Happy One Year Anniversary to the blog!
Yes, one year ago today, I started on this blogging journey with my first ever post.
And one year since the start, I have been nominated for not one but TWO awards!
Here’s to another year of writing and sharing my journey with this condition!….
Jonathan
Hi Rhiann,
My name is Jonathan and I had a brain stem stroke when I was 8, more specifically a pons stroke which entered the cerebellum, which is even rarer and even rarer to survive (2+cm sphere of neurological death) I also lacked oxygen at birth which I am pretty certain caused a hidden level of cerebral palsy and was probably the reason for the stroke in the first place as some research indicates people with cerebral palsy seem to be damaged in the brain stem as well.
It is a hard thing living with this. I’ve been going to psychologists for years but even they seem to be trying to say that I am fine. What I’ve found is that autism spectrum disorders, personality disorders, sleep dissorder, OCD, PTSD, anorexia bulimia and weirdly williams syndrome (as the pons has been effected), are damaged in the brain stem. I still think alot of people are just grasping in the dark still. This area of the brain is so INCREDIBLY sensitive they find it really hard to study. The pons is where seratonin and another drug, which has to do with muscles, seem to be produced, so effects on personality is likely with damage to this region.
And then there’s the physical effects. Alot of it with me has to do with my body not being able to hold posture or balance. I can look extremely normal other than a limp but I get really tired with moving, standing in one place too is just painful as my muscles are trying to compensate for my bad balance and posture. Some musles are almost always micro spasming, mostly my legs, and if I try to contain it I experience so much pain. My legs can get so stresses that they start spasming just due to physical and mental overload. With cerebral palsy, essentially brain muscle issues, the body is doing up to 5 times more work than a neuro typicals and it’s all unseen.
The strangest thing is that my bones and muscles on my right side are about 40% smaller than my left (interestingly no one really notices). My bones didn’t grow at the same rate either but no one notices. This seems to be Pituitary issues but theres no damage that is observable there. It makes me wonder how many people deal with brain injuries, and differences, and know there is something wrong with them, but the medical industry can’t find the cause. It seems like psychology mostly is there to passify us and make us think we are normal.
Having to live with this for 39 years has left me with a fair degree of insecurity. It’s like I am between worlds. Neuro typicals don’t seem to have alot of understanding for the small stuff I have to deal with on a daily basis, but then I don’t feel I fit in with the group that is the social stereotype of the disabled person. It’s like I am quite smart in some ways but I am just slow. Emotional stuff kind of over loads my brain and my consciousness really takes a hit. Even my physical problems exaserbate with emotions, walking can get quite difficult with being overwhelmed and overloaded. Basically I think the brain stem is crashing like a cpu in a computer. Recently I have found people that are dealling with certain kinds of brain issues are easier to connect with. It’s just so much more peaceful most of the time. It’s still hard to be open with people when so much of my life has been this struggle to appear normal in social situations. I’m still quite shy. Knowing what, and when, and what not, to share withn people is still tricky for me.
I just have to keep reminding myself I’m doing the best I can, sometimes I forget that, sometimes I forget that I have a really serious brain injury and judge myself in a neurotypical way. There is an interesting movement that is slowly starting called Neurodiversity which is trying to gain much more acceptance of people dealling with brain issues and create a better place for them in society.
It’s nice to find your blog and I will enjoy reading more than I have already. Plus happy belated birthday.
Jonathan
rhiannlouise
Hello Jonathan
Thank you for the incredible reply and for sharing your story. I hope this reply finds you well (or as my favourite saying goes ‘as well as can be expected’).
I’m sorry to hear of all the medical problems that you have experienced and more so of the treatment that you have seemed to encounter with the medical community. Like you, I have had a great number of doctors telling me that the symptoms that I was experiencing was ‘all in my head’ and as all this started when I was very young, it was hard to explain exactly what I felt or was going through.
Although despite everything you have gone through, you have obviously overcome a lot in your life so you should be really proud and you seem like an amazing person.
If you would like you can always keep in contact with me through the blog’s email address: brainlesionandme@gmail.com and you can contact me anytime if you ever need to talk.
Thank you again for your reply and I hope you enjoy the rest of the blog!
Rhiann x
Jonathan
Hi Rhiann,
My name is Jonathan and I had a brain stem stroke when I was 8, more specifically a pons stroke which entered the cerebellum, which is even rarer and even rarer to survive (2+cm sphere of neurological death) I also lacked oxygen at birth which I am pretty certain caused a hidden level of cerebral palsy and was probably the reason for the stroke in the first place as some research indicates people with cerebral palsy seem to be damaged in the brain stem as well.
It is a hard thing living with this. I’ve been going to psychologists for years but even they seem to be trying to say that I am fine. What I’ve found is that autism spectrum disorders, personality disorders, sleep dissorder, OCD, PTSD, anorexia bulimia and weirdly williams syndrome (as the pons has been effected), are damaged in the brain stem. I still think alot of people are just grasping in the dark still. This area of the brain is so INCREDIBLY sensitive they find it really hard to study. The pons is where seratonin and another drug, which has to do with muscles, seem to be produced, so effects on personality is likely with damage to this region.
And then there’s the physical effects. Alot of it with me has to do with my body not being able to hold posture or balance. I can look extremely normal other than a limp but I get really tired with moving, standing in one place too is just painful as my muscles are trying to compensate for my bad balance and posture. Some musles are almost always micro spasming, mostly my legs, and if I try to contain it I experience so much pain. My legs can get so stresses that they start spasming just due to physical and mental overload. With cerebral palsy, essentially brain muscle issues, the body is doing up to 5 times more work than a neuro typicals and it’s all unseen.
The strangest thing is that my bones and muscles on my right side are about 40% smaller than my left (interestingly no one really notices). My bones didn’t grow at the same rate either but no one notices. This seems to be Pituitary issues but theres no damage that is observable there. It makes me wonder how many people deal with brain injuries, and differences, and know there is something wrong with them, but the medical industry can’t find the cause. It seems like psychology mostly is there to passify us and make us think we are normal.
Having to live with this for 39 years has left me with a fair degree of insecurity. It’s like I am between worlds. Neuro typicals don’t seem to have alot of understanding for the small stuff I have to deal with on a daily basis, but then I don’t feel I fit in with the group that is the social stereotype of the disabled person. It’s like I am quite smart in some ways but I am just slow. Emotional stuff kind of over loads my brain and my consciousness really takes a hit. Even my physical problems exaserbate with emotions, walking can get quite difficult with being overwhelmed and overloaded. Basically I think the brain stem is crashing like a cpu in a computer. Recently I have found people that are dealling with certain kinds of brain issues are easier to connect with. It’s just so much more peaceful most of the time. It’s still hard to be open with people when so much of my life has been this struggle to appear normal in social situations. I’m still quite shy. Knowing what, and when, and what not, to share withn people is still tricky for me.
I just have to keep reminding myself I’m doing the best I can, sometimes I forget that, sometimes I forget that I have a really serious brain injury and judge myself in a neurotypical way. There is an interesting movement that is slowly starting called Neurodiversity which is trying to gain much more acceptance of people dealling with brain issues and create a better place for them in society.
It’s nice to find your blog and I will enjoy reading more than I have already. Plus happy belated birthday.
Jonathan
rhiannlouise
Hello Jonathan
Thank you for the incredible reply and for sharing your story. I hope this reply finds you well (or as my favourite saying goes ‘as well as can be expected’).
I’m sorry to hear of all the medical problems that you have experienced and more so of the treatment that you have seemed to encounter with the medical community. Like you, I have had a great number of doctors telling me that the symptoms that I was experiencing was ‘all in my head’ and as all this started when I was very young, it was hard to explain exactly what I felt or was going through.
Although despite everything you have gone through, you have obviously overcome a lot in your life so you should be really proud and you seem like an amazing person.
If you would like you can always keep in contact with me through the blog’s email address: brainlesionandme@gmail.com and you can contact me anytime if you ever need to talk.
Thank you again for your reply and I hope you enjoy the rest of the blog!
Rhiann x
RedCandy
Happy Birthday to your blog! 🙂
rhiannlouise
Thank you 🙂
RedCandy
Happy Birthday to your blog! 🙂
rhiannlouise
Thank you 🙂