Read an Excerpt
DEEP
Real Life with Spinal Cord Injury
The University of Michigan Press
Copyright © 2006 University of Michigan
All right reserved. ISBN: 978-0-472-03251-8
Chapter One
Barbara Gough on Obligation
Let me start by telling you a little bit about myself. I am a wife, mother, grandmother, sister, and friend. I am also a newly disabled woman who is only two years into my journey of being disabled. I did not have an accident or do anything that could have caused my legs to stop working. My disability came from an infection in my cerebral spinal fluid after back surgery. It has changed my life and the lives of those who love me. It has changed many of the obligations that we all have and many of the ways we interact with each other.
Before I got ill, I worked hard to become who I was, without too much thought for the path I was taking. I married a man very different from myself when I was only 19 years old. We have been married for 39 years and Allen has filled my life with practicality and other characteristics I am missing. He is a retired computer engineer whose job required us to move to different states. That was both a good thing and a bad thing. Moving was a good thing because it gave us the opportunity to meet and become friends with so many different kinds of people. It was a bad thing because we had to work hard to give our children a sense of knowing and belonging to an extended family of our own.
My husband and I have had a good marriage, although it is not perfect. Over the years we have had to make lots of changes. We have two children-a daughter Kimberly, who is a successful attorney and the mother of our three grandchildren-and a son Allen, III, who is a successful retail manager. Both of our children are married to individuals we love and respect. Our marital struggles and successes result from the ways Allen and I divided the many responsibilities we shared. We lived traditionally, which meant that our obligations to each other were clearly defined, not by any profound communication between us, but rather by the tried and true ways that our society sets for men and women together.
I was a stay-at-home mother whose primary obligation was to take care of the family. And I did my job well. My daughter was no problem as a child, and we had a lot of fun when she was young. Funny and over-adventurous, my son was more of a challenge when he was a boy. I was always his main supporter when he was growing up. In the colorful domain of motherhood, I took any and every obligation with great seriousness. I never minded all that my son, daughter, and husband needed from me. After all, I loved them. What they could not do for themselves, I gladly did for them. This was instinct.
Do we have instincts toward our own nurturing? My obligations to myself, beside the obligations of motherhood, were a murkier picture, although I did not know it then. After my children were grown, I went back to college and finished my undergraduate and master's degrees. I had a successful job and served on the Board of Directors for my international professional association. Everything seemed to go well as I made my own way. My two grown children were both successful. My husband loved me. I enjoyed a great job, status in a professional organization, and an adjunct professorship in the academic world. I was able to make investments in our future, buy some valuable art, and purchase additional things that successful people acquire. I carried a lot in my life without fully understanding the critical weight of the load. My transformation into a woman with more profound obligations to herself and her disability arrived both abruptly and painfully when I had standard surgery for a herniated lumbar disc.
My surgery did not go well. I had headaches that would not go away. I required three surgeries in three days and they still did not correct the original problem. Then, infections in my cerebral spinal fluid required doctors to perform multiple surgeries on my brain. I was in the hospital for six months. I can't remember much of the months prior to my surgery or most of the time I was in the hospital. God has sheltered me from the pain of my illness. I do know that the outcomes from the surgeries caused many of the obligations that my family, friends, and I had to change dramatically.
I was always the caregiver in our family. I did the shopping, cleaning, raising kids, cooking, and paying the bills. Now I needed others to take care of me. The funny thing that my spinal cord injury has taught me is that to find myself, I have had to give my care over to others in a way I never have experienced safely before. This was a very difficult change for me, as well as for those who love me. Most of my life had been about supporting others. Most of my life had proceeded in ignorance of deeper debts and deeper losses. How could I just sit here and let others care for me? I felt like such a burden on those who loved me.
I feel I am alive today because of my husband's love and his marital obligations towards me. In order to survive, I at first had to, and now understand I can, rely on Allen's care. Feeling the weight of my care shift to his shoulders delivered a refreshing shock to me. Allen became my primary caregiver, my advocate, and my protector. He cared for my earliest needs after the SCI. He fed me, interacted with the doctors, shielded me from others, and made decisions about my care. It was no accident that the memories of my illness and events surrounding my six month hospitalization have been entrusted to him. I simply don't have them. I always knew Allen loved me. I just never realized the actions he would take to prove that love. And I never before understood the capacity in myself to accept that love and to honor his obligation as my husband.
This changing of roles did place a huge burden on Allen. He had to complete all of my former responsibilities as he picked up the burdens of our everyday life. Because he picked up so many and lifted such a heavy load from me, for the first time I can remember I could see that my own obligations were worthy. Not all the shifts in burden of this transition into disabled life ran one way. In his own way and time, Allen learned this as well, embracing the true meaning of being the provider he was intended to be. This lesson was not learned in an instant. During the time I was so sick, his mother passed away and he did not have the opportunity to mourn her death. He suffered with severe depression, losing his sense of worth, his job, and over 60 pounds. As I started to recover, Allen began to get worse. I became more aware of his difficulties as I got better. What I am describing to you is the importance we have found in observing the unique shape of our transformation together, the ups and downs of a marriage as I recover from this acute injury.
Allen came to the hospital every day and spent most of the day with me. As his depression worsened, he would come to visit me and stay only for a short time, explaining that he had things to do at home to get ready for my return. When my sister came from Florida to help him with me, she discovered he had not done anything. He had been so depressed that it had interfered with his doing ordinary tasks. I never confronted him on this. He told me one day that he was not even able to make it to the grocery store. I worried about him as I saw him lose so many pounds. He finally went to see a doctor to help him learn how to face his new obligations to me, to our family, and to himself. Imagine, two people realizing at the same time that our roles and our burdens of necessity had to change, could change, and would change, all for the better. This was Allen and me.
* * *
During my illness two major events took place in our family. My son, whom we call Trey, got married while I was still in the hospital. He and his bride-to-be offered to change the date of their wedding, but my husband told them not to delay their happiness on our account. Trey told me that all he wanted to do at his wedding was dance with his mom, but I told him I could not dance anymore. It was easier to jump on the first assumption I could think of rather than confront the new ways I could be in the world. People in wheelchairs don't dance, I thought, but Trey had asked me to do this for him, and I wanted this for him. I was his mom. I had only changed in my eyes, not in his. To do for him as I had always done, I needed to let others take care of me so that I could nurture my son. I could not accept less from myself and he would not accept less from me. He came to the hospital for us to practice dancing-he on his feet and me in my wheelchair. I cried when he left because I felt inadequate as a parent and thought I was putting a terrible burden on him.
On his wedding day, I got in my gorgeous blue dress, dyed-to-match shoes, and wavy wig that my daughter bought for me and was put in my wheelchair The dress made me feel beautiful and the wig hid my shaved head. Checking me out of the hospital, my husband put me in the accessible van he had just purchased. Every time he stopped for traffic or a light, I would slide under the seat belt, a little more and more out of my wheelchair. Who would have thought that a chiffon dress would slide so much on the cushion over my seat? Allen was frightened so much that he thought something was going to happen to me. He said that we could not continue to the wedding because he was afraid-likely another sign of his depression. I was laughing at the situation while Allen was yelling at me that this was not funny. He stopped and got me back into the wheelchair; I pleaded with him to take me to the wedding. When we got to the reception hall, Trey and his best man had to reseat me so I could attend the festivities. With Allen so tense, it was all he could do to sit rigidly nearby.
When the time came for our dance, Trey took my hand in his and led me to the floor in my wheelchair. I was so happy and proud of him. I was afraid that I would cry but we both had smiles on our faces during our time together. When it was over, I looked at my family and other guests who were all standing, watching us, and crying. Even in my wheelchair, we had had our special moment. Trey was far more perceptive than I because he realized how important his obligations to his mother were. From that moment, I realized how the obligations of my role as the caregiver of the family had continued but changed.
At the same time in my illness that plans for Trey's wedding were under way, my daughter Kimberly, who was pregnant with triplets, sadly lost one of her babies. One of my few memories during this time was of Kimberly crying very quietly at my bedside and telling me that one of her babies would be stillborn. She could see what I could not see-that I was not capable then of sharing her loss, of feeling the sadness, the upset for her I feel so much now. This, I learned from my medical team, was natural, since my body could only handle just what it needed to heal.
Kimberly's twin girls were born almost eight weeks early, small but healthy. I was able to leave my hospital to see my daughter and her wonderful new daughters at their hospital. My feelings have since returned. I wish now that I had been able to put my arms around Kimberly and let her cry. I will always feel it was her worry and concern for me that caused her loss.
As the eldest, Kimberly took on my role as family caregiver. I believe this placed a big burden on her because she had to manage more of our family's activities. Together with my loving son-in-law, she spent a lot of time at the hospital sitting with her father and me helping make decisions pertaining to my care and providing support for her father. When I came home from the hospital, she cooked family Sunday dinners. Where once I would have taken over her responsibilities, she took over many of mine. She told me she was taking on my role and its obligations just for a little while until I was well enough to handle them again. Because of my new disability she had to reach into her motherhood even deeper, deep enough for both of us. She says that sometimes she'd like to be a child again and learn from me, her mother.
Although I didn't know it at the time, my four sisters, brother, and sister-in-law, in their concern for me, left their own families to come to be with me. This was surprising, since I am the eldest and not used to the idea that all of them would and could care for my family and me. Since my injury, I have observed that our families can actually change and our comfort zones expand in overlapping ways that make us all close and more appreciative of each other. I have few memories of them being with me in the intensive care unit, but each has shared their recollections of that time with me. They all took on some of my obligations as the "oldest" sibling in the family.
After I had been home from the hospital for awhile, my sisters all came for a "sister's week-end." It was truly love and a found sense of obligation that brought them to Michigan in January from Florida, Arizona, and New York. I was anxious for them to see that with a lot of practice, I could again do for myself some of the tasks I used to do, which was a big accomplishment for me. I always knew my sisters and brother loved me, I just did not know that they could inspire and help me. They provided me with love and a closeness that I can't describe because they could be there for my family and me when we needed them. They tell me I am an inspiration for them, not because I am disabled but because I am learning and growing again to the best of my ability. And I can let myself feel their love. That love and support is far more significant than the material signs of success that I once thought so important.
I would be remiss if I did not touch on the special role of friends in giving me their love and support. Friends were my "gifts from God." More importantly, friends provided a unique element: they volunteered because they wanted to, not because they were obligated to me like family. My friends, always an important part of my life, grew closer during and after my illness. They could exercise choices among their obligations while I benefited by knowing they chose to keep and deepen our connections. I often think of my best friend Penny, who comes from 30 miles away to encourage me when my sense of self-obligation slips, or who gets me going when I would rather not. Penny is not scared of my wheelchair. She just loves me. She chooses me and she chooses my life with my injury. She and other friends supported Allen and my children during their time of need. They would tell me they knew I was strong enough to survive, and stretched themselves even further to worry about Allen or provide comfort for our children when I could not. Penny and others were obliged to me rather than obligated, but they took on the very spirit of obligation. My friends' obligations to me had changed how I view options in our care for one another.
But has my spinal cord injury changed me? Not at all, for I am still me. My injury helped me realize I made a contribution to this world and that I mattered. My illness shifted the balance between me and many family members-most of all with my husband. I learned I mattered most to him.
When sudden shifts in what we owe each other occur, both husbands and wives will typically experience much stress. In the beginning, I was fearful that I had lost my identity as the good wife, while Allen feared some new catastrophe. He labored somewhat pessimistically under his new burden of attending to my care at home. When I came home from the hospital he was even afraid to sleep in the same bed with me. He thought he would break me, something we were both afraid to discuss with each other but which hung over us like a dead weight. With many of the mistakes we made, our confidence grew because we learned I would not break under his touch. Additionally, Allen learned that he could handle me in most circumstances with great success. When he came back to our bed to sleep with me it was a wondrous sign of his acceptance of new roles for us and the beginning of the end of his depression. For me it marked the beginning of my self-acceptance, not only as a wife, but as a person of special worth, worthy of a strengthened marital bond.
(Continues...)
Excerpted from DEEP Copyright © 2006 by University of Michigan. Excerpted by permission.
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