A few weeks ago I drove my friend to our local movie theater. She has mobility problems and uses a cane so I often drive. That way, if we do not find a handicapped parking space (and there are never enough of them) I can let her off in front of the building while I find a spot somewhere distant. On this particular day the parking lot was very crowded and I had a long walk. Until recently, that would not be a problem. But it is now. And so, by the time I caught up with her I was limping badly and in a good amount of pain. We purchased our tickets and found seats with a few minutes to spare.
After we got settled my friend looked at me and with exasperation in her voice said “Why don’t you go to your doctor, get the necessary paperwork and a handicapped parking tag of your own?”
I did not answer her.
She turned, and looking straight at me said “you think you will wake up one morning and everything will be the way it was. It won’t.” I felt as if she had driven a knife through my heart. But she was absolutely right. A hard lesson without a soft delivery. When I returned home, still smarting from her remark, I thought about what had brought me to that moment.
I remember it as if it were yesterday. September 28th, 2015. The night before I had begun packing for a long-awaited trip to Cape Cod. I had been to the New England coast many times but had never visited the islands of Nantucket and Martha’s Vineyard. And now I was going.
There would be fall foliage, lots of time spent by the water and walking the beaches, two ferry trips including the newest hydrofoil and a chance to explore the protected sand dunes by dune buggy. Not to mention lobster, great clam chowder and authentic Portuguese food. I would be traveling with a friend and it was going to be wonderful!
That morning I woke up, stretched and put my feet over the bed to stand up. Or tried to. The pain was excruciating! My entire right side from waist to foot felt as if someone was trying to pull it out of my body. And my leg simply did not work. I sat there, taking deep breaths to calm myself and figure out what could have gone wrong. I had done my usual exercise the night before. Could I have landed on my leg in such a way as to have caused this damage? I hopped to the bathroom, took two ibuprofen and sat down again. Surely, I thought, the pain would cease and everything would get back to normal in a few hours. But I was wrong. Two days later, having tried all the known home remedies, I was in the office of the orthopedic surgical group that had helped save my hand several years ago. Xrays, MRI’s and now face to face with the spinal surgeon. The cartilage in my spine had severely disintegrated and it was irreversible.
There were steps to be taken to lessen the pain and provide some amount of mobility: physical therapy, pain management and medication, and ultimately if necessary, surgery.
I went to Cape Cod, propped up by mega doses of steroids and armed with pain killers. I promised my doctor that if he could just get me back on my feet for the week, I would be the best patient he had ever seen upon my return. He did and I was. The trip was even better than I imagined; beautiful weather and scenery, delicious food, and a fun group of people. But it was different
I have traveled extensively, both alone and with others. And because I get excited and can’t wait to see what’s next I am usually the leader of the pack. This time I lagged far behind and had to make frequent stops. My friend (the “lesson giver”) told me that when she travels with a group, she “sees a lot of rear ends”. And once again she was right. It wasn’t that people were inconsiderate, although there were a few. They just had places to go and things to do and I was too slow or too tired to keep up. I found myself frustrated and angry. It was hard to imagine myself this way. I did not want to imagine myself this way! And for the first time, I wished I was the way I was.
There were other times when I found myself in that frame of mind. Too exhausted to go out to dinner on the third night, I told my travel companion, with whom I was sharing a room, to go on without me. There was plenty of leftover food in the refrigerator, and all I wanted was a hot bath and my bed. I would be fine and not insulted or lonely. In fact, I was looking forward to some solitude. But she surprised me, saying that she could “accommodate” me and would stay in.
Then she proceeded to sit on her bed, arms folded across her chest and pouting like a 7 year old who was just told she could not have dessert before dinner. This same woman, who had been my friend for 20 years, continued to “accommodate” me for the remainder of the trip. She rode on the handicapped elevator and the golf carts provided by the ferry, and generally behaved as if she were my nurse. And always with body language and an expression on her face that clearly indicated impatience and displeasure. My several attempts to explain kindly that I did not need her to “accommodate” me fell on deaf ears, as did my reminders that she was using facilities reserved for people who truly needed them. I do not think she realized how hurt, demeaned and insulted I was by her behavior. But by the end of the trip I knew that I would not travel with her again, and that our friendship was forever changed. And once again I wished I was the way I was.
It has been 8 months since my spinal diagnosis. And it has proved to be one of the most challenging times of my life. I have worked hard at physical therapy and continue to do the exercises. I meditate. I am aware of the need to have a positive attitude and try my best to be mindful. But it is not enough, and I still find myself waking up in the morning expecting my body to be like it was for my first 70 years. I want to take my brisk morning walk. I want to make my bed and do my morning chores pain free and easily. I want to do my shopping without having to take frequent rest stops. I want to visit my favorite little towns with cobblestone streets. I want to be the energetic woman who was never too tired to get up and go. I wish I was the way I was.
A few days ago I went out to do my errands. It was pouring rain and cold as it had been for several days. Driving down a side road, I saw him. A man in an old beat up wheelchair using his hands to push the wheels. He was wearing cutoff jeans and a tattered sweatshirt. His left leg was missing from the knee down. On his lap was a large trash bag which I presumed held his worldly goods. He had no umbrella, no way to shelter himself. Soaked to the bone, he proceeded down the road.
I drove to the supermarket and parked the car. My body was shaking and then the tears came. A lot of them. Really hard. I don’t think I have ever felt so self-centered, selfish and ungrateful in all my life. And I was ashamed. I have so much to be thankful for. My life is not perfect and my body is not what it used to be. But I live comfortably and all my needs are met.
I don’t think I will ever forget the image of that man. And I’d like to think the lesson I learned that day will stay with me forever. But I am realistic and I know myself well. Acceptance is proving to be a difficult task. I have a long way to go if I am to become the person I want to be. And it’s likely I will never get there. Because, as much as I hate to admit it, there are still times when I wish I was the way I was.
Carole Leskin firstname.lastname@example.org