Memoir Monday (UBC day 2)

Ever since I had the stroke I have felt called to write a book about my experiences. In my mind, I have what I think is great insight which I think can help someone else, but the eloquent words are mostly stuck there, in my mind. That is how my aphasia feels. It’s not just finding the words, but being able to telling the full story in a logical cohesive way.

If you’ve been reading my blog you might say, “but she CAN write. Look at all the blog posts. Why does she say she can’t? I don’t see any writing challenges. Is she just trying to make us feel bad for her?”

Anyone who knew me before the stroke knows me to be a different now. I won’t say that I’m a “different person“ because I think that is a generalization that many people use when they want to explain the challenges they now have. Having a stroke does change a person. (Part of the brain is damaged irreparably.) But all experiences in life does, I believe. Disappointing experiences, trauma, happy experiences, changes of status (being married, divorced or separated from the one you love), new jobs, ends of jobs - you name the experience, it can change you. Throughout our lives, we change and we grow hopefully.

I’m still the same person. I’m still Cheryl. Even when I couldn’t say my name. (The “sh” sound was very difficult for me at the beginning. The only other name I had a lot of trouble with was “Jeannine” which is my daughter’s name. I still have trouble with “j”.) I thought this from the moment my stroke/aphasia journey began. I love the same people. I have the same quirky sense of humor. I‘m still an introvert who can present as an extrovert when I need to. I still love to connect people. I still believe in God.

But, I communicate very differently than I used to. I struggle to verbally say what I want. I stutter saying many words especially those that start with certain consonants and especially those that begin with a consonant blend. I have to spell out even simple words When writing. I skip words especially articles. I sometimes say yes when I mean no. And I often confuse pronouns.

I sometimes try to avoid situations I liked. I want desperately to be able to tell long stories as I used to before. I get neuro fatigue that affects my ability to do most things, even things that most people take for granted. I had to leave my dream job.

I’ve been trying to fit the various stories and experiences in a book form, with chapters and a cohesive theme, but haven’t gotten very far in three and a half years. I’m almost ready to admit that I may need help to get my story fully out. Almost!

When I was working with my third speech therapist, Lucia, she helped me tremendously with writing. Together we were able to put in writing what could be the first chapter, at the hospital. It is in draft form and would have to be expanded and edited to a memoir type of format. But it is something I am extremely proud of. Thank you, Lucia. I will share this presentation in its draft form under the picture at the end of this post.

This was written with hospital staff in mind. I don’t know if anything has improved in the years since I was admitted but I believe that an inservice training could help. We were not able to successfully send this or present this to hospital administration. Recently I spoke with a friend who may have a contact that I can send it too. Keep your fingers crossed. I would like to think my experiences can help educate staff so nobody else has to endure what i did. The communication issues could have been solved with easy, inexpensive strategies.

As we progress this month, on Memoir Mondays, I will share what I’ve done in the past 3 1/2 years to get my story out.

until then…

here’s what my book cover could look like.

a review of my hospital stay - chapter 1:

Draft of Cheryl’s Presentation 12/08/2020 Frame/Context: RIH sent me a survey. What made you want to do this video/presentation? (Why are you doing this video?) On Friday, May 10, 2019, I had a planned, outpatient surgery to repair my rotator cuff. That surgery went well and I left the same day, as planned, with an abductor sling on my right arm. Since I had a nerve block, I didn’t have any feeling in my arm. About a day and a half later (early Sunday morning), I woke up and couldn’t speak. My husband called 911. When I got to the Emergency Room, they told me I was having a stroke. A long day and a half later, I went home. The entire time I was in the hospital, I could not speak at all. I didn’t know it at the time, but this was because I have aphasia and apraxia from the stroke. (later on I will tell you more about aphasia and apraxia.) After I came home, I received a survey from the hospital asking for my feedback/opinion on my hospital stay.

Since receiving the survey, one of my goals has been to share my story with hospital staff in hopes that they can learn more about working with/ caring for patients who have communica2on problems. I can tell you that I had both really positive interactions with staff and not so positive ones. Communication broke down in a number of ways both in the emergency room and in the stroke unit. I may have been unable to communicate with staff verbally, but I was able to understand them well enough and I remember most of what happened to me very clearly even today. It has taken me this long to be able to tell my story effectively. I had to work very hard at speech therapy both for speaking and writing. Recovery from aphasia is a long, slow journey and I’m so grateful for the wonderful support I was given by my speech therapists the past 18 months, especially Lucia Watson who has helped me with this project. You men2oned you wanted to let the hospital know about the communica2on you had with staff both the posi2ve and nega2ve. Can you share examples of the communica2on you had with staff? Yes, the reason I wanted to complete the survey was mostly how I was treated because of my inability to

speak. The standard form they sent me didn’t really allow me to focus on this one issue fully and so this video seemed like the best way to highlight it and also be able to share what I’ve now learned are good strategies for working with people like me who have aphasia or other communication challenges. First I would like to share some positive interactions I had with staff in the emergency room. I arrived in the ER alone. My husband and sister arrived shortly after. Before my family arrived, all the doctors and nurses called me by name and told me what was happening. That made me feel cared for. I wanted to know what was going on but I couldn’t ask them questions or share how I felt so it was nice that I was told about what was happening. After having some tests done, I was brought to my bed in the emergency room to wait for a room in the stroke unit. The nurse welcomed me and got me se\led. Throughout the day, staff told me and my family that the hospital was full and that it would take a while to get a room. I spent the en2re day on Sunday in the ER and was brought to the stroke room on Monday morning.

When the shift changed in the late afternoon, I had a head nurse who spoke directly to me. He took care of me through the evening and made sure I was comfortable. He talked to me about my shoulder surgery and about pain. He made sure I got the pain medicine I needed every 6 hours. I was scheduled for the MRI and he asked if I needed to have medication to relax. Unfortunately I was taken for the MRI without having time to get the medication. How do you think he was able to understand your needs? I’m really not certain, but he was the only one who really asked about my recent surgery. He took the time to really see me as a whole person. It was nice that he spoke directly to me even though I really couldn’t talk back. He seemed to know what I needed – the bathroom or medication or just that I was scared. He spoke to me in a way that made me feel safe and cared for as a whole person, not just as a person who was having a stroke.

Were there other examples where staff didn’t communicate well with you in the ER? Unfortunately there were a few staff members that didn’t make me feel as safe as before. For some background information, when I had my surgery to repair my shoulder I was instructed not to remove the sling until I saw the physical therapist and ensure that I didn’t fall. In the early evening, a nurses’ aide came to take me to the restroom. When she guided me by the right arm, all I could think of was falling and ruining my repair. I felt not just uncomfortable but I felt unsafe. I wish she had known that it was unsafe. My husband was still there. Although I couldn’t tell her to be on the left side, she could have asked my husband about the sling. In a similar way the MRI technician also concerned me. On the way to the MRI he was talking to another staff member at times and at times to himself about the concern about putting me in the machine with the sling on. He was debating taking off the sling to do the procedure. While lying there mute, I could only think that

removing my sling might mess up my repair. At least he was talking out loud so I was aware of what was happening. Somehow in my mind I thought that I would be able to make him know that I didn’t want the sling removed. At the end he didn’t remove the sling and it all worked out. During the middle of the night, I don’t remember very many people talking to me or doing anything. A few times when I needed to use the restroom, a nurse or aide came to take me there. When I finished, no one was there so I had to make my way back, even though I was wobbly and had the sling on. I had to use the wall for support. Now I wish the nurse had pointed out the emergency cord in the bathroom or even told me how to get her attention when I was ready. Or she could have waited there for me. The nurses’ aide didn’t really talk to me. Nobody made me aware of what I needed to do. So I took it upon myself to make my way back to bed as best I could. I see now that I’m pretty stubborn. And in the early morning hours, I remember a nurse just walking in, and doing the finger stick for my blood sugar, leaving and coming back and just giving me

insulin without ever talking to me. If she had communicated with me, it would have been so much better. Since I don’t use insulin at home this could have been scary. Fortunately, I had had an experience previously in the hospital where they needed to give me insulin, so at least I wasn’t completely taken by surprise. When did you finally get a bed in the stroke unit? And did the communica2on get be\er there? At 7 am on Monday morning, I was brought to the stroke unit. A head nurse welcomed me and got me se\led and told me that the nurse who was assigned to me would be in shortly. Even though I was only there for 12 hours, I had a lot more interac2on with hospital staff - neurologist, my nurse on the unit, a nurse’s aide, a speech pathologist and students and technicians for tests. Maybe interac2on is a generous term / the wrong word here: staff talked to me or my family when they were able to be there. Here, I felt more frustrated by the “interac2ons” because of my inability to speak and I felt that what was happening at the stroke unit was even more important for my recovery than what happened at the ER.

I remember so many 2mes that I wanted to speak (yell) to tell them what was happening with me. it would have been so nice to have the ability to communicate with them and with my family for them to advocate for me. I know now that there could have been supports provided to me for communica2on. If I were given any supports for wri\en communica2on such as a communica2on board with pictures or even a pen and paper, many of the miscommunica2ons could have been avoided. As I was recovering from my recent shoulder surgery, I was due for pain medica2ons every six hours. During my 2me on the stroke unit, I never received any pain medica2ons. When we were leaving, my husband asked when I was given the last pain medica2on so he could give it me at the correct 2me, he was told, “She didn’t receive pain medica2on while here because she didn’t ask for it.” As part of the speech assessment, the speech pathologist did a bedside assessment of my swallowing. She gave me a cracker to eat and I coughed while trying to swallow it. She then ordered that my water be thickened and my food modified for

my next meal. It seems clear that I had a swallowing problem. She told me and my sister who was there at the 2me, that she would order a formal swallow test and that it should be done before I got discharged. “They some2mes try to get you out of here quickly, so I will make sure you have it before you leave.” As she was leaving she told my sister that I would be given a sheet with pictures on it that would help me. When I was being discharged, I wanted so much to raise the issue of the swallow test but I couldn’t, of course. My sister wasn’t there, and my husband wasn’t aware of the issue. So, I went home without having had a swallow test and my husband was not given much guidance about my diet and how to make sure I didn’t choke. When the nurse gave my husband the discharge instruc2ons, I remember hearing that he was having trouble. My nurse had a pre\y heavy accent and he had to ask her to repeat many things. He was given several packets of thickener and told to thicken water, but we weren’t given any other instruc2ons or guidelines on what to eat. The nurse from the VNA

didn’t come to see us for a few days and the SLP came 5 days later so my family basically was on their own. ● When leave the neurologist came to my room, she talked to my husband but did not address me at all. I wasn’t even aware that she was the neurologist. She told my husband that “she is out of it.” And even though this was not a big issue, it would have been really nice if I could have asked about being more comfortable physically. It was hard to get comfortable in the bed when they readjusted me throughout the day. it also would have really been great to brush my teeth or wash my face. I had been in the hospital for many hours, but no one helped me with or even asked me about this. I felt grubby and would have appreciated the opportunity for some personal hygiene. Throughout my time at the hospital a number of staff didn’t speak to me directly. Didn’t speak to me at all or spoke to only my family when they were there. I felt insignificant at times to hear them talking about me rather than to me. Several people asked me to speak even after it should have been my chart that I couldn’t. It happened more

than once that when I rang the call button I heard “what you do need?” Throughout my stay it became obvious that staff wasn’t on the same page regarding my communication abilites or even my discharge plans and after hospital needs. SUMMARY: (feelings) I really appreciate your taking the time to hear my story. Communica2on is important in our daily lives, but it is so much more essen2al when dealing with healthcare needs. I know this to be true from my experience teaching adult educa2on. There is no doubt in my mind that I was given good basic care at the hospital. But because I couldn’t speak, I couldn’t fully participate in my care decisions or share my concerns with family. Had I been offered some communica2on tools, even simple ones like a paper and pencil, this story would have been different. This has mo2vated me to tell my story and to share it with health care professionals in hopes that they will benefit from seeing what worked for me and what didn’t. Even though I don’t know their names, I would like to thank the hospital staff that took the 2me to

communicate with me directly or listened to any nonverbal clues that I gave them. For me that made the difference. I am no expert in the field of speech language pathology or _______ aphasia. But I have an extensive background in adult educa2on and workforce development and I have a passion for helping people. But as I was working on this presenta2on, I connected with experts in this field who would like to provide in-service to healthcare professionals especially when working with aphasia or other communica2on challenges. [connec2on to second part: Here’s some informa2on on tools and strategies you can use. Start PowerPoint. Communica2on takes many forms.