I am often asked, "How do you do it?" It being stay positive and full of a zest for life while my body is slowly giving out from under me. Sometimes I smile and say, "It's just the way I am. I was born optimistic." Sometimes I dig deeper and admit that staying positive in the face of tough stuff is a choice. I choose to see my glass half-full rather than half-empty. Today I need to drop deeper yet, and answer this question more for myself than for anyone else.
Why is a woman I know--diagnosed with MS only five years ago--now choosing to die with the help of her lover and friends because she can no longer bear the kind of life this disease has forced her to endure? Granted the progress of her condition has been swift, utterly debilitating and painful. Would I, in her position, choose death over life?
I believe in a person's right to determine the span of her or his life. At least I thought I believed in such a right. But something has shifted within me as I've contemplated this young woman's decision to end her life at 35 years of age. If the MS that now primarily affects my strength and mobility were to take a more virulent course, leaving me totally dependent on others for my every need and living in unending pain, what choices would I make?
As I sat with these questions, the following email message arrived in my inbox:
Date: 02/12/2000 9:06:08 AM Pacific Standard Time
Hi, My name is Melissa and i was reading all about ur creative art... wow thatz sooo amazing.. i wondering.. I'm doing a project on discrimination and i'm gonna write a report on how "doing a disablity" and how they are soo inspired to accomplish anything.... and i found it absolute amazing thing...itz a great idea about decorating and i'm very impressed and impressed how inspired u are... and i feel that everyone should be treated equally... so i wondering if you send me some stories about urself and how u r inspired and how u put ur mind to something and go for it.... i really admire ... u for what you are doing... & by just reading ur webpage and has helped with my project...so any info on how u do it all... or links would help also...thank u sooo much for listening to me!....
Melissa C = )
OK, Melissa, here goes...
As a person with a disability, I think not only of discrimination from the outside--other people, cultural expectations, family pressures, occupational roadblocks, accessibility to places and events--but discrimination from the inside. My pocket Oxford dictionary defines discrimination as "unfavourable treatment based on prejudice", and prejudice as "unreasoning opinion or dislike".
Seems to me it's up to each of us to determine how we view ourselves and our bodies. Where I might have an "unreasoning dislike" of my legs that drag and have trouble walking, you might have an unreasoning dislike of your belly that sticks out or your hair that frizzes in the rain. Each of our attitudes is going to influence how I treat these legs that bother me, and how you treat your belly and hair. Or more poignantly, whether my friend with advanced MS is going to continue living...or not.
I was raised with a prejudice against African-Americans. Oh, not openly. Even though my parents were both raised in the South, they tried to teach my sisters and me a respect for all peoples, no matter what their race, religion or ethnic background. But this was the 1940s and 50s and racial prejudice was a fact of life. In the United States anyway, there was no escaping it's insidious power. Even persons of color were raised to think of themselves as somehow "inferior".
Given the climate in which I was raised, it has taken conscious intent, education and effort to diminish the power of my own racial prejudice. I will work with these unchosen attitudes the rest of my life (see Racial Justice). The key thing here is that I choose to change this harmful attitude within myself. Without changing my own attitude, all the work I might do to try to change the social/educational/legal/political structures that discriminate against persons of color will be ineffective.
So it is with discrimination in the field of disability. As long as I buy into our Western culture's view that a person must be productive, able, attractive (according to the media's definitions), independent, intelligent (again, according to arbitrary standards of intelligence), capable, and so forth...I will be prejudiced toward anyone who is what we call, differently abled. Including myself. So, as my body becomes less-than-able, I will see this as a negative, tragic, unfair, and generally miserable turn of events. How can I be positive and full of a zest for life then?
It is up to me to change my attitudes. How do I do this? By asking myself two simple questions: How do I want to live my life? Do I choose to focus on what I can't do, or what I can do? I have the choice. Now this is not to say that I don't get unhappy, fearful, sad, angry, discouraged or even envious. It means that I do not choose to stay there any longer than necessary. When those feelings crowd around me, I generally let myself feel them fully, and then try to express them either in writing, art or with understanding persons who care about me. Maybe I have to visit those bleak places every so often, but I choose not to live there.
I remember Betsy, a woman in her 90s whom I used to visit at a local nursing home. Betsy was blind, almost totally deaf and lay curled in a fetal position in her bed. She enjoyed two things--food and prayer. Her smile was like a shining sun. As I'd prepare to leave, I'd lean down toward her "good" ear and loudly say, "I love you, Betsy." Her "Likewise, I'm sure!" never failed to send me off smiling. Now was Betsy able or productive or independent? Hardly. But she was one of the most alive persons I've ever met.
Isn't that the point of it all...to be fully alive until we die? Yet how easy these days to walk (more like, run) through life only half there. As if by numbing ourselves we can avoid hurt, disappointment, fear and unhappiness. Well, if we choose to protect ourselves from the difficult feelings, we lose the ability to feel any feelings at all. Love, ecstacy, contentment, peace, delight, satisfaction, humor.What a payoff!
To answer the original question--"How do you do it?". I try to live life as it comes along...fully, disturbingly, passionately. I try to accept myself and my body exactly as I am right now, not as I was yesterday or may be tomorrow. I surround myself with communities of friends and loved ones, ready to give and receive help and companionship. I share the creative gifts I've been given, not with an eye toward "success", rather as a way of expressing life's learnings and joys. I try to remain totally present to this moment. In short, I simply love life!
ever be so.
Patricia Lay-Dorsey. Please use with attribution.