Until I Say Good-Bye

Neuronote #5
Until I Say Good-Bye

by Susan Spencer-Wendel 

I read Until I Say Good-Bye, which is a memoir written by a highly awarded journalist during her battle with ALS. As I have said many times before, the best way to learn about a disease or injury is to step into that person's shoes. There is no way to truly understand what a disease like ALS is like unless you have experienced it for yourself or seen a love one suffer through it. Susan wrote this book in such an elegant way, it is hard not to develop a new found perspective from it. While reading this book, I was able to take so many different perspectives from it. I could see it from the point of view of an OT, a daughter, a friend, and a person with the disease. Susan also wrote this memoir in way that I could honestly step in her shoes and feel the emotions she was feeling. Not only did I learn so must about the disease itself, but I learned more about the perspective of someone who is terminally ill. 

From the perspective of an occupational therapy student

• Reading this book taught me so much about ALS that is hard to quickly sum it up. One of the most interesting things I learned was that extraneous exercise is basically deteriorating. Susan walked down and back up a large amount of stairs and by the time she got back up, she said that she was so weak and never felt the same again. This is because the muscles do not have the ability to repair themselves after a hard workout like taking many flights of stairs. I find this information very interesting to take in as an OT. This would come into educating people, because even though she did not regret her decision to go to the beach, she was not fully aware that she would never regain the strength she had before the stairs. In many more instances, Susan did extraneous activities fully aware of what she was doing to her muscles. 
• One thing I continuously thought while she was in the denial stage was that she should be getting OT. She was busy avoiding the fact that she had ALS when she could have been working on techniques to prolong her time at her job or even her all around independence. But she also did not speak about her doctors visits, so maybe she was getting OT. I couldn't help but think that there were so many adaptive tools she could be using. She quickly lost her ability to feed herself and dress herself, which would be the perfect thing for an OT to help with.  Something as simple as dressing or feeding equipment could have made her and her husbands like a little bit easier. 
• Sometimes there is nothing you can do for a person more than making sure they are happy and supported. At one point in the book, it was Christmas and a friend sacrificed her time with her family to bring Susan and family a Christmas dinner. Susan could no longer cook for her family and this was an amazing gesture. This is a reminder that sometimes there is nothing to be done for people, other than providing a support system. 
• I found it interesting when she had to switch from an iPad to an iphone to type the book. She lost strength in her hand but could still use her thumb. I have never thought about having to go smaller when using an iPad as an adaptive tool. 
• Often times when Susan was eating at a restaurant, she was asked to leave during closing time. She took so long to eat a meal that it would take hours for her to go out to eat. I think this is something I could consider if I worked with someone with ALS. Everyone likes to go out to eat, someone who eats slowly shouldn't be limited to that pleasure. As an OT, I could recommend they arrive at the restaurant hours earlier to closing. This way, if it took her three hours to fully complete a meal, she would have the opportunity to do so. 
• At one point, Susan was put into a handicap accessible van. This van had a wheelchair lift so she did not have to get in and out of the chair, though she was capable. Her sister made the comment that she felt as though she was taking Susan to the dog pound. Even though they often made jokes about the situation, this hurt Susan's feelings. When she was taken out, Susan said she was unloaded like cargo. For anyone who had to be put into a van like this, this needs to be put into consideration. How can these vans be made me people friendly? How do we make the people in the wheelchair not feel like cargo? We should never belittle a person for the sake of making something easier, it's not worth it. 

From the perspective of a daughter

• Throughout this book I could not help but picture my mother while she talked about her family. Though my siblings and I are older than her children, I wonder how we would handle it. Her children did not fully understand what was happening but if it were my mom, I would. As a child, what is the best way to help a parent in this situation? For Susan, the simple question of "mom do you need anything" was enough to make her feel loved. 
• One of my biggest fears in life is that one day my parents might come down with a disease like this. I would do everything in my power to help them but it would be hard to watch. Susan gives the perspective of a parent in this book. How will her children remember her? What can she do to make that memory positive? How does she deal with her disease and be a mom at the same time? I think it is important for children to think about the fact that their parents are thinking these questions. As a child, it is important to reassure your parents that they are not a burden on you. 
• I truly respected the way she handled her son's Asperger diagnosis so closely to her ALS diagnosis. She dropped her own needs and focused on what her son needed to live a happy life. If this isn't the definition of a great parent, I do not know what is. She could not physically take care of a dog, but she still got her son a dog because that is what he needed. I think this is something that he will eventually look back on and realize. There will come a day when the memories burning in her kids heads lead them to research this disease. One thing the may remember is their mom who could barely walk, going on an expedition to get them a dog. If not memories, I do think/hope her children will eventually read this book and realize so much about their mom.  
• One thing that made me increasingly sad was Susan's teenage daughter calling her "cute". Her inability to care or sympathize with her mothers condition upset me. Not for Susan, because she had come to terms with her reality, but for Marina. I remember being the worlds brattiest teenager and to this day, I regret the way I acted towards my mother. It is hard to think of the regret Marina may face when she matures and looks back at the situation. I don't say this because I think she should feel remorse, but because it is inevitable. Being a teenager is hard, but being a teenager who's mother has a progressive condition is a whole other world. 

From the perspective of a friend

• Susan's friend Nancy was there every step of the way. Anything Susan needed, Nancy was going to give to her. If my childhood best friend came down with this would I be able to do what Nancy did? I can only hope so. 
• I think about their trip to see the northern lights and Nancy having to dress her friend in order to do anything. Putting so many layers of clothing on oneself is frustrating in its own, but having to do that double time is quite an ordeal. Nancy did a good job of hiding her frustration, if there was any. I cannot help but think if that would be a frustrating aspect for me? Nancy continued to go on trips with Susan even though it was more of a job than a vacation. She was exactly what Susan needed in her life. 
• Susan's sister Stephanie was an amazing caregiver for her. She is a respiratory therapist, therefore she knew how to be a caregiver. One thing I found interesting was that Stephanie would light her sisters cigarettes for her. She spends forty hours a week probably loathing people for destroying their lungs, yet she did what her sister needed. Sometimes people need support like that, not judgement. Stephanie put her thought and opinions aside and did what her sister needed from her. 
• I found it interesting how Nancy was the primary base of support for Susan during the beginning but towards the end Stephanie was the one always there. There both stayed by her side but as she needed more help, her family had to take on more of the responsibility. Maybe this was because Stephanie was more qualified or because Susan preferred Steph. Regardless, I found that to be a very interesting concept to think about. 

From the perspective of a person diagnosed with ALS 

• Susan's mother and son were diagnosed with an illness fairly early into her own diagnosis. I find her strength amazing in the aspect of her main concern was them. She is a person who was given a death sentence, yet her only concern was the happiness and health of the people she would be leaving behind. This shows the strength of her, but it also shows that life does not stop just because you have been given a devastating illness. Nothing stops, good and bad things still happen, and you have to deal with all of them while battling your own issues. 
• There were so many instances in the book when Susan was looked at as an alcoholic. This broke my heart every time. At one point in the book she got cut off on a night that she hadn't had a drop of alcohol. How devastating would it be to try to live your life with an illness like ALS and everyone around you just thinks your an alcoholic? People are judging you for your sloppiness and inability to control yourself. This was a reminder that you never know what people are really going through. It is easy to draw preconceived notions about people, but typically assumptions are never true.
• In one part of the book Susan reflectively asks which role is worse: being the dying spouse or the surviving spouse (in reference to her husband John). This is a thought that should be considered. Is it worse to deal with your loved one having ALS or having it yourself? From someone like Susan, I think it's worse to be the surviving spouse. She came to terms with her disease and embraced her future. John just did whatever was needed to keep the family going and his wife taken care of. Throughout this book "poor john" was a common phrase that went through my head. 
• Writing this book was one thing that keep Susan going on a daily basis. Everyone with ALS needs something to make their life meaningful. What Susan did made her life meaningful, but also helped so many people. This book is an amazing tool that can be given to family members who have a loved one with ALS, health care providers like myself to learn some prospective, or everyday people so they can learn that everyone in a wheelchair isn't mentally challenged.

It is hard for me to write about this book and not make a comment on every single page. This was a summary of the many things I took from this insightful piece of work. This was an amazing piece to read as a student. I would recommend it to everyone and anyone. 

Reference: 

Spencer-Wendel, S. (2014). Until I say goodbye. Leicester: Charnwood.