No Aimless Feet
by Barbara Dimmick and Lynn Hanninen
Nothing Walks With Aimless Feet
Oh yet we trust that somehow good
Will be the final goal of ill,
To pangs of nature, sins of will,
Defects of doubt, and taints of blood;
That nothing walks with aimless feet;
That not one life shall be destroyed,
Or cast as rubbish to the void
When God hath made the pile complete
Behold, we know not anything
I can but trust that good shall fall
At last – far off – at last, to all,
And every winter change to spring
-- Lord Alfred Tennyson
Introduction:
This is a story of hope by an author who is paralyzed from the neck down and cannot speak.
I met Lynn through the internet. She is the moderator of a prayer request site and was a listening ear during a low time in my life. I drew strength from her words of encouragement, especially after reading her home page and learning she is a stroke survivor. I liked what she had to say and was impressed with her writing style and asked her if she had every had anything published.
When I saw her in person, however, I was astounded. It was hard for me to match the bubbly, energetic person I had come to know on the internet to the tiny and still one I saw before me in a wheelchair.
In describing herself, she had failed to mention the “minor” fact that she also has what is called locked-in syndrome, a rare condition in which a person’s vocal chords as well as her body are paralyzed. The individual is left with eye movement as the only means to communicate. In Lynn’s case, she has a laser headset she uses to point at characters on a keyboard mounted in front of her wheelchair. Her computer can manufacture a voice or her comments will appear on the screen in front of her
My first thought was: ‘What have I gotten myself into? I was intimidated by all of her gadgets and felt like a total idiot. I could barely understand how to talk with her and yet was thinking of helping her get something published?' But a still small voice urged me to persevere.
I am grateful to that voice.
It’s been twelve years since my family was told I was locked-in and to expect me to die.
Am I really locked-in? It’s more like the doctors are locked-in to a certain way of thinking and they convince people of how they must be. I have been thinking of all those other disorders and maladies for which people are given no hope. It seems so wrong. It’s a self-fulfilling prophecy.
In 1988, I had a brainstem stroke. I was 27.
My brother John and his family lived in the same apartment complex as I did. It was a lazy Sunday afternoon and I went over to their place to watch television. When I left I was very dizzy and nauseous. I crawled from the bathroom to the phone and called my brother to tell him I was really sick.
My memory is sketchy after that. I was in a vegetative state – it’s like a coma. My eyes were open and I was aware, but I could move nothing, not even my eyes. I was on a ventilator because I could not even breathe on my own. The doctors thought maybe it was meningitis.
I was taken to a hospital in Philadelphia where I was given CAT scans and MRIs and things I don’t even know the names of. They could find nothing wrong: no clots, no aneurisms, nothing. Then I started breathing on my own and got some control over my eyes. I could blink my right eye on command.
So, I was living.
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I heard the doctors whisper “locked in syndrome,” but I didn’t take it seriously. I thought it meant I was paralyzed real bad. It was a huge inconvenience, but one did not die from being paralyzed.
I was fed through my nose (that is gross!) and they put a hole in my neck so they could inflate my lungs every so often, so I would keep breathing and so they could suction out the gunk that collected in my lungs.
My Dad wrote the letters of the alphabet on a board and I would blink or look up when he pointed to the right letter. But I was so looped out on morphine that it was impossible to stay focused for long.
The doctors talked about how to get me off the morphine. The more I came off of it, the more of me emerged. I was just so frustrated because I could not talk. I cried a lot. I cried when I was happy, sad, frustrated, etc., like a baby cries over everything because it doesn’t know how to do anything else.
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I was born and raised in Michigan. When I was 12 we moved to New Jersey and when I was 16, to Pennsylvania. I became friends with a girl in my calculus class. Chris was and is what I call a “real” Christian. We talked about a lot of things, including the concept of what being a Christian meant. I had this vague idea that it had something to do with accepting Jesus into your life.
After high school, I went to Bucknell University. I would get up at 6:00 a.m.., run a mile and then go to the lounge and read my Bible and pray. I asked for Christian roommates and got two, but they did not exactly kindle any desire to know God better. In fact, after one semester I told the school psychologist something about how I might murder them in their beds!
I got my own room and promptly forgot about God.
After graduating with a bachelor’s in psychology, I worked toward my master’s for about a year and then decided to take a break from studies. I found work with a company that managed community residences for the mentally ill. One year later, I had my stroke.
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About a year after my stroke, my Dad got me into a “good” long-term care facility (i.e., a nursing home.) which in my opinion, is a place you’re not really expected to leave until you die, which I saw happen quite often.
For a year, I did not have a motorized wheelchair. I would sit all day in one place. I had no regular attendant, no privacy, and I was pretty much treated like I had the mind of a three-year-old.
The morning shift started with the nurse’s aides getting up twenty or more severely disabled people. The aides worked in pairs because all the people were like big babies.
Breakfast was for those who could eat. I can’t. The day nurse would come pour liquid food into my stomach tube while the aides would take people to the dining room. The aides would shovel food into people who could not swallow well and some were really like babies who refused to eat. I watched TV or read until my first therapy session.
To me, having a stroke was something to really challenge my brain power. I was given the biggest problem of my life and I intended to solve it. I wasn’t going to walk or talk. I had no false hopes of being healed. But I was going to work out something come hell or high water!
At that time I thought that Christians were people who had nothing else to do with their lives and were using religion as a crutch to give their lives some meaning. I did not want to be associated with these pathetic people. I did not want people thinking that since I was paralyzed and in a wheelchair that my only recourse was God. I wanted to scream, “Look, I have a degree in psychology and I’m going back to school! I am not some poor pitiful little woman in a wheelchair!”
The doctors and my family were convinced I could not live outside of the nursing home. There was one social worker , however, who thought I could make it on my own. She helped get me into the assisted living apartment next to the nursing home.
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I decided to go back to school to finish my M.S. in psychology.
I was getting a shower every day and I had an attendant all to myself for five hours every day. Life was looking up!
Here I was, paralyzed from the neck down, in a wheelchair, unable even to speak, going to school and getting my M.S. in psychology. Of course I had days when I was really down about not being able to walk and talk and I had some pretty wild pity parties, but overall I thought I had done really well with what I had to work with and better than a lot of people who could walk and talk.
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I had been at Lehigh for about a year and my attendant had me sitting in my wheelchair doing my hair when I opened my door to get some air (I can move my right arm enough to push a button.) This guy just strolls in and introduces himself.
He was so cute!
He was in the room across the hall and he was studying psychology too. I asked him to help me with some stuff for my M.S. I could not talk but I’m sure I’m smiled. I think I look funny when I smile because the left side of my face is paralyzed. But people have said they like my smile. I did not have my communication device on the wheelchair yet so I could not speak. I had a clear, Plexiglas board with letters and numbers on it. The person talking holds the board between themselves and me so they can follow my eyes to see what letter I’m looking at.
Jason stood there and used that board. Most people haven’t the patience to use that board, and this was someone I had just met.
Somewhere in there, we started talking about God. Jason was in a Bible study. So I told him I was interested in the Bible, too. And I was. But what I was really intrigued me was finding out why this guy was interested in something he clearly did not need.
We talked about Jesus. We went to Bible studies and church and Christian activities on campus. We would rent movies, go shopping, go do other interesting thing. Just stuff.
I think God used the stroke to get my attention and then used Jason to show me that Jesus wants to be my friend.
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My life now? It’s better. I could tell you about every thing that I go through and you would feel so sorry that I have to go through things like that, and you might be outraged by some things and you might cry and feel very fortunate and you might think I’m very brave. If you’re like me, though, you would be thoroughly annoyed by having to read about another “brave woman who has overcome great obstacles.”
After completing my M.S. and making plans to get my PhD, I felt called to leave Lehigh University. I wrestled with God for a year before leaving the graduate program and moving into an apartment.
And this is where I’ve been for the past four years, in a nice little one bedroom apartment in Bethlehem, Pennsylvania. It has a living room, a kitchen and a bathroom. It’s fairly ordinary.
I have an attendant who gets me out of bed, showers and dresses me, and put me in my wheelchair. She sets me up for the day and then she leaves. I spend most of the day, usually, on the computer (I’m an email junky!)
My attendant comes back at night to put me to bed and then she leaves. So, I’m on my own most of the time. I think that is just fine. I do not want someone hovering over me, like in the nursing home.
I usually go to church on Sunday morning. Sometimes I go shopping or to a movie or to visit family and friends. I have a van with a wheelchair lift. I can’t drive myself so my attendant and friends and family take me places.
During the day I watch old movies, or Christian television or something called HGTV. Sometimes I listen to Christian music. Sometimes I like to sit in silence. I am coming to like silence more and more.
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I have just turned 40. God seems to like the number 40. Maybe that is why He called me to be a pastor now. Some people have an overwhelming desire to know everything they can about cars or quilting or skiing; I have always felt like that about God. I want to help people who feel alienated by the traditional church scene. I want to do all the hands-on stuff, like visiting hospitals.
I applied to Moravian seminary and was admitted!
Going to seminary is and will be an experience of faith. If I would let myself think about all the details involved, I would panic. I know I cannot do it on my own power.
I’m writing a book with someone about myself, of which this story is but a small part. I also have a dream of starting a community for the disabled. Not just one home, but a whole community!
I still have pain, anxiety, fear that makes me think about dying. I have good days and bad days, as does everyone. To the extent that I can reflect something of how God works and is, I want you to know me. I’ll die someday, just like everyone else. But God is forever.
I have read about what heaven is like …streets paved with gold and jewels everywhere. No pain, tears, loneliness … People have said that I will dance with them in heaven …
Perhaps. Perhaps they serve best who only stand and wait