Tuesday, June 18, 2013

Living with Seizures 101 or 'Seized by Grace' by Sheryl Sherman


 

Recently I stood next to an older woman who had been recently diagnosed with Alzheimer’s disease.  She had just been informed that her driver’s license was being revoked due to her cognitive testing.  My dear friend was trembling in fear.  ‘What am   I going to do?  How will I get around?’  Then, she was unable to put her words into sentences.  Yet, she was aware that she was having difficulty with speech. That frightened her even more.

I knew that nothing I could say or do would take away the fear.  How do I know this?  I have lived with Epilepsy since 1994.  The denial, the fear, the anger and the resentment were battlegrounds for me.

This is my story.  I do not pretend to know all about neurological disorders, dementia or epilepsy. I do not wish for you to believe that someone with seizures gets dementia either.   Yet, I will tell you MY story.

I remember distinctly that I was working 3-11 as an LPN in the year 1994.  I was in the dining room of the nursing home where I worked and I had this sudden feeling of de ja vu!  I also had this weird feeling of something dropping in the pit of my abdomen.  I started to laugh at it all and sat down wondering what on earth was going on.  It went away after a while and I continued my shift. 

That night I remember being pulled from bed and later waking up in a emergency room.  My husband was sitting next to me wearing sunglasses.  I thought I was having some weird dream.  I was so tired that I could barely stay awake.  He tilted his head at me and said ‘Sheryl, you had a seizure.’ I later learned that I had broken his glasses during my seizure and he was wearing his prescription sunglasses.

All that came to mind was, ‘The patients I take care of always soak themselves.  I checked the bed linens and I seemed dry.’  I tried to speak but my speech was foreign to me.  I must have dozed again, for the next thing I remember was sitting up and doctors were telling me to squeeze their hand.  I tried to focus and do this but they kept telling me over and over to squeeze their hand.  I became upset and told them I was trying to do just that.

One of the doctors thought I’d had a stroke because one side of me was weaker than the other.  Another doctor said no, I’d had a seizure.  Thus started a whole new way of life for me.

In the days that followed I was terrified and anxious.  I was told not to worry because I did not have Alzheimer’s disease and my memory would come back.  I’m not sure how long it took but I did return to work after that.  I was not sure who everyone was, and I was starting out slower than normal but I was working at least.  In the weeks that followed I realized I was doing better but I had trouble focusing.  The doctor put me on an antianxiety medicine to help me remain calm.

My eyes bothered me quite a bit. I was having double vision.  I remember the eye doctor had given me glasses with prisms in them to help with this.  Then, I noticed I had a constant dull head ache that never went away.  I was told this would pass.  Meanwhile, I lived with it day and night for a long time.  I was told to stay away from caffeine products.  I tried this and it did nothing.  So, I went back to having coffee.

My emotions were up and down and I suddenly was confused quite a bit.  The neurologist told me that I needed to see a psychiatrist because my symptoms had nothing to do with his line of work.  I realize now that this is typical.  I was too proud to go to a shrink back then, but thinking back on it; I think I should have.  I’ll speak more on this later.

My short  term memory is not that good to this day so I do not remember why, but I had stopped taking my seizure med, Tegretol.

In 1999 I found myself with that weird feeling that something was not right.  I had that sudden feeling that something fell in my abdomen.  I went to lay down for a while and apparently passed out on the floor.  I remember my husband helping me into bed.  That night I suffered another gran mal seizure and ended up in the emergency room once again.   I was told that I had a right temporal lobe seizure and that I indeed had epilepsy.  One thing that I noticed from after both seizures was that I had a high sensitivity to sound and light.  It felt like the doctors were yelling at me both times and I wanted to run to a quiet place.

The doctor told my husband to give me a large dose of my medicine after I got home from the emergency room.  My life was in a fog for the longest time.  I could not remember my own home, or what was in my closets  to wear.  I was always surprised to find new clothes.  It was new to me as I did not remember them.  I remember one day I had decided to sweep my kitchen floor and could not remember where I stored the cleaning supplies.  I sat down at the kitchen table and shook like a leaf.

I want to insert something here that bears mentioning.  I told the doctor how I felt and how I could not remember the simplest things.  I told about the head aches, memory loss, confusion and fear.  I was told ‘You have a big hole in your life that can only be filled by going back to work’.  My husband was sitting with me and we stared across the doctor’s desk.  I heard a low voice that was my husband’s.  ‘Would you want her taking care of your loved ones?  She is a nurse.’

My husband spoke to me after we returned home.  It had been difficult to function for over a month.  We decided that it was best for me to remain at home and quit my job.  This started me on a battle of the mind.  I felt very guilty for not being able to work at my profession.  Feelings of guilt over this mixed with feelings of guilt over my faith in God. 

I have never denied my Christian faith and I knew then that God was real.  My heart was to be a good witness of his healing power.  Yet, I wondered how much was I really unable to do or was it that I was merely afraid to do.  Each week I would ask for prayer and ask the Lord to tell me what to do.  I fought against telling myself that I had epilepsy or any problem at all.  Many were telling me to not label myself with this diagnosis.  Yet, many times I would begin to do something around the house only to wake up an hour later after having a partial seizure.

In my own mind I warred with trying to put together what was a physical problem or a mental problem.  Was I having seizures because I had some demon inside me?  I remember at one time a group of well meaning women actually tried to call out the demons in me.  This really freaked me out cause I was having a blinding head ache at the time and it felt like screaming all around me.  Again, this left me feeling like I was guilty of something but not sure what.  I began sending up what I call ‘blanket prayers’  “Lord, forgive me of any unknown sin’  .  

Because I was getting confused between my faith in God and was I really physically having a problem…I did not go seek any more medical advice.  What if they told me of another problem?  I did not want to name it and claim it on top of what I was already fighting against.  It all sounds rather funny as I look back at those days. 



The period of denial was a difficult road for me.  To know that indeed there was something wrong and yet find hope in knowing that God’s grace is sufficient took some time.  For a long time my whole thought process was to do anything it took to achieve healing.  I remember going to many church healing conferences.  I learned to speak life over my body and to continuously see myself as being healed.  I was having slight balance issues but it never showed a lot.  I always hung on to my husband’s hand when we went out.  At home I would steady myself with my hands on the wall or a chair or any furniture nearby.


I would get unsteady at times but seemed to be able to regain my balance in a moment or two.  The doctor had me do a few heel toe exercises in front of him.  He did not tell me why this was happening. 


Often, I would have a good day and believe that this is the day I was healed.  I searched the scriptures for healing verses and tried to memorize them.  This seemed impossible though as my short term memory was not cooperating.  This left me feeling depressed and feeling I was unable to follow the rules to attain my own healing.  I believed that God could heal and I still do.  I believed in what the word of God says too.  I followed every instruction that I heard from both my own pastors and those that I trusted.  I was in a battle searching for truth.





I had a wonderful pastor back then who helped put things into perspective.  If we do not explain what is going on…how can we ask others to pray into it?  How can they agree in prayer to what they do not know?  So often we are told to step out in faith, and yet we also have to use this same concept to step out of our comfort zones and admit there is a situation we need prayer for. 

I knew for a fact that God did not send down a curse on me to have epilepsy.  Yet, I did have much anxiety and fear.  I stopped taking the antianxiety meds because I felt that I needed to have more faith in God than in those medicines.  It did not occur to me that the Lord uses the meds as part of his own treatment.  I have since rescinded that decision and take meds for depression.  You would not believe the difference!

 

Well-meaning friends and even a few family members were always trying to ‘Fix’ me.  Everyone had ideas and things they had read that would possibly fix me.  I went to every prayer line I could find and had prayers over my situation.

My husband tried many times to help me get disability.  I was told due to my education and young age that I was not eligible.  There must be something I could do.

 We did not have money for knowledge back then as to how to proceed. We filed repeatedly for disability.  I was sent to a lot of doctors who checked my ability to put puzzles together, read ink spots, remember simple instructions and I tried to pass all the tests.  I did not wish to be dishonest.  I wanted to prove to myself that I was able to do things.  I was not trying to cheat the government out of any thing I was not entitled to.  Yet, I did not do well on the tests.  I can put a puzzle together after a while but I can not follow directions unless I write them down and frequently recheck them.  To this day I work with lists of housework to do, timers, buzzers and such so I do not forget to do things…or turn things off.

Our smoke detectors get lots of work and sometimes we have mystery meats!  We learned to develop quite a sense of humor.  My new favorite recipe is 'out to dinner'.  When my husband can not find his socks...he has learned to check the washer or dryer as I sometimes forget what I am doing.

When I tried to concentrate on things, I would get a head ache.  Frequent naps were the normal routine for me.  During this time I became a grand mother, and my daughter graduated.  Life goes on even though we go through things.  Unfortunately, I remember very little.

I was still expected to be a housewife and mom.  Anyone who looked at me saw a normal looking person.  But, my husband knew that I was having some serious difficulties in the every day life situations.

I learned to clean my house room to room.  Start with the bedroom and finish, go to kitchen and finish...or I'd start something thinking I'd go back and I never did.

   We had a disability  hearing and it was discovered that the only job I could do was sort laundry with supervision, with frequent rest periods, where I did not have to drive and be around large groups of people.  Large groups of people and back ground noise do not do well with me.

I can not hear anything and I frequently get dizzy and overwhelmed.  Still, I was denied disability and told I could not apply again unless I had another gran mal seizure.  This was not true of course, but we did not know this.


In my head I had a constant battle.  I knew I was not stupid and I am really quite bright.  Yet, I was unable to do things that others do without thinking.  Suddenly, I was not able to remember the words to any songs.  I forgot the vacations our family went on.  I could remember bits and pieces only.


I achieved a feeling of well-being and distanced myself from thinking of any problem in my brain.  The frequent walks in the sunshine did much to boost my mood.  On one sunny day I was off walking and suddenly collapsed on the sidewalk face first.  I’ve no idea why I lost my balance but I did.  I was not too far from home that day so I walked slowly home with a swollen knee.  I sat on my patio with an ice pack for a while.  My neighbor was a sweet lady whom I often spoke with.  She was hesitant but came over with her cane and told me to use it if I wished.

After she had left, I stared at the cane in disbelief.  How could I ever be seen walking with a cane?  That was for old people.  I put the cane in a corner and went about my housework.


A few days later I fell in the bedroom and broke the closet doors.  Once again, I was shocked that I had lost my balance again.  Still, I did not pick up the cane.  I was telling myself that I was ‘fearfully and wonderfully made’ as the word of God said.


I remember sitting on the patio one day and  complained to the Lord about my balance.  I had trouble with balance for years and felt it was getting worse.  Family and friends had laughed it off as my being clumsy.  As a soft wind blew over the patio I felt the presence of God.  A feeling of piece settled over me. I felt as though I heard him say ‘My grace is sufficient’.  Grace was explained to me as being ‘undeserved favor’.  I had hoped for more promises of healing though.

It was that day I got an email from a dear friend that made me laugh at myself.  Jay wrote ‘It seems you have two choices…use the cane or get a helmet.’  In fact, I sat there and laughed for five minutes.

I then opened my bible and found a few promises that fit my life perfectly. 

Proverbs 16:18 ‘Pride goes before destruction, a haughty spirit before a fall.’  In a flash I knew that I had been too self conscious to want anyone seeing me use a cane.  In my mind, the only way I could be a good testimony to God’s healing was to literally ‘step’ out in faith.  Yet, pride had creeped in there and unknowingly I had become too proud to admit I needed that cane.  I was then reminded of the shepherds who had always carried a staff.  I thought it was to keep the sheep in line, and indeed it was.  It had many uses though and when those shepherds got tired…they leaned on that staff.

Who was I that I was too good to use a cane?  What did I care what others thought as long as I was in God’s will?  It dawned on me that I was worried more of what man would think than I worried over what God would think.  God made me and I knew then that He controlled whether I receive healing or not.  I could be obedient, truthful and faithful and humble too. 

The wind flipped the pages of my bible and Matthew 5:45 came into my eyes viewing.  ‘’….He causes his sun to rise on the vil and the good, and sends rain on the righteous and the unrighteous.’  

Even Christians who love the Lord and do His will get rained on with problems and infirmities.  I picked up the cane and went for walks without mishap after that.  I did not walk as fast, but I was safe and I realized that I saw others in a different light as well.

Suddenly I noticed others using canes and walkers, wheel chairs and quad canes.  Had I been seeing them as less than people?  I asked the Lord for forgiveness and walked without complaining.

 Life has many choices for us. As I was recovering from the shock of what the doctor had told me regarding  the diagnosis, I realized that I had a choice.  I could choose to be afraid as I had been, or I could choose to enjoy each day.  I wrote down all the things I was afraid of.

1.        When will the next seizure come?


2.       What will my life be like?


3.       Can I drive again?

4.       What if I can never regain all of my memories?

5.       Can I be independent?

 

It dawned on me that all of this was beyond my control.
 

 I sat and began reading my bible one day in the book of Deuteronomy and read chapter 30:19-20

‘This day I call heaven and earth as witnesses against you that I have set before you life and death, blessings and curses.  Now choose life, so that you and your children may live and that you may love the Lord your God, listen to his voice, and hold fast to him.  For the Lord is your life, and he will give you many years in the land he swore to give to your fathers, Abraham, Isaac and Jacob.’

Choosing life by embracing each day positive sounded very courageous to me, and it probably does to you too.  However, choosing to do so and actually doing it day to day meant commitment too.  Each day I was given a choice to accept the facts, believe God’s power, refuse to give in to fear, anger and frustration, or give up and become the diagnosis and gather more problems to give myself a mountain of unmanageable agony.  It sounds crazy but in a nutshell that is how I see it.

I began to have several little symptoms that I felt had nothing to do with seizures.  I could not seem to walk steady at times.  I kept getting lost when we went somewhere.  This happened at the mall, grocery shopping etc.  I got confused easily but after a while my mind would seem to clear.  Still, at times I would not understand what was being said to me.

I regained my ability to drive after a few yrs seizure free.  One day I was driving to the bank and ended up in the next town.  It did not dawn on anyone that I  might have had a seizure behind the wheel.  We just laughed it off because I was constantly getting lost.  This was when my husband bought a GPS system.  This gave him and I peace of mind so I could still go places alone.

It became difficult to keep up with my friends conversation as I went out to lunch with them.  Little things that did not bother me before suddenly would not go away from my mind.  I was becoming obsessive compulsive.  This made people think I had mood swings.  This was blamed on my age because I was a little over forty.

My doctor thought I should try going off the seizure meds as I had no gran mals for almost five years.  I was very happy with this, thinking the issue was now behind me.

We decided to relocate to Florida.   I chose that time to stop taking my meds slowly.  After a month, I was completely off the seizure meds.  Then I woke up in the emergency room again after having a third gran mal seizure.

This time, I was put on different meds.  Also, it was found that my thyroid was not working properly and I was given medicine for it.  I was also tested for sleep apnea.  It was positive and I was fitted for a cpap.  Continuous Positive  Air Pressure.  We laughed, as I went to bed looking like Darth Vador now.

My driving came to an abrupt halt.  Not only did I get lost, I had no idea where I was in this new city.  It was quite a challenge to go to the mailbox.  We now lived in a big apartment development where the mail box was a few blocks away.

  I asked the Lord to heal me, and also to give me the right attitude to be a blessing to others as I am.  I remember telling him that I hated not being sharp minded and able to jump in the car or handle bank affairs or anything important like that.  His answer?  ‘My grace is sufficient’.  He gave me undeserved favor.  This was not the answer I wanted though.
I was now driven anywhere I needed to be.  Luckily, my husband enjoys grocery shopping, and all sorts of shopping and we began doing it together.  It is fun but it took some time to give up the idea that I was no longer independent.

I refused to be a prisoner in my apartment and forced myself to go outside and find this mailbox.  This started something new for me.  I found out I like walking.  In fact, I began losing weight as I walked almost 2 miles a day.  I had a cell phone just in case I needed to phone my husband, but I never needed it.  I took a wrong turn many times but I enjoyed the adventure.

I also started creative writing during this time.  I was having difficulty with speech at times and my thoughts would go all over, but writing for a few minutes a day was fun and good therapy.

Mostly, I learned to relax.  In a new city I had no responsibilities and could just sit back and enjoy new scenery. I was in sunny Florida and the beauty of palm trees, tropical birds and warm sea breezes were all around me.   I refused to give in to the side effects of new meds, and symptoms of unknown origin.  There was something amazing about stomping my foot and refusing to bend to fear. 


I achieved a feeling of well-being and distanced myself from thinking of any problem in my brain.  The frequent walks in the sunshine did much to boost my mood.  On one sunny day I was off walking and suddenly collapsed on the sidewalk face first.  I’ve no idea why I lost my balance but I did.  I was not too far from home that day so I walked slowly home with a swollen knee.  I sat on my patio with an ice pack for a while.  My neighbor was a sweet lady whom I often spoke with.  She was hesitant but came over with her cane and told me to use it if I wished.
After she had left, I stared at the cane in disbelief.  How could I ever be seen walking with a cane?  That was for old people.  I put the cane in a corner and went about my housework.

A few days later I fell in the bedroom and broke the closet doors.  Once again, I was shocked that I had lost my balance again.  Still, I did not pick up the cane.  I was telling myself that I was ‘fearfully and wonderfully made’ as the word of God said.

I remember sitting on the patio one day and  complained to the Lord about my balance.  I had trouble with balance for years and felt it was getting worse.  Family and friends had laughed it off as my being clumsy.  As a soft wind blew over the patio I felt the presence of God.  A feeling of piece settled over me. I felt as though I heard him say ‘My grace is sufficient’.  Grace was explained to me as being ‘undeserved favor’.  I had hoped for more promises of healing though.

It was that day I got an email from a dear friend that made me laugh at myself.  Jay wrote ‘It seems you have two choices…use the cane or get a helmet.’  In fact, I sat there and laughed for five minutes.

I then opened my bible and found a few promises that fit my life perfectly. 

Proverbs 16:18 ‘Pride goes before destruction, a haughty spirit before a fall.’  In a flash I knew that I had been too self conscious to want anyone seeing me use a cane.  In my mind, the only way I could be a good testimony to God’s healing was to literally ‘step’ out in faith.  Yet, pride had creeped in there and unknowingly I had become too proud to admit I needed that cane.  I was then reminded of the shepherds who had always carried a staff.  I thought it was to keep the sheep in line, and indeed it was.  It had many uses though and when those shepherds got tired…they leaned on that staff.

Who was I that I was too good to use a cane?  What did I care what others thought as long as I was in God’s will?  It dawned on me that I was worried more of what man would think than I worried over what God would think.  God made me and I knew then that He controlled whether I receive healing or not.  I could be obedient, truthful and faithful and humble too. 

The wind flipped the pages of my bible and Matthew 5:45 came into my eyes viewing.  ‘’….He causes his sun to rise on the  evil and the good, and sends rain on the righteous and the unrighteous.’  

Even Christians who love the Lord and do His will get rained on with problems and infirmities.  I picked up the cane and went for walks without mishap after that.  I did not walk as fast, but I was safe and I realized that I saw others in a different light as well.

Suddenly I noticed others using canes and walkers, wheel chairs and quad canes.  Had I been seeing them as less than people?  I asked the Lord for forgiveness and walked without complaining.
The biggest issue I faced was how I responded to the loss of income, independence, not being able to do all the simple things I used to do without getting tired.  My meds were changed many times and still they do slow me down.

Slowly, I learned to find joy in the simple things each day.  Rather than thinking of myself as a victim, I found that I was actually given a wonderful vacation.  All of my needs were being met.  I worked at seeing the glass half full rather than half empty.  It was not my own will power that brought me through though.  It was and is the grace of God.

 

 

The journey has been an eye opener into a life with this disease.  I am no longer in denial or wonderment.  I still believe God can heal in an instant or give me the grace to live with this ‘thorn in the flesh’.  I have learned to deal with photo sensitivity or commonly termed…sensitivity to bright lights.  I am not a good candidate to go to a disco!  The bright lights or flashing lights throws me into a seizure.  I watch black and white tv as color tv is difficult. 

It has been discovered that I have a venous angioma that has caused the seizures.  It will not kill me though.  I guess I have had it since before I was born.  It’s caused by not enough oxygen.  The doctors do not plan surgery or radiation. 

The plan of action is to treat the seizures with meds.  Unfortunately, the meds have many side effects.  It has been found that I can not take certain meds due to so many side effects.  At this moment I am being weaned off one med and beginning a new med.  I’m on a total of three meds for a few months.  I feel as though I am a bit drunk at times.

Yet, I have been given hope that my memory issues might get better once I am off the medicine that is causing  the issues.  God is the God of hope!

I have shared with my close friends the road I walk through.  I do not hide what is going on.  Also, I am determined to let it define me.

In life, we all have trials of some sort.  When I remember asking the Lord to heal me and make me normal, I now wonder what is normal.  Rather than spending a lot of time asking for healing these days, I spend my time thanking him for what I have been given.

In no way would I want the reader to think that I believe God gave me seizures.  He in fact allowed the seizures to teach me many things though.  Patience, humility, strength for each day, hope, faith in Christ, and the ability to laugh and live in much joy no matter the circumstances. 

Do I have bad days?  You betcha!  The dull headaches are no fun.  It is frustrating to have any difficulty.  Yet, at the end of the day I would rather have difficulty knowing the Lord than to have this same difficulty not knowing Him.


 

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