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April 19th 2012
Last week I wrote about the filters we all use every day, including the one in our brain. Our brains filter an enormous amount of information every day, and if that filtering ability is compromised that leads to some very annoying consequences. Well, I now know specifically what information my brain isn’t filtering correctly. Sound. I fall into the 7th percentile for ability to filter audiological stimulation. That’s a fancy way of saying my brain doesn’t filter what my ears hear.
I knew sound was an issue, I live with the sensitivity every day. Now I have the verification from the wonderful field of medicine to prove it. 7th percentile. My brain filters sound no better then 7% of the population. This would explain why over 90% of the people I know cannot understand why sound stimulation is such an enormous issue for me. Not only does my brain fail to filter out the sound information that is useless, like the ticking of the clock or the hum of the computer fan, it also filters the useful information improperly, and the useless information it fails to filter interferes with my ability to properly evaluate, and react, to my environment.
So as a result I must now visit a new list of specialists to see what can be done about the problem. A speech therapist, which is a poorly named specialty, in order to learn tools to retrain my brain in this regard. Also I will see an audiologist to determine if there is a tool that would be useful with this, much like the glasses I now wear for light sensitivity. This means that returning to school may or may not happen in the fall. This issue must be dealt with before I put myself in a learning environment because how our brain filters, or fails to filter, sensory input effects our memory.
April 12th 2012
Motor oil, air intakes, vacuum cleaners, and coffee pots all require filters. Filters are a great way to allow what we want or need to flow through, while blocking what we don’t. They work great when we change them regularly so they don’t get plugged. When we don’t change them they tend to plug, and even overflow. If I forget to change the filter in my vacuum cleaner it over heats and shuts off. Same thing for me hair dryer. There are some pretty bad side effects to not changing the oil filter in a car.
Did you know our brains use a filter? Yup, they do. This week I have been thinking about filters since I met with a new neuro-psychologist who explained this to me.
The filter in our brain takes all of the information we get from our senses, including some we don’t usually think of, filters it and sends it to the proper destination. It is how what we hear gets to the part of the brain that interprets that, while also getting to the part of our brain that formulates a response. At the same time it filters out the sounds we don’t need or want. For example, it filters out the hum of our computers when we use them, or the sound of the dishwasher when we are watching TV. It also allows us to sit down on the couch without being constantly aware that we are touching another surface with a large portion of our body. The information that we don’t currently need is being filtered out.
Now imagine a filter is broken, plugged, or even overflowing. What happens? The filter may stop letting through what we need and want, and what we don’t need or want may get through, or even spill over. When a coffee pot overflows the hot water and coffee grinds spill unto the counter because the water still flows into the it. When the filter in our brain is broken, plugged, or overflowing we don’t stop taking in information with our senses, and that information overflows into other parts of our brain that try to compensate. When this happens we literally become overwhelmed with the volume of information we are receiving, and our brain desperately tries to interpret all of it at once. Just like a vacuum will stop working if the filters aren’t cleaned or changed, the brain does not function normally if it is not filtering the information properly.
That describes me. I am light sensitive, sound sensitive, and sometimes touch sensitive. I take in more information then I need, and my filter no longer filters out the parts I don’t need or want. The ticking of a clock isn’t filtered out, so when I am in a room with one I constantly hear it, tick tick tick tick tick. Yes, it is annoying. My ears pick up everything, even sounds many can’t hear because they have learned to filter them. No, it is not my imagination, the sounds are there. Sometimes there is so much to take in, so much the filter misses, that it overflows and my brain tries desperately to compensate for that.
When this happens my automatic reaction is an attempt to reduce the amount of stimulation I am taking in. Sometimes that may be as simple as plugging my ears or closing my eyes. Sometimes, far to often, it means leaving the room even in the middle of something. When I can’t reduce the stimulation, or leave the room, there are unfortunate effects. All that stimulation in my brain that is overflowing makes my brain want to get rid of energy, and it has to come out somewhere. It isn’t always the most pleasant thing for me or those around me. I cry, I argue, I cover my face, I try to walk away, sometimes I look like I am going melt down. Since most people don’t understand what is happening they attempt to help, but only make it worse by increasing the stimulation.
Eventually if I cannot stop taking in more information then my brain can filter I start to shut down. When the oil in your car overflows all over your engine, the engine will stop working. This is a perfect picture of what happens to me, once every few months my brain simply cannot compensate enough for the overflow of information. When your engine stops working you cannot reason it into working again, only the mechanic can fix it. Fortunately the mechanic can get parts! I can’t get replacement parts. When my brain stops working right only time helps.
Is this annoying, most certainly. I can’t just go to the parts store and buy a new filter, though that would be very convenient. It is annoying because I can’t control it, and I hate that!! It is annoying because it effects the people around me. If you happen to be the person around me when I am getting close to shutting down, you end up being the witness to the worst side effects of the surgery I had. Most days I act just fine, function just fine, and look just fine, but that doesn’t last long once the filter starts to plug and overflow. I know it is going to happen, I just don’t always know soon enough to stop the intake of information before it overflows.
Most of you who read this have never witnessed this in me. You may have seen glimpses of it on my social network sites that sometimes get spilled all over when my filters start to fail. When the filters are failing, my reactions and my judgement aren’t always very reliable, so I say and do things that most adults would not consider mature adult behavior. I know this as well, but unfortunately I don’t control when, how, or on what, the filters overflow. I try, I do my best, but I fail. My failures are really apparent, really obvious, and really bothersome to anyone who witnesses them, there is no hiding them. My failures are only made worse when people judge me for them. No one should be judged for the failures in their lives, because we all have them, some of us just can’t hide them very well. The worst reactions I get form others are anger, and a refusal to understand, both of which cause the problem to worsen.
If I could get a new filter I certainly would. I do my best to clean my filter, and to avoid what causes it to overflow. Yet life is not avoidable, and on any given day the thing that might plug my filter is not predictable. I refuse to let this broken part of me determine my life just to avoid failing. I may fail many times, and apologize many more times, but I will not stop trying because I fear the failure. I live the life God has laid before me, accept that I will fail, and pray those failings will be less intense and less frequent over time.
March 15th 2012
Over the past several years I have had the unfortunate experience of coping with how my surgeries have effected me. The worst part of that is not the effects, but how people have reacted to them. Most people have tried to understand. Most people have been willing to grant me forgiveness when the effects cause me to behave badly. Most people have been able to accept the concept that my emotions, my ability to communicate, and my reactions to situations have all been effected by the physical changes to my brain. Most people, not all. Some seem to think I choose to react badly. Some people treat me like I do it on purpose. Some people may never change their minds on the matter, though others might. Maybe this will help them.
The surgery I had included the removal of the part of the brain that controls emotional responses, it’s called the Amygdula. This part of the brain allows a person to deal with emotional stimuli, process that information, and form appropriate responses to that stimuli. When this has been removed the sudden physiological change in one’s brain causes havoc on ones ability to do this. This change means a person is unable to react appropriately to stimuli until their brain learns how to process the information in a different way. This takes time, a long time. Every situation the person faces becomes a learning experience. Like most things, it takes more then one time to learn. Every situation causes different stimuli, so it might take years before the person learns to formulate how to respond appropriately in a given situation. The person will likely learn how to deal with and respond to situations they face every day quickly, because they are repeated so often. Situations a person faces infrequently will take longer, not because there hasn’t been enough time, but because the situation hasn’t been experienced often enough.
This is me. This is what I have been relearning for nearly 4 years. Every situation I encounter, every scenario, means I am learning those skills that I once had, but have lost. This is not the easiest, or funnest, skill to learn as an adult. People expect that you have already gained those skills, so typically the the failure to use those skills is not received well. However, most people are willing to gain understanding when you explain the situation, and why you are relearning the skill. I have said more then once that brain surgery is a great excuse for having said or done something stupid. It isn’t really an excuse, it’s a reality, it is a valid reason. If a person makes no effort to relearn the skill, then it becomes a bad excuse. Most people allow a person the time to learn, and give understanding to the failures in the process.
Yet there are some people, the ones who won’t listen to why, and refuse to accept the reason. The people who don’t want to understand why, the people who would rather just get mad. Those people will not accept that only time and experience will change what happens. I have some of those people in my life. I wonder if they will believe me now that I have it in writing, from a trained professional. My vocational evaluation explains the issue, though hard for me to read, I will share it. Maybe those people who haven’t been willing to accept it will be more likely to do so now that it’s in writing, and not coming from me. I have it in writing, from a professional. The following paragraph was in my evaluation:
Kelly’s disability codes were obtained from IRIS which identified her primary disability as Psychosocial Impairments (interpersonal & behavioral impairments, difficulty coping) caused by Physical Disorders/Conditions. Her secondary disability has been identified as Cognitive Impairments (involving learning, thinking, processing information, and concentration) caused my Physical Disorders/Conditions.
The key words to me are not what the disability is, but why. Caused by physical disorders/conditions. The core issue is the physical disorder/condition that is causing the behavior. It makes sense that having part of your brain taken out would cause issues! In my case the issues happen to be very obvious, very apparent, and effect other people as well.
I am learning. In the past 3 years I have relearned skills I have lost. But I am not quite there yet, I am still learning. This process is slow, painful, and difficult. Yet it is worth it. The question is, will people allow me the time it takes, give me forgiveness in the process, and understanding when I don’t get it right. Most people have, and most people will likely keep doing that. Some people, I fear, may never believe the reality.
March 13th 2012
Once again I am amazed by my husband. In part because of what he is doing, but mostly because of how he goes about it.
We are still trying to sell our house in Nevada. This means paying a mortgage on a house we aren’t living in, while paying rent to live here. This also means double the utility bills. It’s been nearly 6 months of this. Our savings is gone. To continue to do this I started looking for a part time job, which has to date been a failure.
God proved to us again that he will provide what we need. A few weeks ago my husband’s company approved all overtime. This means Mike can work all the hours he wants, as long as the extra hours are during the day. He works swing shift, 3-11:30. The last few weeks he has been going in early, going in on days off, and never once has he complained about it. Not once. During the time I was so horribly sick, he never complained once, at least not to me.
This is why he amazes me. He has stood with me, held me up, cared for me, watched over me, loved me, provided for me, and never once with complaint. He continues to do that, and continues to trust that God’s timing is perfect. I look at him and know the man standing with me is a picture of how God treats us. God stands with us, holds us up, cares for us, loves us, provides for us, and never complains. In my husband I see those characteristics, and I am amazed. I thank God for giving him to me, and I am amazed. I am amazed at how God provided for me a husband who never complains, not ever, as he stands with me.
February 18th 2012
15 years after I met her, and despite trying over and over, I give up on the idea of having a good relationship with Mike’s sister. Within days of moving to Utah she yelled at me for expressing an opinion that was different then hers. She’s cried because I’m “so negative”–which translates to I don’t agree with her opinion or way of doing things and her self esteem can’t handle “being criticized”. She likes to play the victim, and I am the sinister one. If I disagree with her, suddenly I am criticizing her. I don’t agree, so I’m being critical? Yup, according to her. All while at the same time she felt free to share her opinions with me. I don’t recall ever crying once because she disagreed with, or storming out of a room because she didn’t share my opinion, and I certainly don’t recall yelling at her because something hurt her feelings.
She’s yelled at me for expressing my opinion, feelings, and thoughts. She’s has claimed her kids hate me, who are always excited to see me. Just a few days ago I saw her oldest and we talked for about 15 minutes, her mother purposefully avoided me. When I was super super sick she got mad at me for crying because her husband hurt my feelings, though unintentional it still hurt. She actually said it was my fault and that by being hurt I was judging him for his comment. Last time we were at her house her husband said something that hurt my feelings, he included my name in a comment in a negative way. I still expressed this to him so it would be avoided in the future, and asked him not to say that again. She got mad, jumped up, and stormed out of the room. I was hurt, expressed that, and she gets mad? Makes sense to anyone else? Didn’t think so. About 10 minutes later I tried to ask her why she was mad at me, she refused to say. I walked away, and she ran after me yelling at me for about 5 minutes. I told Mike we were leaving her house because I wasn’t going to subject myself to that. She yelled, turned to walk away, came back and yelled some more, turned to walk away, came and yelled some more. She did this 3 or 4 times, all while blocking my way out of the room we were in. How is that my fault in any way? According to her I was being critical of her husband because I expressed to him I was hurt. That makes no sense!
I have said several times in the last 15 years that I was not going to try anymore. Every time that didn’t stick, for one reason or another. Once it was because Mike’s mom actually said to me “please don’t do that to my family”. So I tried again, only to be yelled at about some other thing I said that was innocent. I can’t remember all the times she yelled at me, cried, ran out of the room, or some other crazy reaction to something. I know she remembers them all, she bring them up from time to time to make a point about how she is the victim. Her issues started long before she met me, I just became a convenient one to blame. Having a relationship with me wasn’t critical, so it was easy to dump on me. No more, not any more. Mike has tried to tell me more then once “you do not have to be friends with my sister”. I can’t even have a cordial relationship with her because no matter what I do, say, or apparently think and feel, I get into some kind of trouble with her if I say it. Not any more though, because I will not subject myself to a relationship that is so terribly unhealthy.
February 13th 2012
Fifteen years ago I moved to Utah to be with Mike. We had met the previous September, online, and gotten engaged after Christmas. We had spent all of 5 days together in person at that point. I knew God had brought him into my life, and that I wanted to spend the rest of my life together with him.
Fifteen years ago I left all that I knew to move, and when I arrived I spent 6 weeks living with his sister until I had an apartment again. Mike had flown from Utah to California to help me pack all of my things and drive a truck back to Utah. It was Valentine’s weekend 15 years ago. On Valentine’s day that year we had what I call our first “official” date.
I call it that because though we had known each other for months, and spent countless hours on the phone and online together, he had never picked me up for an actual date. We had spent several days together over Christmas, but none of those were traditional dates. So, that night, he came to his sister’s house to pick me up. His brother in law, as a joke, actually asked him “so what time can we expect you to have her home?” Now that he has 4 girls, I am sure practicing that question will come in handy soon.
Now, every Valentine’s day since I joke with him about that weekend, and about how we were engaged before we ever had our first “official” date.
February 2nd 2012
I have had so many tests over the past few days I feel like I am in school again! Vocational rehabilitation testing is a bit different then that though. I took personality tests, tests about my likes and dislikes, tests to discover what kind of job environment I desire, and skill testing. They came in all forms. Scantron testing, computer testing, one on one testing, and puzzle solving. My brain was stimulated in ways it has not been for some time. It was great!
The purpose of all of this? I want to find a new career. I loved the career I worked in for almost 20 years, and I cried more the once about having to give it up because I was sick. I tried to go back to it again over Christmas, but it won’t work, I had to admit that my old career is impossible for me. Now I need to find a new career, one I will be both good at and love. I might even have to go back to school, but I want this, I need this. I cannot simply sit at home on SSDI when I know I am well enough to work, at least in some capacity.
Nearly 4 years after my last surgery something is happening I never thought would. Something I said more then once I knew would be impossible. I am capable of, and desire to, go back to work. Wow, the Lord is good!! Over 6 years ago I left work so sick, so exhausted, and in so much pain, with no answers as to why. Nearly 4 years ago I made the decision to have a surgery that would possibly end my seizures, but could potentially have the side effect of affecting me so much I would never be able to work again. Nearly 4 years ago I made a scary decision I am so glad I made. Making the decision to have part of your brain removed is not an easy one, but I did it.
I had accepted, to some extent, the idea that I would never have a career again. I had accepted it in a logical intellectual way, but my emotions never let it go. Now I have the opportunity to do what I never thought would happen, which is both exciting and scary.
For those of you interested in details, I’ll list a few. Keep in mind that before and after my surgery I had evaluations to test my IQ which included every part of the intelligence scale. I lost 14 composite IQ points from the first test to the second, and the Dr. said I probably lost at least 5 prior to that due to the constant seizures. Here are some results.
-I regained most of the IQ points I lost. Test just before surgery 124, after surgery 110. Now it is 127. Wow, I am blow away.
-My spacial/visual perception and language scores are back up to where they were before surgery.
-My math score is, however, lower. This is not a surprise though, since I already knew this from using it in my daily life.
-My biggest areas of interest, no surprise here, Business Detail and Business Management. The third area being sales.
I wasn’t expecting any surprises, but was blow away by the change in my overall IQ score. I had no idea that over time I would regain that. The brain is an amazing, adaptable, mysterious creation of the Lord.
So with all that information, I will now make a plan for a new career. Vocational rehabilitation will play a role, and my next meeting with them is on February 29th. Everyone who knows me well knows that once I decide something I am determined to make it happen. This holds true in this case, as I am determined to show the world the amazing work the Lord has done for me over the past 6 years.
November 16th 2011
This month we celebrate Thanksgiving in America. November has become a month of thankfulness for many, a time when we reflect on those things we are thankful for.
I am thankful for so many amazing things in my life, but this week I am thankful for something very odd. I am thankful for a 6 year medical battle that even months ago I didn’t think would end. Odd, yes. Yet when I reflect on what I learned I cannot be other then thankful, for I gained something more valuable then health in the midst of the trial.
I learned how faithful God id to me. He gave me his comfort, strength, peace, shelter, and presence. I am thankful that I have been the recipient of his grace and mercy. I was able to see how God works on my behalf. During these 6 years I was able to experience God’s promises in reality. I learned that God’s character is unchanging and unwavering. God walked me through the battle, never leaving me. I am thankful for the battle because I was able to experience God in a way I would not otherwise have.
It may seem odd to be thankful for the battle that seems to have no end. Yet without the battle I would not have experienced God’s goodness in the same way. I would have missed out on seeing him work on my behalf, I would not have learned the joy that comes with trial. Seeing God work for me in battle taught me to have joy because of who God is, what he has done for me, is doing for me, and will do for me. I have learned to have joy regardless of my circumstance, because I know first hand how faithful God is. I am thankful that I experienced a trial that taught me that, for I know that in all my circumstances God is unchanging, faithful, and good.
October 12th 2011
Over 5 years ago we came here, and I was determined not to be here more then 5 years. I may not like the circumstances leading up to us leaving, but I am still excited none the less! God did amazing things for us while we were out here in the desert, but I am still thrilled to be leaving.
One of the things God did for us was walk us through a a tremendous trial. When we moved here I had just had my first brain surgery only 4 weeks earlier. After we moved here I didn’t get much better, in fact I continued to get worse. Less then 2 years later I had my second and third surgeries, 3 days apart. Leading up to that my Dr. asked me to keep a log of my seizures. For one week, in February of 2008, I did that. Today, in the process of packing, I found that log. I look back to that time and I can see how little I knew about how sick I really was. Twice that week I marked that I had 18 seizures, in varying degrees. Wow, seeing that just blew me away. When I tell people about that time I have always said I was having 3-6 a day, apparently my memory of that is pretty messed up.
At that point in time, when I kept that journal, we were in the process of making a final decision on me having surgery, a surgery that gave me only a small percentage chance of being seizure free. I had already had all the testing done. It came down to this, I could not make the decision to just do nothing, knowing that surgery was the last means I had in my fight to get better. I cannot imagine having chosen any other way, despite the side effects surgery has left me with. In realizing how many seizures I was actually having, I am now convinced that the surgery not only eventually led to me being seizure free, but it saved my life. How long would I have survived having over a dozen seizures a day? I am glad I will never know the answer to that question.
In some ways I feel like I am coming out of the desert in more then one way. The first way is obvious. The second way is my ability to put my life back in order. I am now seizure free, I can drive, and I am considering getting a part time job. The desert served two purposes for me. It forced me to slow down, stop living such a hectic life. It also forced me to rely more on God, and less on myself and others. As I leave the desert, I am grateful for what it gave me, but I am not sad in leaving it.
September 12th 2011
Following is the second part of a series I am writing for the Season of Prayer at our church. I posted the first one just a few days ago.
As we continue to pray that we be a people broken before God, let us look again at David’s prayer, as recorded in Psalm 51:10-12.
Psalm 51:10-12 NIV
Here David is calling out pleading with God not to cast him away because of his sin. This pleading results from David’s realization that his sin is against God:
“For I know my transgressions,
and my sin is always before me.
Against you, you only, have I sinned
and done what is evil in your sight;
so you are right in your verdict
and justified when you judge.” Psalm 51:3-4 NIV
The first step in being broken before God is recognizing that when we sin, we do so against God, and that the act of our sin gives God the right to judge us. Yet, when we call out to God recognizing our sin, he does not give us what we deserve, but rather cleanses us.
Our pleading with God should be like David’s: an admission of our sins, and a recognition that God has the right to judge us. Each of us needs to recognize that only the Lord can cleanse us, and that our admission of sin is what the Lord desires of us.
“Repent, then, and turn to God, so that your sins may be wiped out, that times of refreshing may come from the Lord” Acts 3:19 NIV
If you do not know how to go before God in this way, use the words of David “Against you, you only, have I sinned”. Be honest before God, and plead with him “Create in me a pure heart”.Older Posts »