Another waiting room filled with family and friends. My mother looks up from her cross-stitching, “I’m so proud of you, Mary-beary,” she struggles to say through her tears. I can tell she is terrified but nervously tries her best to hide it. My dad sits two chairs down from my mother, always a space between, and it is the first time I have seen him cry. My partner sits reading a book to my adopted baby boy, attempting to stay strong for our son. It is hard to see them like this, especially because I am surprisingly calm in the face of a double lung transplant. I am scared but I know they are suffering more than I am right now so it is easy to not focus on myself. I trust my doctors. I am exhausted. I have reached my dreams. I am finally content.
A nurse walks into the waiting room, glances at the sheet in her hand, “Mary Getz? Mary?” “Yes?” I call out, a bit hesitantly.
“Date of birth, please?”
“Seven-twentyfour-eightyfive” I recite. I can feel my heart start to pound. It’s time to be taken to pre-op. The outcome of the next several hours is uncertain. I hug everyone and get wheeled down the hall.
On the way I start thinking about my life and the constant uncertainty I have had to deal with and it’s effect on me. Despite the limitations I have faced living with Cystic Fibrosis I have reached all of the goals that I have set for myself. Illness does get in the way but somehow I ultimately do what I set out to do. I remember a quote I heard my last year in women’s studies and I felt the message rang so true about the nature of my life that it has stayed with me all of these years: “live with your uncertainty.” In essence, this is what I have had to do to get through each day. It made it easier to go for my goals because I had already lost the promise of a future, what else could I lose? I knew I couldn’t live for myself: I had to make up for my own disappointment through helping other people. I worked so hard to help ease everyone else’s suffering that I forgot my own. It was a desperate selfish attempt to be ok with myself that led me to want to help others.
No one ever thought that I would graduate from the University of Michigan with a Dual Degree in Psychology and Women’s Studies, and then go on to get a Masters Degree in Social Foundations of Education from Eastern Michigan University while simultaneously designing and setting up my own state-of-the-art community center. I even accomplished the seemingly impossible dream of motherhood. I did it all, and it still seems too good to be true. There is still a lot I would like to accomplish. I want to be able to enjoy the work I have put in. But here I sit, on a hospital bed out of control of my own body. The first time I was placed in the hospital for a severe bout of pneumonia was in January 1986. Even in the hospital I was having trouble fighting the bacteria. I barely made it to a year old, even with the uncommonly early Cystic Fibrosis diagnosis. My mother watched horrified as the Challenger space shuttle exploded on national television as she got to my room - it was an ominous sign. My early childhood was spent in and out of hospitals. I wasn’t supposed to live to 3, then 18, now 30. I was not promised a future. No one saved for my college education. In order to save face, there were few expectations.
As a teenager I felt angry about everything I would miss out on. I didn’t want to be told I would have a future that I could not realistically have and yet I did not want to deny my right to a ‘normal’ life, a life where I had a purpose. I focused on the present and my schoolwork. My mother, a strong independent woman, stressed the importance of education. I was lucky to be part of the Special Education program at my high school for students with physical or other health impairments (POHI), which allowed me accommodations when I was ill. I realize now that my success in school was due to the kind and encouraging help I received from my POHI teacher, Ms. Pat. She was always willing to advocate for me and the other students in the group and through our roundtable meetings together we came to realize that even though we had very different illnesses, we had the same issues with uncertainty and longing to make something of ourselves. Ms. Pat set up mentoring opportunities and job shadows; mine were in the special education room. Bright purple hair and overhead slides of conflict resolution steps I stepped up to the front of the class for my first teaching experience. I was excited yet simultaneously ashamed of the power I had over my peers. I wanted to learn from them as much as I wanted to share what I knew. I didn’t understand how to put the feelings I was having into words but I knew I was dissatisfied. I started to think about starting my own alternative education program in high school, determined that with a little work everyone could have a meaningful place in society. I wanted to create a level playing field. A mountain of shared resources, a support system available to anyone that needed it. I wanted this as much for myself as I did for everyone else.
I made it to college, and almost didn’t finish because of the second bout of Pneumonia just before my 21st birthday. Stubbornly, I checked myself out of the hospital so that I could go out for my birthday. I wanted to have the wild and crazy birthday that all my friends had. Unfortunately in the time I was out of the hospital I got much worse requiring a month of IV antibiotics before I was able to return to my usual routine. I spent so much time focusing on how I did not fit into the mold set for me that depression took over. Hopelessness and despair overtook my daily interactions. I felt that my body frequently defeated my best attempts to plan for the future. I struggled to make myself happy but the more I thought about myself the more distraught I was. I started to keep busy working and studying in areas of equality, education, and especially disability studies. I wanted a place where I belonged but I could not find it. I came to the cynical realization that it doesn’t exist. I shifted my focus from helping each individual I work with to helping the community help itself. My dream was to create a place where everyone was valued, regardless of what you are struggling with; where people can be helpful and share strengths and recourses simply because they live in the same place and want to make the most of their lives. With my experience in Women’s Studies, Psychology, and Disability Studies I was confident that I could eliminate inequalities by focusing on the community as a whole.
By graduate school I was starting to keep notes and drawings of my utopia in a journal. Bar napkins, sticky notes, emails to myself I would print and paste in for safekeeping. My mind was always wandering towards the possibilities ahead of me. I studied more independently than for my degree program in graduate school preparing my design, trying to make it comprehensible to a mind other than my own. Some of the best times of my life were spent with my nose in a book and a pen in my hand.
“Where have you been?” my friends would ask me after several nights in a row spent in the library researching.
“I can’t find any grants pertaining to community development projects, the go green initiative has stopped all new development and existing sites are overcrowded and run down, everyone needs funding. Why should I be special enough to get it?” I answer in disgust. I can’t remember when I didn’t feel this sense of burning injustice about the way the world works. My thoughts are consumed with how to change things.
That was two years ago now. I received funding to renovate an old suburb outside of Detroit for my project. The years of planning I had done paid off, I knew exactly what I wanted from my community – the latest technological accommodations and communication devices used to allow each individual to accomplish her or his unique dream. Even though my degree often goes unrecognized feminist thought still informs my actions. The community meets its own needs by working collaboratively with others nearby. I had met a wide range of associates throughout my schooling and had frequently polled them for advice and expertise compiling a network of professionals committed to equality. Working with like-minded individuals boosted my confidence in my goals adding motivation to passion. It was exhausting to share intense ideas about our hopes for our project. We all felt personally attached to the community center and it’s development. I sometimes got so wrapped up in my work that I forgot to take care of myself. On more than one occasion in the last couple of years I have run myself down. As I stare at the nurses setting up the scalpels and swabs I wonder if I should have taken it easier on myself. I had a reasonable excuse to sit it out a few times but I refused. More uncertainty. I needed to make something of myself in order to not give up completely. That’s the whole point isn’t it, to find yourself, to make life worth living? I made my life worth living in spite of the constant uncertainty about my future. It was a choice I made to either burn out or fade away. Am I burning out?
This final question scares me back to reality and I finally ask for a piece of paper and a pen to record my thoughts at the last minute: I am not just my body. I am not just a disease, but this illness has been a defining feature of my life. Uncertainty turned into determined action in the end. My selfish search for meaning in my life made a difference in the world, if only slightly. I don’t feel any more certain about what will happen next but I feel more comfortable with that uncertainty. I hope the people I love are comfortable with it too. Most importantly, I want my son to know he was the icing on my cake. I knew I was complete the day he was placed in my arms. The joy I felt for both myself and my partner was overwhelming – we had waited for this day for years. I had waited my entire life. My body could not nurture a baby and I desperately wanted to be a mother. I have accomplished all of my goals except for watching him grow up. I look forward to him growing up in the community I built for him and I hope he is happy there. I hope he will grow up to be a socially conscious and sensitive young man, empathic and determined. If I do not get to see those precious moments I want him to know this:
Live with your uncertainty. It is ok to not know what is next – it means anything is possible. Remember that we are all merely human: our differences are not definitions they are accessories. Be as sensitive to the needs of others as you are to your own. Love as much as possible and know many people love you. Get an education and give back to the world. Don’t give up on yourself. Go for your dreams.
I fold the piece of paper and write my son’s name on it. I call over the closest nurse and ask her to hold on to it. Understanding my intent she nods, smiles slightly, and walks away. I lay down and hope she doesn’t have to pass it along.
“Alright, Mary. Count backward from ten slowly and we will see you in a few hours.”
I take a breath, close my eyes and count. Ten… Nine… Eight… Seven…………….
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