Dean's favorite posts

Note from Cheryl Schumer, originator of the HSP Website and HSP List: The following messages were originally written to the HSP-L list by Dean
Bathalter. Sadly, she passed away in 2003, but she is loved and remembered by many of us "old-timers" on the list. She had inspirational (and
practical) lessons for us all, and we called her "The Teach". I'd like to introduce Dean to the many of you who never got the chance to know her, by sharing these messages with you. I hope you find them as inspirational as we all did when she first wrote them. Dean's doctor used the term Familial Spastic Paraplegia (FSP) rather than the more commonly used term today of Hereditary Spastic Paraplegia.
 

SESSION ONE Hello everyone,
 

I am new to the list, female, 61, and have had FSP for about thirty years. My neurologist is impressed by the way I handle this problem and my family doctor suggested I write a book for the handicapped and depressed. So, I'll use the net and send you a few quips. I will do this in sessions called, "Dean's Sessions." For the benefit of interested doctors, medical students and you who wonder what's down the road, I'll begin the sessions, starting at the time I suspected I was in trouble. I will share with you the things I have learned (by trial and error) that eliminates a problem or helps me to get around it. I will send the sessions as the urge hits me or when I get the time.

So that you'll have some idea of the person taking to you, I'll describe myself. I am 5 ft. 2, weigh about 120, mostly wheelchair bound, short-brown hair, and with an attitude that DEMANDS the general public to accept me as normal. I am a self-taught artist. I paint peoples homes for them and do a community project called, "Where is it?" I paint a picture of a local scene and the first person to locate it gets the painting free. This makes for good conversation.

I'm a self-published author. In an effort to alleviate the stress for my mother in her golden years, I wrote the story of our lives, back in earlier years, on the farm. The book was for her, but it was interesting to others--have printed the second edition. I'm working on a love story. I'm a seamstress. I design and make most of my clothes and do alterations for a few friends. Once a week I give drawing lessons to a few senior citizens. I crochet Afghans as special gifts and to use when I change color schemes in my house. I use about one hour a day for exercises. You'll LOVE the kind I take. I try to watch a funny cartoon or TV show every day. Laughter is one of our best medicines.

Almost everyday I spend time on the phone, listening to one who is depressed. I'll admit, that irks me: a healthy individual taking my time to learn how to be happy. I give my prescription, "Keep the mind and hands busy creating or doing something to help others," Then I get the reply, "But I can't do anything." Well, I wasn't born with all these talents, but I was born to a mother who kept repeating, with her eastern Kentucky accent, "Kan't never could do nuthin." In my childhood mind, I saw Kan't as a person I didn't like and I didn't want to be like him. So if I saw someone else doing something crafty, couldn't wait to try it myself. Last month I received a call from a young, attractive, healthy lady who was having marital problems. "How" she asked, "do you get your husband to love you so much. He acts like you're the greatest thing to hit this universe. Give me some advice and help me to save my marriage. I replied, "Don't lean on him and make him think that your happiness depends on him or the attention he gives you, that's throwing too much on his shoulders. Get involved in community work. Get into the arts and craft world. Do something to create a world outside his arms that you can bring back and discuss with him. I got the same reply, "But I can't do anything." Well, what ever happened to the idea of learning, or trying to help yourself before asking help from others? She could visit patients in rest homes, (that's a rewarding experience), volunteer at the hospital, piece a crazy quilt top. In yesterday's newspaper I saw the result of her I-can't-do-anything problem, in the divorce column.

Yes, one more thing. I'm a big believer in the pill of communication. So, try to learn something new every day and share the knowledge. Here are some hints you can use, AND share with the general public. I love ferns, but to heck with the reach/stretch required to do the watering. I was watching one fade away when I decided to try something--nothing would be lost. I put a clear-plastic holder under that baby and filled it with water. The fern whipped that water up so fast it sounded like water going down a drain. I filled the holder again. Fern drank more. I filled it again and for the past five years have kept it filled. That baby never gets thirsty, and I never spray its fronds are so healthy and long they hide a lot of my stored, paint and brushes. And this one: I use to work for an optometrist. And one day I was trying to put a screw in a pair frames. For some reason I could not see the head of the tiny screw--could see everything around it, but no it. In a few minutes a tiny flashing appeared in that blind spot. It grew larger and was like a bold of lightening. The doctor could not find the problem and sent me to ophthalmologists. Three told me that it had to be stress. The flashes kept appearing, faster and faster, and I was getting scared. Then I remembered how Vit. A is supposed to be good for the eyes. Quickly got me some. Three days later it stopped and has not again occurred. Since we do not get enough sunlight, I substituted the A for cod liver oil capsules (A & D). THIS part will most likely benefit you: With A&D I no long have sore heels, on back side, and my hips, buttock, shoulders, don't get sore when I lie too long in one position. Gotta go now and make my bed. My husband will soon be home and I don't want him to think I'm lazy.
 

SESSION 2, NOT ME, LORD

Hello.

Before we get serious: Note: I am--and maybe you should be--making copies of these sessions for the children/grandchildren. There could be SOMETHING in here that would answer a few questions. This is my first time to put all this on paper.

I am really too busy this morning to be sitting here typing, but one never knows when they will be zoomed out of here, and when I go, I don't want to leave anything undone--especially this. All morning I have been wondering about how many years I could put in this SERIOUS SECTION. I have a one-track mind and while I was thinking about that, I was doing a load of whites. I forgot to put the jeans in. I substitute an old pair jeans for bleach. Does the job and is less expensive. Then I went to wash my face. Before I knew it, I had covered my face with Cepacol. Bottles of facial cleanser and the mouth wash sit side-by-side. I wonder if one-track-minds go along with this problem.

SERIOUS SECTION
I was thirty years old and had just delivered my second child when I noticed difficulty in descending the basement stairs. While finishing the laundry, my mind was in the wondering mode: "Could I be in trouble? Could I be getting the same thing my father, grandfather, two uncles, a great uncle and a distant cousin has? Surely not. Only the distant cousin is a female and maybe she has a DIFFERENT problem. No, I think this is just a problem the males have." As I went back UP the stairs, climbing ability had not changed, so I had definitely worried about nothing.
 

Five or six years passed and by this time was finding it more comfortable to hold onto stair rails. When I crossed the street, I had to wait until there was no close on-coming traffic. I feared that the driver of the on-coming car might blow the horn at this slow-moving lady. And I knew that the fear (caused by the horn) would automatically freeze me-right in the middle of the street. So I decided that I MUST have a problem and should see a specialist.
 

My family doctor sent me to his friend, a Neurosurgeon. I told him my father had been diagnosed with this problem. He talked to me for about five minutes and said, "I don't know what your problem is, but it's definitely not FSP." Great. I was elated. Now that everything was settled, I would forget all those fears and get back into my previous world. I would be OK; it was the fear that was causing all this clumsiness.
 

Two more years went by with the problem progressing. I didn't want to walk on the street unless someone was by my side. Not necessarily to hold onto them, but to have them absorb some of the staring I would get. I didn't want to go to ballgames, church, etc., unless I was with a group. Surrounded by bodies, I was as loose as a goose. Standing/walking alone, I was tight as a door spring. Then one day, as I was coming from the post office, I fell on the sidewalk, flat on my
face. A salesman was walking with me and followed me into my office. "Doctor," he laughed, "Your bouncing little secretary knows how to fall. She came down flat on her face."
 

The doctor called him into the office and I heard him tell the gentleman not to laugh, that he thought I had a physical problem. That was enough. The doctor and probably others THOUGHT I had a problem and here was I, thinking, dreading, but NOT knowing. I saw a neurologist and he examined me. Did a spinal and let me tell you, that was an experience. I lay there on that little center-legged table with my feet in these big house shoes. I told them that the shoes were too large, but they wouldn't listen. This young medical student who was using me as his first, was being instructed by his senior--on where to put the needle in my spine. Finally he found the spot, put the needle in but I didn't feel it. The table I was lying on began tilting. I kept telling the doctor that I was going to fall out of these shoes. I wound up having to keep my toes pulled toward my head to keep my feet in those holders. I could just see myself sliding off that table, taking with me the doctor and all the instruments he was using. I'll never take another spinal unless they use smaller shoes/holders.
 

Anyway, the doctor diagnosed FSP and asked if I would talk to and walk for some medical students. I did. A month later I visited the doctor in his office and he wrote me a prescription for, I think it was Liorasel. As he put the top on his pen he said, "Dean, if you spent a day in this office and saw the problems that come in here, you would feel like you're lucky. Now I'll see you in about a month."
 

I left the doctor's office searching my mind for a little of my "I can handle this" attitude. Couldn't find it. All I could see was my father walking up the aisle at church. Everybody staring at his bent legs and the way he had to push shoulders forward to bring legs up. His expression showing embarrassment and the wish that everybody would find something else to stare at. It was a depressing picture. I switched the focus to my grandfather. He would walk up the aisle with straighter legs, a slow gait, looking somewhat like a robot. On his face would be a grin saying, "Hello everyone. Nice day isn't it." Few, if any, would stare. (He worked and was on his feet until a few months before his death. Died at 67.)
 

I concluded that if I must cope this problem, then I would walk as my grandfather had. So I began pushing my knees back, with every step. Practiced it. I thought the problem was TOTALLY in the legs. I began taking the medication. Two days later went to dinner party and fell. Embarrassed again, so decided there would be no more parties like this (I had not drunk anything.) And decided I had better not not build up the dosage of this medicine too fast.
 

As the years passed I became less efficient at my job. I would send patients into the frame room alone. "What do you think about this, Dean?" or "Could I get this frame in gold?" were questions that would force me to go into the frame room. So I began to place myself there and be ready for the patients when they came from examining room. But there was no phone in the frame room. I was finding it more difficult to go to the Post Office and bank and was constantly coming up with excuses to get the doctor to go himself. The doctor was a friend and a very compassionate person, and would help me to work around this, but it was difficult to work seven hours a day, aware every minute that he was pitying me, even though he tried to hide it.
 

My son was now in high school, band, baseball, basket ball. I could go to baseball games because I could sit in the car and watch him. But band concerts, basket ball games: to attend THESE, I had to have someone by my side. I would hold onto their arm with one hand, and use a cane in the other. I had before gone to a game alone and had needed to go to restroom. I got up and after three steps, I froze. I had to think fast--I didn't want to call attention to myself and have my son's friends parents asking questions. So, I bent and rubbed a knee, looked up into the bleachers and quickly motioned for a friend to come go with me. (Luckily, I knew 90% of the people at the game. It's a small town.)
 

That was the last time I went alone. I was at the point now where it was too much trouble to walk from the bedroom to the kitchen to get soft drink, etc., I didn't have the energy. So I spent most of the day lying in bed, wondering why I had been put on this earth and what I could do to prove to my husband that I was OK and did not mind being home alone. I made it a point to have the house in order and a smile on my face when he came home, and tried to hold interesting conversations. But he knew I was lacking in energy.

Then my sister called and recommended I try B Pollen, that she had seen the results of it's energy-giving-power. So I asked Bob to get me some. He demanded that I go with him and make sure he got the correct thing. We got to the mall and he suggested I use a wheelchair. Didn't want to, but I agreed. Now, I felt a LITTLE freedom--I could could to another section of the store by myself, and I could turn him loose to do the same. I loved this, so on the way home, we purchased a little foldable chair. Now, I could at least go to the Mall, but I wasn't going to use the chair here in town and have everyone feeling sorry for me.
I found the B Pollen granules at GNC and started taking/eating them, starting with aspirin-size amount. One week later was feeling more energy. Kept increasing until one 1/2 tsp. daily. Taken before noon, didn't want too much energy at bed time. I keep this on hand, always (It gives ME energy and stopped the graying process.)
 

I had energy now, but things were getting worse. I did not want to be outside if the wind was blowing. Fear of it blowing me over. I was FULL of fear. Then one day a deep snow fell. I put on the winteries and went out to play. It was pure heaven. My legs felt as loose and as easy to move as they had been 20 years prier. A few years later I was a recluse. I would not leave this house for anything, except a doctor's appointment. Then luckily, I developed an ingrown toe nail and visited an elderly, country doctor.
 

The doctor was filing the top of my toe nail and asking question I didn't want to answer:
        "Don't see you out much any more. Why?
        "Because I don't want people to feel sorry for me.
        "Why SHOULD they?
        "Because of the way I walk. And they ask questions that I can't answer.
        "Why can't you answer them.
        "Because I don't know anything about this problem. What causes it or how long it will be with me, or if it means premature death.  And if you confess that you don't know about your physical problem, people think you're a little nutty, because you're not well informed.  If I could tell them it was Arthritis, they would accept that and shut up.  But the minute I say "FSP", I immediately see the look of "OH, you poor thing. Now I'll listen while you tell me all about it."  What I WANT to tell
them is to get the heck out of my way.
        "You don't want compassion, therefore, you don't give any. Right?
        "Well, yes. I do feel sorry for people, but I try not to show it, by staring, and asking questions.  I only ask if I could help in any way, or if someone appears to be in a lot of pain, I ask if everything is alright. I try NEVER to give anyone an opening to discuss their latest surgery, or to tell me of all their aches and pains and the fact that their doctor took such and such a test...and on and on.  I try to stay clear from those people. I run from them. And I don't want people to put me in the same category and run from ME.
        "That shouldn't keep you from getting out and socializing.
        "You just don't understand.
        "Well, I understand this.
        The doctor got off the stool and sat down in his desk chair.  He took pencil in hand and pointed it at me. "Dean, when you lie down to die, you are going to HATE  yourself for allowing so much of life to get away from you. And if you should be given a death sentence due to terminal illness, you'll have a long time to lie there and think about this.
        I quickly remembered how a few years earlier I had been rushed to the hospital with my main thought being: There is no way I can come out of this, but if for some reason I should, I will make sure I get back out in the world and live life as I'd like to. But then, across my mind ran the picture of me, the first time I tried it.
        "And", the doctor continued, "this is when you want to recall GOOD memories.  Now, if you're uncomfortable with the way people watch while you're walking, then get a wheelchair.
        "I have one, but I'm not supposed to use it because I need to walk to get the exercise.
        "Well, maybe your mind needs more exercise than your body does. For your mind controls EVERYTHING.
        I was wishing this doctor would dismiss me. I was getting uncomfortable with his lecturing, especially about mind control.
        "Sometimes," he continued, " a speaker--especially if he's new at this and has a big audience--will open his mouth to begin his speech and cannot say one word.  So you see, everybody experience bad situations due to mind control. So, let's exercise yours and convince it that you will not be controlled by people's stares and questions.
        "Now," he continued, "use that wheelchair and get out of that house. You know, life is like a merry-go-round. And you're supposed to stay on it until you leave this earth.  You have to get off occasionally to recuperate from an illness or an operation, but you're supposed to jump back on again.  Well, you jumped off for no good reason, and are refusing to get back on. There are things out there to see, to experience, to learn, these to leave with your offspring, when you pass
on. Am I getting through to you?
        "Yes, I understand what you're saying, but....
        "But," he said, "is the word that broke the camel's back.  And it's not doing you any good, so don't use it.  Don't think it. Make a decision that you're going to get out of that house every chance you get. And when you're not doing that, I want you to stay busy doing something. Do crafts, get pen pals, learn to do something new. Keep that mind busy and don't let it think about FSP and it's disabilities. And when someone asks questions, give them an answer you're comfortable with and go on. Go ahead, tell them it's Arthritis. We're dealing here with your peace of mind not John/Jane Doe's right to know.  And if they SHOULD use their precious time to dig deeper, that's THEIR problem: they need a life. Now, I've got to get home and rest my back, it's killing me.
       

The doctor left the room and as I was reaching for my canes, another memory flashed: What kind of impression of myself am I going to leave with my children? Will it be like the one my father left with me, the facial expression of "Why me" and "I'm just going through this life because I HAVE  to." and the constant looking-into-space. Then I began wondering how I could leave an impression like that of my grandfather: "Life is great."  Then I recalled the difference in their life styles.
Dad would come home from work, do the needed farm work then go into his quiet world, never telling us of something he might have learned that day, or, hardly ever, trying to learn a new project, or reading anything except for the Bible.  Granddad was constantly learning how to do this or that. And magazines were always at his side.  He could tell any neighbor what kind of cow, pig, horse would be the best buy this year. And the neighbors came asking. Often stayed longer than necessary.  Yes, granddad smiled, showing acceptance of his situation and his old adage: Take what you have and do the best you can with it.  And this impression was the one I desperately wanted to leave with my children.
       

The doctor came back into the room and said, "now your toe is going to be alright, I can doctor IT. But YOU will have to doctor the FSP. Your Neuro can give you good medication, but he cannot do for you what you, yourself, can do.  Go now and think about what I've said. If you take my advice, you might someday--(while shopping in your wheelchair and smiling through your difficulties) help a young person accept the sentence of life-in-a-wheel chair.  Wouldn't that be a good memory to take to your death bed?  Think about it."
       

And I did.  I came home, released my helper, got back into the car and drove back down town. I cannot explain the feeling. It was like I was in a different world. A world I had once known, but had left it, left it to everyone else. But I wanted it back.
       

I drove by a once very familiar restaurant and wanted to go in, but I didn't have the w/c with me.  I would fix that problem.
       

The next day, I took a friend and purchased another chair to keep in the trunk. But then I had the problem of asking people to lift if from the trunk. I would fix that problem.
       

We bought a small van, Nissan Stansaz, with a sliding door on the driver's side. I strapped one of Bob's belts to the head rest. Now, I could put an arm through the buckled belt and could steady myself as I lifted the chair from the back seat, then put it back in again. I was in gear and I was going to go out and meet the world again.
       

I did, and boy was it great. Just like I had left it. And you KNOW the rest of the story.

I dreaded writing this last session. Dreaded recalling the memories of my father's life. It's difficult for me to recall the good memories of him because I cannot blot out the view of his expression.  That expression was depressing, and I try to, if possible, stay clear of anything that depresses me.  But I wanted to write it, in hopes that it might help you to LEAVE BEHIND GOOD MEMORIES OF YOURSELF. It's the best thing you could leave with your children.

And for you who have not yet accepted the wheelchair as a way OF life, accept it as a way TO life.  I advise you to get in it now and go. Don't miss out on one single thing life has to offer.   And while you're handling YOUR situation with calm and dignity, you could be helping others to accept THEIR misfortune.

I have tried with these sessions to show you what (most likely) lies down the road for you, and to give you the Country Doctor's detour.  When you get to the forks in the road, remember these sessions. I will probably never see you or know how they affected you, but I will sleep well at night, knowing that I tried to help you. And THAT'S A GOOD THING.

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