This has been a really hard blog to write. I’ve been thinking about it for some time and writing it on and off for the past month or so. It may not be as detailed or as clear as I want it to be. That is the way my aphasia is - I have all the lovely words inside of me and when I would like them to come out clearly and eloquently, they just don’t.
I feel as if we live in two different worlds at the same time now. One in which Covid is still a threat to us and one in which covid is over or at least not one to be afraid of. And at the same time, I'm also living in two other worlds. One in which I am focused on the challenges of aphasia and apraxia, which I will call the "Disorder World. In this world, I am still working on my communication challenges and I try to live well with aphasia and apraxia. I make mistakes in communication and sometimes feel less than. I also have positive interactions and things that I'm proud of here. And another world where the challenges don't get acknowledged, which I will call the “normal world”. I drew this picture to illustrate what I feel in these two worlds I inhibit daily.
I'm living in this dichotomy of Covid worlds with every body else. Those who still wear a mask everywhere or almost and with those who never think about masking anymore. I tend to wear my mask more than the rest of my family. The only place I still feel safe without a mask is in church. We have a small number of parishioners and a beautiful large church. Everywhere else I think about getting covid.
(I wrote about how wearing a mask helped me avoid the challenges of talking to others in public. Here’s the link if you would like to read this. https://cheryltondreau.wixsite.com/blog/post/masks-off-am-i-ready Written on May 21, 2021)
But I also feel as if I live in the 2 other worlds. One that’s “ normal” and one that is aphasia / Apraxia focused "Disorder". After the stroke and at the beginning of my aphasia and apraxia journey, I had people helping me on my journey. My immediate family, medical professionals (primary doctor, cardiologist, vascular neurologist, OT, speech therapists, physiatrist, mental health counselors) all playing a part in my recovery. Now I sometimes feel alone on my recovery journey. Of course I am not; I still have these people in my life and I also have others now - other people with aphasia, my stroke pen pal, and the people in my BU aphasia group.
I have aphasia and apraxia in both of these worlds. I have come to accept the fact
that they will be "with" me for the rest of my life in some capacity. In my Disorder world they are prominent and noisy. In my Normal world they are silent and are only affect me.
Here is a small example: Since the beginning of my aphasia/apraxia journey, I attended Sunday mass. This was always a part of my life and after the stroke I desperately wanted the solace that it brought to me before. However, I cried every time I went. Even now I can remember how I felt not being able to say the prayers or sing the hymns. Going there just made it more real to me. I was extremely grateful to be alive and I thanked God for that. I knew in my heart I was going to get better and be able to communicate someday. But in the beginning when praying and listening to the beautiful hymns, these positive thoughts weren't there; what was there were the pessimistic thoughts. The more "woe is me" thoughts. I can't...... talk, pray, sing (or take communion because of swallowing issues). Over time, I was able to let these negative thoughts enter my mind and then I let them go. I continued to attend mass and came up with some accommodations for myself. As others are praying, I do the best job I can to "lip sync". When they are singing hymns or responses, I sing along in my head and really enjoy the music. I "fully participate" in the way that I can and nobody really notices. This is one example of why "spirituality" is listed in the Normal World. The disorder is silent to the rest of the world, but is there for me.
Here is where this post gets complicated for me. I would love to share all the thoughts that I had when creating this visual of my "ying and yang" world, but with aphasia it seems impossible. So, if you'll bare with me, I'll just share some phrases about the things I encounter in my worlds.
Normal World - basically everything I can do without aphasia and apraxia getting in the way, or being too hard
*acceptance *spending time with family *spirituality *health
*limit / avoiding spending time with friends and family *not speaking / a lot of listening
Disorder World - this is the time I spend thinking about what it like to have aphasia and apraxia, advocacy, projects, research studies (I would love to tell you more about these and I will in future posts); interacting with friends, healthcare and strangers
*this blog *starting a FB group *tweets *aphasia groups *book club
*participant in aphasia research studies *acceptance *positivity *helping others
*mistakes *self talk *reading, writing, understanding *word finding
*misunderstandings *struggle *mental health
I have said this before in the blogs.... I know I've come a long way and I'm so grateful for the people who've helped me along the way. I realize now that it's ok that I feel that I'm doing the aphasia / apraxia on my own without my family. They were there for the hardest part. I know they are still supportive of everything I do and I know they are proud of my continued progress which includes the "work" I do now. It is MY aphasia / apraxia journey and I have to be the one who makes the goals and does the work.
I see some fellow aphasia thrivers who are working with their spouses or other family members on projects or books. I can be honest: I was a little envious. I still have the dream of writing a book about what I've learned along the way and it would be a lot easier if I had this support. But, that is not their dream so it's not their journey and that is really ok with me.
For now, I'll continue writing about my journey here. I thank you very much for reading this today. I hope it gives you some insights about the struggles of aphasia and apraxia. But most of all, I hope it gives you HOPE.
