If you read last week's post, you know I listed all the accomplishments I had in 2023. I am proud that I could do all these things especially with aphasia and apraxia of speech. Of course, I didn't tell the whole story. I hope to give some more details today.
The last post was part of a reflection I do at the end of one year and the beginning of a New Year. Doing so helps me remember how far I've come. I didn't always do. this.I realize although the blog is primarily for me to document my stroke/aphasia/apraxia journey, some people do follow me and I'm extremely grateful. I don't think I can properly explain how grateful I am.
Everyone's journey is so unique, but there is always some commonality that makes our story helpful to others. I try to remember that this is also one of the reasons I write this blog. I so want to help others thrive even with communication challenges. If I can do it, so can anyone!
What I failed to convey in the last post was that in order to accomplish everything I did last year, and of course every year of my life, I had help. We don't live alone on a deserted island fending for ourselves. Of course we have to do our part - work hard, have goals, see opportunities, keep motivated when times get tough, persevere, etc. It doesn't happen magically.
Let's look at some of the things I "accomplished" along with details of who helped me:
created and ran Finding Our Voices, a public speaking group for people with Aphasia
I participated in a toastmasters group with the Boston University Aphasia Center in 2022. It was there I discovered how important it was to me personally to have a weekly group where I had to write, rehearse and deliver a presentation with other people with aphasia. In 2023 I found a group organized and facilitated by Dr. Brielle Stark of the University of Indiana and Deb Stark, Brielle's mother who is a toastmaster expert. This once a month group in the evening helped me to further progress. I learned more about presenting to a group especially on zoom. It was during this group called Public Speaking and Learning Community (PSLC) that I decided to create and facilitate my own public speaking group, ,Finding Our Voices, created for and run by people with aphasia.
To get participants, Dr. Stark announced the formation of this new public speaking group to our PSLC. I also contacted Seth from the National Aphasia Association (NAA) to tell him about this new group and he helped promote the group to the groups he runs for the NAA.
So without the help of these people, this group of 10 would not have ever met. We ran Finding Our Voices from February 15 until December 15. It is only through the determination and persistence of these 10 individuals with aphasia that the group was so successful. I learned so much from this amazing, talented group of people. (Just so you know, we are working on the next session of the group as we speak. If you know of anyone with aphasia who wants to join, we have a couple of spots left.)
finished RI Hospital project and presented it to them (with Just ASKs help)
If you've been following this blog for awhile you know that this project has been dear and near to my heart ever since I first received the survey from RI Hospital weeks after my hospital stay after the stroke. So for 4 long years, telling people who could make valuable changes in the way staff communicates with people affected by communication challenges, was one of my main goals. I didn't have the words to do this effectively with my first 2 Speech and Language therapists. With my third SLP, I started the project. Before leaving speech therapy, I had a draft of the project (thank you again, Lucia). Finally, this year, I had the courage to not only write to RI Hospital Staff, but I could videotape my story. I was introduced to Denise Lowell, President of Just ASK - Aphasia Stroke Knowledge, a nonprofit organization in RI. Denise brought my video to RI Hospital staff. I will be forever grateful for both Lucia and Denise who helped me achieve this goal.
renewed apartment in VA (spending more time with my daughter and granddaughter)
As most of you know, after the stroke I had to leave my "dream job" as the Associate Director of Resident Services at Providence Housing Authority. I tried to return after my TDI ended, but couldn't ever work more than 12 hours per week. That's 12 hours per week! Not only did my language and speaking abilities hinder my work, severe neurofatigue took it's toll. After only working that short of time, I was unable to do almost anything else. With my husband's support and the help of a wonderful psychologist at my primary care facility, I was able to see that was no life and decided to "retire". Thankfully I was awarded SSDI so I could still feel that I was contributing to the household financially. I should write more about this on the blog since I learned so many important things through this experience. But for now, let's just say my self-esteem took a huge hit because I could no longer work which was a big part of my identity and contributed to my high self-esteem.
Getting back to this "achievement" - renewing the apartment in Richmond, VA and spending more time with my daughter and her family. This could only happen because the help my husband provides. My SSDI money does contribute of course and that makes me feel a bit better about myself. But my husband's financial contribution and mostly his emotional support make this a reality. When I'm here in VA, I have a sense of personal accomplishment when I can help my daughter and granddaughter. They, of course, don't NEED assistance. They would do fine on their own. But I feel good when I can provide any assistance - babysitting, meal preparation or food shopping, or just being there making wonderful memories with Kiera. As the years progress, I can do some things more physically, but see that some things are getting harder because of my language and communication challenges.
blogged fairly regularly and participated in the Ultimate Blog Challenge
I forgot the include how many blog posts I was able to upload last year. The number was 39. I was able to do that many mostly because I committed to the Ultimate Blog Challenge which is created and facilitated by a wonderful person and an accomplished blogger, Paul Taubman. The challenge is to post a blog on your site every day for a month. If you want to post on the daily page, you need to read and comment on the previous two posts, at least. In 2023, I was able to do 31 blog posts in the month of January to start the year off right. I did a blog in 8 other months for the grand total of 39. I was extremely busy in June, September and December and didn't post at all. So you see, participating in the challenge really helped me to achieve this. Thank you, Paul, and my fellow bloggers, especially Lily Leung , Kebba Buckley Button and Martha DeMeo who kept me going when I wanted to give up.
and finally.... one last one to talk about.
able to say confession and go to mass weekly in person
This is a very personal accomplishment for me. One that is extreme hard to talk about but may help another person struggling with what I struggled with. It's also a bit hard to put into words so I hope I can get enough word out so you will understand what I mean.
When I was having the stroke and going forward for some time, I could not speak or utter any sounds but I did know what was going on. Granted I was extremely tired at times and was dosing in and out, especially in the hospital, so I must have missed some things. But I Definitely knew what was happening. I can still remember wanting to say a few things that were very important to me. Mostly things about my physical comfort. I didn't have a lot of thoughts which makes perfect sense to me now knowing how aphasia works. I also remember that I felt safe - extremely safe and mostly well cared for by my higher spirit - GOD. Even if you are not religious you may understand that I felt that the universe had my back. I had no words.. no words for my God. Certainly no words of gratitude. No prayers for Him. But I know he was there for me and I had nothing to fear. Even though some place in my brain existed all those wonderful prayers I learned and practiced. They were still a part of me but couldn't be retrieved.
It was quite a bit later that I would ask my second wonderful SLP if we could practice prayers. It was so important to me then and even now. Thankfully, she knew the basic prayers that I wanted to recite. I remember when she first asked me what I could remember, all that came out was a sing songy sound like a humming or maybe I can beset describe it like the adults in Charlie Brown show who don’t talk. .like waaa, waaa-waaa, waaa waaa waaa waaa-waaa to the correct measure of the prayer. Then I had to write the words to the prayers and practice, practice and practice. If you have aphasia and apraxia, I think you understand.
Obviously there is a lot more to this story, and I will tell it another day. Fast forward through crying at every mass because I couldn't participate, felt disconnected and I felt bad for myself, Covid lockdowns and restrictions, online masses at home and then finally getting back to in-person church services….
I finally felt the courage to attend mass in person every week even without wearing a mask. I finally felt connected to my faith community both in my home church, Holy Spirit, in RI and in VA at St. Edward the Confessor. I still cannot say the prayers or the recitations at mass out loud. I cannot sing the songs in harmony and rhythm with the other parishioners. But I say all these things in my head and finally can “mouth” them along side everyone else. I found a way to fit in. I see now it doesn’t really matter. It’s not hurting my faith. In fact I think it makes me more aware of my spirituality. That’s progress in my mind. After 4 years of practice I can say the basic prayers out loud to myself. I can even say my favorite prayer, Anima Christi. I will continue to work on participating in mass.
This year, I finally was able to say the Our Father out loud quietly with the parishioners at St. Edward in VA. I think they say it slower down here than the people in RI which is good for me.
And I got the courage to go to confession at Lent just before Easter. I reflected on my sins using an app Laudate. I wrote down the mandatory prayer "Bless Me, Father for I have sinned. It has been _____ years/months since my last confession." (The blank part is between me and my God and only the priest heard it.) I wrote down what I wanted to say about my sins. Taking this note with me to the confessional at the National Shrine of our Lady at LaSallete, I started my confession with "Father, I had a stroke and have problems with speaking. I would like to read what I wrote. Please tell me if you don't understand me." Of course this priest was absolutely wonderful. Patient and kind. Just what I needed. I'm tearing up even thinking about this wonderful experience.
So, the upshot of this story. I am so grateful for my experiences that prepared me for participating in mass and actually having the courage to say a confession. I could never have done these by myself. And it was a real achievement for me, a person with aphasia (language disorder) and apraxia of speech (motor speech disorder).
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"Do the best you can until you know better. Then when you know better, do better."
~Maya Angelou
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Now you might be asking yourself, "Why is the title of this post, LEARNING TO ASK FOR HELP?" I know I would be if I were you. Even though I told you above that some people helped me with the achievements / accomplishments I made in 2023, I still struggle to accept help and definitely struggle to ASK for help.
Learning to ask for help doesn't come easily for me. In fact when I first had the stroke, I was very irritating to my family, especially my daughter, because I wanted desperately to be independent when I possibly could not and I had a non helpful attitude. I remember the frustration my family felt when I refused the help of the home health aide who was supposed to bathe me after three mornings.
Looking back at my life before the stroke I can honestly say, asking for help was never easy for me. I think it made me think I wasn't good enough, or strong enough, or smart enough.
I was a good collaborator though. I really enjoyed working with colleagues to write grant proposals. I also loved to create programs and implement them with my teams. I was good at making connections, both with ideas and people. Maybe that is because I had some control. These skills helped me to be successful in life - in every job I had and especially the last one.
Back in the day, I was independent even though I collaborated and worked closely with others.
Having the stroke with the resulting physical challenges and especially now having the communication challenges, I lost some of my independence and that has affected me in more ways than one.
Lately, I have been searching to find my "gifts again. I truly believe that we all are unique individuals with strengths and gifts. Using these gifts is important to me. I could always find them in others, especially when I was a teacher. I always taught about using our strengths to overcome challenges.
I think perhaps it is because I still want to be a contributor again- a collaborator and a person who helps make connections. This is made more difficult with my language and speech disorders.
I'm slowly realizing that asking for help or accepting a helping hand doesn't make me weak, or not good enough, or not smart enough. Deep down I knew it was never true.
When you can't speak like you used to, people can sometimes look at you differently. There is a misconception that a language disorder (like aphasia) makes a person less intelligent. I know that some people in my life think/thought so. It's hard not to. I even thought I might be less intelligent than I used to be. I process language at a slower pace. I have to pause to remember how to start to spell a word, that is if I can actually spell it now. I can do math, thankfully, but if I want to share the solution or even say a number out loud, many times I can't. I have an extremely hard time talking on the phone and get frustrated when problems occur. I many times have to ask a person to pronounce a simple word so I can repeat it. A word like "squirrel" is my nemesis. And the list goes on and on.
Now remember how irritating I was to my family when I wanted to bathe myself shortly after coming home from the hospital....My desire to be as independent as I could be even then.....
I still have many instances where I try to do things on my own and struggle unnecessarily.
Why not learn from these experiences and do better ? as Maya Angelou points out.
Even though it is still hard for me to accept help and even ask for it when I must, I am slowly learning that in order to do want it want, to live my very best life despite living with my disabilities, I have to.
Reflecting back to when I struggled with my communication and how asking for help would have made my life easier, I find many examples of where I can do better.
Just this week, I know now that I should have asked for help. I was watching my granddaughter for the morning. It was the Martin Luther King Jr. Holiday and her daycare was closed. We had a wonderful morning - playing the piano, drawing, and singing songs. Everything was smooth. I didn't have much communication issues, mostly because I didn't read to her or have to tell her no.
We went back to her house and had a delightful lunch - watching the flurry snow through the window. Then it was time to get ready for her nap. I don't remember what she was saying, but she got really silly and started to scream. It was in fact a happy, laughing scream. I put her down and she continued to be silly, running back and forth from the door to the kitchen. I tried to talk to her, but couldn't get the right words to let her know that I was serious and that I needed her to stop and calm down for nap. Her parents were upstairs working. It wasn't until my daughter came down and asked why she was screaming that Kiera finally got a bit calm. When I'm in a similar situation, I hope to remember this time and ask for help. It could have avoided the breakdown of communication and avoided my feeling embarrassed.
Until next time......
And if you'd like to hear me talk about this topic, please listen to my podcast, Aphasia Moments, on YouTube. http://www.youtube.com/watch?v=8mKZN1wkEUQ&t=3s
