Monday, December 1, 2014

Arm in Arm

Negativity and cynicism pervade the world right now. There is a far greater focus on which side to choose, rather than how we can identify and walk with our brothers and sisters; even with those brothers and sisters with whom we disagree. 

Our bodies, skin color, abilities, cultures, religions, or politics all may differ, but what is common is our ability and desire to love and be loved. Our hearts are all the same.

Yesterday, I watched this father and son walk the entire path along the river, arm in arm. I noticed they kept one pace, regardless of the speed. I listened as they laughed, cried, discussed, and enjoyed moments of silence together while remaining in step and arm in arm with one another. They refused to allow their differences in speed and ability and age to invade their connection. Runners, bikers, and groups of other walkers all sped past them. They didn’t flinch or waiver. The father held on to his son. The son held on to his father. And together they continued to walk, arm in arm, sharing one stride, proving love really does exist. 

Thursday, November 13, 2014

I did it

As long as six months after my accident, I looked at the freezer, then the cupboards and panicked. I wanted a glass of ice water and lacked the necessary confidence and courage to perform such a straightforward task. My brain swirled with confusion as I attempted to concoct a plan. The mission seemed simple enough, but as with most previously simple undertakings, I froze. I questioned my skill to reach for a glass while sitting in a chair with wheels, transport the glass all the way over to the freezer, reach, again, this time for ice, carry the full glass of ice, and finally, fill it with water. I never fathomed the immense detail that lives in a glass of ice water. 

Eventually, after much repetition, I bravely defeated the ice water challenge and, now, as my mom teased the other day, I have glasses of water in every room. Occasionally, a full glass tumbles to the floor and ice and water spill in puddles all around me, but I pick up the glass, clean up the water, and try again. 

Over the years, I learned to attempt all of my new challenges with a similar approach. I assess the situation and formulate a plan. The tinge of fear still lingers and I learn to strive for my goal anyway. If the coffee beans are on the top shelf of the grocery store, I collect a hothouse cucumber and a roll of tinfoil to help slide the beans off of the shelf and catch them in the waiting basket that sits on my lap. Butterflies still flutter in my stomach each and every time and that is okay. And when I can’t, just can’t, reach or do something, I learn to gain the courage to ask. None of these things comes without practice and patience. 

Practice and patience. Practice and patience permeate my life now. Practice allows me to move ahead with fear because, after all, it’s just practice. And patience allows me to know I won’t always get it right the first time. Both of these build courage and confidence. I used to think courage and confidence were just born in people. Now I know, I must practice courage and confidence and exercise patience when I feel defeated. 

Last week, I joined Ashlea and her family for dinner at Ashlea’s house. Her mom came to town for a visit and invited me to join her family for dinner. The usual buzz of conversation and howling of laughter filled the air. Kate, Ashlea’s daughter, pulled out every school paper and drawing she ever created and Jack, Ashlea’s oldest son, gifted his grandma with a necklace that was really a dragon. Apparently, you can’t wear a necklace that is a dragon. We learned this very quickly when his grandma tried to wear the dragon, as a necklace, and Jack’s eyes welled up with tears, because it is a dragon, not a necklace. Amidst all of this beautiful chaos, I asked Ashlea what I could do to help. And she quickly responded, “Hold the baby.”

That I can do. Will, the baby, and I sat in my chair and played. He is teething and I made sure to keep his teething ring in his sore little mouth. After a few minutes, I heard a voice say, Will needs a diaper change. Without any hesitation, I said I will do it, and headed in the other room to change his diaper. Kyle brought in the basket of diaper supplies and I went to work.

I've changed many, many baby diapers. I have the routine down and never really think much about my rhythm. That is, until I had my accident. I was petrified the first time I changed a baby’s diaper after my accident. I religiously checked the brakes on my wheels just in case I slid backwards and pulled the baby to the ground. I held the baby with one hand and noticed my hand was shaking. I worried the entire time if my balance issues would cause me to slip and drag the baby to the ground and then roll over him. The horror film of everything that could go wrong ran on a constant reel in my mind. It was an utter disaster. I swore I would never try to change a baby’s diaper again, for about five minutes. And then I tried again, and again, and again. Each time progressively felt a bit easier, but I still felt the pangs of the what if everything goes wrong fear. 

Will and I were alone in the room next to the kitchen. I knew Kyle and Ashlea were just feet away from us, so I assume this is why I didn’t hesitate to change his diaper. I just started my routine. I talked to Will the whole way through and he tried to grab anything and everything with his cute little chubby baby hands and promptly put latest treasure grab into his aching mouth and chew on it. Consequently, I spent most of the time prying out ridiculous items from his mouth. The plastic from the wipes container and the edges of loose diapers were among his favorites. I tried to explain to him that babies don’t play with and chew on plastic, but my wisdom was lost on him. Finally, I snapped his tan, corduroy overalls back together again, put his little socks back on his tiny feet, and scooped him into my lap. And in the same moment I felt the perfect weight of his squishy Buddha baby body land in my lap, I also felt a jolt rise from the pit of my stomach to the top of my head. I did it. I sat with Will for a minute and whispered to him that I did it. I changed his diaper and I didn’t think about my wheels or my balance or his body position or his body crashing to the floor and my wheels running over him. Not even one time. I changed his diaper, just as I did a million times before. I made it. I hugged him and thanked him for his patience and distraction and we wheeled back into the kitchen together as a team. I did it.

After my accident I was so lost and so confused. I couldn’t even figure out how to get a glass of ice water. I felt like a stranger in a foreign land. Everyone around me was able bodied and seemed to think he or she had all of the answers. Suddenly, everyone knew how I should be doing things in a wheelchair. I felt like a big failure most of the time. And then one day I realized, all of these people handing out advice and you shoulds and don’t do this and don’t do thats were able bodied. They weren’t experts on living life in a wheelchair. I was. I was the only one who knew how to live in this chair. I was the only one who knew how it felt to rely on a chair with wheels. And even though it scared the light right out of me, I was going to have to figure out how to navigate through the dark, all on my own. And then I realized something else, I wasn’t a coward for trying and failing. I wasn’t a failure because I suddenly had to learn how to do things all over again. Yes, I was more vulnerable and exposed than I was comfortable with, but that also, somehow, made me brave. This feeling, of being so new to the world, gave me a sense of courage and confidence I never knew before. Life was a blank slate. I had the chance to start from scratch and learn my lessons my way. And the most wonderful thing about this new chance is that I get to experience new things every single day. Fourteen years later, I still get to plop a baby in my lap and feel the rush of, I did it.

I now live in a world where I just show up, even when it scares me. If I feel a bit of fear, I go ahead and exercise a little practice and patience anyway. I will figure it out someday. My life is now like that cup and that freezer. I may stare for a quite a long time trying to discover how I will navigate through the abyss, but I always, always try to forge may way out of its dark tunnel. And if I don’t make it out, well, I've learned the power of vulnerability. It’s absolutely okay to be all of me. Including the part that just can’t do some things and including the part that exceeds the goal of what she ever thought possible. I may fail, the ice may come crashing to the ground, and the babies may slide a little bit, but I try. I try in my own way, on my own time. I take the aching fear that says, I can’t, and I raise it a little learned courage and confidence and say I can. And every once in a while, I get to say, I did it. 

Tuesday, November 4, 2014

I voted today

I voted today and while I wheeled up the long ramp leading into my polling location, the throngs of volunteers cheered and clapped for me. One man shared the reason behind the applause. Simply, the volunteers were happy to see me show up to vote. He said he knew it wasn’t easy for me to show up and they wanted me to know they were proud of me. Because the voting area lived in the basement of an old church and the church is under construction, another kind man escorted me through the construction area to the elevator. I noticed we entered through an emergency exit only door and, at the time, I didn’t really think much of it. After I voted, I made my way back through the construction zone and opened the emergency exit only door. A few seconds later, I saw a mom and her son walking down the flight of stairs. Nursery school ended for the day and they were on their way out, too. I was a few feet in front of them and heard the little boy begin to ask, “Hey mom why is she...”. And then his mom quieted him. I assumed he started to ask why was I in a wheelchair. Obviously, his mom and I shared the same assumption.  I know she reacted the way she did in case I was offended. I turned around to explain I didn’t mind the question and would be more than happy to answer his innocent question. But, before I was all the way around, the little boy, as three-year-olds often do, ignored his mom and shouted his question again. Only this time he finished it. He shouted, in his perfect three-year-old voice of authority, “Hey Mom, why is she allowed to use the emergency door, that’s a no, no, you know?” Not once did he ask about my wheelchair. I am not sure he even noticed my chair. I used a door that wasn’t allowed to be used. I am his equal and shouldn’t break the rules either. No special treatment for me, he and I are just the same. I wish we could all see through the eyes of this child and these adults. I think the world would be a much better place. Although, we might just all have to follow all of the rules. 

This quick adventure taught me a huge lesson. I saw both ends of the spectrum. I was honored by adults who know what hard is and I was honored by a child who sees me as his equal and I am honored to have witnessed both of them. 

Monday, October 13, 2014

She Dreams My Dreams

Life is not a competition. There is enough for everyone. We are here to live in service. We are here to lift up our sisters and our brothers. Our pain is her pain. Our loss is his loss. Our love is her love. Our dreams are his dreams. Most simply put, our only job is to see ourselves in another. We must see that innocent spirit that resides in all of us who longs for love and who begs for forgiveness. Because, in the end, in God's eyes or whatever you call it, we are all worthy, every single one of us. And our dreams, well they are all valid, each and every one of them.

First thing this morning, I received this text from Ashlea. I am lucky to call her friend. This is not a humble brag, this is an example of how to live. Ashlea is an example of how to live and the friend we should all be to each other. She dreams my dreams, literally. I will practice her example and dream for others as I sleep tonight. I hope this message encourages you do you the same. As the person on the receiving end of such a gift, I can only tell you, it lifts, it lights, and it only encourages the urge I have to dream and hope and extend love for others. 

Tonight, I dream your dreams. 

What you can't see, mostly because of space and auto correct is that Ashlea goes on to say this dream is the first thing she thought of when she awoke. Ashlea has a husband, three kids, a dog, and a plethora of other things to think about in the morning. But, what she thought about first, was the dream she had about her friend; the dream she had about another. 

Monday, September 29, 2014

Get On With Your Bad Self

Last week I had a doozy of a day. The day wasn’t rough compared to most of my bad days, but it was a day where everything seemed to fall apart. A regular life, plain old bad day. My list of tasks to accomplish grew by the second. Instead of fewer check marks, I noticed a multitude of list transfers, unfinished to dos from old lists. I glanced at it in the morning and felt stifled by the overwhelming feeling, of god I have so much to do

This anxious, rushed feeling that feverishly tried to gnaw away my inner peace, fed an out of control energy that causes items to break and missed steps. Right away, I broke a glass dish. The dish slid right out of my hand, crashing onto the tile floor. The small, round dish promptly shattered and Belle’s pureed pumpkin splattered all over my kitchen. Orange muck speckled my back splash, cabinet fronts, the floor, and the window. I carefully dodged the jagged edges of the strewn pieces of glass because my wheelchair tires don’t respond well to glass shards. I swept the floor. I wiped down the pumpkin, attempted to feed the dog again, and started the day one more time. I decided be all zen and just start over, press play again, as if the day was fresh. This plan worked for about a minute. I unloaded the dishwasher and cleaned up the never ending trail of dishes that comes with cooking everything from scratch. After all of this cleaning, I was covered in pumpkin and dirty dish water. I thought I should just take a shower instead of trying to clean up all of the orange goo. And as if I was featured in a comedy of errors, I saw my shower bench was a bit askew, chose to ignore it, and paid for this lack of diligence. I lost control and started to inch closer and closer to the bottom of the hard porcelain tub. Luckily, I lifted my half limp, dead weight body to safety and continued the shower. I dropped the soap six or seven times because of course that's what happens when I'm in such a mood. The entire day continued this way, just one thing after the next. I lost my cool on several occasions, but remained determined not to let the hard stuff get to me. 

After the goofy morning, I, finally, hooked up Belle's leash and headed out of the door to the river. I needed to clear my head and exercise always feeds and increases my inner peace. This day was exceptionally hot for this time of year. My body doesn’t seem to do too well in the heat and this walk wasn’t any different. I almost fainted a few times, pushed forward to the end of the walk, and finally crossed the finish line of the long walk.  

The river walk helped my head as we continued on the trail, but once I returned to the car and started to drive home, my head noise started again. I felt anxiety creep back in and anxiety started taunting me with thoughts like, how will you every accomplish anything other than wheelchair care, you rely on so much equipment that you should forget trying to be so independent and what are you doing with your life. The bad thoughts chased me like a wild hyena. I worked to release the thoughts, but gave up, and turned on the radio instead. 

My favorite station was in the middle of a fund drive, so I flipped the channels and landed on a pop station. The music was the perfect medicine. And before I knew it, I was rocking out and singing at the top of my lungs and dancing while driving. We stopped at a light, sunroof wide open and windows all rolled down. I continued my dance party of one. And then, I looked around for some odd reason and quickly noticed this was not a dance party of one anymore. The three cars around me, with open windows and blaring music, had drivers and passengers dancing and rocking out right along with me. I turned bright red, but kept on dancing. The joyful noise and dancing hearts were the perfect remedy for a day gone awry. I escaped the struggles of the day and latched on to the joy. And in this blissful state, I pulled onto my street, Belle jumped into my lap, as she always does, and I drove up the hill to my house, temporarily unaware of the bad day I determined I just recently lived. My car rounded the edge of the driveway and my neighbor’s care giver was pulling up at the same time.

My neighbor, Gerttie, is over ninety years old. In the last few months, she has a care giver that comes in the evenings to sit with her. Bonnie, her caregiver, arrives at the same time every evening and that time coincides with the time I take Belle out before she eats dinner. Bonnie and I always chat for a few minutes before she heads in to Gerttie’s house and then I walk the dog. On this day, she looked at me with the most perplexed, yet excited face, ran to my car window and with her mouth hanging wide open she breathlessly shouted, “What are you doing, how on earth are you driving?”

I chuckled and explained to her that I drive with my hands and use hand controls. Instead of focusing on the why and how too much, she just said, “And with the dog on your lap?”

I laughed again and shared that Belle is unaware I am paralyzed and when she wants to look out the window, she looks. We shared another good laugh, she asked a few more questions, and I started to wave goodbye. And as we were saying our goodbyes, she stared right at me, with the world's largest grin and excitedly exclaimed, “You get on with your bad self.” 

I inched my car down the steep driveway and, admittedly, thought, well this driving thing is just about the easiest part of my day. You should have seen me earlier. I even had a moment, where I thought, you think this is a big deal, you think I am really doing something here, just driving and walking my dog. And then I caught myself, finally. I caught myself beating my spirit to a pulp. 

This spirit I have gets me up everyday, it fought through years of crap, much less one bad morning, and it continues to remind me to keep going. And how did I choose to respond to this one bad day. Well, with a bad attitude because things just weren’t going my way. Instead of honoring her, I started to beat this spirit up and tell her she was worthless and pathetic and would never amount to anything. And once again, as it always, always happens, a louder voice prevailed. This time, the voice wasn’t from above, it wasn’t in my head, it wasn't found in a deep meditation, it came with a huge and loving smile from sweet Bonnie who was completely unaware of her perfect timing. Get on with your bad self. Basically, go on, you are doing just fine, better than fine.

So, I made a promise. I added a new mantra to my ever growing list of mantras. Get on with your bad self. I break a glass dish, manage to clean it up without popping my wheels, get on with your bad self. I fall in the shower and get right back up, get on with your bad self. I attempt the pile of dishes, get on with your bad self. If I choose to rest because my body is tired, get on with your bad self. If a piece of equipment breaks, I get upset, and then I make the best of it, get on with your bad self. If I smile and am kind, instead of a crab, get on with your bad self. And if I just simply make it through the day, get on with your bad self. Bonnie taught me nothing is too mundane for a little encouragement and congratulations. 

Sometimes, the get on with your bad self will congratulate a huge accomplishment and, sometimes, it will be the phrase I use to return my thoughts to sanity. It doesn’t matter when it used, just that I use it and use it for everything. 

Peeling ourselves out of bed every morning to face a day of uncertainty and a life we know is hard is worth a get on with your bad self. We risk broken hearts as we love our friends and family and children and animals and this certainly, even though we know we can lose them at any minute, calls for a get on with your bad self. Showing kindness to every single person we meet, get on with your bad self. Stepping up and choosing to be that person who smiles and holds doors, get on with your bad self. And even when we have a day filled with junk that we just want to file in the garbage pile, we deserve a get on with your bad self. Life is hard. It breaks our hearts and our bodies, but we can’t let it break our spirits, no matter how long the to do list grows. Every moment we choose to be alive and awake and experience the wonder of this life, good and bad, deserves a get on with your bad self. We all are doing just fine, muck and all. So, go ahead and get on with your bad selves.

Tuesday, September 23, 2014

Short, but Sweet

Just stopping by for a minute. I will be back tomorrow with a regular post. I shared this on Instagram and Facebook and wanted to share with all of you as well. Each of you contributes to the polishing of my love lens. Thank you.

When I pause and consciously choose to look at the world through the lens of love, I see it all around me. 
"The soul is healed by being with children."
-Fyodor Dostoevsky

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,


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.