Sunday, August 15, 2010

Washing away the smell of seizures

I should have known I was getting into trouble.  Stress and interrupted sleep are my triggers and I am dealing with both, so you'd think I'd be smart enough to prepare for this sort of thing; it's not new to me.  It makes me mad that I let it sneak up on me every time,  and then it makes me mad that I'm feeling that way in the first place.  Doesn't make for very good company.

It took the smell of my bedding to make me realize what was going on.  I crawled in the other night, miserable as hell, confused, disoriented, sad and pissed off at everything and realized that it smelled funny, not at all like me.  That's when it dawned on me, strong sense of smell, metallic taste and scent, uh huh, I was having brain issues.

But, see that's the irritating part, I'm so busy struggling to keep up with the daily things, covering up the fact that I don't feel quite right, that I forget to keep an eye on myself.  And it just gets worse and worse; I forget to eat, drink water, etc.  So pretty soon, even my body is not functioning well.

So, yesterday I spent the day washing away the smell of seizures.  I washed my bedding and every other blanket in the house I think.  I also scrubbed a bathroom, swept and mopped the floors, vacuumed the rugs and stairs...and that is when it hit me.  I was not going to be able to clean my epilepsy away.  

I do this every time.  I start coming out of one of my fogs and clean like a mad woman.  Partially because the housework had fallen so far behind (but that doesn't usually bother this rancher too much), and partially because physical labor is so good for my tired brain, but it was when I was scrubbing to the detriment of my back, that I realized I was trying to wash away my epilepsy.  And it also dawned on me that it wasn't going to work.

I had a good cry, I'm a little ashamed to say.  But you know, I haven't cried much over being diagnosed with this damn disease or whatever it is, so I probably deserved it.  I think that is one of my problems, I just take my lumps in life and deal with them, knowing that it will make me a stronger person in the long run, blah, blah.  But everybody has to process things.

I think part of my problem has been not being able to talk about my brain issues.  I don't think that anyone likes to come off sounding like a complainer, I know I sure don't, but talking about things is a natural part of processing, in my opinion.  But my disability is a tricky one to talk about without sounding like I'm complaining in my mind, because it is so hidden, especially to describe in words.

When someone asks me about my brain issues, the best way I can describe them is to say that I struggle for words, and that I can't concentrate, that I have a hard time remembering things and have often lost things of importance during these times; so much so that I am no longer allowed to keep the check book, keys, and debit card while I am "off".  Now, let me guess, your first reaction was, that happens to everybody!?!

Let me apologize here, but that is one of the most offensive things you could say to someone when they are talking to you about their handicap.  I found this out in a rather odd, unexpected way.  I knew that it always kind of rubbed me the wrong way, but like I said, I've never given it much thought.  I just shut up and move on.  But I know for a fact, that it does not happen to everyone.  Not everyone has abnormal activity in their left temporal lobe and has to be on life changing, brain altering medication for the rest of their lives.

So I thought it was kind of funny when I found support in the very last place I was looking.  I was actually there to learn about autism for when I start working with special needs kids and my book.  It was a post about talking about autism, and how people perceive the conversation differently.  I had been following A Life Less Ordinary for a few months, commenting infrequently, because the first time I commented I made a fool of myself, or so I thought, but I made my intentions clear; I was there to learn more about these wonderful kids whom I really would love to help.

So I was quite shocked and pleased when one of her posts said that she was hoping to have heard from me.  And obviously when she did hear from me, I didn't disappoint her too badly, because she then took my comment and used it in her next post about how to talk to people about autism.  It wasn't only the author who affected me, but the comments as well.  These folks really got it, they understood how I felt, and that being blown off was just as bad as the people who thought that epilepsy was contagious!

I don't talk about it with anyone, not even Tom.  When I write about it here, that is pretty much the extent of it.  Which is pretty funny, don't talk about it with the ones you love, or put it out there for the world to see, but it seems sort of anonymous, just typing it, you know?  I hadn't even really mentioned it to the people on A Life Less Ordinary, but their comments and lives are the ones that help me realize what it was that was troubling me so.

I often wonder if things would be different if I had been diagnosed as a child.  Looking back on things now, I know there were many opportunities.  Would it have been better for me to have gotten used to the meds as a child?  Would I not have this adjustment time of learning to remember to take care of my own basic needs and balance life (family, ranch, business, etc.) if I had had an advocate (my mom and dad) like these commenters?  And then I realize of course things would be different, and maybe not for the better, and it all goes back to my basic belief that everything happens for a reason.

But, you know me, I will turn this piece positive, I will not let it be a negative thing.  But I wanted this post to sink in, and sometimes to do that, I have to not be all happy all the time, I guess.  Life is not happy all the time, but if you deal with your crap and move on, well then more power to you.  But my point here, is that I had gone to A Life Less Ordinary to learn, and to get my name out there in the blogging world, and that is exactly what I did.  And I found some supportive new friends in the process, so thank you.

Although I can't wash my epilepsy away, I can get rid of that darn smell, if only until next time.  Hopefully I will learn from this experience and my new friends.  But what I can do for sure, is to remind all of us to be good listeners.  When a person is talking about a disability, or even just a hard time in their lives, just let them talk, don't feel the need to compare it to your own world.  I know you are just trying to be empathetic, but many times it just comes off as underestimating the issue.  Many times all they need is an open ear and mind.  And possibly a strong shoulder to cry on.


Tiffany said...

wow Judy, you sure painted a vivid picture here. Imagining you trying to wash your epilepsy away squeezes my throat.

{Judy} I hope you know you could talk to me if you ever wanted to...

irina said...

Wow, Judy that's a strong post. And I feel so understood! Every time I want to explain to someone what challenges we might face with our soon to be adopted kid, and try to make examples from what I've read and heard, and if that someone is a parent, he or she will for sure say: any kid could do that. Could not, I always want to say, but only you will understand... Thank you!

Royal Ranch said...

Hi all,
My parents, Jim and Pat Shepherd chimed in, but on the wrong post, so I have copy and pasted their comment here:

Really poignant post. It leaves us with so many thoughts. Mom and I know a bit about your struggles and we could tell that things were not good when we saw you on Friday.

Like most folks, we really struggle with what to say. It is easy to ask how you are doing, but we can usually tell when you are struggling. When we ask, we would love to have you tell us what is going on and what we can do. Most of your good friends probably feel the same way.

When you do open up a bit and folks say that they can relate (of course they have no real concept of your "pain") that is a typical "I don't know what to say" nervous remark.

We do need to be better listeners and sounding boards. That burden is on us. The burden for you is to contact any one of us and let us know that you are struggling and open up a bit. We would be glad to listen or help in any way we can. You don't need to suffer in silence.

So, pick up the phone and call us when you need to. And that goes for you to Irina.

Rupinder said...

Many times all they need is an open ear and mind. And possibly a strong shoulder to cry on.

baby boy clothes

Daisy said...

Washing away the disability - I hear you. I sometimes cope (with hearing loss) by becoming anti-social, spending time online and in the garden rather than facing the extra work it takes to successfully socialize. It never really works, though; admit it or not, I need people.
Many hugs and good wishes for you.