"It is not willing; It is not unwilling" - Recovering Syntax: A Poet's Struggle with Aphasia
This is my sort of snippet based on a long video I watched today that was related to poet Marie Ponsot struggling with aphasia, caused by a stroke. I was very interested in this, because I am also a poet with aphasia, caused by a stroke. The video is called Recovering Syntax: A Poet's Struggle with Aphasia.
I will probably try to write a longer article about this later, but that might take me a while, so I wanted to get some thoughts out, in order to remember those thoughts and help me write the article later. Otherwise, I will probably forget all the details within a few days.
So here are my snippets/thoughts:
-Poets and other writers can feel especially devastated if they are suffering from aphasia, because it can have a large amount of affects on their writing, reading, remembering, and communicating in ways that used to be very powerfully important to them. Even if you are recovering pretty well from your aphasia, you might have to concentrate so much harder and more deliberately than you used to when communicating; instead of speaking with automatic spontaneity, you have to think about everything you're saying (I can really relate to this part; for quite some time, I frequently got headaches because I had to concentrate so hard when speaking and especially when listening and trying to understand and remember). I almost started crying when one audience member came up to make comments near the end of the video; his speaking was very slow - he said he had also suffered from a stroke and had aphasia – he said, "I'm a humor writer and it's not coming back so far". Poet Marie Ponsot's poetry was also not yet coming back to how it used to be, unfortunately.
-I feel very lucky and amazed and happy that I have a really small version of aphasia compared to what some aphasia sufferers experience! I feel lucky and amazed and happy that I can still write and read poetry (and still feel really passionately about that), even though that is slower than it used to be. There are pretty broad categories of aphasia. As I've said before, it is tough for me to remember an assortment of easy little words – BUT I still know what most of those words MEAN – and that is not the case for some people with aphasia, who just blurt out seemingly random word assortments without even knowing their actual meaning. For some people with aphasia, their brains cannot understand rhyming; would not know that words like 'cat/hat' rhymed – and that seems very obvious to me, so I am lucky in that regard too. Some people have such a severe kind of aphasia that they only say ONE word, over & over again! Sometimes their repetition can seem deadly. Shit shit shit.
-Some people who have a stroke and then suffer from aphasia are not sure what to do or how best to recover. Recovery studies are hard to get the government to help pay for; in large part because they take so long, because everyone is different (in terms of their side effects and what best helps them recover). One person described her stroke as feeling like 'a ship wreck' of the brain. (I remember some months back, when I had a follow up appointment with one of the doctors who had performed my surgery, he said he was impressed with how well I seemed to be recovering, because my stroke and aneurysms had been almost like getting shot in the head).
-Many people with aphasia certainly want to try their best to recover, but are unsure how best to do so. I can relate to that; the therapist I was seeing for a while just gave me a bunch of paperwork to work on at home– and I sure worked on it – and some of it was almost easy whereas some of it was almost impossible for me – and again, maybe every stroke/aphasia sufferer is very different and so some therapists don't know what best to do – but I felt like mine had almost nothing to do with me personally. I've certainly felt as if I'd like to try another/different therapist, but I can't really afford that – so I guess I'm just trying my best to be my own therapist.
-I'm certainly no medical expert, but I have had a stroke and aphasia and speaking from my own experience, I can suggest that those hoping/trying their best to recover should focus on what they feel passionate about and work hard and do not give up! Also (unfortunately) do not expect everyone in your life to understand what you're going through (or even want to try to understand what you're going through), because some people can't or won't or don't want to deal with it. I ended up losing my husband after my stroke/aphasia (and I've read that it is not uncommon for people who suffer such a serious health/brain issue to lose a partner, who cannot handle being supportive during that time) and obviously, that was very upsetting and sad, but I am glad I found out about his lack of support and caring before I became old. Stick with the people who still like, love, and care about you. Keep reading and writing and talking, even if you sometimes feel upset or embarrassed when some easy little word won't come out right. Keep trying and do not feel ashamed or devastated when you still might have room for lots of improvement. Who knows? Everyone's brain is different, right?
-I can honestly admit one thing that has bothered and upset me several times is that I have heard some medical experts (including one of the men in this video) state that your quickest/best recovery will take place within a few months up to one year – after that, there probably won't be much more recovery and if there is, it will just be itty bitty little snippets. Hello, I don't feel like hearing that! That does not help me feel very positive! It has now been more than one year for me, since I suffered from my stroke and its resultant aphasia. Have I made a lot of significant progress and recovery? Yes. But am I fully recovered, with my brain feeling as strong as it used to be? No way. And I do not really want to think that there might not be much more recovery left for me! I want to think there is! And I wish other people could tell me that there is too. I really don't want to hear medical personnel suggesting that there very well might NOT be after this point! That might make some people feel like, 'What's the point of trying? I give up'. I won't be giving up though. I will continue to try.
-At the end of the video, Marie Ponsot reads one of her older poems. She reads it quite well and enjoys doing so (although almost starts crying at the end; I imagine it is very hard and challenging for her, not knowing if she will ever be able to write that well again; however, I can also tell she is continuing to work on trying her best). I especially liked this snippet of her poem - "It is not willing; It is not unwilling".
*
Here is a link to the video I watched (it is almost two hours long) - Recovering Syntax: A Poet's Struggle with Aphasia:
http://www.youtube.com/watch?v=tGf_l3MwRBQ
I will probably try to write a longer article about this later, but that might take me a while, so I wanted to get some thoughts out, in order to remember those thoughts and help me write the article later. Otherwise, I will probably forget all the details within a few days.
So here are my snippets/thoughts:
-Poets and other writers can feel especially devastated if they are suffering from aphasia, because it can have a large amount of affects on their writing, reading, remembering, and communicating in ways that used to be very powerfully important to them. Even if you are recovering pretty well from your aphasia, you might have to concentrate so much harder and more deliberately than you used to when communicating; instead of speaking with automatic spontaneity, you have to think about everything you're saying (I can really relate to this part; for quite some time, I frequently got headaches because I had to concentrate so hard when speaking and especially when listening and trying to understand and remember). I almost started crying when one audience member came up to make comments near the end of the video; his speaking was very slow - he said he had also suffered from a stroke and had aphasia – he said, "I'm a humor writer and it's not coming back so far". Poet Marie Ponsot's poetry was also not yet coming back to how it used to be, unfortunately.
-I feel very lucky and amazed and happy that I have a really small version of aphasia compared to what some aphasia sufferers experience! I feel lucky and amazed and happy that I can still write and read poetry (and still feel really passionately about that), even though that is slower than it used to be. There are pretty broad categories of aphasia. As I've said before, it is tough for me to remember an assortment of easy little words – BUT I still know what most of those words MEAN – and that is not the case for some people with aphasia, who just blurt out seemingly random word assortments without even knowing their actual meaning. For some people with aphasia, their brains cannot understand rhyming; would not know that words like 'cat/hat' rhymed – and that seems very obvious to me, so I am lucky in that regard too. Some people have such a severe kind of aphasia that they only say ONE word, over & over again! Sometimes their repetition can seem deadly. Shit shit shit.
-Some people who have a stroke and then suffer from aphasia are not sure what to do or how best to recover. Recovery studies are hard to get the government to help pay for; in large part because they take so long, because everyone is different (in terms of their side effects and what best helps them recover). One person described her stroke as feeling like 'a ship wreck' of the brain. (I remember some months back, when I had a follow up appointment with one of the doctors who had performed my surgery, he said he was impressed with how well I seemed to be recovering, because my stroke and aneurysms had been almost like getting shot in the head).
-Many people with aphasia certainly want to try their best to recover, but are unsure how best to do so. I can relate to that; the therapist I was seeing for a while just gave me a bunch of paperwork to work on at home– and I sure worked on it – and some of it was almost easy whereas some of it was almost impossible for me – and again, maybe every stroke/aphasia sufferer is very different and so some therapists don't know what best to do – but I felt like mine had almost nothing to do with me personally. I've certainly felt as if I'd like to try another/different therapist, but I can't really afford that – so I guess I'm just trying my best to be my own therapist.
-I'm certainly no medical expert, but I have had a stroke and aphasia and speaking from my own experience, I can suggest that those hoping/trying their best to recover should focus on what they feel passionate about and work hard and do not give up! Also (unfortunately) do not expect everyone in your life to understand what you're going through (or even want to try to understand what you're going through), because some people can't or won't or don't want to deal with it. I ended up losing my husband after my stroke/aphasia (and I've read that it is not uncommon for people who suffer such a serious health/brain issue to lose a partner, who cannot handle being supportive during that time) and obviously, that was very upsetting and sad, but I am glad I found out about his lack of support and caring before I became old. Stick with the people who still like, love, and care about you. Keep reading and writing and talking, even if you sometimes feel upset or embarrassed when some easy little word won't come out right. Keep trying and do not feel ashamed or devastated when you still might have room for lots of improvement. Who knows? Everyone's brain is different, right?
-I can honestly admit one thing that has bothered and upset me several times is that I have heard some medical experts (including one of the men in this video) state that your quickest/best recovery will take place within a few months up to one year – after that, there probably won't be much more recovery and if there is, it will just be itty bitty little snippets. Hello, I don't feel like hearing that! That does not help me feel very positive! It has now been more than one year for me, since I suffered from my stroke and its resultant aphasia. Have I made a lot of significant progress and recovery? Yes. But am I fully recovered, with my brain feeling as strong as it used to be? No way. And I do not really want to think that there might not be much more recovery left for me! I want to think there is! And I wish other people could tell me that there is too. I really don't want to hear medical personnel suggesting that there very well might NOT be after this point! That might make some people feel like, 'What's the point of trying? I give up'. I won't be giving up though. I will continue to try.
-At the end of the video, Marie Ponsot reads one of her older poems. She reads it quite well and enjoys doing so (although almost starts crying at the end; I imagine it is very hard and challenging for her, not knowing if she will ever be able to write that well again; however, I can also tell she is continuing to work on trying her best). I especially liked this snippet of her poem - "It is not willing; It is not unwilling".
*
Here is a link to the video I watched (it is almost two hours long) - Recovering Syntax: A Poet's Struggle with Aphasia:
http://www.youtube.com/watch?v=tGf_l3MwRBQ
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