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My Story: A Photographic Essay on Life with Multiple Sclerosis
"In a series of dramatic essays and photographs by the renowned San Francisco-based photographer Amelia Davis, My Story is an evocative description of what it is like to live with multiple sclerosis (MS), a disease that affects about 350,000 Americans and whose cause is still not entirely known. The essays and accompanying photographs in this highly engaging, beautifully illustrated book poignantly portray the lives of thirty-two men and women from the ages of seventeen to seventy and of various ethnicities, and socio-economic backgrounds who share the challenge of living with MS. Some, like Amelia, use no mobility aids, while others use canes, wheelchairs, or electric scooters. All have had to face the challenges and limitations that MS has imposed upon their lives, and each has devised unique and often creative coping strategies.Accompanying each essay are commentaries by family members and friends that express their own personal feelings and experiences of living with this disease. Here are the inspirational stories of women, men, and children who live with this disease. Many have children one or two are currently expecting them. Treatments and therapies for slowing the progression of the disease are revealed and shared, from the latest advances in prescription medication to alternative methods of coping, including yoga, exercise and competitive sports, creative activities such as writing and art, and even community activism. A wide range of accompanying stories by spouses, children, and other loved ones depict the ups and downs of living and caring for someone who has MS, from the moment of first diagnosis to dealing with its ongoing challenges. All are strong reminders of the selflessness of the human spirit, and its ability to nurture and remain strong under even adverse circumstances. Highly motivating and deeply inspirational, My Story will be welcomed by anyone who lives with or shares the life of someone who has MS."
300 pages, Paperback
First published March 10, 2004
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Displaying 1 - 6 of 6 reviews
June 8, 2016
When I received this book from a fellow MS buddy, my expectations for it were high seeing that it used photography to tell the stories of those living with MS. To my surprise, photography has very little to do with the book. I'll be honest here to say I was a bit disappointed. My Story features essays written by dozens of people living with the disease, as well as accompanying essays by their partners, family members, friends or attendants on what it's like to care for them in times of need. There are some familiar faces for those of us in the MS community, and no matter what classification of MS one might have, there are stories that will be relatable. From the athletes who can manage their symptoms easily to the champions who fight every day to live, this book proves that when you ask someone to define their MS, their reply will begin with two simple words, "My story....". Now I don't know if it was intended or not, but the title's initials share something in common with the disease, M(y) S(tory). While I was able to relate to many of the essays written, the only one that can really describe my MS is my story to tell.
I was diagnosed in late 2003, though I had been experiencing symptoms for a few years before then. My introduction to MS was by the sudden onset of optic neuritis in my left eye. The pain was intense, and the inability to see took a toll on not just me, but everyone. Other than the ON, I didn't exhibit any other observable signs, but my symptoms couldn't have been more debilitating. Vertigo challenged my ability to walk straight, and my balance was quickly becoming something I couldn't depend on. For years, I had been experiencing reactions to extreme cold and heat, as well as the loss of feeling in my extremities. As those symptoms worsened, new ones developed, and I had to adapt to the changes in my body which proved to be challenging since none of the symptoms ever seemed to subside. Insight from doctors considering my initial diagnosis soon turned into a concern of which variety mine could be.
Was it relapsing-remitting or progressive? It took years before doctors came to the conclusion in classifying my MS as progressive, whether it was primary or secondary wasn't important to me, just the descriptive - progressive - unnerved me. I felt like my statistics were placed in a file marked hopeless.
Since then, I have learned to adapt to each transformation that happens to my body, and balance daily life to a new normal. I now think why I was so interested in a photographic essay on those who live with the disease, was not just because of my work in photography, but also to see just how others have been able to capture MS. After all, it is elusive. Not everyone can see another's vertigo, spasticity, or cognitive impairments.
The times when my MS is visible.
When my legs are too weak, causing me to rely on my electric wheelchair.
When my spasticity is so severe, it takes someone with solid strength to unfurl my extremities.
When my balance is off, requiring me to use a walking cane.
When my speech is slurred, so badly I cannot answer the phone.
When my memory lapses when doing something familiar.
When my hands tremor and my legs shake uncontrollably.
When I'm in a hospital bed recovering from another painful attack.
There are times in a day that I'm able to do things that at one time were taken for granted. Like walking to the mailbox, watering the flowers in my garden, or shopping for groceries at the store. Those usually become possible right after I take a buffet of medications, and the time is just right. When my body remembers what it was like to be 'normal' before the MS. It's a window of opportunity, and I never miss it when it comes around. I bask in the glory of blending in, even if it's for 30 minutes or an hour. Many people living with MS cannot stand when they are told they look so good for being sick. I live for it. I want to look good for being so sick. I sacrifice to hear that as many times as I can in a single day. I don't need the word progressive in front of my MS to remind me that I'm not going to get any better. I can feel it.
Every second.
Every day.
Except for those small windows of opportunity to where medication has put to sleep the monster, and I get to dance. If you took a photograph of my MS, it would look like me. Though my MS is not
If you took a photograph of my MS, it would look just like me. Though what I learned from reading the final chapter in this book is that my MS is not my story.
I was diagnosed in late 2003, though I had been experiencing symptoms for a few years before then. My introduction to MS was by the sudden onset of optic neuritis in my left eye. The pain was intense, and the inability to see took a toll on not just me, but everyone. Other than the ON, I didn't exhibit any other observable signs, but my symptoms couldn't have been more debilitating. Vertigo challenged my ability to walk straight, and my balance was quickly becoming something I couldn't depend on. For years, I had been experiencing reactions to extreme cold and heat, as well as the loss of feeling in my extremities. As those symptoms worsened, new ones developed, and I had to adapt to the changes in my body which proved to be challenging since none of the symptoms ever seemed to subside. Insight from doctors considering my initial diagnosis soon turned into a concern of which variety mine could be.
Was it relapsing-remitting or progressive? It took years before doctors came to the conclusion in classifying my MS as progressive, whether it was primary or secondary wasn't important to me, just the descriptive - progressive - unnerved me. I felt like my statistics were placed in a file marked hopeless.
Since then, I have learned to adapt to each transformation that happens to my body, and balance daily life to a new normal. I now think why I was so interested in a photographic essay on those who live with the disease, was not just because of my work in photography, but also to see just how others have been able to capture MS. After all, it is elusive. Not everyone can see another's vertigo, spasticity, or cognitive impairments.
The times when my MS is visible.
When my legs are too weak, causing me to rely on my electric wheelchair.
When my spasticity is so severe, it takes someone with solid strength to unfurl my extremities.
When my balance is off, requiring me to use a walking cane.
When my speech is slurred, so badly I cannot answer the phone.
When my memory lapses when doing something familiar.
When my hands tremor and my legs shake uncontrollably.
When I'm in a hospital bed recovering from another painful attack.
There are times in a day that I'm able to do things that at one time were taken for granted. Like walking to the mailbox, watering the flowers in my garden, or shopping for groceries at the store. Those usually become possible right after I take a buffet of medications, and the time is just right. When my body remembers what it was like to be 'normal' before the MS. It's a window of opportunity, and I never miss it when it comes around. I bask in the glory of blending in, even if it's for 30 minutes or an hour. Many people living with MS cannot stand when they are told they look so good for being sick. I live for it. I want to look good for being so sick. I sacrifice to hear that as many times as I can in a single day. I don't need the word progressive in front of my MS to remind me that I'm not going to get any better. I can feel it.
Every second.
Every day.
Except for those small windows of opportunity to where medication has put to sleep the monster, and I get to dance. If you took a photograph of my MS, it would look like me. Though my MS is not
If you took a photograph of my MS, it would look just like me. Though what I learned from reading the final chapter in this book is that my MS is not my story.
January 6, 2013
I thought this book was very uplifting, and true in accounts of all the stories. My mom has had MS for about 14 years, I grew up with it, as I am now 20 years of age. I don't remember thinking much of it, I was used to it. She walked slower, and hasn't very much strength left, but she is one of the most positive people that I know. If you saw her walking around, and didn't know her very well; you would assume nothing is wrong, she has to try really hard to walk normally. Which she does a wonderful job at!
Like some of the people, she has her great days and her not so great days, winter is the hardest season, the summer and sun is the most efficient. What we may consider a lot of hard work, she can barely do.
Like some of the people, she has her great days and her not so great days, winter is the hardest season, the summer and sun is the most efficient. What we may consider a lot of hard work, she can barely do.
April 6, 2024
Sending you prayers, I was diagnosed in 2010 and seemed to go down hill quickly. In six years I could no longer work and had real problems with balance and joint pain. Brain fog was really bad sometimes. I took rebif and had a lot of problems and had to quit. I have been on techfadera (not spelled right) for a few years and have several side effects. I felt lost and decided to quit my meds due to side effects. Our care provider introduced me to Ayurvedic treatment. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS. Visit Natural Herbs Centre web-site natural herbs centre . com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. God bless all MS Warriors
October 25, 2018
"It took quite a while but I have learned many things about life and about myself since my diagnosis. I am the same person whether I can still shoe horses or not - if I can't do that, I can still do something else. Finding something you can do that you love helps you feel better physically, mentally, and emotionally. Be flexible, have goals and remember that certain forces are beyond everyone's control. We need to fight back to find out what we can do and can't do. If there is something we can't do we must adjust and readjust if necessary. One of the reasons I consider myself lucky is because I believe in myself and have not quit trying to make things happen. This is the only life I have. My real job is to continue to grow personally and spiritually, to love more and to enjoy myself along the way. No disease can take my real job away. Everyone has limitations, and we can choose to focus either on what we can do or on what we can't do. One helps us in our real job and one does not, but it's our choice." Dave
MSWorld support website
"I believe that today is the challenge and tomorrow is the reward. I've come to realise how important it is to take care of myself through exercise, nutrition and positive thinking. And I know now that we can make the most of each day if we're willing to take time to reflect and reach for life's meaning through the chaos." Kathleen
"My constant companion in life is not my mate, nor my loyal dog. It is my illness, touching everything I do and defining who I am. My gaze into the mirror reveals nothing. Sickness cannot always be seen, but I am ever aware that I am not alone. It is there.
I live with multiple sclerosis, which arrived three decades ago and overstayed its welcome. I cannot get the damned disease out of the house. I have tagoed and tangled, doing battle with MS for my entire adult life. I was a young man when illness arrived, an ambitious television journalist with large hopes for the future. After the bad news came, I was determined to stay the course and build a life. And so I did.
MS and I know each other well. Too well. We are not friends, but "know thy enemy." I always say. MS and I seem to have established an uneasy but calm relationship. Histrionics stormed across the stage long ago. High emotion did not help. I am locked in mortal combat with this predator, and the painful truth is this: the beast will win. As with any disease that is little known and devastating, victory becomes a relative term.
My weapon of choice is a strong state of mind, that elusive positive attitude that lets me walk, sometimes hobbling slowly, out of the house each day to do what it is that I do. That is all I can do. My self-confidence stays strong, my determination to succeed unyielding. An arm and a leg that no longer function well slow me down. Legal blindness makes the path ahead difficult to see. I am exhausted, and life's little tasks are large obstacles.
But my life is good. Others suffer worse. I will go forward because backwards is not acceptable. This is my shot, and the brass ring is out there somewhere. I cannot accept sympathy. I am too busy." Richard
"MS is not the end, it is only the beginning of knowing your full potential. The diagnosis of MS is the opportunity to bring those positive elements that each one of us has and to use them in service of our fellow man." Eric
"With time, acceptance, education and exploration, I began to understand living an empowered life had less to do with what I could achieve, and more to do with who I am and how I choose to live my life. I came to know that I am constantly creating my life with my thoughts, ideas, expectations and actions. By continually working to align these things with the deepest part of who I am, I discovered that the qualities I so appreciated in myself as a world-class athlete had never been taken away. These are an expression of my spirit, which is boundless and can be expressed in so many ways. There's an old Buddhist saying 'fall down seven times, get up eight.' When I first heard this, I thought 'Yes, that's it!' I've cried buckets of tears over this thing and shook my fists at the heavens more than once. By accessing whatever means necessary, I have managed to pick myself up, dust myself off, and get back to listening to my heart and following its guidance" Maureen
MSWorld support website
"I believe that today is the challenge and tomorrow is the reward. I've come to realise how important it is to take care of myself through exercise, nutrition and positive thinking. And I know now that we can make the most of each day if we're willing to take time to reflect and reach for life's meaning through the chaos." Kathleen
"My constant companion in life is not my mate, nor my loyal dog. It is my illness, touching everything I do and defining who I am. My gaze into the mirror reveals nothing. Sickness cannot always be seen, but I am ever aware that I am not alone. It is there.
I live with multiple sclerosis, which arrived three decades ago and overstayed its welcome. I cannot get the damned disease out of the house. I have tagoed and tangled, doing battle with MS for my entire adult life. I was a young man when illness arrived, an ambitious television journalist with large hopes for the future. After the bad news came, I was determined to stay the course and build a life. And so I did.
MS and I know each other well. Too well. We are not friends, but "know thy enemy." I always say. MS and I seem to have established an uneasy but calm relationship. Histrionics stormed across the stage long ago. High emotion did not help. I am locked in mortal combat with this predator, and the painful truth is this: the beast will win. As with any disease that is little known and devastating, victory becomes a relative term.
My weapon of choice is a strong state of mind, that elusive positive attitude that lets me walk, sometimes hobbling slowly, out of the house each day to do what it is that I do. That is all I can do. My self-confidence stays strong, my determination to succeed unyielding. An arm and a leg that no longer function well slow me down. Legal blindness makes the path ahead difficult to see. I am exhausted, and life's little tasks are large obstacles.
But my life is good. Others suffer worse. I will go forward because backwards is not acceptable. This is my shot, and the brass ring is out there somewhere. I cannot accept sympathy. I am too busy." Richard
"MS is not the end, it is only the beginning of knowing your full potential. The diagnosis of MS is the opportunity to bring those positive elements that each one of us has and to use them in service of our fellow man." Eric
"With time, acceptance, education and exploration, I began to understand living an empowered life had less to do with what I could achieve, and more to do with who I am and how I choose to live my life. I came to know that I am constantly creating my life with my thoughts, ideas, expectations and actions. By continually working to align these things with the deepest part of who I am, I discovered that the qualities I so appreciated in myself as a world-class athlete had never been taken away. These are an expression of my spirit, which is boundless and can be expressed in so many ways. There's an old Buddhist saying 'fall down seven times, get up eight.' When I first heard this, I thought 'Yes, that's it!' I've cried buckets of tears over this thing and shook my fists at the heavens more than once. By accessing whatever means necessary, I have managed to pick myself up, dust myself off, and get back to listening to my heart and following its guidance" Maureen
March 29, 2009
I really did like this book. It is wonderfully done and I like how each chapter focuses on a different person & their loved ones. The pictures are fantastic and I really like the format of this book. I recommend it to young & old people alike.
November 14, 2015
Stories of people with MS and photographs also. The editor lets the people speak for themselves and tell their own story in one to there pages each. The stories vary but are largely positive and upbeat. I wish the pictures were larger.
Displaying 1 - 6 of 6 reviews