Happy Anniversary to Me! Happy Anniversary to Me! Today is the 3rd anniversary of the day I had a stroke. So much has happened in these three short years. So much has changed in my life. I have learned a lot. I have rediscovered many strategies that had helped me before the stroke - things that I used to teach my students. One of these strategies is remembering my strengths and to use them when faced with challenges. I have struggled to find my place with my new reality - perhaps one would say "new life". After the stroke, I had to accept that I am a person who has communication challenges. I don't sound the way I did before. I don't write the way I did before. I don't enjoy reading like I did before. I also have limited energy.
But I am still me! I am still the hard working person whom I was before. I am still the same stubborn person I was before. I still have my quirky sense of humor. I am still the person whose family means the most to me. And I am still a person who wants to help others.
My self esteem took a beating. My mood and mental health needed gentle assistance. I have some pain and numbness. I still have strange sensations in my right hand and face. But, at every step, I knew somehow that I was going to be alright. I think that having a positive attitude has a lot to do with this.
Lately I find myself at a crossroads yet again. I don't think that is unusual in life. Somehow, during these 3 years, I have felt this way many times. For the past month or so, with aphasia being in the news and the looming anniversary of the stroke, I’ve been thinking about so many things. That is one reason I haven’t written this blog in over a month. I've been trying to find the right words to express how I'm feeling. I've also been trying to make some decisions about my life and my ongoing recovery. I have been looking back to these past 3 years. (I made a timeline to remind myself of the important milestones and events- see below) I did this first to realize how far I've come but also to give me some insight as to where I should be heading and what I should focus on right now.
During the first year of my stroke journey, I was fully focused on my recovery. I was desperate to get my voice back. I was also desperate to get back to work. When I had the stroke I was already on TDI (Temporary Disability Insurance) for the rotor cuff surgery. I had the surgery on Friday. Before I woke up on Sunday, I had a stroke. At the beginning I fought so hard to get enough communication skills and cognition to be able to go to work. When the TDI ran out, I didn't want to lose my job, so I went back part time. I was not remotely ready for this, but I went back anyway. During the 5 months that I worked part time (10 hours a week) it became clear to others that I was not going to be successful in my attempt to get back to work full time. But, of course, it took me much longer to admit this and I resisted until it became extremely clear that working did not help my recovery; in fact, it probably hurt somewhat. I had extreme neurofatigue. I could barely drive to work and function mimimally. And I had developed a pain behind my eyes and numbness in the back of my head. Finally I went to a new neurologist who put me out of work totally. That was a painful time and made my depression, which started shortly after the stroke, to become worse. By the end of the first year, I had lost my job, lost by focus, and needed mental health therapy. It was also the time that the Covid pandemic started and we all were "locked down". Fortunately it was also the time I started to working with my third speech therapist and was referred to my physiatrist.
The second year of my aphasia/apraxia journey, I would call this my rebuilding and rediscovering year. My focus was not only on stroke recovery, but also how to better myself as a whole person. Of course I continued to want to speak better, but in this year, I also wanted to work on myself in other ways. I participated in workshops offered by Hay House and even paid for a membership in their writers' community. I turned inward to find my spirituality again. Although we couldn't attend services like we used to because of covid, masses were held online and I participated regularly. For communication, I continued working with Lucia not only on speech production but on fluency and writing. We started a project to tell the hospital about my visit. Even though it never was sent to the hospital, it was cathartic to get it off my chest. I also enrolled in the BU Aphasia Center and started to participate in groups with others who have aphasia.
I originally started my blog in year 2 to document my journey as a vehicle that was easier for me than writing the book that I felt I was called to write ever since the stroke.
I started mental health therapy with a fantastic psychologist who understood my depression and anxiety due to the stroke and the changes that occurred in my life afterward. She used CBT as a general rule and adapted her practice to using Acceptance and Commitment Therapy which worked so much better for me.
In my personal life, I was blessed with my first grandchild. Even with covid my husband and I were able to frequently visit my daughter and her family in VA. This has been a Godsend. At the beginning of 2020, I set the word "JOY" as my word of the year. With having the ability to spend time with family and everything I relearned about self-esteem, I truly had found joy again.
This third year, I would consider the year of realigning and redefining. I would say that I have finally found peace and accept what has happened in my life since the stroke. I feel that I am doing what I can to be happy and enjoy life. I have accepted my situation, my voice, my exhaustion, any limitations. I am still frustrated that I don't sound like my old self, but I have learned how to judge myself less.
It is in this past year, that I really focus on writing my blog and tweeting about my stroke and communication journey. I am able to pace my cognitive activities much better and avoid some cognitive overload. With my mental health counselor, I am finally able to express my core values and finally chose to do activities that match these values and not feel guilty about not doing things that really don't matter.
I stop formal speech therapy in August when I can't set definable goals. This was extremely hard for me. I wanted it to continue indefinitely. I know she is there if/when I need her and that is a relief.
I've always been good at data collection and analysis. I find it helpful to me now that I'm at a crossroads. Do I focus my time on stroke awareness and aphasia/apraxia awareness or do I do something different? I have been thinking about this more since the news of Bruce Willis' diagnosis of aphasia. Am I really a good, vocal advocate? I saw many of my aphasia friends being interviewed or asked for their opinions. I was quietly tweeting or doing what I could to tell people.
Should I now concentrate more on 1-1 relationships with people who've had a stroke and now have communication issues because of disorders such as aphasia or apraxia? Looking at the data.. I've been on Twitter for over a year. And although I now have 240 followers, most of them are SLPs who already know about aphasia and apraxia and are themselves advocates. I have written blog posts pretty consistently for more than a year and I have very few followers. When I post the blogs on Twitter, I don't get any likes and few people read the posts. I don't think my efforts have been successful in getting people aware of the struggles after stroke by participating in Twitter. I am now ready to spend less time on this.
I will continue to use my blog. It keeps me working on my story so I'll continue to do this It also helps me continue to progress as a writer.
I have also been a really good advocate for individual people and programs. First as a literacy specialist and ending as the Associate Director of Resident Service. I think that is in my DNA. I'll continue to advocate but in my own quiet way.
Who knows what this next year will bring. I'm going to let the universe decide what projects I will be work on and how my story can be told so others can be helped. I'm still going to look for signs that what I'm doing is useful. And I will enjoy every day that God grants me. As I told you in my first blog, I believe God has great plans for me still. That is why I survived the stroke.
Until next time, friends!
Timeline:
1st year of stroke journey; aphasia/apraxia journey begins - May 2019 to April 2020
may 10 surgery
may 12 stroke, no voice
may 13 came home, no voice, no information no instructions
vna - nurse, OT, PT speech nurses aide for personal care (1mo)
outpatient OT and speech (2)
end of official TDI august entended to Sept
went back to work part time to keep job; 10 hours per week; neurofatigue
Feb 2020 dr. Burton, disability, end of job end of emploment, end of my passion and focus, end of life work, end of friendships, end of helping people
febuary end of outpatient Speech start of regular speech therapy with Lucia
mental health therapy…… short term at primary care office, then a host of others that didn’t workmarch April 2020 start of the pandemic……
2nd Year Aphasia/Apraxia journey -May 2020 to April 2021 - mental health, focus on JOY 2021
Speech therapy- refining, getting a more normal voice both orally and in writing; BU aphasia center groups
mental health therapy- Acceptance and Commitment therapy
started the blog, Twitter and joined FB groups Stroke and aphasia
Hay House writers community
Hay a house workshops
3rd Year - redefining and rediscovering - may 2021 to April 2022 ( being intentional, ways to live my best life with aphasia and apraxia)
August finished with formal speech therapy and mental health therapy
continued to focus aphasia awarenenss, , blogging regularly
pacing cognitive activities to reduce neurofatigue
projects with BU, research,