Monday, September 15, 2014

Get Your Pajamas On and Get in Bed


Ron Johnston, one of my favorite people and father of the hens and sweet Kevin, has a famous line, well famous in the family, that he uses when he is frustrated and wants everyone to just calm down. It doesn’t matter if the girls just woke up and put on their uniforms or if Kevin was in the middle of his homework. When emotions swirl and tensions rise, Ron adopts his stern voice and demands, “Get your pajamas on and get in bed.”

Now that the kids are all adults, this line is a source of great hilarity. In fact, I just sent a text to Meghan to make sure I quoted Ron correctly and we ended up in a fit of laughter recounting a few of the get your pajamas on and get in bed moments. It just never gets old.

Ron, while goofy and sweet and fun and loving and kind, is also so very wise. Whether I am as stuck as a turtle in mud or caught in the vortex of my own emotional tornado, I eventually exhaust the you’ll get there, just keep going pep talk and hear a voice sternly telling me to get my pajamas on and get in bed. When I hear this voice, I know it is time to take a deep breath and step away from the situation.

And, yes, sometimes Ron did literally mean his words, but mostly it was a very wise call to calm down and regroup. He offered a second chance, a way to make a fresh start, even if the day had just begun. 

I hear this voice quite a bit lately as I try to add new things and push forward. My body is strong and able and rises to meet my refreshed and hopeful spirit every morning. I choose to flow with this strength and try to add or change bits and pieces of my routine and life. It’s time to create a life that better reflects my wellness, rather than my illness. 

As I grow into this different way of life, I frequently crash into the walls of defeat after I give into a lack of energy or fail to reach a self-imposed goal. I, then, am confronted with a choice. I can stall, collapse, and trash my determination or I can accept my mistake and move forward. Basically, I can choose to forgive myself and start anew, yet again. This renewal is available in every second of every moment of every day. And it doesn’t matter the reason for the crash, large or small, it can always be rectified. Just get your pajamas on and get in bed.


A few days ago, my day didn't start out so well. Instead of allowing the why me and it's not fair mantra win in my head, I reached for a fun and easy tool that usually changes my mood in an instant. I go to my nightstand or my bookshelf and choose a book, open to a random page, and listen to what the words tell me. So, on this not so great morning when I wanted to throw a wet blanket on the day, I went to my nightstand, picked up a book, The Alchemist, and closed my eyes and opened it to a page and this is right where it fell open. Part 2. One more reminder that a second chance is always available and a third and a fourth...the chances are limitless.


***All because I am all for new starts and new beginnings, you will notice a lot of new changes around here and there are many more to come. I hope to see you on Facebook, Instagram, and Twitter as well. My goal has always been to show that while my life might not be what I wanted or planned, and it may be quiet difficult, quite a bit, it is a good life and a life worth living. I also hope to prove we are far more alike that we are different...each and every one of us. Because when we finally take the step to notice and listen and learn about each other, we see our sameness, not our difference. We see pain and we see joy with these informed and enlightened eyes we understand just how universal and non discriminating these two experiences really are. And greater understanding leads to the true definition of love, to see ourselves in another, and isn’t that why we are all here anyway...

This is the message I hope to spread. Thank you from the bottom of my over flowing heart for your support thus far. Thank you. Thank you.



Tuesday, August 12, 2014

All Will be Well


I woke up the morning after Saint Patrick’s Day weekend and felt a strong sense of renewal. My after I am well bucket list now displayed a check mark next to out and about on Saint Patrick’s Day with my life long dancing sister friends. I assumed the fluctuating tide of my health finally turned and I only looked forward. But, my oh my, how I was very wrong, well thought I was very wrong.

The few months prior to the Saint Patrick’s Day weekend, I experienced quite a few health setbacks. This Ohio Winter was rough and icy and cold. My body presented, all too familiar, symptoms like fevers and nausea and loss of appetite. Even though I refused to believe it, I felt a strong sense of the dreaded infection’s return. My doctor seemed uneasy and at a loss as he read aloud my blood reports, MRI reports, and wound culture reports. This is never a positive sign. I spent nine years watching doctors study my reports with a confused and overwhelmed expression. I knew his perplexed face and I knew it well.

Instead of jumping to any extreme conclusions, he aggressively attacked the symptoms. We divided the symptoms and conquered one at a time. However, each time we would test my blood or try a new treatment, the reports returned in more disarray. I remember one day in the office, he looked at the computer, as he read the latest document, and said, “your numbers are all over the place. Some present perfectly well and others are just terrible. I am honestly at a loss. I just want you to be well. I must figure this out.”

So, he powered through the next few months and never relented. I followed each and every order and took every dose of antibiotics he threw my way. The MRI technician said I was certainly a pro as he pushed me into the confining tube, time and time again. When you have as many MRIs as I do, they compare each current MRI with the previous MRI and make a conclusion based on the comparison. And because most of my MRI reports are just terrible, the subsequent new reports always seem a bit better, even when they may not be better. Basically, I showed progress, but still presented very scary symptoms. And luckily, I have a doctor who doesn’t stop. 

The Wednesday after Saint Patrick’s Day, I wheeled in for my regular weekly check up with my doctor. Right away, he didn’t like how I looked. I told him I spent some time out with friends and wasn’t exactly responsible about my vodka and wine intake. He laughed, mainly because he knows this means I had a half of one vodka drink and half of one glass of red wine. He knows my irresponsible behaviour isn’t the normal irresponsible behavior. His larger concern was that I was out for an entire day and wore the signs of exhaustion. This extreme exhaustion from a brief time out is not normal, or so we thought. Without hesitation, he scheduled another visit with my favorite MRI technician and another blood test. 

The blood report came back first and looked awful. I presented half dead. Great. He, immediately, designed his beloved, full court press, his name for the infection treatment plan. I know it's serious when he adopts this go all out, attack, and not sit back plan. As I listened to the play-by-play details, I fought incredibly hard to fight back the giant lump in my throat and the wells of water glistening in my eyes. Because of many years of practice, I took the news like a champ and grinned as if it was Christmas morning. I know he saw right through my transparent acting because he asked, several times, “Are you okay?”

No, I was not okay. In fact, I was pissed and upset and downright angry. I drove home, yelling at every book, every thought leader, including Jesus and Buddha. I questioned why I ever trusted any words, direction, or wisdom any of them offered. I didn’t cry or sob, just yelled and squeezed the steering wheel. I pulled in the drive way, heard my little dog bark with excitement because I was home, and decided to collect myself, for her sake. I fed her and cuddled her and then went into the bathroom, shut the door, and started wailing. With fists in the air and teeth clenched, I screamed with fear and frustration and doubt and anger. I repeatedly asked why me and swore I was not going to go through this again, I simply didn’t have the strength. I allowed this tirade continue for about ten minutes until I calmed down. I probably wore myself out and dried up any tears I had left. At the end of my dramatic bathroom visit, I clasped my hands, looked towards my white ceiling, and prayed. I prayed for a miracle. I prayed for a different perception of the facts. I needed some relief, even if it was just a change in attitude. 

Then, as quickly as perception can shift, I shuttered from a strong wind of gratitude. I expressed sorrow for my anger and begged for forgiveness. I listed everything good in my life and felt ashamed for not recognizing it. And like magic, a sense of peace flooded over me, almost drowning me, and I bowed my head and finally cried healing tears.


Calm was my next visitor on this dark and stormy night and calm helped me craft a solid plan. I designed my own full court press consisting of plays I could actually handle. I reconciled with the fact that this maybe is my life’s path and I best do what I can to put one foot in front of the other and move forward, even if I don't want to now. Moving forward after a great weekend with friends is quite easy...the tiredness and need for the coffee IV seem like a piece of cake compared to moving forward knowing I might have to enter a Hyperbaric Oxygen Chamber, put up with daily nursing visits, and endure the pain of yet another PICC line. I calmed down, crafted my plan, and went to bed.

I cried to a few friends the next day and asked another friend to install my AppleTV. I decided I better, once again, prepare for a life of watching television and reading all of the time. And when I talked to this friend and told him what happened, he very confidently said, “You aren’t sick, you are dehydrated. You don’t go out like that very often and your body probably shows extreme results more than most of our bodies. You aren’t sick again and certainly aren’t sick again because of one night out. My guess is, you are just dehydrated.”

I laughed off his kind sentiments. I wanted to believe him, but I knew my body was just more complicated and sensitive than the average person understands. Honestly, I kind of forgot about his diagnosis.

A few days later, I folded the washcloth over my eyes and boarded the stretcher and entered another MRI. This MRI was different though. My doctor firmly requested I use the MRI at my hospital, instead of the one my insurance company always suggests. He wanted to, personally, read the report and wanted it to be independent of any previous reports. Not only at a different location, this MRI was exponentially louder than the others. It was like a jack hammer. They are always loud, but this one completely drowned out Diane Rehm and Terry Gross. I can usually hear both of them loudly and clearly, but I couldn’t hear a word. I actually had to practice my breathing and meditation because I felt a panic attack rising up because of the extremely loud noise. Instead of losing it, I remained calm and found my center. And then I heard this weird voice. This voice, which I call intuition, said to me, “Hey you are fine, nothing is wrong, all will be well.”

In the past I, all too often, ignored this intuitive voice and favored the voice of reason that loudly chatters in my head. But this time, I didn’t care about that other voice, the one that consults fact and reason and blood reports and history, I listened to this calm and quiet and serene voice that was filling me with a soft and oh so comfortable sense of peace. I let the voice of love win. Usually, I try to read the technician’s face and catch a glimpse of the monitor to see if I can see any infection spots, but this time I didn’t care. I knew it would all be well. I just knew it. 

A few days later, I went to the doctor’s office. I waited patently for my turn to go back and kind of wondered why I didn’t feel the pangs of anxiety that normally take over. But, instead of fighting the calm, I just went with it. And wow was my intuition correct. My doctor busted through the door waving a piece of paper in his hand, proclaiming, “Did you hear, did you hear?”

Well, obviously, I didn’t hear anything because he is the one who normally tells me news, but I think the excitement overwhelmed him just as much as it was about to overwhelm me. He read my MRI report over and over again with an emphasis on the part that read, absolutely no signs of infection, reoccurring infection, or chronic infection present. Everything was perfect. My bones that were eaten away by the nasty infection grew back. The chronic infection of my bone that was supposed to accompany me for the rest of my life was gone. Just gone. Not a dot, not a spot, not a dark mark, not anything even closely resembling infection. Clarity. That was the only thing any doctor could see. My doctor had my infectious disease doctor double check the report and he was taken aback as well. My frighteningly low survival rate was now increased to one hundred percent chance of survival

And this time, I allowed the tears to flow. I couldn’t hold back the happy tears, it just wasn’t possible. We reveled in the moment and laughed for the entire rest of the appointment. And towards the end of the appointment my doctor said, “Hey, maybe you were just dehydrated from all of the drinking on St. Patrick’s Day.”

I, apparently, just had the flu several times this winter. And because I am not used to a simple diagnosis, we searched and searched for a reason. Believe me, I am much happier to delve into the rabbit hole of what in the hell is wrong with Sarah, than slap on a simple answer. The simple answer was right after we explored the difficult answers and I am perfectly okay with the exploration process. It was all worth the effort.

Sometimes problems just work out in our favor. Sometimes results come back the way we want them to and sometimes, just maybe, they return better than we ever hoped. I’ve learned a miracle is simply a shift in perception. I chose to believe that voice that shed new light on my infection. I chose to trust this new perception of an old and tiring situation. I am not the girl who is used to good news. I am used to bloody battle fields, not never ending fields of grass and flowers and sunshine. Usually, I have to painstakingly plant that grass and those flowers, all on my own, amongst all of the weeds and dirt and blood. But this time, tulips and roses and lily’s of the valley and green, green grass sprouted all on its own, reminding me, all will be well. My body may still be broken and covered in scars. It may still need healing and have open wounds, but it found a piece of gold and it isn’t letting go of it, not for nothing.

We must practice hope and joy and love and gratitude. We must practice them until they are a conditioned response. So conditioned, that even with the worst news, as hard as it is, we learn to face it with peace. We must give life the full court press of positivity, attack it with the positive, and not sit back or accept anything less. And every once and awhile, when the news turns out to be better than we hoped, the practice pays off big time. We can tap into that joy and gratitude in an instant and ride the rainbow to the waiting pot of gold as it shines and welcomes us with open arms. 



And just to let you know...I went out again with these sisters of mine. We drank and laughed and celebrated and I was just fine. I woke up hydrated with love and hope and joy and gratitude, because that’s the wave I choose to ride right now. So, please hang on, the tide always changes, always. It’s just waiting for us to notice that all will be well. Oh, and I have another blood test tomorrow and I know it will be just fine, just fine.


My Irish Dancing sisters. Full circle.




Thursday, July 31, 2014

Ashlea and Sarah Night


There is a greater gift than the trust of others, and that is trust in oneself. Some might call it confidence, others name it faith, but if it makes us brave, the label doesn’t matter for it’s the thing that frees us to embrace life itself.
-Call the Midwife

I think we need an Ashlea and Sarah night. 

Almost immediately, we chose a place, a day, and a time. When the chosen day finally arrived, we sent photos of clothes back and forth, decided on a maxi dress for her and black skinnies and a silk top for me. We met at my house, wrangled a fast a furious escape artist dog who decided to bolt up and down the street, and headed out the door for our Ashlea and Sarah night. 

The night was just like the old days. Ashlea arrives, the picture of perfection...all tall and blonde and stunningly beautiful after three babies and wearing the cutest dress ever...greeted by Sarah, half dressed and with hair half flat ironed. Without skipping a beat, Ash enters and follows me back to my room. I straighten the other half of my hair, put on my shirt and attempt to zip my black, stiletto bootie, but give up because I can zip it on the drive downtown to eat. We do all of this while discussing five hundred very important topics, including Real Housewives, of course. After chasing and catching Belle on her adventure into the next state, we load into Ashlea’s car. Ashlea instructs me to just start pointing in directions at exactly where and when she should turn and exit the highway so we don’t have to interrupt our chatter. As we talk and I point, I throw my leg above my head to zip my bootie. She looks over and sees my foot up by my head and laughs, but only for a minute, because she’s used to legs flying above my head to secure stilettos. She and I have been through it...she knows me. 

We pull up in front of a familiar red door, a gateway into Boca, a restaurant best described best by a local food critic, Donna Covrett, as a building that once housed a piece of Cincinnati fine dining history, ‘but now, somebody has spilled gorgeous all over’ it. In keeping with the jaw dropping decor, the menu, does more than impress, with it’s ‘crazy little caramelized Brussels sprouts, grilled romaine, and the Amish chicken with wild mushrooms, truffle-laced risotto, and a silky chicken jus that, bottled, could bring about world peace.’ 

We enter Boca, the aesthetic beauty smacks us in the face, but the true beauty, the real sparkle, arrives, not in the form of risotto or maple cheesecake, but as a friend, an old high school friend, to be exact. He rounds the corner, smiles the warmest of smiles, kisses our cheeks, and welcomes us as if we were in his living room. Our hostess seats us, in our opinion, at the prize table where the service is a symphony conducted by the most attentive and friendly waiter. Basically, Ashlea and Sarah night quickly turns into Princess night. And we are just fine with it. Tasting plate after tasting plate is plated to perfection and we snap a photo of each one to send to her husband, St. Kyle, who is home with the babies feeding, burping, and eating Pringles. We want him to know his efforts are not wasted. 

The evening progresses and my friend and our waiter do not disappoint. Ashlea and I, with full bellies and even fuller hearts, are overwhelmed with kindness. We don’t want to leave. In fact, we eventually look up from our corner of heaven and notice we are the only two left in the large, swanky, usually buzzing masterpiece. We laugh, finish our cheesecake and decide to head home, full of love, full of light, and full of food. Ashlea pulls in my driveway, helps me out of the car, picks up my black leather clutch I drop in the street, finds her missing phone on the dashboard, and after much laughter pulls out of my driveway and waves goodbye. I take Belle out, on a leash, grab a water, and head to bed. And the best part is, never once, during the entire evening, did I think about illness or paralysis or unrealized dreams. I chose, unconsciously and without much effort, to live in the moment and just lean into having an Ashlea and Sarah night.

And this task might sound easy for most...let go while out with a best girlfriend at a spectacular restaurant where you are treated like Kate Hudson and Julia Roberts...but it’s not so easy for me. If I told you I remember the last time I didn’t worry or fret about every single paralyzed, illness ridden detail, I would be lying. I rarely venture out, without a suit of armour called preparedness. I anticipate the worst and prepare for it. This is just the life of a paraplegic. When taking care of half of the body, one must be prepared for things not going her way and learn to live with it. 

Though, what I haven’t yet learned to live with, is the preparedness that comes with realized dreams and perfect nights out with a friend. I see a full time job as a luxury and simply can’t even imagine something as simple as one, body-drama free night. I simply assume a body-drama free night is so rare that I am not quite prepared for it when it happens...

I am not that girl who gets to dash home from work and throw on her party clothes and head out with her best friend anymore. I am not that girl who decides exactly what she will do each day and does it. My body decides and my spirit learns to compromise and obey. 

However, the one issue constantly up for debate between my body and my spirit is always, always hope. My body might have me believe hope is just a whimsical antidote I tell my poor body when it hits a wall, but my spirit knows it is a way of life. 

Since the moment I fell off of that horse, I expected and believed the life I wanted was just a matter of effort and perseverance. My dream life filled with family and love and dogs and friends and joy was just around the corner and I believed I just needed to keep jumping hurdles and one day the finish line would suddenly appear. But, the thing is, and not just with my life, but with all life, the hurdles are a permanent fixtures. Instead of trying to knock them over or run around then, I finally learned to just keep jumping over them, one by one. Surrendering to the impediments doesn’t make them any easier, it only makes them just a part of the race. I don’t have to speed over them or jump any higher, I just need to know they are there and while they might be obstructions to progress, I can jump them, sometimes barely grazing the top and every once in awhile, I clear the entire hurdle.

Towards the end of our night out, my friend and our waiter asked if Ashlea and I were out celebrating anything special. I almost said we were celebrating her third baby, but then she confidently turned to them and said, “yes, we are celebrating friendship.”

Friendship. This is something I haven’t celebrated in quite some time. I am used to the ebbs of the world of illness. And celebration lies in healthy blood reports or positive MRI results. But, last week, for the first time in such a long, long time, I just was Sarah out with Ashlea. Ashlea didn’t have to swiftly come to my rescue and beat the bathroom door down because some obnoxious drunk girl was telling me to hurry up and I didn’t have to go home sicker than I left. I was able to go out for a night with a friend and celebrate just being friends. 

It takes quite a bit of courage to live both sides of life. I must possess the ability to live through the pain and the heartache and the everything not going exactly my way to get to the parts I always envisioned. And sometimes the parts I held in dreams so long are the scariest to actually live. There is a point when something is so good that it can be so heart wrenching all at the same time. And this is the space in which I currently reside. 

I assumed I was vulnerable enough to release pain and feel joy. I have the pain part down to a science and am tough as nails when it comes to bad news, but the joy part, well, honestly, I kind of stink at joy. 

I can feel open and vulnerable to untethered joy and then the joy starts to flow and I worry I will soften into its comfort and tingly feelings and then I quickly want to shut joy down. I am more vulnerable to pain than I am to joy. As hard as this is to admit, it is true. 

The last few months have been a crash course in untethered joy. I received health news that rocked my world and I prepared for battle and when I arrived and took my place on the front line, I was told the war is over, my armour wasn’t needed, and I was free to be a civilian. Clearly, I don’t have the skills and severely lack the courage for such an adventure. This stage, a stage I imagined for years, seems like it should be the easiest. But, my oh my, to trust I can actually do this...well it’s takes serious work. 

Last week, with Ashlea, I finally let go of a string that ties me down and went out for a night, with my friend, and celebrated friendship. That is all. We had a wonderful time. We laughed until our cheeks hurt, we closed down the restaurant, she woke up with her kids and a headache, I woke up and dashed to an early appointment with a headache. I didn’t wake up with a fever or an infection. I didn’t have a come-to-Jesus meeting with my body. I went to my appointment, worked a little bit, cleaned the house, walked the dog, and couldn’t wait for bedtime. 

This night out was equally a bookend and a new, empty shelf. The bookend holds up all of the books and heavy hearted moments of suffering and depression and illness. And the new shelf is empty, waiting to be filled with new stories. 

I am used to the old way, the history I so recently lived. I cling to the crutches of the past and find comfort and beauty and meaning in the fierce bravery and courageous vulnerability it takes to live with suffering. And now, I dwell in this new way, this new bit of life, where a little bit of ‘gorgeous’ seeped through the cracks and I must find the courage to admire its beauty too. And this type of courage, to see beauty, to feel joy, and not be afraid to live this joy...well it takes an unexpected and different kind of serious devotion and practice and I am willing to work on it. It's just another hurdle, but one I just might clear. 



And to you, all of my sweet reader friends,

I apologize I disappeared. I owe you many more details and pieces of the puzzle. Your loving comments and emails were not unnoticed. I reached a place where I had to begin again, once again, and I stumbled quite a bit this time. I am out of practice with this blog and with joy. I simply blanked when it came time to write anything but scribbles, quotes, notes, and passages. But, just as I did when I fell, when I fought illness and fevers and bad news, I will find the light, dwell in its place, and this time, find the courage to live there.

Much love to all of you...much more very soon,

Sarah

Monday, March 24, 2014

The Puzzle


My last living grandparent, my paternal grandmother, Granny, died just shy of her ninety-fourth birthday. She passed a few days before Christmas. She took her last breath in her own bed, while living in her own home, as one of her three daughters held her hand. Since death is inevitable, the end of Granny’s human experience is about as good as it gets. Granny survived the Depression, wars, raising four children, and giving all she had to several cherished grandchildren. She used to joke that her sole reason for birthing her own children was the assurance of grandchildren. She loved every, single one of us. Granny was a force, a gentle force, who imprinted creativity, toughness, and love on all she encountered; especially those of us lucky enough to be called her grandchild.

When my dad called to inform me of the news, I didn’t cry. I didn't cry because I wasn’t sad or wouldn’t miss her, but because, with my Granny, there wasn’t anything unsaid or unlearned. Christmas night, my aunt, the aunt who so lovingly cared for her during her final years and held her hand as she left this world, asked us each if there was anything of Granny’s we wanted or that was sentimental to us. I actually couldn’t think of one thing I desired as a remembrance. All of my memories are alive in what remains in my own life. The way I so vigorously clean a sink, the way I insist on clean sheets and the proper way to make a bed, or how I set a table. How I know it’s okay to have dessert for dinner every once in a while and the way I cook mountains of food and barely sit at the table long enough to eat it. The parts of her I remember most are the pieces I live each and every day. 

The past few months proved to be particularly rough for me. I am not quite sure why. I can’t pinpoint exactly one thing that forced me over the edge or caused me to lose my footing. The truth is, I asked, begged, prayed for change, and boy did my request blossom. Anything I thought was constant and forever and stable blew up and shattered into a million little pieces. I’ve struggled to collect bits and pieces and find new homes for them over the last fourteen years, but recently, an entirely new box of these pieces spilled all over my floor. At first I thought, oh what a mess. I lived in this space of oh my god what a disastrous mess for quite some time, and then I finally let go and realized the reason, discovered the momentum behind the scattered pieces. Life is a puzzle and I must fit the pieces back together again, no matter how many times they come apart. Each piece relies on another and the gift isn’t in the finished product, it lies in the puzzle, the fitting of each piece to its match.

Granny loved puzzles. We often had a large collective puzzle set up for days on the round, wooden table by the huge window in the living room. During moments throughout the day, we would take turns focusing on a section and piecing together what we could fit. Sometimes we were quiet as we concentrated and other moments we were loud and boisterous as we celebrated a completed corner or the dreaded middle part of the puzzle. When the puzzle was complete we stared at it in awe, but always wondered what to do next. We would leave it for a few days and Granny always offered to glue it and have it framed. I can’t remember if we actually ever did frame any of them. However, what I do remember, is her suggestion, a suggestion I adored, that we take it all apart, destroy it, and start a new puzzle. Pulling it apart piece by piece was more fun than actually putting it together and reveling in the finished product.

As I struggled to determine the source of my discomfort, I figured out new pieces of my puzzle are always popping up, and needing a place to fit. I relax because I complete an edge only to find a new section that begs my attention. Even though I work very hard to overcome my obsession with perfection or the finished product, this obsession can derail me at a moment’s notice. A house that works for me is just on the horizon, but isn’t yet complete. Loose pieces continue to pop up and need a spot to fit. On the other hand, waiting for the perfect fit teaches patience and a confidence I can live in a world that isn’t quite right and has ugly wallpaper and a pink toilet. My health isn’t exactly where I desire it to be, but this creates space for improvement and greater balance. But, the largest piece, the piece I thought I didn’t need, the piece I thought belonged to a past puzzle, an old Sarah, was hidden and surfaced just recently. This piece is called letting go and having fun.

Self discipline is my thing. I thrive on ritual. Mediation and exercise are my lifelines. Eating well and avoiding preservatives and toxins and plastic comfort me. I try not to plan too many events in a row so I don’t get off schedule. The problem is, I live a little bit out of fear. While all of these things help me immensely, I am also afraid to just let go and live a little. I allow my health and my concern for doing the right thing, at the right time, and concern for my body to take over and letting go and just living hides in a dark closet inside of a sealed container. An energy entered my life and shot a gust of wind through me and forced this piece of me to surface. I picked it up, held it for a bit, and decided it needed a place in my puzzle too. Finding where it fit was hard at first. I went out with a few friends, had dinner with a friend, and quickly jumped back into my regimented life. It isn’t that I didn’t enjoy it, I just felt the fear of oh now something bad will happen, and I felt pangs of guilt because I let go for a minute. 

And then a switch flipped. It was time to fit this new piece into my ever-changing puzzle. So, I let go. I let go for the first time in so many years. I brushed my hair, put my boots on, and headed out the door for the St. Patrick’s Day parade and a day of bar hopping with my dancing friends. The weather provided and offered a sixty degree, sunny day. I wasn’t sure how the day would pan out, but I didn’t care. I let go and allowed the day to unfold. And boy did this trust deliver. I didn’t feel one tinge of stress. The bars, which usually make me crazy and feel overwhelmingly paralyzed, were comfortable and fun. My friends ran to grab tables and stood in line for drinks. We ended the evening at a wood fire pizza place, sat outside because we were so loud and laughing so much, and ran into two very special friends. Letting go could not have turned out better. This act precipitated more change and more fun. I let this tiny flame that barely flickered deep down inside have a little air and turn into a blazing fire. I’ve ventured out and stepped outside my comfort zone more in the last few weeks than I have in a long, long time. 

And while I am not quite sure where this piece fits exactly, I know the effort to find its place is rewarding. I now know it’s a vital part of me, a part I thought I didn’t need anymore. I spent today back on my schedule and feeding my soul with my ritual. As I walked my dog at the river, I felt tears falling down my cheeks because I knew this broken mess, found one more part of herself and put it back together again. I also cried because I opened up and learned that even though joy definitely does shine through ritual and discipline and treating my body well, it also radiates through letting go and allowing. The finished product isn’t the point, the discovery of where each piece goes, no matter how painful, is where we find life. And if my puzzle is peacefully complete at the age of ninety-four, I hope, like Granny, I can bust it up and pass pieces out to all of those I leave behind in the hopes they create new and beautifully, unfinished masterpieces. You can’t frame joy. You can’t glue it together and preserve it forever. Joy doesn’t arrive neatly packaged or easily salvaged. Joy comes from a lifetime of breaking apart and coming back together again and then doing so all over again. Joy is a beautiful, untethered mess.

Tuesday, March 11, 2014

My Addiction


Winter, once again, reigns triumphant. I sit here with a notebook and computer full of half written, incomplete posts that seem like drivel. None of which feel worthy enough for my finger to inch up and select and then finally hit the publish button. Forced lock down equals brain block. More than ever, I realize the importance of my river ritual. Outside, fresh air, and exercise feed my brain, but more importantly feed my soul. One day soon, I hope to piece together these fragments of my thoughts, but for now a bit of a reflection, a bit of a hey, I never thought about it that way moment to share. I hope this post finds you all well. And here’s hoping spring forward defines more than a time change.

A few short nights ago, I shared a photograph with a friend. Without a thought, almost as a reflex, I flippantly said, “Obviously, my sister is the one standing.”

I frequently joke about my condition. I would get that for you, but I can’t walk or I would take out that trash, but I can’t walk, are common phrases that fly out of my mouth. I use humor quite a bit; not to nurture the seeds of malice or discomfort, but to grow shrubs over a bit of shame I carry. I struggle to find ease with my limitations. Still, after all of the years, I sometimes feel like a burden or the girl who just sits and doesn’t help because she can’t. I know how foolish this is, believe me, I know. But, then are times, more than I like to admit, when I feel less than, when I devalue who I am. Whether this coping mechanism comes in the form of humor or tears, deprecation robs me of what I achieve, despite my limitations, and only points out what I can not do. 


Until this conversation, with this friend, I thought I was just laughing instead of crying. I assumed I chose light and funny over dark and twisty. I also did not realize how automatic this humor reflex is for me. When I want to say, look I really don’t want to show you this picture because I am sitting in my wheelchair and I hate it. Instead, knee-jerk humor reaction kicks in and takes over. The humor fixes very little. I may change the conversation, but my feelings still penetrate my heart, my mind, and my body. The cover-up is inconsequential. The shame is still alive.

Years may go by, but the strength it takes to point out that I am, in fact, someone else other than the one in the wheelchair, well it’s simply too hard to muster sometimes. I know I can say the girl in the scarf or with the blonde hair, but the chair, it’s what sticks out to me, it’s what beams like a spotlight. The choice of a different description seems futile because, in my mind, all anyone sees is my wheelchair. 

I thought my shame cover continued on quite well, until this particular exchange. As soon as I uttered the comment, my friend shot back, “Hey, no self-deprecating humor.” 

My friend’s response hit me in a place I haven’t been hit before. My humor is a safeguard. Humor explains why I can’t do something or why my life gets just too unbearable sometimes. It covers up insecurity, it guards a soft heart, and it protects against attack. 

While humor is a quick remedy for vulnerability, it is also a thief of confidence. Sure, it’s good medicine when the tears flow so rapidly nothing can stop them. But, self-deprecating humor can also be a dangerous drug. It is a drug I run to often and I am an addict. 

I hope to remedy this addiction. I hope to stop seeing the girl in the wheelchair in photographs and start seeing the girl who cooks and cleans and walks her dog and does yoga and runs errands and meditates and holds doors for others. I vow to see the girl who overcomes and achieves and takes out trash and fixes people drinks. She exists. She exists every, single day. 

So, thank you, friend. Thank you for opening this door. I shouldn’t devalue my efforts or my strengths. It takes quite a bit to show up and pose for a simple picture with friends. It takes courage to allow my true self to transcend my physical self. And for that, I shouldn’t be ashamed. I shouldn’t devalue my efforts. I try, I show up, and I keep on keeping on and there isn’t any shame in that.

This is the picture. I am the girl in between her sister and two loving friends.

Wednesday, February 5, 2014

Baby Will





“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination, full of hope.” 
-Maya Angelou


January 17, 2014 marks a change in my life. A change that arcs towards hope, rather than despair. July 17, 2000, also marks a profound leap from one reality to another, but the arc began with despair and, mostly, but not always, this particular arc leans towards hope. However, without a doubt, January 17, well, this day’s arc is all hope and all love. 

Unless previously scheduled, a baby bursts into this world, purely on his own time. Itineraries and dinner plans and weather conditions are of little concern to him. He comes when he is ready. He accepts little direction and tests patience and determination. He is hope. He is love. He comes when he is ready.

This is the story of Wilson’s arrival into this world. Wilson is Ashlea’s third child. Parts of this particular story are left out and this is on purpose. Much of the whole story is Ashlea's story and only her pieces to share. When I started this blog, I promised to tell only my story, so that I will do. So, here it is...my first birth story...of a dear friend’s baby. 

Friday, January 17, a cold and icy day, forced much time at home cuddled on the couch, gathered around the television, and mandatory pajama day. This winter is relentless and reminds us to respect power of nature and the earth. Hunkered down in my own home, I worked on house renovation details. About midway through the day, I sent a text message to Ashlea. I asked her which window treatments she prefers, roman shades or curtains. Ashlea responded, weighed the difference between roman shades and drapes, and left me sure of the decision. I took out a ball of pizza dough from the freezer, put in on the counter to thaw in time for dinner, and went on with my day. Snow exaggerates entrapment, familiarizes a night in, and urges preparedness. I know this all too well this year. And, then, several hours later, just as I stretched my pizza dough and chose a movie, my phone buzzed. The buzz came from Ashlea. It read, on the way to the hospital. I think he’s coming.

Several months ago, when the air was warm and the grass was green, the nights never ending and short sleeves and tank tops a must, Ashlea invited me to the birth of her baby. This baby, at the time, was a tiny little seed, a little seed of hope, a little far off dream. Yes, he was growing, but he was still just a seed. Over time, as her belly grew, so did his roots. We learned he was a he. Ashlea and Kyle thoughtfully chose a name. Her two kids, Kate and Jack, knew they had a brother on the way. Eventually, he had a bedroom. He had carefully washed and folded clothes. He had wooden letters, spelling his name, delicately painted and secured to the wall. He grew from a dream into a reality. And I promised to be there for his arrival. 

I took this promise very seriously. I don’t get to make promises very often. Promises aren’t something I can easily fulfill. They are abstract and fleeting, at the most. I tend not to make them. I tend to always offer caveats. I know I will disappoint. When the body is in charge, much like a baby and his arrival, time is not optional or convenient. An itinerary or promise is not binding. The body leads and the body wins. I vowed I would keep this promise to Ashlea, but knew deep down inside, it was a long shot. Paralysis and spontaneity don’t really go all that well together, but it was worth the hope. It was worth the effort to try. So I said, okay, I will be there.

Well, baby Will, decided to show up on an icy, freezing night during a cold, brutal, and dangerous winter. My driveway and most of the roads were covered in ice and offered little empathy. After I received Ashlea’s first text message, I packed my hospital basket. I threw in a bottle of champagne, that happened to be in the refrigerator, a few waters, some necessities, and a quilt.

This old quilt that is very special to Ashlea and me. It is special to Ashlea because she used it in a gender reveal video she sent to her parents and sisters. The quilt is special to me because it is the last blanket I slept under as a walking person. A quilt tells many stories, and this blue, white, and orange masterpiece is no different. It holds the final moments of my previous, walking life, and now holds the first moments of a new and fresh beginning. I washed it several months prior, saved it in a plastic bag, and separated it during my move. I actually carried it out of my old apartment, into my new house, as if it was my toothbrush or clothes for the next day. I stored it on a shelf and it patiently waited until I needed it. 

I grabbed the quilt. I put the pizza dough in the fridge. And then I looked out the window. I looked out the window because I, naively, I hoped the drive way would be miraculously clear, but it wasn’t. I sat for a minute in silence. My phone buzzed again. Another update from Ashlea. The baby was on his way. This was the time to act. Honestly, I felt a moment of doubt. I felt impending doom that my injury, my condition, my body might actually pull ahead and force me to break my promise. The ice was too much, the cold was too much, and I felt stuck, yet again. But then, this increasingly all too familiar, wave of determination and hope and life came over me. This sudden jolt of life, flew through my body and refused to leave. It said to me, you can do anything and now is the time to believe it and actually live it. So, instead of retreating into I can’t do this, it is too dangerous. I decided, yes, I know I can’t do this alone. Yes, the odds are against me. And yes, I failed in this situation many times before, but for some reason I know I can do it this time. I know I can do something I actually want to do, something I want to do for someone else. This wasn’t about me, this was about Ashlea, and a promise I made. I know Ashlea understands my limitations, she understands as much as my own family understands. This isn’t the point. I promised I would show up and I was going to show up, no matter what it took to get there. I don't always feel this free from my limitations, so I decided to take each step as a sign. If a particular step on the became difficult or too steep, the plan ends. But, as I do many times, I remained determined to try and try with all of my might. Only this time, it worked.

I put my basket by the front door. The basket placement seemed visionary and I wanted it to sit there as a goal. And then I came up with a plan. I called my dad. I knew he was home. He spends Friday night’s with his friends in his backyard, whether it is snowing or raining or sweltering. When he answered, I shot out my ideas with determination and gusto. Later, he said he heard so much determination in my voice, he knew no was not an option. I asked him if he was able to come over, help me down my ramp, down my hill, and into my car. Right away, he said, yes. And not only did he say yes, but his friend, well his brother, and my should-be-uncle, Ron, said yes too. They were on their way to help. I jumped in the shower and showered faster than ever before. I only did this because I had no idea how long I would be at the hospital. The next day, I previously scheduled an early morning meeting with one of my contractors, to discuss house renovation plans. I decided if I came home just in time for the meeting, I wanted to be ready. I dressed like I was walking again. I never once thought about the legs I have to dress or the awkwardness of pulling up my pants. I just went through the motions, without a second thought. Out loud, I continued to go over what I needed to do next. Get dressed, take the dog out, grab the basket, wait on the porch. I said this mantra over and over again. I realized, about half way through my furry of preparations, I had no idea how to get to this particular hospital. I am kind of a hospital pro, but this hospital happened to be one where I’ve only been once. Kyle, Ashlea’s husband, sent me directions to the hospital room once I was inside the hospital, but I didn’t want to bother him with driving directions. I called my friend Kelly. I took a chance and called her on a Friday night, as well. Luckily snow and ice assures that people answer phones on Friday night. She answered, calmly told me she would send me a text message of the instructions, and reminded me Ashlea needed me to calm down and not panic. A good reminder because I was acting like the one having the baby, for a minute. 

Like clockwork, my dad and Ron showed up in my dad’s four wheel drive SUV. They parked at the bottom of the driveway and turned on the headlights to provide light as we inched down the slippery hill. Dad and Ron dashed up the icy and snow covered driveway on foot, met me at the top of my ramp, took my basket off my lap, and Ron began to push me down the driveway, while my dad carried my basket. My dad also decided to shine his little key chain flashlight, which was the tiniest little light you ever did see, but hey, I was not turning away help this evening. I would take anything I could get. Even a light the size of a dot. Ron carefully slid down the driveway, while tightly grasping the back of my wheelchair. My dad coached us the entire way down and kept a finger on that little light. When we arrived at the bottom, all three of us breathed a sigh of relief. And as we entered the garage, my dad and Uncle Ron went over my instructions. They directed me as how to best pull out of the garage and how to, methodically, head up my steep hill. They told me to call the second I needed help, with anything at all and if they didn’t answer, I was instructed leave a message, and they would call right back. My dad and Ron hugged me, put my basket on the front seat, wished me luck, and Ron said, “Hey, tell Ashlea we love her and I am so happy to be a part of this.”

The way up the hill wasn’t without drama. I went up and slid backwards several times. At one minute, I thought, I am not going to be able to do this. But, instead of giving up, I listened to Dad and Ron. And finally, Ron pushed my car, almost the entire duration of the hill, and I was off, waved out the window, and headed to the hospital. 

When I reached the stop sign at the end of my street, I stopped, called Kyle to tell him I was on my way, glanced at my phone, and saw the directions from Kelly waiting in my text messages. It was as if everything fell magically into place. I sped to the hospital with tremendous caution. I don’t even remember the drive, other than my constant repetition of, main entrance, main elevator, third floor, to the left. These were Kyle’s instructions and, once again, I repeated them. I threw my chair together, put my basket on my lap, and bolted towards the hospital door. Of course, the doors were locked. My life is never without a bit of difficulty. I waved and tried to gain the attention of anyone inside, so as not to have to wheel over the snowy sidewalk to the emergency room entrance. Luckily, a family tried to enter at the same time, and they helped me wave. We caught the attention of someone inside, and we filed in through the doors in no time. I remember a lady in the family offered to carry my basket. And I remember I only replied with my repetition of directions, main entrance, main elevator, third floor, to the left. This family also saw my determination and started opening doors, holding doors, and pushing elevator buttons for me. As I arrived at the main desk, I just shouted, my friend Ashlea, she’s having a baby. I don't really know how to be a visitor in a hospital. I’m rarely the visitor, I usually have a lifetime membership. The nice people directed me and I was on my way. 

The details of this next part of the story are Ashlea’s story, but the part I can tell, is of the moment I suddenly saw my friend holding a baby that was, only moments ago, inside of her. During this moment I finally understood, that the invitation to hope does exist. This invitation is, really and truly, alive and well. It isn’t always timely, but it comes, when least expected. It jumps hurdles, leaps fences, and penetrates walls. I knew the barriers ceased to exist, the moment I saw, the now mother of three, holding her brand new, little baby, in a hospital room. A room that I, previously, loathed. A room that was once a holding cell for me. Only now, the room wasn’t a jail cell, it was a passage of hope, a warm, inviting blanket of love. The room bore new life and a new beginning, for all of us.

A baby is tiny and cute and sweet and gentle and chubby, but what he does most, is act as a fresh start. A beacon of hope. He is a ray of sunshine and a brand new, untainted, beating heart of love. He is full of gratitude, knows infinite peace, emits joy, and only asks for our care and nurturing. And this is a lesson I constantly learn. I can’t expect  joy and love and hope and dreams and gratitude to show up without effort, I must nurture them and birth them. I must be as determined to be a part of them, as I am determined to have them be a part of me. 

And as much as I desire these blessings, these gifts, to show up in my life, I can not force them, either. These miraculous gifts will show up on their own time. I must have the fortitude to go after them when they arrive. I must exhibit enough courage to ask for help, to shout for help, and to believe I will wheel through to door to greet them upon arrival. For it is not up to me when these lovely gifts arrive. It is not up to me how they arrive. These blessing may show up in unusual ways. They may show up on a night that is far less than perfect; A night when doubt runs deeply that I will show up to greet them. My job, my only job, is to be determined to be a part of their arrival. Be courageous enough to be there to receive them. And mostly, to recognize them when they arrive. 



Two weeks later, and I still can't take my eyes off of him. So full of hope. So full of love. 

Tuesday, January 21, 2014

Stuck


I am, literally and figuratively, stuck. Snow falls every other day and then freezing temperatures dominate the forecast, leaving a sheet of ice. And ice doesn’t work so well with a wheelchair. So, I am stuck. This stuck feeling is what precipitated my unintended break from writing over the holiday season. After Thanksgiving, a snow storm pounded my area and forced a season of feeling emotionally and intellectually paralyzed. And this mental strain, in combination with my physical paralysis, fed my frustration and allowed it to take over my life. I did have a wonderful holiday, consumed with party planning and all things holiday. However, I also felt a void. I don’t seem to function very well outside of my routine and ritual.

The ritual I miss most, when I am stuck, is my river walks with Belle. This ritual clears my head and opens my heart. Without this experience, I feel lost and out of sorts. I tend to have mini breakdowns and lose myself quite a bit. In addition to these walks, I do exercise at home. But, there is something about the path, the river, and the quietness of the park that bring me peace. 

Yesterday, the snow melted for five minutes. I packed up Belle and headed out for a walk. Bliss. I felt renewed. My heart overflowed with gratitude. But, then, here I am today inside and wondering if I will ever get outside again. Instead of allowing this trapped feeling to dominate the day I chose to get over it and move forward despite my cloudy head. I decided this stuck feeling is only a feeling and I need to choose a new feeling. A feeling that makes me less stuck and more motivated. And I did it with just starting the day with a better attitude. An attitude that is grateful for this time inside. An attitude that is grateful for the time to accomplish things on my list that seem to always reappear or are pushed to another list for another time. I chose to be grateful for the pause, instead of pining for the play button.

I am currently working on a story to share with you. A story that tells of this past Friday night's adventure. A night I will always remember with great laughter and overwhelming love. I can’t wait to finish it and share it with you. I also fill my days with this house renovation project. The details are buttoning up quickly and I should begin a photo report soon. Please keep up the positive energy. This time inside forces completion of a lot of unfinished details and projects. It also encourages more time in my bed which only aids in my healing process. So I need to learn to be grateful for this time as much as I loathe it. I inch closer and closer to my dreams of a healthy, as it can be, body and a house suited to my needs. I need to learn not to get so frustrated when I hit a bump or stall out for a bit. Every day, I learn something new. Every, single day.

Be back shortly and hope you are very well. If you are cold, please stay warm and if you are warm, please remember to be grateful for the sun. And if you are stuck, be grateful for the pause. It is difficult to hit this button sometimes. Believe me, I know.



And this is what a stuck dog does all day long...after she is ornery, of course. I wish I could find her inner peace.