Friday, September 20, 2013

Just Sit

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

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

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

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

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

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

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


  1. I sometimes come across this girl in my neighborhood when I'm out; she is in a wheelchair too, but hers is motorized. It looks as though she doesn't have much control of her hands nor her overall movement, but there she goes, with her dog, in her daily outings.

    I once walked some distance behind her, we were on the same path in the park, shadowed by huge trees. She made a point to stop her wheelchair every once in a while to give her faithful dog a piece of treat. It was clear that she couldn't control her arms and hands properly, and hence was unable really to give the treat directly to the dog -- but the dog seemed to understand this: he sat patiently beside her while she concentrated in somehow being able to drop the treat to the ground. Then, off they went again for a few hundred yards..and then the same scenario happened again, and again.

    This image stayed with me for some time. I don't have any physical restrictions myself, and I cannot fathom how it feels to lose the use of your legs and other body functions, especially when you've had the chance to taste life as a healthy person. I do think though, based on my own struggles with many other losses and difficulties, that acceptance and peace with yourself, however long it might take to get there, are key to some form of "happiness" and the end to misery -- at least to misery on a daily basis. I've taken up meditation, and I try to just tell myself "this is it" - and then "just sit", as you say, even if it is only metaforical for me. This has helped me a whole lot, to not fight my life situation anymore.

    You've been through so much at such a young age too -- but your blog posts clearly show you're processing things in a healthy, healing way. I hope you don't think I'm being too casual or non-chalant about this, but I do think based on your writings that even though you have struggles, your spirit will carry you through, always.
    Thanks for sharing x.

  2. "The more you lose, the more you gain" - how thought-provoking and inspirational. Quite an absorbing and positive attitude that induces. I love this post - your beautiful description of walking with your patient, dedicated little Belle; and your wonderful conversations with your kind and wise neighbor. Thank you, Sarah!

  3. "You're doing pretty good for you." I am going to keep telling myself that. A wonderful mantra. We don't need to compare ourselves to others. You are already carving out a new life in your new surroundings. I can't wait for more!

  4. Beatiful post! And would love to seesome puctures- your dog, your new house, your beautiful self!

  5. The loss of innocence, the suffering, the nature of life I suppose...yes it makes us wiser and probably better people. But the pain and *loss* is so much for any of us to bear. I think it is important not to minimize this. And I wish that talking about loss and pain didn't make our society so uncomfortable. Yes, people don't want pity. But there is compassion and acknowledgment of pain and loss - we can all be there for each other.

    I'm glad your move went well and you're continuing to deal with your daily and lifelong obstacles with an attitude I admire.

  6. I just, last week lost my 100 year old neighbor. We were big porch sitters together. I can't look over at her porch with out smiling and crying! She told me no one sits on theri porch anymore and in the end those are the times you remember the most.. Her grandsons lived in the neighborhood and stopped by for a coke on the way home from school 2 or three times a week. The took great vacations together, but at her funeral all they talked about was sitting on the porch. The day she died we repainted our porch. I hope we are that neighbor someday! (I dont really think I will EVER be wise enough to stop giving advice though!) I love you sarah.

  7. Ditto all of the above. I have a spinal cord injury, and while I am not confined to a chair, movement is WAY more difficult and uncoordinated than "normal". I often tell people when they are concerned if I am waiting or sit while they run around, that I am a gifted sitter. You gave me a new appreciation of my own words today...thank you!

  8. Love this post, Sarah! Some great words and advice. Thank you!

  9. You OK? Missing your posts ;)


Thank you for commenting. I appreciate all of your words.