By Dean Bathalter
Editor’s Note: Dean Bathalter was a member of the HSP online community for several years, offering a steady stream of wisdom and wit. She passed away from cancer in April 2003 and is missed by many. Dean used the alternative term for HSP of Familial Spastic Paraplegia – FSP.
I was thirty years old and had just delivered my second child when I noticed difficulty in descending the basement stairs. While doing the laundry, I began wondering: Could I be getting the same thing my father, grandfather, two uncles, a great uncle and a distant cousin has? Could I be in trouble? And my children? Surely not, I thought. The cousin is a female and maybe she has a DIFFERENT problem. No, I think this is just a problem the males have.
Five or six years passed and by this time I was finding it more comfortable to descend stairs by holding onto the rails. And when I crossed the street, I had to wait on the curb 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 sound of the horn would cause me to freeze, right there 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 HSP. He talked to me for about five minutes and said, "I don’t know what your problem is, but it is definitely not HSP."
Great. I was elated. Now that I knew I was safe, I would forget all those fears and get back into my worry-free world. I would be OK; it was the fear that had been causing all that stiffness in my ankles and legs.
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 ball games, church, shopping, etc., unless I was with a group. If I was surrounded, I was as loose as a goose. But when standing or 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. A salesman was walking with me and followed me into my office and went back to talk to my boss. "Doctor," he laughed, "Your bouncing little secretary knows how to fall. She came down flat on her face." The doctor (an optometrist), called him into the office. 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 could see that I had a problem, but here I was, still doubting it.
I saw a neurologist. 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 those big house shoes. I told the two doctors that the shoes were too large, but they wouldn’t listen. The young medical student was being instructed on where to put the needle into 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 yelling that I was going to slip out of those shoes and slide off the table. 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 to the floor, 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 HSP 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 a muscle relaxant. 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 count yourself 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 his shoulders forward to be able to take a step. 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. I concluded that if I must cope with this problem, then I would walk as my grandfather had. So I began pushing my knees back, with every step. Practiced it. I was determined that as long as I could walk, it would be with straight legs.
I began taking the medication, and boy was I experiencing relaxation. So much so, that I was always anxious for nap time. Then a few days later I went to a dinner party and while going across the floor, the carpet jumped up and caught my toes. Again I fell. A few of the guests played doctor or nurse, while joking about the heavily spiked coke I was drinking. I went along with it, for I was not going to admit that I was taking this strong muscle relaxer because of an inherited disease.
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 placing myself halfway between the frame room and my desk, so I could hold onto the walls and go either way–to help a patient, or to my desk, should the phone ring.
I was finding it more difficult to go to the Post Office and the 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 pitied me, even though he tried to hide it.
My son was now in high school band, baseball, and basketball. I could go to baseball games because I could sit in the car and watch him. But band concerts and 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 with other. I began having to watch WHAT I ate and at what times I ate it.
One Saturday afternoon I closed the office and went to a community fish fry. I had drunk very little and eaten a few crackers and thought I could handle at least half a fish sandwich. But it was so good, that I couldn’t lay it down. And, I had no sooner taken the last bite than the urge in the bowels told me I’d best hurry home. I didn’t make it past the back door entrance. So many of those mishaps I had to contend with, and when I discussed the issue with my neurologist, he gave me the, "Oh, I’m so sorry" look and said, "You can’t go to see the Reds play, can you?" I replied that I could not go anywhere, where I could not sit or stand within an arms reach of a restroom.
Then I had to have a hysterectomy, due to damage done by endometriosis. Two days later I was rushed back to the hospital. I didn’t think I would live to see a future, but I promised myself that if I SHOULD, then I’d make it a point to forget about HSP and live my life the way I WANTED to. But then I was reminded of the many times I had made that decision before, but could not follow through.
I had to have a temporary colostomy. And for six months I did not have to worry about what or when to eat. I found this, at times, to be a good trade off.
A few years later, I was at the point where it was too much trouble to walk from the bedroom to the kitchen to get drink or food. 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 while he worked late. 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 I knew he was worried. I was losing weight: easier to lie in bed than walk to the kitchen and fix a meal.
Then my sister called and recommended B Pollen, for its energy giving power. Bob got the B Pollen, then I got some energy, and he began demanding that I get out of the house, at least once in awhile. He said he did not like to watch me struggle while trying to walk and he purchased a wheelchair.
So now, I could go to the Mall, in the city, if I had a twenty-four hour notice, to be able to prepare my bowels. But I’d have to spend the next twenty-four hours dealing with the effects of a laxative. Yeah, I had a wheelchair, but I was not going to use it here in town and have everyone feeling sorry for me.
I had energy now, but my legs were getting stiffer and my bowels and kidneys had a mind of their own. I did not want to go outside if the wind was blowing. It might blow me over.
A few years later I was a recluse. I would not leave my house for anything, except a doctor’s appointment. Then one day I developed an ingrown toenail and went to see my family doctor. This kind, gentle man, who had guided me through the child rearing years and made late-night house calls if I requested, held my hand and given me advice when I first learned that I had HSP, was now giving me hell with his greeting statement: "You haven’t been out in public for a long time, have you?"
He continued, and I hardly had time to reply to any of his statements as he opened the book of reality and forced me to look at it. For every excuse I gave him, he had an answer. And finally I saw the picture he was trying to show me: I was allowing John and Jane Doe to rule my life. They had neither asked for that privilege, nor were aware that I had given it to them. And while on my dying bed I would be consumed with hatred for these individuals who had given me NOT a life-threatening disease, but just a friendly greeting with a bit of compassion attached.
His message came loud and clear: "Rise every morning thinking of what you CAN do, not what you can’t. Be thankful for your ability to see, hear, and remember your active childhood. Don’t give anyone else’s opinion of your afflictions a second thought. How do you know they have any, anyway. They are probably too busy worrying about their failing heart, or upcoming divorce, or their child’s illness, or their prison-bound relative. Don’t worry that John/Jane Doe is going to take time to think about your problem. And if they should, that’s their problem–they need a life. Now, get out of this funky mood and do something with the life you were given. Get involved in some kind of community activity. Learn to do crafts. Keep those hands busy and the mind on something other than your disabilities. Learn something every day. If you know something well enough, teach it. If nothing else, teach a young child how to make a paper airplane. You will feel better knowing that you’re doing something that will affect other peoples lives in a good way. And when you lie down to die, you will be comforted by the fact that you’re leaving some good memories behind."
"Now, listen to me," the doctor continued, "use Depends and 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, lessons to leave with your offspring, when you pass on. Am I getting through to you?"
I admitted that he had made a point and hurriedly left the office. I could not wait to get back out into a world I had left, many years ago. I got into my car a "new person", seeing the people on the street as exactly what they are–individuals who are consumed with the problems in their OWN life, and having no time to worry about the way I walk. It was a good world now, I liked it and would stay. With a wheelchair, Depends, a few gestures of "excuse me" and "I’m sorry," I would travel this road I’d been given. I would travel it with dignity and ease.
Not long afterward, I saw the doctor at a local restaurant. He smiled and apologized for attacking me with the truth, then added that he had evidently gotten through to me. A few weeks later he was laid to rest. So, it is in his memory that I give you his suggestion:
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.
In Association with Amazon.com Books by Dean Bathalter:
A collection of childhood memories of life on a small Kentucky farm, written in the form of a story to her mother, showing her the "other side" of her memories. Feed-sack dresses, Victrolas, outhouses, coal trains and warm morning stoves are some of the memories you’ll share. Illustrated by the author.
Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.