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At the End

Gwendolyn Scott

Gwendolyn Scott is a poet and landscape architect. She originally contributed the following two-part essay to EAP as two separate pieces about her recent experiences of caring for her brother as he succumbed to ALS (amyotrophic lateral sclerosis). Better known as Lou Gehrig's Disease, this motor-neuron illness causes a person's muscles to atrophy because electro-chemical connections are increasingly unable to signal bodily movement.
    Scott writes: "My brother died peacefully at home in February, 1996, after two and a half years of living with ALS and the attendant pain in his joints and skin. In what follows, the reader might get the sense that only my mother and I took turns seeing to my brother's needs. Not so. We had the help of at least twenty others, including night-shift friends, hospice nurses, counselors, and case workers. My mother and I could barely believe the `circus,' as we called it, that our normally quiet life had become. It was this sense of `unreality' that prompted me to consider the theme of privacy."
The second part of Scott's essay was written after her brother's death and describes some of the projects he designed after he contracted ALS. She continues: "Before my brother died, we had a num­ber of conversations about his design work. That is, he signed in Morse Code: pursed lips like a kiss signified a dot, a smile signified a dash. He would wiggle his eyebrows at the end of a word, and I would respond vocally. This method of communica­tion was time-consuming and frustrating. It was amazing, however, how communicative, almost verbal, his face became. He used almost every part to communicate with us."  
© 1997, 2003 Gwendolyn Scott.



    Recently, I moved from a small town in Iowa, where I worked as a resource specialist inventorying various parts of the Loess Hills Scenic Byway. With my cat, Stella, I lived in a small two-bedroom house with a large back yard. I now live north of San Francisco in a small two-bedroom house with my mother and younger brother, who is dying of ALS‑-the motor-neuron disease that killed Lou Gerhig.

    My mother has one bedroom and my brother the other. I have a small triangular space at the far end of the living room where I have my futon couch/bed, my mo­ther's low Japanese desk used as a night table, a night stand, and my great-aunt's sewing table on which sits my computer. My clothes are in a chest in the hall which separates my mother's room from the bath­room. I have less than half of one closet and a third of another in which to hang clothes.

    My space is delineated by the tire tracks of my brother's wheelchair as he crosses the open space to the sliding glass doors on his way out to the deck. As I sit writing at my computer, I'm aware that I'm a sitting target for anyone who feels he or she can come talk to me because I'm in the "public space" known as the living room.

    I remember reading that Jane Aus­ten wrote in her family's sitting room and had to hide her work when others entered the room. I feel the same way when some one approaches, not because he or she would be upset by my writing, but because I do not want to explain what I am doing. I am not sure where what I am writing is going and want to explore by myself.


 The need for creating privacy be­came apparent as I settled in, not just for myself but also for my mother and brother. We use a number of tactics to meet each other's needs.

    One tactic is schedules. My mother and I have worked out how to do our morn­ing rituals, while using a baby monitor to hear my brother when he groans for some­thing he needs. We each do our own sepa­rate rituals, eat breakfast separately, before my brother is ready to start his day. We also adhere to afternoon schedules as much as possible. When I have time off, I make sure I leave the house and not continue to do things for my brother.

    Another tactic is to leave the house, which I do daily, even if it is only for a short walk down the hill and back. Most of the time I go hiking in the nearby hills. The canyons of oak, madrone, redwood, and bay are quiet during the week days. I rarely see anyone else. I feel sheltered as I walk under the filtered canopy of oaks or the deep shade of red­woods. There is enough change be­tween oak savan­nah and forest that I do not feel claustro­phobic.

    I also go to a coffee house to draw. An acquain­tance thinks it interesting that I should choose a coffee house for privacy, since he frequents the place for companion­ship. Yet there is a table, coffee and concentration.

    Another tactic I have is to keep my friends sepa­rate from the friends of my mother and brother who help us on night shift. My friends are mostly professionals who live too far away to help with my brother. We meet for lunch and talk about our lives. I try to limit how much I talk about my brother. I would rather focus on other aspects of life that have been put on the shelf, at least for the moment. I also drive north 375 miles every other weekend to visit my sweetheart for three and a half days.

    My brother also needs privacy. My rule is not to use his room as a passage to the bathroom. I go around to the bathroom door in the hallway instead of cutting through my brother's room to enter. I knock on his door, as well as my mother's, if either is shut.

    Though I know that my situation here is tempo­rary, I'm surprised at how not having my own room has affected my ability to feel creative and loving. I have had my own room since I was eleven. As an adult, I always have had some kind of office. I have had space in which to think, create, write, to shut the door and simply be. 


I write this after a long holiday weekend with my brother but with no break from his usual Friday caretaker, who needed time with her family. During the weekend, I despaired of ever finishing this essay. Time did not flow smoothly but stretched outward to the horizon. Would I ever make it through with some kind of equanimity? In fact, I did not. I reached the point past burnout. I knew I had reached it. I do not think I have ever felt so used up and spit out. My sleep was restless, no relief. I woke dazed.

 Fortunately, my mother took me to church, where the minister spoke movingly about dreams as a connection to the divine. We went to lunch and I began to feel myself again.

 Next, I went for a long hike in the hills to see if I could spot the white umbrella under which my brother sat on the southeast deck. No such luck‑-our Oregon White Oak hides the house. But I was up on the ridge tops with a wonderful view of the north San Francisco Bay. The north wind had blown the smog elsewhere, and I could see the Richmond Hills.


    It would be easy at this point to bring up Virginia Woolf's ideas about A Room of One's Own and from there to discuss how not having privacy or space could lead to subjugation of self and the whole of woman­kind. Instead, my aim has been to look at what happens to me, who has had and will again have a private space. My mother was wishing that I had some way to "take ten." My thought, though I did not say it aloud, was "take ten where?"

    As a landscape architect, I now truly have in my bones the knowledge of the need for garden as refuge. One of my challenges will be to extend that knowledge to public spaces. I am reminded of the pattern in Alexander's Pattern Language (Alexander 1977) concerning sleeping in public places. I am also reminded of Alexander's failed Mexacali project in which he used his pat­terns to create low-income housing that the residents built themselves (Alexander 1985; Fromm & Bosselman 1983-84).

    One way in which the experiment failed was its use of outside entrances to an inner courtyard avail­able to all the residents. Outsiders used the space as a shortcut--a behavior disruptive to the residents' ability to create private zones near their dwellings and to use the courtyard as a communal space. Partly because of this failed court­yard, there was no way for them to create rituals or common courtesies to knit them together as a community.

    This experience underlines a long-held thought: that privacy and community go hand in hand. For me to want to reach out in a loving way to others, I need time and space to myself.



    When I wrote the section above, I was thinking about myself as a designer and how I coped with a set of circumstances. I am not, however, the only designer in my family, and I want to describe some of the projects my brother designed after he con­tracted ALS.

    My brother spent most of his adult life as a designer-builder, having gone the usual route of apprentice to journeyman to carpenter to contractor. The person he apprenticed with is an imaginative designer as well as builder, known for his curving structures and use of a router to round the boards themselves.

    Though my brother had no formal training, he was influenced by the Art Nou­veau style and Frank Lloyd Wright, as well Bernard Maybeck and the Arts and Crafts movement. The year before he contracted ALS, he had a change of heart and mind and enrolled at the local junior college in preparation for nursing school.

    The more I worked with my brother and the weaker he became, the more im­pressed I was with the way he continued to design for his comfort and for his caretak­ers. I had helped him with building some of his inventions and thought he might have something to say about his design process. I talked to him about the possibility of writing an article about his designs and inventions. He responded in Morse Code:

 My experience of designing has come from a hands-on ap­proach. I would say to get out of the mind and into the hands. Energy follows attention. Let the mind follow the body.


    Indeed, my brother's designs fol­lowed his course of ALS. That is, while he had bodily strength, he designed on a large scale. The weaker he became, the smaller and lighter were his projects. One of the first projects I helped him and his mentor with was a turntable platform for his van. As the wheelchair access by mechanical lift was on the right side of the vehicle, the wheelchair faced sideways once it was inside, since there was no room to maneuver it face forward. The platform allowed the caregiver to turn the wheelchair with my brother in it around to face front. The shape of the platform was oval on one end and straight on the other with a beveled edge to allow the chair easy ascent.

    At first, my brother wanted some kind of caster for the platform. However, it took several tries and hardware stores to find the parts right for what would work in the situation. Eventually, he used hard rubber wheels on steel axles inserted into the sides of the wheel slots. Once the plat­form with its non-slip strips was in place, tie-down belts for the wheelchair were installed so it would not roll around.

    What interested me most about this particular project was watching my brother come up against the fact that what he had in mind‑-the idea of casters‑-was not going to work‑-that he had to let go of the idea to see what would really work. 


    For the first year and a half, my brother lived in his home on the side of Mt. Tamalpais. His hand­made house of one long main room and three side rooms was built over the hillside with three steps down to accommodate the landform. As his legs steadily became weaker, these stairs present­ed a problem. He had a barn track installed along the main ridge beam and used a pulley system attached to the track and a bosun's seat attached to the pulleys to carry him from his wheelchair to his bed. The care­giver could then gently let him down into bed, which was at the far end of the track. My role in this project was to be the strength standard. That is, if I could barely lift him, then we had to increase the ratio of the pulleys. Once I could lift him, then his other caregivers gave it a try. The pulley system finally worked at an 8 to 1 ratio by modifying two pulleys to work as one.

    One might ask why my brother didn't install a ramp. For one reason, the area outside the front sliding glass doors wasn't big enough to maneuver the wheel­chair to enter easily. Second, the house wasn't big enough to accommodate the wheelchair once it was inside. Third, the slope ratio was too steep for safety. Fourth, even if he could have designed around the above impediments, the idea of leaving the chair outside and gliding across the room was a fun, whimsical way of handling an ongoing painful situation.

    Though I did not work on it, another project my brother designed was called Little Nemo's Flying Bed. His hospital bed was placed on a platform that was mounted between four columns, which held rope threaded through winches attached to a single motor under his bed. When the motor was turned on, the ropes lifted the bed platform up and out of the sliding skylight. The point of this invention was to be able to be outside once he was confined to his bed. On the outside wall next to his bed, he had designed a built-out cabinet to house his stereo equipment, computer, television, and CD collection. Unfortunately, my brother's body weakened too thoroughly to live alone before the bed platform and cabinet could be com­pleted. 


    After my brother moved into my mother's house, he designed a small fold-out table on which his computer rested, either out and ready for use or folded up and out of the way. To remain slightly independent, he collaborated with family members to design a toe-driven electronic system which allowed him to turn on the TV and change channels, to raise and lower the hospital bed, and to use his computer without his hands.

    This method of using his big toe worked for a couple of months before his toe became too weak to push the button. Then we worked together to rede­sign the control device. My brother suggested a baseball cap with a light wand sewn on top, which could be directed at a light-sensitive source that could be wired into the blue plastic box that held all the electronic cir­cuits. For the light-sensitive source to pick up the wand's beam, the room would have to be very dark. This scheme was not practi­cal, however, since by this time my younger brother often had two or three people in the room caring for him. The final outcome of the project was a long copper antenna sewn onto the top of a baseball cap, which, when my brother slightly turned his head side to side, connect­ed to two other antennae hooked into a board at the top of the bed. He was able to use this device for about two weeks before his neck muscles became too weak and painful to turn even slightly. 


     Over time, my brother's body lost most of the muscle mass a healthy, vigorous 38-year-old male body usually has. He barely had enough muscle in his legs to help with transferring from his bed to the wheel­chair. This did not stop him from continuing to design and redesign for his body's deteri­oration, especially after he was bedridden.

    The down pillow he had been using to cushion his hands on his lap reflected too much body heat. My brother suggested a folded towel in a pillow case. When I went to move his hands from palms down to palms up, however, his hands would not stay where I put them. My brother spotted the cardboard at the same time I did, and I cut it down to fit the inside the towel. The resulting "pillow" was light enough for his legs, stiff enough to prop up his hands, and could wick away any perspiration.

    As his neck muscles weakened, we tried folding his down pillow to better bol­ster and support his neck. He could not, however, stay comfortable for very long. Finally, he hit on the idea of cutting some foam pieces into wedges, with which we could prop his head and take the pressure off his neck.

    Another problem arose while he slept. His whole upper body would slump over to the side, and he could not right himself. Only his groaning woke the night attendant, who would then carefully pull him upright. To stop this, my brother suggested using a stiff foam pillow we had been using for his wheel­chair as a "stopper" between his pillow and the wall. To keep this stop gap from sliding down, we used a 4" x 4" x 18" piece of foam wedged in at the bottom of the pillow and the wall.

    My brother lived for another month, during which we kept him as comfortable as we could. As painful as it was to watch him deteriorate, I felt honored to work with him. I could see how, to the end, his projects and problem solving followed his dictum of "Let the mind follow the body."



Alexander, C., Ishikawa, S., & Silverstein, M., 1977. A Pattern Language. NY: Ox­ford Univ. Press.

Alexander, C., 1985. The Production of Houses. NY: Oxford Univ. Press.

Fromm, D. & Bosselman, P., 1983-84. Mexacali Revisited: Seven Years Later. Places, 1, 78-90.