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HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
HELLO WALLS! That was the hand-lettered poster I had my partner tape above my bed. Not where I could see it, but where anyone else entering my bedroom could view it. It was an act of desperation to call attention to my isolation, fear and loneliness. The sign is down now, but many of the reasons that led to its creation still exist.
My story begins twenty one years ago when I was diagnosed as having multiple sclerosis (MS). The onset of the disease started years earlier but the diagnosis could not be confirmed until that time. (Today, an MRI, Magnetic Resonance Imaging, can diagnose the disease at a much earlier stage.)
MS is called the "great crippler of young adults" because it usually strikes between the ages of 18 and 40 years old. The disease is more prevalent among women than men for unknown reasons. Researchers have tried for years to determine whether a slow acting virus, heredity or environment causes multiple sclerosis.
It is a disease of the brain and spinal cord (central nervous system). When MS strikes, myelin, the protective coating that covers all nerves, is destroyed and replaced by scar tissue. Impulses which travel along nerves from the brain to various parts of the body allowing you to feed yourself, brush your hair, walk or focus your eyes are short circuited at the scarred areas.
It is not contagious, preventable or a mental illness. It can, however, alter your emotions, causing you to laugh or cry indiscriminately. Some of us are completely paralyzed in addition to having vision, bowel, bladder, speech, or other neurological problems, while others are able to carry on with normal or near-normal activity with periods of incapacity.
On July 23, 1993, the FDA approved the first new drug in twenty-five years for treatment of MS called Interferon Beta 1B. You must have relapsing/remitting MS, and be ambulatory to qualify for the treatment. During the testing, Interferon injections were given every other day and the one side effect noted was flulike symptoms. Scarring of the myelin sheath was also shown to be reversed. There are now several other medicinal options available. The decision to try any of them needs to be discussed with a physician.
Until the Interferon trials no drug had been found to modify in any substantial way the natural course of the disease. Various drugs were tried in an effort to control muscle spasms, tremors, spasticity, etc. Cortisone or corticosteroids are used during an exacerbation to speed healing of the breakdown in the myelin sheath. Their usefulness is of a debatable nature.
There are also individuals using snake venom, bee stings or HBO, (hyperbaric oxygen chambers) to bring about relief or a cure on their own. I've refused all experimental testing so far. (As a Native American, I grew up with more than enough traditional and nontraditional treatments used in the name of a cure).
I have faced some exacerbations with steroids and some without this treatment. The main difference I noticed was the hellish steroidal side effects with the use of this drug. Water retention, mood swings, sleeplessness, hunger, loss of bone density, etc., were a few of the side effects I experienced. Doctors emphasize avoidance of physical and emotional stress, and then they subject you to this type of treatment where controlling your own well being is greatly distorted and impaired.
I have described the diagnosis and prognosis of MS, but learning to cope with an incurable disease is where the real battle begins. Knowing that it is incurable is a burden unto itself. It removes the certainty that with time and medical help you will recover. Many times the disease does go into a period of remission, sometimes for years, months, or weeks giving you a false hope that the doctors were wrong in their diagnosis or that a cure has been achieved.
Throughout my youth I played various team sports, but basketball was the most rewarding. In 1974 I played my last women's softball game, quitting the team because something was happening to my legs. I couldn't run as fast because of muscle strain, and the coordination I so highly prized was deteriorating for no apparent reason.
One of my main interests in life had always been sports. If I couldn’t play I would find an outlet along similar lines. They were just starting to allow girls to play Little League baseball with the boys. The treatment the girls received disgusted me. Knowing the league was short-handed in the umpire department, I volunteered. This way I could see that the girls were treated fairly.
I was the first woman umpire in our county. Women who had been my friends turned against me for daring to enter this male stronghold. Every time I walked onto the field I was greeted with "war whoops." The old discrimination was back two-fold. It hurt and angered me, but it opened the door for other women. It also led to my joining the women's movement. It was time to stop fighting alone.
In 1975 I put all of my energy into fighting for the rights of women. The passage of the Equal Rights Amendment became my fight of choice. It was a new and exciting period in my life. There were conferences, organizing, speaking engagements, travel and rallies. Everything was falling into place and my old confidence was back.
The literary side of me that I had always suppressed was beginning to gain recognition. Articles and poetry flowed with little effort. The world was mine.
In January of 1977 my marriage came to a past due end. It would have ended sooner, but with a high school education and three small children to raise, my options were limited. It sometimes seems easier to take the abuse of one man than all of society.
Sue and I began living together. She was an activist in the women's movement. She helped found the D.C. Rape Crisis Center and was a self-defense instructor. We shared a common bond on many of the issues. The children adapted easily to having two mothers.
In March and October of 1977, I underwent major surgeries involving the removal of both ovaries because of endometriosis. December of 1977 found me having a third surgery to repair my urinary tract, and the loss of two thirds of my right kidney because of the previous doctors' negligence. Then in April of 1978, I had a section of my foot removed for melanoma, a form of cancer. These surgeries and other "stressful" situations led up to my first MS attack.
It occurred in March of 1979. I awoke from a nap with my entire left side numb from my eye down to my foot. My speech and vision were also affected.
The neurologist I was sent to did numerous tests. In secret he told Sue that all signs pointed to a brain tumor. He thought the previous cancer had spread to my brain and that my chances of survival were slim. I was the one supposedly dying, and I wasn't even accorded the decency of knowing from what or when. Sue, of course, told me so I could put my life in order. She was so used to my calamities that it was just one more stream for us to cross.
As the Spirits would have it, the tests proved negative. They then suspected a stroke, but the doctor refused to discuss it with her or me. No doubt his ego was bruised from the first wrong diagnosis.
A month later another exacerbation occurred. Again I lost the use of my left side, and the previous therapy I had undergone was undone. At this time I changed doctors. After a number of tests and my case history, he diagnosed me as having MS.
My one complaint to date is that no doctor of any type has ever told me what I could expect. My theory is that if you have a husband for the doctors to discuss your case with, you will get some details. Otherwise, if they tell you the symptoms, you will immediately manifest them with no man to hold you in check. With various medical books and journals, I educated myself. I had everyone bird-dogging for information for me. (Everyone should research his or her illness as a survival mechanism).
Through all the other operations and illnesses I had remained optimistic, but this time no surgery or medicine would heal me. Nothing, just the knowledge of how insidious the disease could be, just that it was incurable. The old athletic me was a wistful thought from the past, but with constant therapy, I learned to walk again.
In the winter of 1979 and early 1980, I had three more attacks. The first one in December struck my right side. I had learned to cope with my weak left side by using a cane to get around. Now, I couldn't even do that. With the help of a therapist who came to our house, I was able to build up the unaffected muscles and could walk once more.
When two more exacerbations struck in rapid succession, I went into a deep depression. I decided I didn't want to fight anymore and resigned myself to living out the rest of my life in a wheelchair. Between the side effects of the steroids and never gaining and maintaining any progress, I felt my only option was to give in and save my sanity.
Time passed, and then one morning I had to write an absentee note for one of my sons; I found I was unable to hold a pencil or write. My muscles had atrophied by not using them, and now the one skill of writing that I had retained was lost. That day I promised myself that if I was able to regain the ground lost, that no matter how discouraged I became, I would never give up again.
It hasn't been easy, but others can be of immeasurable help when it comes to maintaining a positive outlook. Support can make a significant difference in your recovery. You have to have a reason to live or fight; everyone needs this.
The hardest part of an illness can be in the way that your mate, family, friends or strangers react or respond to you. All of a sudden you become a freak or someone no longer recognizable. You're still the same person but somehow all that is seen is your disability. People avert their eyes as if they are ashamed that they are still walking around. (Believe me when I say that everyone is temporarily able-bodied).
Please continue to smile when you see us out and about. It won't be misinterpreted as mocking. Don't use a double standard in reacting to a handicapped person; we have the same feelings as anyone else, and we don't want preferential treatment. It's demeaning.
The American Disabilities Act has aided in the removal of many of the man-made obstacles. Many have rejoined the "walking world", but the simplest trip takes extensive planning. You need to know if there are steps, elevators, curbs, crowded aisles, parking, bathrooms, etc.
True, we do have a few handicapped parking spaces, but many times these spaces are filled by able-bodied persons. These spaces are wider to make unloading a wheelchair easier and they afford greater visibility. You are very vulnerable when seated low in a chair.
Handicapped license plates or permits are not given without a doctor's certificate, and your application has to be renewed every couple of years. Twice I have had police officers approach me in a handicapped space and tell me "I didn't look handicapped". What the hell is a handicapped look?
There's another thing that I hear all the time, "you don't look sick, you look good". Well, gee, that's great. I'd hate to feel so rotten and look bad too. My other favorite, always from men, is "what's a young thing like you doing with a cane"? I want to say, "It’s a hook to haul your stupid butt to the ground with", but so far I haven't. I think uncreative lines are their own curse.
You also receive a restricted driver's license because you are deemed unable to judge your capabilities because of your handicap. If anything, we are more careful; we don't need further injury. I think if the Department of Motor Vehicles wanted to be really fair, they should make alcoholics and addicts take their driving test wasted. When they made me retake my test due to disability, they didn't wait for me to get cured.
I want to stay as active as possible, but the sheer nature of MS makes long range commitments difficult. There needs to be an understanding of how to work around limitations imposed. That if I am unable to attend meetings, to allow for input over the phone. Include handicapped women in projects or jobs as you would anyone else, but with the understanding that it might become necessary to do some of the work at home. Or you might have to pull back all together and later on take part in a new program.
One of the things that disturbed me most, early in my disability, was that when I lost my visibility, I was no longer called upon for help or ideas. I know people assumed I had enough to deal with, but I should have been the sole judge of it.
Safety is another factor, which we must consider. When you are weakened by disability, your vulnerability as a woman is magnified. At home I have my pistol to rely on, but the outside world is another matter. Having someone offer to accompany or transport you to a meeting or social event is a tremendous relief.
Don't be afraid to ask what caused the health problems. Through information we can make it easier for someone else. It's understood that most people aren't aware of the situations that exist unless they personally know someone whose life injury or illness has touched. I believe that disability is like race: unless you live it on a day to day basis, you can't possibly understand how all encompassing it really is.
By understanding, promoting and planning ways that will allow us to become more visible, you will insure that a valuable segment of society is not forgotten.
For today, the MS is in remission. I use a cane when I go out. It prevents falls when vertigo or weakness suddenly strike. Once a month I receive "trigger" injections of cortisone, lidocaine and Novocain in my neck and back to help control some of the pain from severe muscle spasms. I also take a drug that helps with seizures, anxiety, and muscle tremors that had been keeping me from sleeping. It has side effects like many drugs, but I'll trade them for a decent night's sleep.
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