Below is an article I had published in an online women's publication, from March 2009.
Protection Around My Heart: Living as a Whole Person with Multiple Sclerosis
As I rode my scooter to an epic line of folks who had clearly been waiting for several hours to buy discount theater tickets, I was approached by a gentleman who led me to the front of the line so that I could purchase tickets immediately. I was once again struck by what I now know as “gimp-privilege,” or simply, “GP”. After all, I was the only person who was truly prepared for such a line - I had come with my own comfortable seating!
In Brookline, Massachusetts, where I now live, I experience “GP” often in my daily life; the unfortunate flipside is the frequent patronizing attitude and general discomfort around people with disabilities.
This is in stark contrast to my experience in Berkeley, California, the home of the Disability Rights Movement. In Berkeley, where there is exceptional handicap access to all public and private buildings, people in wheelchairs are among the mainstream. The lack of architectural barriers translates into a lack of attitudinal barriers. There, people made direct eye contact with me and I was treated like everybody else - there was no “Gimp Privilege.” I felt my heart open as I was treated by others as a whole person, not as a disability first and a person second. Passionate, involved and outgoing, I’ve been living with Multiple Sclerosis (MS) for half of my 61 years.
MS is a chronic neuromuscular disease, thought to be autoimmune in nature with no known cause. Affecting more than 2.5 million worldwide, the disease impacts every individual differently. MS attacks the myelin sheath surrounding the nerves of the central nervous system, causing a wide array and severity of symptoms depending upon the nerves affected. While most people are diagnosed between the ages of 20 and 50, MS can appear in young children and teens as well as much older adults. Women are 2-3 times more likely to be diagnosed with MS than men.
The myriad symptoms include cognitive impairment, fatigue, visual problems and a loss of motor function. In my case, my symptoms are a deficit of motor control - I have no use of my legs or my left arm, with no additional symptoms.
In spite of these problems, I have never felt resentment towards MS - instead I see it as a teacher. The dichotomy of both the challenges and positive lessons MS has continually offered me exemplifies the philosophical truth that equal and opposite forces are inherent in all things. This truth is represented by a tattoo on my hand, a Chinese symbol meaning both challenge and opportunity; my life has been blessed with countless opportunities to grow and change.
MS afforded me one such opportunity as it first manifested itself physically, and I judged myself through the eyes of those around me. I was raised in a family filled with a lot of toxic shame. As I have grown, this shame attached itself to my self-image, resulting in unhealthy relationships and a poor body image. With MS, I began limping and using a cane, which progressed to two canes and then to a scooter. I felt “damaged” and hyperaware of people’s stares. I internalized other people’s discomfort as an indictment of being “less than.”
In Brookline, Massachusetts, where I now live, I experience “GP” often in my daily life; the unfortunate flipside is the frequent patronizing attitude and general discomfort around people with disabilities.
This is in stark contrast to my experience in Berkeley, California, the home of the Disability Rights Movement. In Berkeley, where there is exceptional handicap access to all public and private buildings, people in wheelchairs are among the mainstream. The lack of architectural barriers translates into a lack of attitudinal barriers. There, people made direct eye contact with me and I was treated like everybody else - there was no “Gimp Privilege.” I felt my heart open as I was treated by others as a whole person, not as a disability first and a person second. Passionate, involved and outgoing, I’ve been living with Multiple Sclerosis (MS) for half of my 61 years.
MS is a chronic neuromuscular disease, thought to be autoimmune in nature with no known cause. Affecting more than 2.5 million worldwide, the disease impacts every individual differently. MS attacks the myelin sheath surrounding the nerves of the central nervous system, causing a wide array and severity of symptoms depending upon the nerves affected. While most people are diagnosed between the ages of 20 and 50, MS can appear in young children and teens as well as much older adults. Women are 2-3 times more likely to be diagnosed with MS than men.
The myriad symptoms include cognitive impairment, fatigue, visual problems and a loss of motor function. In my case, my symptoms are a deficit of motor control - I have no use of my legs or my left arm, with no additional symptoms.
In spite of these problems, I have never felt resentment towards MS - instead I see it as a teacher. The dichotomy of both the challenges and positive lessons MS has continually offered me exemplifies the philosophical truth that equal and opposite forces are inherent in all things. This truth is represented by a tattoo on my hand, a Chinese symbol meaning both challenge and opportunity; my life has been blessed with countless opportunities to grow and change.
MS afforded me one such opportunity as it first manifested itself physically, and I judged myself through the eyes of those around me. I was raised in a family filled with a lot of toxic shame. As I have grown, this shame attached itself to my self-image, resulting in unhealthy relationships and a poor body image. With MS, I began limping and using a cane, which progressed to two canes and then to a scooter. I felt “damaged” and hyperaware of people’s stares. I internalized other people’s discomfort as an indictment of being “less than.”
I have worked very hard in therapy to antidote the shame by developing my feelings of dignity, self-worth, and wholeness; I transformed the challenge of my own shame into an opportunity to learn that I am more than just my physical body. There was a long period of time that I could not be out in the world comfortably in my scooter. Now, it is a joy. My world opened up again and it became rich and full because my shame no longer keeps me a prisoner.
As my shame diminished, I found that I was better able to ask for help and deal with dependency issues, which was a very good thing, because my dependency needs were growing. Today, I have help 24 hours a day, seven days a week. As my body requires a greater amount of care from others, I find that my internal sense of self becomes more independent from my physical body.
Although I have made significant progress regarding the ease with which I receive this necessary - albeit invasive - assistance, my emotional wellbeing is still very dependent on my relationship to the people who provide that care. Fortunately, this care has resulted in mutually supportive, beneficial relationships with the extraordinary young women who help me. Yet there are still times, when I am in transition between wonderful helpers, that I struggle deeply to retain a solid sense of self.
Some of the best help that I receive comes from my canine companion Jake. He came to me seven and a half years ago as a highly sensitive and well-trained service dog. Jake is able to retrieve items from around the house, open/close doors, “go get help” at my beck and call, and assist with other physical tasks that are challenging for me.
Not long after his arrival, recovering from a broken hip and breast cancer I was diagnosed with colon-rectal cancer. It was at this point that I found myself saying for the first time, “Enough! I’m tired of coping and being ‘the survivor’.” Part of me no longer wanted to live.
To cope with my diagnosis, Jake and I went to Vermont for a few days. On our drive home, I noticed that the armrest of the passenger’s seat, where Jake sat, was raised. Knowing he loved to rest his chin on it, I put it down and foolishly pointed and exclaimed, “Look Jake!” Being a highly sensitive and skilled service dog, Jake reacted to my words as if it were a command to stand and look. His paws landed on my reduced-effort steering wheel and caused the van to swerve 90 degrees into the forest, taking down 15 trees and totaling the van. Fortunately, neither one of us was hurt. However, I was without a van (and thus my freedom) for upwards of a year.
When I finally made it to my physical therapist and healer in Connecticut, I asked him how Jake, who had been placed on this Earth to protect me, had caused such a potentially lethal accident. He suggested that Jake was trying to “change my direction.” He asked if that idea resonated with me and immediately I realized that the accident had shown me how happy I was to be alive and to have survived. I became aware that all of me wanted to live. This was an essential realization to have before undergoing major colon surgery. Again, I was shown the inherent dichotomy in all things.
As my shame diminished, I found that I was better able to ask for help and deal with dependency issues, which was a very good thing, because my dependency needs were growing. Today, I have help 24 hours a day, seven days a week. As my body requires a greater amount of care from others, I find that my internal sense of self becomes more independent from my physical body.
Although I have made significant progress regarding the ease with which I receive this necessary - albeit invasive - assistance, my emotional wellbeing is still very dependent on my relationship to the people who provide that care. Fortunately, this care has resulted in mutually supportive, beneficial relationships with the extraordinary young women who help me. Yet there are still times, when I am in transition between wonderful helpers, that I struggle deeply to retain a solid sense of self.
Some of the best help that I receive comes from my canine companion Jake. He came to me seven and a half years ago as a highly sensitive and well-trained service dog. Jake is able to retrieve items from around the house, open/close doors, “go get help” at my beck and call, and assist with other physical tasks that are challenging for me.
Not long after his arrival, recovering from a broken hip and breast cancer I was diagnosed with colon-rectal cancer. It was at this point that I found myself saying for the first time, “Enough! I’m tired of coping and being ‘the survivor’.” Part of me no longer wanted to live.
To cope with my diagnosis, Jake and I went to Vermont for a few days. On our drive home, I noticed that the armrest of the passenger’s seat, where Jake sat, was raised. Knowing he loved to rest his chin on it, I put it down and foolishly pointed and exclaimed, “Look Jake!” Being a highly sensitive and skilled service dog, Jake reacted to my words as if it were a command to stand and look. His paws landed on my reduced-effort steering wheel and caused the van to swerve 90 degrees into the forest, taking down 15 trees and totaling the van. Fortunately, neither one of us was hurt. However, I was without a van (and thus my freedom) for upwards of a year.
When I finally made it to my physical therapist and healer in Connecticut, I asked him how Jake, who had been placed on this Earth to protect me, had caused such a potentially lethal accident. He suggested that Jake was trying to “change my direction.” He asked if that idea resonated with me and immediately I realized that the accident had shown me how happy I was to be alive and to have survived. I became aware that all of me wanted to live. This was an essential realization to have before undergoing major colon surgery. Again, I was shown the inherent dichotomy in all things.
This epiphany completely shifted “the accident” from something about which I might have had much regret and anger, to something that was meaningful and filled me with appreciation for Jake and my life. The surgery went easily, my recovery was quick and the pathology report was clear.
I wish I could say that my life then returned to a more calm existence, free of traumatic events. However, the saga did in fact continue until just recently. The colon surgery predisposed me to intestinal obstruction due to adhesions, which have resulted in three hospitalizations and two additional surgeries during which I almost died. I also dealt with two broken knees after being thrown from a new but malfunctioning power chair.
Transforming these experiences by a simple attitude change, or paradigm shift, has been a tremendous lesson for me. I now see that although I might have little control over external events, I can always exert control over my reaction and how I relate to these circumstances. By giving meaning to these events, I can come to accept them and continue to grow.
When Jake became a part of my life, I noticed that it became easier for people to approach me. The fact that Jake is a regal, stylin’, purple-eared, white standard poodle only helps the situation. It often feels like I’m out and about with a celebrity, because he is a true attention-grabber. Typically, people fawn over his beauty, and flock over to pet him. In the process of loving Jake, they almost always initiate a conversation with me and inquire into how he helps me, which affords me the opportunity to communicate with them - not only about Jake, but also about my life. Jake is an amazing icebreaker, helping people transcend their awkwardness around disability.
Diminishing my shame, changing my attitude, and working with my service dog Jake, have all positively impacted my relationship with my community. However, the reality of barriers in the external world still exists. These barriers are not merely architectural, which are numerous and infuriating, but also include the presumptions of people both well-intended and uninformed. The absence of direct eye contact, over-solicitous behaviors (“GP”), and the general discomfort of others - although no longer internalized by me – are still very much present in my community. Just as I do not change the way I relate to people based on superficial qualities, I long for people to relate to me on the basis of my character, independent of the fact that I am using a scooter. Everybody has his or her struggles – mine just happen to be visible to everyone. I have grown accustomed to Brookline and have an enjoyable, rich life here. To deal with the difficulties I encounter in my daily interactions, I have become inured. It is only when my helpers and friends comment on the distorted behaviors of others, or when I travel to locations where these behaviors do not exist, that I become keenly aware of the protection I keep around my heart.
I wish I could say that my life then returned to a more calm existence, free of traumatic events. However, the saga did in fact continue until just recently. The colon surgery predisposed me to intestinal obstruction due to adhesions, which have resulted in three hospitalizations and two additional surgeries during which I almost died. I also dealt with two broken knees after being thrown from a new but malfunctioning power chair.
Transforming these experiences by a simple attitude change, or paradigm shift, has been a tremendous lesson for me. I now see that although I might have little control over external events, I can always exert control over my reaction and how I relate to these circumstances. By giving meaning to these events, I can come to accept them and continue to grow.
When Jake became a part of my life, I noticed that it became easier for people to approach me. The fact that Jake is a regal, stylin’, purple-eared, white standard poodle only helps the situation. It often feels like I’m out and about with a celebrity, because he is a true attention-grabber. Typically, people fawn over his beauty, and flock over to pet him. In the process of loving Jake, they almost always initiate a conversation with me and inquire into how he helps me, which affords me the opportunity to communicate with them - not only about Jake, but also about my life. Jake is an amazing icebreaker, helping people transcend their awkwardness around disability.
Diminishing my shame, changing my attitude, and working with my service dog Jake, have all positively impacted my relationship with my community. However, the reality of barriers in the external world still exists. These barriers are not merely architectural, which are numerous and infuriating, but also include the presumptions of people both well-intended and uninformed. The absence of direct eye contact, over-solicitous behaviors (“GP”), and the general discomfort of others - although no longer internalized by me – are still very much present in my community. Just as I do not change the way I relate to people based on superficial qualities, I long for people to relate to me on the basis of my character, independent of the fact that I am using a scooter. Everybody has his or her struggles – mine just happen to be visible to everyone. I have grown accustomed to Brookline and have an enjoyable, rich life here. To deal with the difficulties I encounter in my daily interactions, I have become inured. It is only when my helpers and friends comment on the distorted behaviors of others, or when I travel to locations where these behaviors do not exist, that I become keenly aware of the protection I keep around my heart.
protection_around_my_heart.doc | |
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Talk at Harvard Medical School - 2008
To see a Video of my talk that I gave at Harvard Medical School in 2008, please press the Button Below.