Tuesday, July 30, 2013

3,098 or more thoughts on fatigue

Saturday: I sit here, thankful to be alive but crashing STILL!  I only left my house once this week to attempt my four hour shift at a library!  I'm trying not to pout about missing out on a garage sale adventure with my mom and sister today!  I'm so tired today,  I will save the beginning of this post and finish it another day, I'm too tired to try to put words together correctly! Today I was feeling so tired and down, I thought maybe if I did one productive thing this week, maybe I'd feel better about life! I chose to pull weeds in my flower garden.  I knew better and did it anyway because it was really bothering me! If you have ever had brain surgery you will understand that your head/skull/nerves never go back the same way!  There is always some degree of mild discomfort in the "head crack", as I call it.  Pulling out weeds only exaggerates that!!! I pushed through, determined to check it off one of my neurotic lists! While it feels good to have it done, the process still exhausts me.  It seems so simple, pull weed, put in bucket, empty in woods when full, repeat.  Mix that with balance while bending down  then balance getting up and balance while walking on uneven ground, over roots, up hill etc. It works my brain to think about all that, while you would just have to walk to the woods, dump the weeds and repeat; lucky you!! So, here I sit thankful for amazing family and friends who allow me time to crash still,  8.5 years after my aneurysm ruptured!! I know that many survivors are not given this kind of unconditional love and understanding, the following post is for you (you know who you are)!

Now Tuesday: No power yesterday, who knows why, so no blogging.  Instead I had  a forced "quiet day" to read! So I will attempt to finish my "blog on fatigue" for a friend who asked for a little help describing it to her friends and family! So aneurysm survivor friend, here you go:

I'll do my best to describe the horrid fatigue I am now plagued with.  I have never experienced a fatigue like the one post aneurysm/brain injury but, I think I have said it before, it is like living your life in 'finals week' at college. Now, I went to a small private college but I am pretty sure the feeling is universal and easily remembered.  Your brain is so overloaded with information it literally hurts and you are sure not one more thing will fit in there! Thankfully, back then my brain at least had an "autopilot mode" to carry on with. I remember eating only out of necessity because your lack of sleep and too much coffee made you nauseous all week long! Every little thing seems like it is just going to be "the straw that broke the camel's back", so for a week, you just exist in survival mode.  You just need to get through the normal every day routines caring very little about extraneous things (do my clothes match? did I take a shower today? am I wearing shoes? who cares if my feet are covered).  It is all out survival mode, you are simply too tired to even care or have energy to take care of all the little details, It's simply too much to deal with! Oh, and making decisions, what are those?? I don't even know what I like and at this moment I'm not sure I'm left with liking anything, I feel N U M B. Except, I'm left with a brain that can't handle too much light, or sound.  It feels like these things are a personal assault to the delicate balance of remaining nerves and neuropathways!! I feel like I want to curl up into a ball in a dark quiet corner, while my flooding brain unwinds! (*Earplugs may have saved my marriage several times already when the volume of the television or radio were unbearable to me, and yes I wear sunglasses when it rains or at dusk, I have no shame, it's pure survival)
Photo by me edited on PicMonkey.com



We, as grateful survivors, understand your life has been turned upside down by this too too! We understand you feel like you lost the "old us", we miss us too, please find ways to love us now for the new great things about us so we can start to love ourselves now too. We need your help to move forward in life and discover what we tare good at now, it will be different but there is certainly something good to find!  We need help redefining ourselves, not just as people who beat the odds and survived the unspeakable! Yeah, we know "what could have happened" and we are trying to make the best of it now, thankful for life and moments we get to be part of even if we miss a few along the way out of sheer exhaustion! Please be patient with us, but don't treat us like a child who never knew anything "before"!! Sure we have things to work on too, we are well aware, even if we aren't able to express it or deal with it yet or ever, fully!! It is too big to even process!! Saying words like "lazy" are very hurtful! We don't want to be "lazy", we simply lack the capacity to do anything some days but sit and stare everything else is too many steps or just plain too exhausting to face!!!Nobody knows why some days are good and some days aren't, they just are. Please know my brain caan't recover from things as quickly as yours! Realistically, parts of my brain are probably completely dead now. Other parts work overtime, ALL the time to accomplish anything!!! Frequent naps and rests are vital to my damaged, healing brain even several years out. While I am resting, is the only time the brain can heal! I need you in my life and I need you to remind me, who I am, when I forget! Together let's look for the good and positive experiences we might have missed, if this never happened.  The people we met, the friends and family who faithfully stayed by our side, the new depth and compassion for others going through trials or the assurance we are surely here for a reason!! Thank you for reading this, there is no way you can fully understand this journey I am on, unless you live it too and I would never wish that for you!!
copyright unknown from Facebook

Wednesday, July 17, 2013

Lorelei's wild jungle brain




This is what my brain feels like 24/7.  I can't concentrate on anything to save my life and when people talk to me this just like how my brain processes things for me. This is probably why talking to people (especially on the phone without other cues) is so exhausting to me, but I am so thankful I can "fake it" really, really well!

Monday, July 15, 2013

THE PINEAPPLE STORY



Or read this version of "The Pineapple Story" by clicking on the title or attached below!!!!

Pineapple 1

The Pineapple Story


Heidi’s dad let us borrow a book last weekend called the “Pineapple Story”.  It is a story about how God taught a missionary to Dutch New Guinea a lesson about surrendering everything to Him.  We read it as a family for our family devotions one night but It is a great story for anyone to read.  We hope it challenges you the way it did us.
Pineapple 2
My family and I worked with these people way back in the bush.  One day I decided that I was going to bring in some pineapples.  The people there had heard of pineapples and had tasted them before, but they didn’t have any source to get them.  So I got some from another mission station.  I bought about one hundred plants.  Then I got one of the local men to work for me.  He planted all the pineapple shoots for me.  I paid him, of course.   I paid him salt or whatever he wanted for the days he worked.  It seemed to take awfully long for those little shoots of pineapple to become big bushes and finally yield pineapples.  It took about three years.  Back in the jungle you long for fresh fruit.  You don’t get much fresh fruit or vegetables.  So finally that third year we could see fresh pineapples coming on, and we were just waiting for Christmas time because that is when they are ripe.  When Christmas finally came, my wife and I would go for walks to see if any were ripe enough to eat.  Finally, when they got ripe, we didn’t get a single one of them!  The natives stole every one!  They stole them before they were ripe.  That is their art.  Steal it before it is ripe or the owner gets it.
Pineapple 5
Here I am, a missionary, getting mad at these people.  Missionaries aren’t supposed to get mad.  You all know that.  But I got angry.  I said, “Look, you guys!  I have been waiting for these pineapples for three years.  I didn’t get any of them.  Now there are others getting ripe.  If any more of these pineapples are stolen, no more clinic for you.”
Pineapple 4
My wife was running the clinic.  She was giving them all their pills for free.  They didn’t have anything to pay.  We were knocking ourselves out trying to help these people, talking care of their sick, saving the lives of their babies.  One by one the pineapples got ripe, and one by one they were stolen.  So I felt I had to stand my ground with these people.  I couldn’t just let them run all over me.  But that was not really the reason.  It was a selfish reason.  I wanted to eat those pineapples.  So no more clinic!  Then they let their sick people die.  They couldn’t care less.  Life was cheap over there.  People with bad pneumonia would be coughing and begging us for medicine.  We would say, “No!  Remember you stole our pineapples.”  ”I didn’t steal them, they would say.  ”It was the other guys that did it.”  They would go on coughing and begging.  We couldn’t take it any longer.  I broke down and said, “Okay, tomorrow morning we will open the clinic again.”  When we opened the clinic they started stealing the pineapples, and I felt bad again.  Man!  These rascals!  But we finally found out who was doing it – the guy who planted them.  I called him on the carpet and said, “Look, buddy!  What are you doing stealing my pineapples?  You are my gardener.”
Pineapple 3
He said, “My hands plant them. My mouth eats them.”  That is the rule of the jungle.  If they plant something, that is theirs.  They had never heard of the idea of paying for services.  So he said, “They are all mine.”  I said, “Oh no!  They are mine.  I paid you to plant them.”  But he just couldn’t understand how that made them my plants.  I thought, “Well, what do I do now?”  It was the rule of their tribe.  I’d better learn to live by their rule.  So I said, “Alright, I will give you half of these plants.  ”Everything from here to over there is yours.  If they get ripe, they are yours.  And these are mine.”  He sounded like he was in agreement.  But my pineapples still got stolen.  Then I thought, “Maybe I should let them have all those pineapples, and I’ll get some new ones.”  But I knew that I would have to wait three more years.  That was hard for me to to do.
argument
Finally I said, “Look, I will give you all these pineapples, and then I will start all over again.  Now you make a garden and you take all these pineapples out of my garden so I will have room to plant new ones.  I don’t want your pineapples in my garden if you feel they are yours.”  So they said, “Too-wan, (which means outsider/foreigner) you will have to pay us.”  ”Now wait just a minute!”, I shouted.  They said, “No, No! You are asking us to move your pineapple bushes, and that is work.”  I reluctantly agreed, “Alright, I’ll pay you one day’s work.  Take them all away.”  Then they said, “We don’t have a garden ready.  Will you pay us to get it ready too?”  I said, “Forget it!”  These people were going too far.  I had had enough!
Pineapple 6
I told my wife, “This is impossible!  I am just going to pay some guy to root them all out and throw them on the trash heap.  Then if they want them they can just take them.”  So we did.  We rooted them all out and threw them on a heap.  What a shame, they were nice pineapple bushes.  Then I bought new plants.  I said, “Now look, all you guys.  I am going to pay you to plant them, but I will eat them, me and my family.  You don’t eat any.”  They said, “You can’t do that.  If we plant them, we eat them.”  I said, “Look now, I don’t have time to mess with a garden.  I have too many important things to do.  There are so many of you, and there is only one of me.  You have got to help me.  I want you to plant them, and I will eat them.”
knife
I wasn’t getting very far with them so I said, “I will pay you.  What do you want?”  I will give you this nice knife if you will agree to do it.”  They started to think.  ”He will pay us that knife so he can eat our pineapples.”  Finally they agreed.  During the next three years I reminded the guy who planted them, “Look!  Who is going to eat these pineapples?”  He said, “You are.”  I said, “Good!  Have you stil got the knife?”  He said, “Yes.”  I said, “Well, take good care of it.”  I knew that If he lost the knife I would be in trouble again.  The payment would be gone.  Finally, after three more years the pineapples began to ripen.  My wife and I walked through the garden again.  I said to her, “Pretty soon we are going to have a crop of our own pineapples.”  We started to thank God that He was providing them for us.  But do you know what happened next?  Every one of them was stolen!  I would see the natives go through my garden in the daytime to spot where the pineapples were, and then at night they would be able to go right to them.
Pineapple 5
I thought, “What am I going to do?”  We can’t cut out the clinic.  Let’s cut out the trade store instead.”  That’s where they get their matches, salt, fish hooks, and things like that.  They used to do without them.  That won’t kill them.  The next day I said to the men, “Okay, there will be no more store since you keep stealing my pineapples.”  When we closed the store they began to say, “We had better leave because we don’t have any salt.  If he is not going to have a store, there is no advantage for us being here with him.  We might as well go back to our jungle houses.”
Villagers leave
There I was sitting by myself eating my pineapples.  No people and no ministry.  I said to my wife, “We can eat pineapples back in the States, I mean, if that is all we are here to do.”  A runner returned and I said, “Get them all back.  We will open the store next Monday.”  I thought and thought.  How am I going to eat those pineapples?  There must be a way.  Then I got an idea.
Pineapple 7
A German Shepherd!  I got the biggest German Shepherd I could get on the island.  I brought him in there and let him loose.  The were very afraid of him.  They had never seen a dog that big.  They had little, mangy dogs.  They never fed them and they were all diseased.  And there was my well-fed German Shepherd dog.  I would always have to feed him when the people weren’t around because they would resent the dog’s food.  It was better than anything they got.  But that dog sure did the trick!  Most of the people didn’t dare come around anymore.  So we had the same result as closing the store.  People didn’t come.  I didn’t have anybody to tell about Jesus and I couldn’t get anybody to teach me the language.
eating pineapples
I thought, “What do we do?”  The dog wasn’t working after all.  In the meantime, the dog was starting to breed with the village dogs and would raise up a wicked half-shepherd, wild and hungry.  The doctor in town said, “If your kids or anybody gets bitten by that dog, I am not going to treat them.”  He was using the same tactics on me that I was using on the natives.  I said to my wife, “We’ve got to get rid of that dog.”  Well, I got rid of the dog.  I hated to do it.  Now that the dog was gone, the people eventually came back and my pineapples were disappearing as before.  I thought, “There must be a way.  What haven’t I tried?”
Then I came home on furlough and went to a church service.  The lesson I learned that day was that we must give everything we own to God.  The Bible says it is better to give, than to receive.  If you keep everything for yourself, you will lose them.  Give the things you love and want to God, and God will take care of you.  This is a basic lesson that I had forgotten.  I thought, “I don’t have anything to lose, maybe this will work.  I will give that pineapple garden to God because I am not eating them anyway.”  Now I know that is not a very good sacrifice.  You are supposed to sacrifice something that is valuable.  But I would give it to God and see if He could control it.
One night, after I returned, I stood out in the garden all alone.  I prayed, “Lord see these pineapple bushes?  I have fought to have the fruit from them.  I have claimed them as my own.  I have stood up for my rights.  It is all wrong, and I realize that now.  I have to give them all to You.  From now on, if You want me to eat any of Your pineapples, fine.  If not, then that is fine too.  Amen.”  So I gave them to God, and the natives stole the pineapples just like before.  A little frustrated that my new plan didn’t work, I thought to myself, “See, God, You can’t control them either!”  But I didn’t say anything.  I just kept praying and trusting the Lord to take care of it His way.
a Christian now
Then one day they finally came to me and said, “Too-wan, you have become a Christian, haven’t you?”  I was ready to react and say, “Look here, I have been a Christian for twenty years!”  But instead I said, “Why would you say that?”  They answered, “Because you don’t get angry anymore when we steal your pineapples.”  This was a real revelation.  Now I was living what I had been preaching to them.  I had been telling them to love one another, be kind to one another, but I had always been standing up for my rights and they knew it.
Finally, one of the young men started thinking and said, “Now why don’t you get angry anymore?”  I said, I have given that garden away.  It isn’t mine anymore.  So you are not stealing from me.  I don’t have to get angry now.”  Another said, “Who did you give the garden to?”  They looked around at each other.  ”Did he give it to you?”  Whose garden is it now?”  ”Whose pineapples are we stealing?”
gardener
Then I explained to them, “I have given the garden to God.”  They answered, “To God?!  Doesn’t He have pineapples where He lives?”  ”I don’t know whether He has any or not but I have given the garden to Him.”  The men left and went back to their village and said to the others there, “Do you know whose pineapples we are stealing?”  Too-wan has given them to God.”  After discussing the matter further, they returned and said to me, “Too-wan, you should not have done that.  Why don’t you get them back from God?”  ”We have not been able to find any pigs when we go out hunting.  The fish are not biting our hooks.  Even our babies are getting sick.”  They they said, “We shouldn’t steal them anymore if they are God’s, should we?”
God's Pineapples
The pineapples soon began to ripen and the natives came to me and said, “Too-wan, your pineapples are ripe.”  I said, “They are not mine.  They belong to God, remember?”  They said, “But they are going to get rotten.  You had better pick them.”  And so, I went out to the garden and got the best pineapples I could find and then I gave some of them to the natives.  When my family sat down to eat them, I prayed, “Lord, we are eating Your pineapples.  Thank You for giving some to us and some to the natives.”  All those years, the people God sent me to reach were watching me and listening to my words.  They saw that the two didn’t match.  But when God changed my heart and mind, He began to change theirs too.  Soon many of the natives decided to become Christians.
Fixing things
The natives began bringing all sorts of things for me to fix.  I said, “Lord, my time is Yours too.  If you want me to fix pots, shovels, and harmonicas out here on the mission field, then I will.”  I wasn’t getting as much Bible translation done as I wanted to, but more and more people were coming to Christ!  They kept saying to each other, “Too-wan has become a Christian.  He tells us to love one another and now he is loving us.”  One day, I was fixing a broken chair in our house and one of the natives came over and said, “Here, let me help you hold it.”  After we fixed it I said, “Aren’t you going to ask me for any salt?”  He said, “No, Too-wan.  Don’t you remember?  You helped me fix my shovel.  Now I help you fix your chair.”  I thought, “Wow!  That is the first time they did anything for me without getting paid for it.”
Pineapple 11
So what is in your pineapple garden?  Have you surrendered it to the Lord yet?  Do you trust Him to take care of the things that are most important to you?  Will you patiently wait for Him to answer your prayers?  If you can answer “Yes” then God will give you your own “Pineapple Story” someday.
You only believe as much of the Bible as you are willing to live.

Story used from "The Smith Family"  http://www.smiths-givelife.com/the-pineapple-story/

Tuesday, July 9, 2013

3,080

According to my "Siri" it has been 3,080 days since February 1, 2005. That is 73,920 hours of recovering(I don't dare calculate the actual number of hours I may have been sleeping) from the damage that life sustaining blood cause when it escaped from my right middle cerebral artery! It occurred to me today, I had not written a blog post in about a month.  It is not for the lack of posts that formulate in my exhausted brain as it refuses to simply fall asleep without pondering, reflecting, or writing emails and blog posts! Sometimes, much to my husband's dismay,  I can't resist grabbing the pen and paper on my nightstand and writing these ideas down.  Anyway, after a complete total and utter crash after a long busy weekend I decided to take today to go nowhere and do nothing but things I enjoy doing! So, blogging it is! Okay, so i also have a load of laundry in the washer but that seems manageable today!  Yesterday, was another story.  I stayed on the couch......ALL day until Nate came home from work.  I knew attempting stairs would surely result in a lack of depth perception or even worse, forgetting a stair means I need to step differently than on a flat, familiar floor!I have ended up sliding down the stairs on my bottom a few times when I forgot to step!  If you told me this story before my TBI, it would have scared me that a person could literally "forget to step" and there may have been a small piece of me that couldn't even believe such a thing could happen to an otherwise highly functioning person! Life is funny like that. I'm not going to lie to you, I am still learning to accept this reality in my life! With that being said, I crashed so hard this weekend that my head felt like it was "buzzing" and the only thing I was capable of was SLEEPING!!!! It has been years since I crashed this hard and this way.  I no longer feel guilty about how many hours might have been spent sleeping because I know my brain needs it.  There is no other way for it to recover from it's new way of functioning!! Even still, I push my limits sometimes and am always surprised by how exhausted a human being can feel after just a "normal, busy weekend".
  With all that ranting behind me, here is what I have been up to the last month!  The beginning of June started with a "BIANYS Annual Conference".  This is always one of the highlights of the year for me!  I get to see old friends and feel "normal with a brain injury" for two whole days!  Everyone there gets it, because they live it or work with and advocate for loved ones with brain injury! It is a LONG, EXHAUSTING two days for everyone.  But, well worth the calculated exhaustion.  This year my friend K, convinced me to escape the dinner crowd and get some fresh air by walking across a busy street to Olive Garden.  Thankfully, this city girl knows how to cross a busy street because this is a skill I still struggle with, especially on foot.  Perhaps, you remember that my family always grabs my hand to avoid catastrophe. If left alone I don't manage it well.  With K's expert street crossing skills we made it across a busy highway safely.  It was nice to be in a quiet, dimly lit room after a day of harsh florescent lights and large crowds of indecisive people! We enjoyed a quiet,yummy dinner and were so stuffed K insisted on dessert "to go". Upon leaving, it was obviously pouring outside!  The entrance to the hotel was right across the busy street but was set back quite a way from the road!!!We had not been prepared with an umbrella or even a jacket with a hood! I'm a shameless country girl, so I suggest just walking back to the hotel briskly! K, a girl with class, insists we do not walk in the rain!! She wants to wait it out until it stops, I want to go home and my Jeep is parked across that busy road between the rain drops! I sit with K for a few moments before calling Nate for some comic relief! He is amused and informs us it is supposed to rain ALL weekend! I'm so tired and I just want to go home and lay on my couch so I decide I am just going to brave that busy road myself, get my Jeep, and pick K up! She is a good friend and would never allow this to happen. After asking the Olive Garden staff for an umbrella to borrow she settled on just using a paper carry out bag to shield her hair from the water drops! As we are walking out the door a couple behind us is obviously amused by our solution to the rain problem.  They apologize for laughing at the situation and seem to have a great sense of humor about it! K, still not keen on walking to the hotel with a paper bag over her head, asks them if they will give us a ride to the hotel across the street! Graciously they finally agree.  I can only imagine what was going on in their minds.  I am pretty sure they were trying to remember all the emails they had read about the latest "scam" to be weary of!  We made it across the street safe and dry as we all laughed about the story they would tell their friends,  it went something like picking up two "bag ladies".  I added to their story, suggesting they include the part about the "bag ladies" being at a "brain injury conference" and leaving on a humid, cloudy evening without any thought of an umbrella! So, K gave me permission to share with you the story of our adventure and the photo to prove it!











June was also filled with a  family reunion to celebrate my two amazing cousins. One graduating High School and the other a Yale graduate. But first we celebrated our 11th wedding anniversary, a wedding, went strawberry picking, took my turn working at the library on a weekend (thankfully before summer reading was in full swing), never ending yard work, Nate's tractor restoration,fought  a war on Carpenter Ants eating our log home, survived ablation #7 for a dear friend to correct heart arrhythmia, and the discovery of a benign spot on my dad's liver, aging grandparents, and the celebration of life after the death of a brother in Christ.  July has proven busy, busy, busy too.  Fireworks, friends, camp and life during the summer married to a busy service technician!  Shoo, no wonder I crashed!  Here are some pictures to prove it.....
Thankful for God's promises!




Naptime at my house (I'm not kidding)


11 years with my love!





BIANYS speaker PJ Long!

The amazing 'A', I love this woman!!