well up with tears and that all too familiar lump in my throat. The kind of lump and tears that alert me to an aha moment or a lesson learned. 

I need to be a bit kinder and a lot more gentle to myself. I need to instill a softer voice full of encouragement and praise. When I don’t feel like I am doing enough or living up to a standard I have for myself and want to halt and give up, I need to speak lovingly and adjust my thoughts. I need to extend this energy to my thoughts and my inner self. I need to recognize I, too, am doing the best I can to do what I can, when I can. As easy as it sounds to ease up on myself, well it isn’t so easy. I create a bit of resistance because I am so hard on myself sometimes. It is far easier for me to be kind and forgive and encourage others, but I am worthy of the same treatment. So tonight, as I drift off to sleep, after I practice gratitude and joy, I will practice a bit of praise. Praise that I woke up and faced the day and continued to move forward, no matter where the roulette wheel landed. I am worthy of praise and encouragement, just as I am. We all are. 

The river walk and the path that reminds me to keep on moving.

And sometimes, along that path, it's okay to stop, drop, and roll in the grass and leaves. 

Friday, November 8, 2013


There is a bit of a fog I enter while I decide I will heal my body. I focus only on what is necessary. I seem to bow out of life for a bit. My email responses are poor, I send text messages less, and I tend to let go of the things I love to do most. It is kind of an attack mode, or as my doctor calls is, a full-court press. He loves sports analogies. I don’t always understand them, but appreciate the enthusiasm. 

The thing I learn, while in the midst of the full-court press, is gratitude and joy are practices. I can easily fall into a funk of why me or why is this happening, yet again. Believe me, even now, when I understand the questions should really be why not me and why do I deserve any kind of a break from illness, the falter can happen in the blink of an eye. And just when I am about to miss the step and fall into the darkness, I remember, quickly and almost magically, it is time to practice. Time to practice gratitude and joy. 

The first time I heard these things, gratitude and joy, were practices, I thought it was absurd. I always assumed gratitude came with many blessings. Assumed joy was found in others, fantastic vacations, or evenings out, or concerts, or holidays. But, neither of them truly stem from such things. Not even a little bit. Sure, I can practice them while at a concert or on a vacation or out with a group of friends, but the emotions, the graciousness and the joyful heart, they come from hard and fast practice and ritual. If I practice them enough and hold onto them enough, then I can easily access both gratitude and joy, when it is easy and, most importantly, when it is most difficult. 

Through television, radio, facebook, twitter, and the world swirling around us, we are taught to believe someone, somewhere is having a fantastic night, loving every moment, and absolutely living life to the fullest. She in a beautiful hall lined with vintage, knotty wood floors, flooded with twinkly lights, with the most radiant people, and they are laughing out loud and dancing all night long to the pitch perfect music. I don't mean to sound like a pessimist, but, seriously, these magical nights just do not happen. I can twist an evening, a day, or a vacation to sound like the best ever and leave out all of the icky, not so fun to tell parts, but really, the entire story is made up of fantastic and not so fantastic moments. Every story is, even Cinderella. 

The trick is, where the practice comes in handy, is to be able to recognize the sparkly moments, jump on the carriage made out of a pumpkin, and ride off into the night. And if one of my shoes falls off, well it falls off and is left behind, only to become part of the story later on and make it whole. Cinderella wouldn’t be much of a story with out the ugly step sisters and the glass slipper and the coach made out of a pumpkin. It would just be a story of a pretty girl who meets a prince and marries him and, well, that is just plain boring.  I digress, but you get the picture. While I can’t wallow in the bad and the misfortune, I also must learn find the carriages made out of pumpkins and the fairy godmothers along the way. 

So, this time, as I ventured into the world of I must heal this latest infection, I decided to really, really exercise my gratitude muscles. For the past several years, at the end of each day, I recall at least three things for which I am most grateful. Even if I repeat the same three things for an entire week and they are things like, I am grateful for my dog, for this warm bed, and for food to eat, I express them. This time around, I increased the list to five expressions of gratitude and three expressions of joy. But the change was, I had to find them during the day, not just before I fell asleep. I still said the three out loud, before I finally closed my eyes, but I challenged myself to pause and notice the moments where I felt joyful or full of gratitude. The moments where I said, hey this isn’t so bad and I’m actually glad to be alive. It can also be a bit painful to marinate in these joyful moments. The assumption is always, uh oh, something is going right, something bad must follow. But, the truth is, the bad will happen. There isn’t a magic answer that ends all suffering. A trick does not exist that eliminates the sting of pain. What the practice teaches, however, is that among the pain and the suffering, there are moments that shine brightly, moments that turn the corners of the mouth upward, and, sometimes, even force a bit of laughter. 

True joy, true gratitude come from within. This I know for sure. This truth is simple, this truth is real. Because even in my most feared situation, another infection, I find them both. Yes, I must undergo this dreaded treatment a bit longer, but that is because it is working, it is effective. There was a long, long time where nothing worked, where everything failed. So this time, I am grateful for what works. I find joy in the chance to be alive longer, to experience another season, and the joy found in the hope of many more seasons to come. And yes, sometimes the shoe falls off, sometimes I leave my glass slipper behind, but instead of a prince returning it to me, I turn around, pick it up, and put it right back on, hoist myself back into the carriage, and ride off guided by the light of the moon. 

Thursday, October 24, 2013

Jagged Edges

“It is not the critic who counts; not the
man who points out how the strong man
stumbles, or where the doer of deeds could
have done them better.

The credit belongs to the man who is actually
in the arena, whose face is marred by dust
and sweat and blood; who strives valiantly;
who errs, who comes short again and again,

because there is no effort without error
and shortcoming; but who does actually
strive to do the deeds; who knows great
enthusiasms, the great devotions; who spends
himself in a worthy cause;

who at best knows in the end the triumph
of high achievement, and who at the worst, if
he fails, at least he fails while daring greatly....”

-Theodore Roosevelt 
(source, Dr. Brene Brown)

In the last week my life jumped from one extreme to the next. I leaped from devastation right into joy and landed in the fluffy pile of hope. I felt scared and courageous and weak and strong, all at the same time. 

A week ago, I sat in this exact same spot with lips tightly held together, a thermometer in my mouth, and a tissue in my hand, ready to wipe the wet tears from my trembling cheeks. Fear presided and consumed me and hope and gratitude rapidly fled. I assumed an impassable barrier formed and I was doomed, yet again. And I sat, bathed in fear, instead of turning inward and creating a protective barrier, I chose to put down my armor. I chose to reach out and admit the fear, share the worry, and attack the illness head on with exposure. This is new for me. Vulnerability is not really my strong suit, or was not really my strong suit. I try, every week, to open a new part, to release a new blockade, and to shine light on a dark and hidden spot, buried deep down inside. 

For years, I mastered the flailing art of perfection. I honed the skill of pretend. I only showed what I wanted, and kept the rest rotting inside of me. As I enter a room, I am well aware how vulnerable I already appear, so I did everything I could to cover up this assumption of weakness. The right jeans, the cute boots, the smile, and even the sunglasses all said, hey I am one of you, I am perfect, I am not injured, I am not less than, see, don’t you see? And then I learned others’ perception of me wasn’t what mattered most. It wasn’t something I can control or perfect. What matters most, is my perception of me. The perception that is the truth. And while I tried to present a perfect picture, I also died a little bit each and every time. Along with the numbing of the fevers and the blocking of the vomit, I broke into tiny little pieces each and every time; so shattered, I couldn’t even put me back together again. 

After quite some time, this war with my demons and my illness and my anger, finally surrendered and waved the white flag that said, I give up, here I am, please help me. I prayed for a miracle. I prayed for change. I asked for strength. And this miracle didn't arrive in a box with a neatly tied ribbon. The miracle showed up in a pile of broken pieces with cracked and jagged edges. Bit by bit, the pieces were reinforced and made stronger. The over all picture, while filled with many cracks and chips and glued edges, started to fill in and become complete for the very first time. Not complete because it was back together again, but because it was a beautiful mess. This is vulnerability. The ability to allow the cracks to show and know and trust the final imagine is not a mess of imperfect, broken pieces, but a masterpiece of imperfection. And as much as I think I grow and change and evolve, this lesson is learned over and over and over again. Begging me to trust it, begging me to know it is the right avenue, and urging me to keep gluing the pieces and not finding shame in their brokenness.

Entering the arena, is a willingness to enter crashed and burned. It is the decision to show up, as I am, and offer only what I can at the moment. And when I walk through the doors and see the stands filled with people and hear the cheers, I know they aren’t because I am flawless, it is because I am full of flaws. And I may not run the perfect race around the track every time. Heck, I may not even make it around once. I fall, I hit a wall, and I even turn around and run back to the starting line. But, I entered the arena a while ago when I decided to show up for myself and stop pretending I wasn’t full of hurt or full of pain or full of anger or full of damage. I am here to stay.

I still struggle with perfection. I decide I beat an illness, a blood infection no less, and I should be fine. I decide I am over my issues, my shame, my anger, and am ready to complete the race, run all the way around the track, without a fall. But this isn’t possible. I will always hit a rock or turn around, full of fear. The finish line isn’t the goal, heck, it isn’t even a wee bit important. What is important, is how I recover, it’s the courage I show as I wear the bandages and run forward. And I discover, along the way, it isn’t the shame that holds me back, it is the unwillingness to admit the shame, admit the falls, admit the hurt, and grasp the helping hand. Because when I do, the light shines so brightly, the darkness doesn’t even stand a chance. 

And when I open the floodgates, when I allow the hurt and pain to run freely, the waters join with other waters of hope and joy and gratitude and sharing. Everyone shares a bit of a fall or stumble. Everyone has a bruised knee or broken heart. When we allow ourselves to open these wounds and share their blood and their torn tissue, we allow others’ to reveal their scars, their chipped bones, and fractured souls. The revelations don’t make us weaker, they make us real. They make us whole and broken and scared and courageous, all at the same time. 

I opened my pain, right at its gut, and poured it out to you. I shared my fear. And instead of judgement, I received love and hope and prayers and thoughts of wellness and health. I felt lifted and risen in a way I’ve never felt before. The strength and endurance to face the challenges head on was renewed and re birthed. I attacked the infection on head, faced the darkness and looked it straight in the eye and it is losing its battle. And I was scared, so scared, but also never so sure I was up to the task. I discovered the source of the nausea, some pain from a new treatment and a bit of memory association with a smell of the machine involved in this new treatment. I worked diligently to follow every order from the doctor, even when I didn’t want to and hated the moments of feeling trapped, yet again. I did all of this because I knew it was okay to be angry and scared. I knew it was okay because I had people, all of you, fighting for me, picking me up when I just didn’t think I could do it anymore. And while not everyone has a kind and generous group of blog readers and fighters, we all have one person, one hand to hold. Not too long ago, I felt alone and full of shame and afraid to take a hand. If we just let go of the shame and be willing to take the hand, even while filled with fear and doubt, we can do it, we can keep on running and know if we fall, we will get right back up and run forward. Because this is what we do if we enter the arena, we just keep running and falling and recovering. 

I cannot express the gratitude I feel for all of your prayers and thoughts and positive vibes. I can only tell you, I took your hands and with your help, pulled myself back up again. How lovely it felt to not be alone and have just so many hands to hold. Your generosity of spirit and kindness of heart have not gone unnoticed. I am forever grateful.

Thursday, October 17, 2013

A quick update

I am in a bit of a funk lately. Much more on this to come, but wanted to stop by quickly and give all of you, because you are just so wonderful, a quick update. This is huge for me. I don't usually admit this truth as it is happens. In the past, I keep the news private. I put on a brave face and soldier on, but I am different now. I am changed. It is much easier to admit this truth after the fact, after it is better, when I am better. Here it is. I am sick again. This current infection, found a little over a month ago, is persistent and determined. I have so much to write, have written so much in the past week and a half, but right now my head is spinning. I am pursing my lips so I don't vomit. I feel so nauseous, something I haven't felt in so, so long. In fact, a couple of hours ago when the nausea came on in full force, I continued to repeat, this will not happen, I will not go here again. While I type, a thermometer hangs out of my mouth. I don't feel like I have a fever, but I can never be too cautious. This time around this will be different. I learned so much last time and already face this in a new way. I will share shortly, hopefully tomorrow. Right now, I just need to lie back down and try to stay calm and not give in to the nausea. I am scared and full of fight all at once. I will overcome this, I know I will.

Looking forward to checking in again soon.
Temperature is normal, I do not have a fever. One check in the right column.

Sunday, October 6, 2013

Sunday Funday

I meant to post this earlier today, but the day proved a bit more frustrating than I previously assumed. The weather forecast promised rain the entire day. I love a day of rain because there isn’t much expectation...I don’t feel like outside workouts or errands beckon. A day of rain calls for my bed, the television, good books, coffee, cooking, and writing. 

During a brief lull in the rain, I leashed up my dog and ventured outside to give Belle a quick bathroom break. I planned to stay on the porch part of my ramp, but, at the last minute, decided to wheel down the ramp and let her sit in the yard for a few minutes. My sister just called so I thought I might enjoy sitting outside, watching Belle, and talking to my sister for a brief time. Well, the comedy that is life had other plans. Let me tell you, all afternoon, I was so upset about this incident and went over it and over it about ten different ways, cried, called my mom, talked to my sister about it, and finally just got over it. And now that the trauma is over, I can’t stop laughing. 

Nothing is easy in my life and everything is like a half-hour comedy show. Just getting out of the door is hysterical. I leashed up Belle, went outside, started down the temporary ramp, made of untreated particle board, which, evidently, becomes quite slippery when wet, and was almost to the bottom of the ramp when Belle saw a squirrel and pulled and barked as if ten machine toting, fatigue wearing enemy combatants were standing in our front lawn. Lately, since we now have a yard and don’t live on a super busy street, bolting after cats, deer, and squirrel, has become Belle's favorite past time. Friday, the wheelchair repair person was here to fix my footrest. He held the door open as he left and Belle crawled under my chair, shimmied through his legs, and bolted out of the door. She runs through the neighbors’ yards, then through the woods in the back, and finally saunters up my driveway as if nothing happened. She looks at me as if I am the crazy one for losing my insides and hysterically calling her name. Today, as she pulled at the sight of the enemy squirrel, she also pulled so violently my chair went half way off of the ramp and I was left balancing in mid-air. She pulled so hard, the leash slid out of my hand and she took off in a sprint. I was about to fall and end up soaking wet in the grass. I am terrified a car will hit her because Belle thinks cars stop for dogs, but holding tightly to my precariously positioned wheelchair was all I could do to prevent myself from eating wet grass. And my sister, who was still waiting and speaking on the speaker phone, that was once in my lap and now sitting on the slippery and wet ramp, said over and over again, “Sarah, are you okay, should I call 9-1-1? Sarah, what happened, are you okay, okay I am calling 9-1-1.”

And I, while balanced on the edge of the ramp, decided to just yell help over and over again. I have no idea why, but I am laughing hysterically while I type this. I know it isn’t funny. I know it was scary. Heck, I was shaking so badly and was so out of my body I was dizzy. But, now, for some odd reason it is cracking me up, in all kinds of ways. So I sat, teetering between a mouthful of grass and the solidity of my chair, while my sister asked time and time again, from the voice on the ramp, what happened, are you okay, and I just continued to yell help, while Belle sniffed and explored, without a care in the world. Luckily, and this is where I see miracles. Miracles are found in the moments people or things or hope or light just show up. Yes, I was in a compromised position, but the shift in perception from why did this happen to me to well it did and now someone is rounding the corner and running up the street to help me, that is the miracle. Bad things will happen, but the love, the light that shines after the clouds, those are the miracles. A very nice neighbor man, who also decided to walk his dog during the rain break, ran towards me. He quickly arrived, pulled my chair to safety, and all was well again. The next few moments are a blur because I was so shaken, but I know I said some sort of a thank you and Belle returned without a care in the world. And my sister’s voice, still coming from the fallen phone on the ramp, repeated, “Are you okay, what the hell just happened? Hey, Sarah, are you okay?” This voice from the ramp, well it sent my shaking and numb body into a fit of laughter. 

And yes, I know it is awful and I might really be hurt if I did fall, but I didn’t fall. I am okay, help arrived, and for that I am grateful. Only today counts, not what might have happened, or what could have happened. The good outweighed the bad and that is what matters. And my dog is unscathed. Dogs get it, life goes on, and we all end up okay in the end.

She now rests, underneath the stove, while my onion soup simmers away, and I write to try and subside this laughter a bit. I plan to make the nice neighbor man cookies tomorrow and write him a thank you note. All is well that ends well, right?

The planned post...
Yesterday, I wheeled down my giant hill and headed out to Ashlea’s house. It isn’t a secret that I love to spend time with Ashlea. We just get each other. As we said goodbye last night, we said thank you to each other for the evening and each said, I should be thanking you for what you did, not you thanking me, and her husband, St. Kyle, said, “Hey, each of you contributed something and that made everything come together so well.”

I am so grateful for Ashlea. She makes me feel like my scars aren’t there and my vulnerability is accepted. She never second guesses my ability, yet is always there to reach something or lend her hand while carrying on a conversation. She is aware of my limitations, yet never makes me feel limited. Her friendship is one of the best parts of my life and spending time with her, as well as her family, always makes me feel like a very lucky person. And her husband, St. Kyle, is a pretty great friend as well. Even though they live a half an hour away, he insisted on following me home in the pouring down rain to help me up my huge hill. And even though I refused to allow it, he sat by the phone and begged me to call him if I needed help. I didn’t, the rain stopped for a minute, and I made it up safely. But, just knowing he was a phone call away, well that is just the encouragement I needed.

And yesterday, Ashlea and I did what we do best. We cooked and crafted. Ashlea just returned from a visit with another friend whose young son was just recently diagnosed with leukemia. Ashlea spent day and night as a rock for this friend, and one day, while the friend was at the hospital attending to her son as he received his dose of chemo therapy, Ashlea stayed home with the baby. And while the baby slept, she turned on Food Network and caught a show that featured a recipe, sent me a text, and decided we should make it upon her return. So, we did. We made a potato and caramelized onion tart. We modified the recipe so much that we made it our own. It turned out so well that I drove home in a food coma and fell immediately into bed. We took pictures and wrote down the recipe we made up and here it is for all of you. It is delicious and I can’t wait to make it again. 

We took pictures of most of the steps for all of you, but because we are Chatty Cathy’s when we get together, we didn’t start taking them until about half way through. Sorry, we just get to talking and lose our heads.

Potato and Caramelized Onion Rustic Tart

One pie crust or sheet of puff pastry (we made our own pie crust because Whole Foods was out of puff pastry, but any already made crust will work perfectly well.)
2 tablespoons Olive Oil
1 tablespoon butter
1 or 2 large yellow onions (about 4 cups), thinly sliced (about 1/8 inch half rounds)
Salt and freshly ground black pepper
1 Potato (we used Yukon Gold)
4 oz cream cheese, softened (we decided you can really use almost any cheese mixed with any seasoning you like. Herbed goat cheese with just garlic and salt and pepper or plain goat cheese with any kind of seasoning. Grated sharp cheddar or marscarpone or Fontina or Gruyere. The possibilities are endless)
1 tablespoon Italian seasoning (there are tons of recipes on line to make homemade)
1 tablespoon spicy brown mustard

Prepare or thaw pie crust. It needs to be soft enough to roll out.

Mix 4oz of softened cream cheese in a small bowl with homemade Italian seasoning, mustard, and salt and pepper to taste.

In a large saute pan over medium heat, heat butter and 1 tablespoon of the Olive Oil. Add the sliced onions and season with salt and pepper. Cook, while stirring occasionally, about twenty minutes or until the onions are a dark, golden brown. Remove from heat.

These are the onions during the cooking process, they will be much browner when done. 

While the onions are cooking, slice the potato. Ashlea sliced them with her food processor’s slicing blade. Slice into 1/8-inch-thick slices. Place the sliced potatoes in cold water so they don’t turn brown.

Roll out the pie crust and roll out into about a 12-inch round and about 1/8 inch think circle. Roll it onto a well-floured surface or a piece of parchment paper. If you roll onto the parchment paper, you can slide the paper onto the cookie sheet from the counter and bake. If you roll it onto a well-floured surface, roll it around the well-floured rolling pin and then slowly roll it off the rolling pin out onto a greased cookie sheet. Spread the cream cheese mixture in an even layer over the pie crust about 1-inch from the edge of the circle. Basically, leave about a 1-inch border.

Remove the potatoes from the water and dry really well with paper towels. Then, toss them in a bowl with the remaining 1tablespoon of Olive Oil and a bit of salt and pepper. After potatoes are tossed in the oil, place an even layer of potatoes, overlapping slightly, on top of the cream cheese mixture. Keep them inside of the 1-inch crust border. Finally, place caramelized onions over the top of the potatoes. Fold over the exposed edge of the pie crust or puff pastry to create a border.

Obviously, our dough is not a perfect circle. We will show you what to do with the excess dough a few pictures down.

See those little balls of dough? That is the excess dough and we put butter on them, sprinkled them with cinnamon and sugar. We should have put them in separately because we had to remove the entire pan after twelve minutes and remove the cinnamon sugar bites. Cooking is always a lesson. They were tasty and worth it, though.

Bake for 30-35 minutes until the crust is golden brown and the potatoes are cooked thoroughly. Let stand about 5 minutes until slicing.

We ate ours with a spinach, bacon, hard boiled egg, and red onion salad. We made a homemade mustard dressing. We will try to make the dressing again and record the amounts. We kind of made it up as we went along. I promise to include it once we figure it out.

After a delicious dinner and washing dishes, we decided to do a craft. Ashlea is amazing at holiday decorations, well any decorating to be honest. And since I am not decorating this season because I don’t want to unpack and then pack again for the construction, I am vicariously living through her. She is so good at it, I basically ask for her advice constantly any way. She had this brilliant, yet super simple, idea of a burlap runner for her front entry table. She has the house decked out for fall and wanted a little something else. 

Here is a super simple, but darling bit of a fall decoration idea.

Burlap runner

You will need:
One roll of finished edge burlap. (yes, they do sell this in all sorts of widths. Ash found hers at Hobby Lobby for $9.99)
One spool of wide ribbon. (choose whatever you like, grosgrain, patterned, wire-edged, anything really. Ashlea chose something that works all through the fall season.

Just measure how long you want the burlap. Determine how much material you want to hang over the edge of your table. But, be sure to leave enough to pinch and tie a bow around it. This will make the length of the burlap shrink about two inches. So leave enough. Better to have it longer than you would like and cut a bit off later. 

The plain console table.

The table with just the burlap.

Then, tie a bow with your ribbon around each end. Decorate the table with whatever you want and the project is done. That is it. It seems like a really simple thing, but makes such a huge difference. We just loved how it turned out and especially loved how easy it is. It’s just something fun for fall. 

Tie a bow, such as this, on either side.

And Ta-Da. It's fall in the entry way.

I know not every weekend will be like this past weekend. Not every stumble down the ramp will end so well. But, this weekend was great and I landed safely back on the ground. Hope, it’s always just around the corner.

Happy fall and Happy Sunday, or what is left of it. I’m off to bed and plan to fall asleep while listening to the rain and and wrapped in a blanket of laughter about the run in with the ramp. 

Peace and smiles and wishes for much laughter and hope to all of you.

Wednesday, October 2, 2013

From Basil to Butternut...a bit of an update and a ramble

Thank you, all of you, for your wonderful comments and stories and memories. I loved reading all of the porch stories. If you wrote me an email I am working on returning all of them. I am just a bit behind with everything, but want you to know I am working on them and you will be receiving a return email from me shortly. 

With that said, I am behind. Behind in every area of my life. It wasn’t until this past Sunday that the chaos around me seemed to finally stop swirling. Monday morning I woke up early, dove into my morning rituals, and decided to head down to the river for the first time in ages. But, at around nine thirty, all of the power on my street went completely out due to maintenance of the electric lines. This really wouldn’t be a big deal or stop me from driving, usually, but Sunday night I decided to be super responsible and start using my garage. Up until Sunday night, I parked in the back outside of the garage. It rained Sunday, so I thought it might be a good idea to start to make use of the garage. I neglected to realize one of the two issues with this garage parking plan. The garage is under the house and connected to the basement. I knew wheeling up the hill, to my front door, was part of the plan until the elevator is installed. However, I forgot about the planned power outage and how that might put in wrench in the whole electric garage door opener plan. So, no river. I waited, hoping the power would magically come back on before the four o’clock scheduled return, but no luck. Instead, I took advantage of the peace and let my mind heal.

I find it fitting I moved into this house at the end of a season and started another so soon. Out with the old and in with the new. Fall. Yes, it is finally here. I love this season. I know it is trite or cliche, but I adore it. I burn candles called Pumpkin Cupcake and try to spend as much time outside surrounded by red, orange, and yellow leaves and try to spend time inside, cooking and gathering with friends and family. My very favorite part of a house that is my own, is deciding how I will decorate it with each change of the season. I kind of have a holiday freak flag when it comes to decorating and theme food and dinners and drinks. I’m kind of happy I don’t love the fancy flavored coffee at Starbucks because I might drink them every single day. I’m just a plain coffee, with a splash of milk and a bit of sugar, kind of girl. But, the names of the lattes make me want to order them and guzzle them down. The Pumpkin Cupcake candle burning next to me is actually making me want one of those drinks right now.

My house is still in the midst of change. It will be transformed into a place that works for me. Until then, I only, with much help, unpack what I need for the next month or so. That way, when construction begins, I don’t have to pack up a ton of stuff I just unpacked. And as I look around, I see what mostly is unpacked is my kitchen stuff. All of my cookbooks, most of my pots and pans, measuring spoons and cups, and a few baking sheets. The essentials, like plates and silverware and glasses are up here too. I say up here, because most of my stuff is still in boxes in the basement. Since the elevator is not installed, I can’t go down there, and the hill to my front door is too steep to carry much of anything. I am not complaining, just explaining. I have so many good people, especially my mom, dropping by to help uncover items from the basement and carry them upstairs. It’s temporary, so it really doesn’t bother me much. I make lists when I think of stuff I need and a then someone runs down to get it. I learn what I love the most and what I need the most. Clearly, as evidenced by what is unpacked the most, cooking is a favorite. 

I noticed this weekend my cooking told a story, as it usually does. Friday, I made basil pesto from the last huge bunch of fresh basil from a new neighbor. This sweet lady from a house at the end of the street, walked over a huge and beautiful bunch of basil from her community garden. She said she industrial size production of the basil and needed to use it all up before the growing season ends. I happily and graciously accepted the basil, drove over to raid more from my parents’ garden, and made a huge batch of basil pesto. I froze some for a nice treat during the cold months ahead. When the seasons change, there seems to be this click, like the heat and humidity stops, the bathing suits go into storage, the boots come out, and the air is finally cold enough for an extra blanket. Sunday night, I marked this click with a batch of Butternut Squash and Apple Soup. As I chopped and stirred, I felt another click. The click of the transition to a new way of life. A way of life that will suit my needs and a space that is all my own. I can plant and decorate and cook in my very own space, in my very own house. It felt good. I felt rebirth, hope, and flood of light all at once. A fresh start, a new beginning, a new season is here.

From this...

to this.

And then with just a click, it's time for fall.

So, I will cut it short tonight. I have so much to share in the coming days and weeks. Contractors, architects, elevator professionals, electricians, project managers, dry wall installers, window installers, and kitchen designers have run amok these past few weeks. One of the best moments of this process was when I learned the kitchen and bath architect has a daughter with a condition that requires her to use a wheelchair. He knew every inch and every detail of what I need. I almost cried when he told me about her. To have complete understanding is touching and rare and priceless. I knew he was the one to do the job, I just knew it. I am currently taking pictures of every room and every inch of my space to share with all of you. I want to show you every detail of what it takes to make a house work for an individual with paralysis. I planned to start showing you this week, this post, but I used my phone camera to take some of the pictures, and after I downloaded them, they don’t look so great. I wrote down, find camera, and will start fresh tomorrow after my mom stops over. I plan to explain what works for me and what doesn’t in each picture. And then we will have an entire group of before photos to compare with the after photos, which I will surely share. And Belle will make many cameos in the photos, do not worry. She is very busy barking her head off at the cat across the street and at all of the squirrels and deer. None of which find her threatening, but she still tries to sound fierce. 

My walking, or wheeling, buddy.

Again, I can’t thank you enough for helping me through this change and process. Your support has been uplifting and humbling. It is so nice to know we aren’t alone and every single one of you makes me feel this way. I appreciate you reading and tuning in so very much. I have a dog and a late night walk with some starts calling my name.

Much love and blessings to all of you...

Friday, September 20, 2013

Just Sit

One, and two, and three. I push up a steep hill, look down with each push, and watch as each square of the sidewalk passes underneath my wheelchair. Usually three hard pushes force my way through a square. I watch for sticks and acorns, anything that might interrupt my rhythm. I keep my head down because even a slight glance towards the top of the hill only reminds me how far I still must push. For sale signs, that white house with the black shutters, or the fire hydrant become my mile markers as I inch towards the top. My support, my teammate, my little dog, Belle, walks slowly and patiently beside me and looks up every so often as if to say, almost there, don’t give up now. I take breaks every so often, but the halt of momentum is almost more painful than the climb. Once at the top, I always say to Belle, we did it, we made it. And then we are on to the next challenge. 

Life as an individual with paralysis is one challenge after another, one sidewalk square followed by another sidewalk square. Whether it is the struggle to reach the stove or wash the dishes, or the effort to prevent an infection, or the task to find the right clothes or shoes, everything suddenly becomes an obstacle. At least half or three fourths of the body doesn’t work and the care to keep that part healthy exhausts me and defeats me. But, then there are the days when the effort strikes new levels of awareness and understanding and insight. Days, like today.

Next door to my new house lives a ninety-four year old lady. Well, ninety-two somedays and ninety-four other days. She can never quite remember which of the two ages she really is. But, as she said, does it really matter after ninety? I look forward to our conversations and always slow down to meet her in the middle of her sidewalk. She tells me stories of her past, her daily schedule, and where she ventured out to eat that day. She doesn’t cook anymore. She cooked enough for three lifetimes and is finished with it. She sits on her porch and enjoys the passing of time, as she puts it. She comments how sorry she is I must deal with what I deal with, but always ends her concern with, well you will lose it all one day anyway and then tells me just how long I still have to live. You have a ways to go, honey, quite a ways to go. Better to learn about loss now rather than later, when the crash course beckons. I listen to her loss. Listen to how she outlived her husband, her friends, and most of her neighbors. Listen when she tells me her children drive her everywhere now because they don’t want her driving anymore. She always throws in a bit of humor and says, so now I don’t go anywhere, I just sit and wait on rides

And as we say goodbye, she walks away, slowly, down her sidewalk to her porch, she always turns around and says, “Hey you’re doing pretty good for you and I’m doing pretty good for a ninety year old lady.”

Today, I asked her if she has any advice, any words of wisdom. She laughed and replied, “I used to give advice and have words of wisdom, but I don’t anymore. You’ll figure it out, you’ll see what is important. The more you lose, the more you gain, and advice doesn’t matter anymore. Just keep going, you’ll figure it out one day and then advice won’t matter anymore. You’ll be grateful to just sit on your porch.”

I push my body to overcome the loss. I try to make it adjust and conform and soldier on, despite the loss. I feel behind or weak or less than most of the time. I feel frustrated and annoyed and tired. And when I am at my weakest point, when I feel the most loss, I suddenly see the truth. I suddenly see my body and my ability has little to do with this life. Eventually, everyone loses parts of herself. Everyone’s body changes and morphs into something she doesn’t recognize. And words of wisdom like, live life to the fullest, mean very little. 

Great difficulty lies in the search for gratitude among loss. I don’t even dare say it can be found in every situation. But my situation, the loss I know, it hasn’t crippled me, its only made me stronger and more sure of who I really am. Somedays, I am more sure of this than others. Somedays, I trust there is a spirit inside that outlives this half working body. And somedays, I think, hey you are doing pretty good. My body may have many years left, many years to go, or it may not. But, what is important to learn, what my loss teaches me when I am open to it, is that I am already at the top of the hill. I don’t need to count the pushes to the top or look back in wonder because I made it. I am already here, I already made it, I am wonder, just because I am me. Just because I am a spirit that never dies. And one day, maybe in the future, or maybe tomorrow, I will learn that is okay to just sit. It is okay to just sit. It is okay to just sit. I am not broken because I am content to sit, I am alive and well and grateful to learn...just sitting, isn’t such a loss after all.