I am approaching my four year anniversary post craniotomy clipping in temporal lobe.
I have vague memories of the first two years. I see paintings I’ve painted and don’t recall doing them, even though I know I did. Books I read that I don’t remember. I stopped painting as it was extremely hard for me to do. Focus was almost impossible.
I only recently began seizure meds as apparently I have had simple seizures ever since, but didn’t realize it. The anxieties I experienced are relieved now. The intense emotions -not quite so intense.
However, as I begin a painting now? It feels as though I am re- learning how.
As well as a few other things I had worked on for years to finally achieve advanced levels.
Anyone else experience anything like this?
I had an adverse reaction to my surgery and was comatose- almost died after.
I recall none of it. My memory of seeing my loved ones prior to surgery is completely erased.
Clarity exists now, which is wonderful, but as I said the first two years plus are very sketchy and it’s frightening.
As I appear “normal” (I guess) I find it difficult to express what I am experiencing to those close to me. They just don’t “get” why I am not back in my studio working 24/7.
I want to be! It is difficult however.
Thanks,
Laura
Laura, I used to carve, see a piece of wood, a small tree limb, and could “see” what I wanted to carve, hidden, waiting to come out. I used to like to build things with passion to hand tools. I know I still love to work with wood. Like you, it’s starting over again. What I can no longer do is see things worked out in my brain. I don’t see the steps anymore…with anything. Muscle memory has to be relearned from the beginning stages with me.
How does one explain that loss of sensation to those who were or are not aware of the intracies of their brain and cognition?
The books I don’t remember, I get to enjoy again, and our home is filled with many books. I don’t see that as a negative. Now if it’s a lousy book, I stop reading and will begin to start donating them. I really don’t need to be surrounded with the written word anymore.
The process of woodcarving is relearning a passion of completion and relaxation. It will come. After two years post rupture, I am aware of thoughts in my head. Without awareness of processing, things just came out, and now I can pause, sometimes ;). In order to communicate efficiently, I still have to have little stimuli around me. And like you, others don’t always understand or see those breaches in me as non-important. Sometimes, I try really hard to try to explain, but with expressive aphasia, it is difficult. Sometimes I feel that the plethora of words I once held at the tip of my tongue was a dream. Then I write or type and those words struggle to come to the surface.
I hope my rambling conveys that you are not alone.
Thank you, yes it is wonderful to be understood. Pressure is on when they point to competitions published with your work on the cover. I balk.
Regarding writing for you…I have come across an amazing tool you too might appreciate.
An old yet perfectly intact Signature typewriter.
I am not liking writing here- but a necessary evil.
The old typewriter allows for time and visual result in keeping with what I need.
Might sound crazy but as you obviously write well and express yourself well and it might be just the thing.
Correcting myself on a device or computer I lose my train of thought. There my pause allows for clarity in commitment.
I’ve more to say but wanted to say thanks for responding and mention that.
L
Laura, thanks for the suggestion! I remember college days and earning a dollar a page typing papers for other students. My typewriter was complicated, a big old IBM Executive that one had to know font size to get spacing correct. But it typed beautifully. Much better than the old manual typewriter that didn’t like to print a few keys, unless struck with hammer force! I don’t have difficulty typing on my iPad. But I do have difficulty keeping thoughts in order. I always have to go back through and see that what I typed has a flow, the more tired or excited I am, the less I catch the errors. The iPad also has the spell check, I wish it would give me some more words. I do try to do the word a day from Webster-Mirriam and try to use the word in sentences throughout the day. I think it’s helped. I also dill evenly talk an hour at 15 minute blocks and try to see things in my mind. I will look at a tree, a flower, just anything that strikes my fancy; close my eyes, and try to recall that thing. I used to see faces in almost everything, especially trees. These are not within my grasp at this time, but it will come back.
Okay so my brain is thinking - Have you thought of taking up sculpture? It’s three dimentional. My thinking is if you prefer the typewriter, it may be a tactile form of expression for you. I realize you still enjoy painting. Maybe it will help to get through the emotional block that you are trying to regain. Not sure if emotional is the correct word. I’ll ask others more intelligent to me on how to grasp that stuff which drives us to create. If they know, I’ll share it with you! I see it as I once had a rope as thick as my leg that creative things gushed through, and now I’m looking for a thread in a jumble of strings. I know it’s there, I just don’t know where to start pulling. Does that make sense?
Yes, it does make sense.
Sadly I am struggling to enjoy painting -because of the outside expectations.
Alone I try to re establish what I used to do.
I was unclear there.
I used to teach sculpture, introduced my husband to it. I had my own pottery shop. I developed an allergy, prob from over exposure. Anyway I passed it on to him.
Thank you for the suggestion though. I get why you thought of it.
The typewriter appeals as ‘screens’ seem to mess with my occipital lobe. I have an AVM with assoc Cavernoma there that bled.
I have gone to therapy but find it tough to talk to a person who is so far from what we have gone through.
Thank you for hearing me.
Thanks Edwardo. I ran into a woman last year who had her surgery ten years ago and she smiled and shook her head and said “ah you are still in the middle of it”. I didn’t know what she meant until now, when I look back. Your reply is encouraging. I need to re read it. Again and again.
Edwardo said:
Hi Laura , I am touched and comforted by reading this . Its a long slow slow slow trudge back to where you can see and understand light again … awareness … People who are unaffected have no way to understand because they only see whats outside . You are fortunate not to remember the bad parts of what passed , Its a do -over with a new path to walk . I see similar … in my wife and its crushing to look at what is lost but uplifting to see her emerging from the chaos in a new place , similar to the old her but a new and different person . Awesome that you can paint and find enjoyment in it , make your own pace and dont frett about others expectations - You are doing fine !
Good thoughts !
E.
I've been meaning to reply. When I first read this I burst into tears. Which was sad, then funny, then kind of an 'oh oh I'm going nuts' moment. I then had to try to explain to a very confused husband why I was sitting there bawling big fat tears. My reply..."I don't know why I'm crying". Except that it hit a nerve...I'm still not sure who I am. My brain won't think the way it did and in some aspects thinks in ways I wish it didn't. There are things I remember and things that pop in and out automatically. Those outside my head look at me and think I'm over bearing but inside I'm a lost puppy. Sometimes it's frustrating to have to start over with personal growth (kind of like a demented Chutes and Ladders game) and other times I think 'holy hell I can't believe I'm still here'. I run into things I've done after surgery (two years ago) and don't remember doing them. My brain is back to thinking in pictures but they stay in there. But it's all good. I'm still here. ;)