Just Sit

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

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

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

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

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

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

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

Lessons Learned

"Lord Jesus please don't teach me nothing new today."
-Oprah Winfrey

Life is full of lessons. I experienced a crash course in lesson learning during the past few weeks. I must first apologize for the delay. My life seemed to overflow with stress and tension and then a crash of my body into my bed at night. I slept short hours for most of the days, but the last week found sleep a comfortable and needed antidote. I packed and cleaned and packed and unpacked and worried and unpacked and organized and finally just stopped. I decided the little incidentals can wait and it was finally time to get back to my life. So, here I am. I am back.

The break from my blog was painful. I developed a habit of checking in every so often and it became a much needed release and outlet for tears, happy and sad. It also helped me realize a life about which I dream constantly. A life with regularity and consistency. A life that rolls steadily along, with only a few bumps here and there. And for the past eight months, I almost had this life of my dreams. I ate well, I felt well, I exercised well, and I found time to write, to meditate, to read, to live. I somehow created this idea that I exhausted suffering or pain or glitches. Yes, this is naive and ridiculous, but after a battle, I think many stories are told and many stories are believed. I tell myself, the hard part is over, the new beginning is just around the corner, and life is all downhill from here. I know the cold, hard truth though. I know this is never, ever a reality. I know the bad comes with the good and work accompanies play and somewhere along the line they all seem one in the same, just a never ending cycle called life. I know this, yet I tell a different story when I think I just can't take another day of up and down and up and down. I tell a story of smooth sailing and gentle waters, only to wake up rocked by ferocious waves and high tides. And then after the storm is over, I usually laugh and think, well that wasn't so bad. That wasn't as bad as this or that. Or you've been through worse than this. It's just that as walk the uneven path, I don't feel or see its end, I just trudge though the best I can, hoping for an outcome that isn't so painful.

My life can feel a bit lonely at times. It is hard to be swimming in uncharted waters all alone. I struggle with fear quite a bit. At time, I feel isolated with this injury. I feel not many people understand or see the daily battle I endure. And I don't want people to see the battle so they feel sorry for me, I want them to see because I feel inadequate at times. I fear the effort I put forth is effort that is hard to see. It is effort that largely goes unnoticed. It is effort spent just trying to adjust and achieve every day tasks and anything more is quite impossible. Though, every once and awhile, well, more than once and a while, I am wrong. I am dead wrong. My dad noticed me treading water. He saw as I gasped for air and ran to rescue me. He and my mom came running, pulled me out, and carried me safely to shore.

In one week, together, we found a home, purchased a home, and moved into a home. My mom came over daily to pack up my life, wrap it in paper, and put in cardboard boxes. My dad met with Realtors and an insurance agents and inspectors to make sure I could move in on the exact day I was forced out of my previous home. And as eight o'clock in the morning on that first Saturday in September rolled around, I heard the two moving trucks pull up, one with my dad, two of his best friends, and the other full of three hired movers. The six men loaded box after box and giant piece of furniture after giant piece of furniture. My mom, stationed at the new house, prepared the house for the arrival of all of my stuff. I loaded my car with a few select items, actually a few large bags of items, and traveled up and down that old elevator I grew to love so much for the last time. I pulled out of my garage, the garage I drove into eight years prior sick and scared and weak and half dead, and never returned. I didn't plan not to return. I left my inside wheelchair sitting in the garage as I always did, set up for my return. I assumed I would go back later in the day, to scan my apartment, to say goodbye one last time. But, I didn't. I didn't need to. My dad loaded my lone wheelchair onto the moving truck along with every last item I left behind. I thought of going back to say goodbye, but I just couldn't. My dog was too traumatized from the move and I decided it was just time for it to be over. I loved that apartment. I arrived so sick and left so well. I knew every spot on the floor where I fell, or where I vomited, or where I wanted to give up or give in to my illness. I remembered the day Ashlea and I found the apartment and the sunlight that poured in and the feeling of knowing this was the place I would live, the place I could be sick and maybe, just maybe heal. I decided to allow the memories to run like a reel of the last episode of Friends or Sex and the City or even the Sopranos. It didn't need an end, a fade to black and a semi resolution seemed fitting and appropriate because its story was rocky and incomplete.

The ending of the last chapter is inconsequential. The new chapter started. I have a life in a new home, that is my own, and is a fresh start. This home is not perfect. Only as perfect as it can be for someone with special needs. There are renovations to be done, changes to be made, but it is mine and they are my changes to make. For thirteen years, I have accommodated spaces and now finally, I will accommodate a space to meet my needs. And during this long and seemingly never ending moving day, I practiced on the temporary ramp outside, that was so quickly installed, I watched and listened as my dad and his friends exited the house, my house, dripping in sweat and explaining where they placed my clothes or my shoes or my dog's toys. Each one of these men has moved me in and out of every place I ever lived. Each one has carried box after box and always hugged me afterward sharing best wishes for good luck and a positive journey ahead. And I headed back inside, where my sweaty mom continued to clean and unload and organize my new home and worried about whether or not I ate anything, I sat in the middle of this brand new space and felt so much gratitude, so much love, and so much fear, all at the same time. And as I silently sat, absorbing and internalizing my feelings, I finally saw the lesson I needed to learn, one more time, even though I feel I learn it every single day over and over again. I learned, once again, the choice I have, that can not be taken away from me, special needs or not, is the choice to choose love. It is the choice to choose gratitude. It is the choice to flip the negative into a positive and to see the miracles. I see my dad who does everything he can so I am safe and comfortable and my mom who tirelessly comes over every single day to pack and unpack and clean and walk the dog when I am just too tired. I see Katie and Trey giving up a Friday night to pack up my stuff and I see Lisa and Kerry and Kelly and Krissy coming over to clean and unpack and carry boxes from the basement. And I see all of your comments and well wishes and advice and love. I see all of these efforts and see the miracle. And it reminds me that in the darkest hour, when there doesn't seem to be any hope left, when the sky seems so dark, there is a light that flickers in the distance and only grows as the ship of salvation approaches. This ship isn't always the exact ship I think it will be. It doesn't always appear when and how I want it to appear, but it sails towards me, begging me to climb its ladder. And the choice is mine. I can set sail on a new adventure and experience whatever seas lie ahead or I can choose not to. And I always seem to hop aboard, with whatever aid or accommodation I may need and set sail in the direction of hope.

I sit here, as I write, in my new home, at my old marble table, with my dog, who has finally adjusted and is currently sprawled out peacefully on the floor as the heavy rain falls above and feel only gratitude. I am tired, but I am safe and I am home. And as I pray tonight for the day ahead I say, Lord Jesus, please don't teach me nothing new today. All the while knowing, this isn't a prayer that is ever answered and for that I am grateful.