Friday, December 04, 2009

To a truer, better beat...

She was fighting and drowning at the very same time. Silently screaming. Helplessly collapsing. Only to her, it felt like she was being engulfed, like an army of impulses were marching through her veins. Like a puppet, who couldn't control it's own strings. Senses merging into one; then dividing into a thousand new ones. Echoing through the vast emptiness of her crowded mind. A state of paradoxes. Nonsensical to you, the reader. But to her, simple reality. Music grew roots, latched itself round her frame, dragging her down. Tiredness stole her strength, forcing her to the ground. Standing still was an earthquake, making her limbs tremble rhythmically. Words would jam her mind, unable to escape her mouth, except for momentary eruptions like a volcano spewing fire. It made her feel drunk, like she was under a spell, though no drink or potion touched her lips. It was just a thunderstorm raging through her brain; leaving a trail of broken residue, a lingering fog, countless aches and pains. This is why, when the storms subsided and seemed a part of yesterday, no longer crossing the boundary of today, she wanted to rejoice. She wanted to take those same muscles and make them move with thanksgiving to a truer, better beat; to raise her voice, and let dancing flow through her feet. 


Anette Acker said...

Thank you for that, Becky! I've always wondered what it's like to have a seizure, because Ingrid can't tell me. The doctors have told me that she's probably not suffering, but from what you're saying that doesn't sound true. It doesn't sound anything like just losing consciousness. it sounds like you suffered quite a bit when you went through that.

And, yes, I want to know the truth. :) I wonder if the doctors just told me what they thought I wanted to hear.

Becky said...

Oh, i'm sorry Anette, maybe i shouldn't have posted that.... i think it's the closest i've come to describing my experience of seizures in the whole of these 5 years, and i wrote it cos i personally found it helpful to do so, but maybe it's not so helpful for others to read.... Anyway, seeing as you have now read it, i will do my best to accurately and honestly describe things... it may be a little long, but i feel i owe it to you to at least give you a more balanced picture of things....

Firstly, what i would say is that i think everyone's experiences of seizures are different... depending on the type of seizures they have and other factors, so what i went through is by no means a representation of what Ingrid goes through... her experience may be very different.

It's very hard for me describe this, but i will do my best. Although i did have full-body seizures, i was still partly aware of things... it was like a state of semi-consciousness, a bit like a dream, it felt kinda surreal..... i did fully lose consciousness for parts of them, but i definitely remembered parts of them too.. it's very strange to be aware of things happening to your body but to have no control over it.... i guess i kinda went in and out of consciousness. However, from what i've been told, some people do completely lose consciousness and remember nothing at all.... i guess they would still experience the after-effects, such as tiredness and muscle aches.... but they probably wouldn't experience some of the other wierd things that i felt. I often went into status, where my seizures didn't stop on their own and i'd have to be administered drugs to get them to stop... when that happened, it completely wiped my memory and i remembered nothing at all.... all i was aware of was feeling tired etc after.

I honestly wouldn't say that i "suffered" though... i feel that's quite a strong word.... after a seizure i would be very tired and could sleep a lot... and i would generally have a headache and my muscles often ached a lot.. but i guess it just felt a bit like having done a lot of exercise or something! My head would feel kinda foggy, and although it wasn't a "pleasant" experience, it wasn't too wasn't like real "suffering"... and because i was often so tired, i just slept it off, and it didn't bother me much.

I guess the worst parts were if i injured myself in the seizure... for example when i fell, or if i was fitting in a confined space, so bruised and banged my limbs/head... that would be physically painful, yes.... in the first year of having seizures i was nearly constantly covered in bruises, but in the later years my friends and family got pretty good at sensing when i was going to have one, and therefore they were pretty good at protecting me from such injuries.... Anyway, it would still be accurate to say that the seizure itself didn't cause me "pain"... it was only how the seizure made my body bang into other things.... i presume you would know if Ingrid's seizures effected her in that way.... and if they don't, then i would say it's quite likely that she doesn't actually feel "pain" from the seizure itself.

Also, some of what i described is simply how the seizures made me feel just before they progressed into a whole-body seizure. For example, my seizures were in the front part of my brain, which is involved in speech control... so i would get "speech arrest" where i suddenly couldn't get any words out my mouth at all... because i was conscious of this, but unable to do anything about it, i did find it frustrating, especially if i was in the middle of a conversation with someone, and was unable to speak, but couldn't explain why.... during the seizure i would also vocalise a lot... which i was sometimes aware of, but also couldn't control... and as such that was a very wierd experience.... i guess Ingrid's experience would be different here too though.

Becky said...

Sorry, it wouldn't all fit into one comment, lol!

Another slightly rarer side of my seizures was the fact that along with general things such as tiredness or sickness, certain types of music could sometimes trigger seizures in me. I used to think that was very strange, but my neurologist explained it's just as much of a medically known trigger as other things.... just a lot rarer... Anyway, this meant that some types of music literally made me feel drunk and really wierd, and then i would collapse and have a seizure.... i'll be honest, i didn't like this.... but i don't think it's common with most people.

Anyway, i'm sorry to be writing so much... i guess, what i'm trying to say is, the doctors may well be speaking the truth when they say Ingrid doesn't suffer..... i guess she would probably feel tired from them... but she may well not experience any other pain or anything... i guess it's hard to know. Sometimes children would ask me if they "hurt me" and i always told them they didn't really hurt.

Also, as i think i explained before, i was often very aware of God's mercy and presence with me.... and this was a very comforting thing. I know that some people do have "spiritual experiences" during seizures, but i don't think this is what this was... i truly think it's because a lot of people were praying for me, and God was simply being true to his gracious and tender nature and giving me relief by filling me with His peace and hope. I would say that i am convinced that God would do the same for Ingrid and therefore you can take comfort in remembering that He is always close to His children, especially when they are experiencing something which would otherwise be "unpleasant".

Sorry to have written so much, i hope this is somehow helpful...and forgive me if i shouldn't have posted this at all. Thanks.

Anette Acker said...


Please don't apologize for writing the blog post! It was actually helpful to me, because I've always wondered about it. I never wanted the doctors to tell me what they thought I wanted to hear.

Thank you for taking the time to explain what it was like. I found that very helpful, and even though Ingrid's seizures might be different, it gave me a great deal of insight into what she is experiencing.

I really liked what you said about feeling God's presence when people prayed for you! I hope Ingrid does too.

Becky said...

Ok, i'm glad you found it helpful. I think that's the first time i've ever explained it so fully (in writing.. obviously i've talked about it with my family and doctors..) but i found it hard to descibe it briefly, hence the lengthy reply, sorry about that!! Hope Ingrid is doing well at the moment. Love becky