Life's Work

I was sitting at my neurologist's office this week waiting for my appointment and I picked up a copy of a magazine on the table.  It was some type of medical publication for the layman.  Michael J. Fox is on the cover.  Who doesn't like Michael J. Fox?  Everyone loves him so of course I wanted to see what the story was about knowing it would be something related to his fight against Parkinson's.

When I read magazines, I skim, fast.  I get the idea and I move on quickly.  I'm like most people in my generation, we want the main idea and we want it quickly.  We are the microwave generation.  One thing did catch my eye in the article...it was a quote that said "I had to give up my day job to do my life's work".

That is significant coming from someone like MJF.  His day job made him famous.  He is a terrific actor.  If he was on TV today, I would watch.  I think he would still be a very successful actor if he still wanted to do that.  He could probably pick his roles and name his price.  Not many people can do that.

He was diagnosed with Parkinson's at an unusually young age.  At some point he decided it would be his life's work to work for the cause of fighting Parkinson's rather than be a famous actor.  "Life's Work".  What does that mean?  Is it something we plan?  Is it something we want?  Is it something we must do out of duty?  Is it a calling?  Do we have control over our life's work?  What if we don't do our life's work?  What price do we pay for doing it?  For not doing it?  Those are the types of questions I want to ask.  Not that there are specific or correct answers.

About 2 weeks ago I was in Dallas at the University of Texas Southwest Medical School.  One of the top doctors in the nation in cervical spine neurosurgery is looking at me.  He tells me that he is looking over my records and MRI results and tells me not only do I have a cyst or tumor in my spinal cord (cervical syringomelia) but I also have another diagnosis that explains my more unusual symptoms.  I have myelomalacia.  If you look it up on the internet you are going to think I have a death sentence because it is a bad diagnosis.  However, I only have this condition in a very small area and it is not fatal for me.  Myelomalacia means that my spinal cord is softening or bleeding or there is a lack of blood supply to that area of my spinal cord.  A lot of people think something is wrong with my spine.  It is my spinal cord, connected to my brain.  And it is about 2 inches below my brain.  That's why it can't be fixed or it is extremely dangerous to try to fix anything in that area.  Myelomalacia can not be cured and there is no surgery that will correct it.  I will have to manage the symptoms with medicine the rest of my life.  It can get worse but it will never improve because it the damage is permanent.  It is a very rare diagnosis and we don't know why I have this condition.

The symptoms have increased over the past few months and I can not work full time anymore.  My body will not allow me.  My day used to be filled with A, B, C, D and E.  Now I can pick 2 of those things and consider my day done.  My day job is being compromised even though I don't want it to be.  Graciously, my employer is helping me through this difficult time.  I work from noon until 4:30 or so then I go home and take care of a few family things and go to bed.  Right now my body won't allow me to get up early enough to get to work by 8:00 and get going.  It is a slow process for me in the morning.  Thankfully, my children are old enough to take care of basic things on their own and my husband and parents have gone above and beyond to help me.  I also have friends that are helping me with things like carpooling, etc... Thankfully.

I have always taken pride in my ability and my work.  Not pride like "I'm the best" but satisfaction from working hard and doing a good job.  Now I can do about 1/2 of that.  Wait a minute.  That wasn't supposed to happen.  Once again, I am going through some major personal life changes.  God, what do you have in mind for me?  I think God wants me to re-evaluate my day job and let go.  Not to completely let go, but maybe there is something else I am supposed to be doing or focusing on.  Maybe it's not about me.  Or maybe God's purpose for me is completely different now.  I will do what he wants me to do.  No question.

What is ironic about all of this and my condition is that for many years I have had a fear of losing my abilities, my physical abilities and my mental abilities, and that is exactly what is happening.  I have some short term memory issues.  Like tonight I put toast in the toaster and put up the bread then turned around and got the bread to put in the toaster.  I had no memory of putting the toast in the toaster to begin with.  I have noticed these subtle changes for about 2 years but just attributed them to being a busy person.  I think it is really more than that.  It is my health interfering with my memory, slightly.  My physical symptoms are getting in the way of my normal routine, too.  Sometimes it feels like my arms are constricting or my hip bones are on fire.  You name it, it will hurt in someway at sometime.

I'm okay with it though. I'm okay with all of it.  In all things, give praise to the LORD.  "If that's what it takes to praise you, Jesus bring the rain".  My only hope is that this does not become a fatal condition for me and that I live to see my children grow up and become adults.  Other than that, I don't care if I can walk or talk. I also hope is that during this process my children and husband realize I am doing all I can for them and that I love them more than ever every day.

So my day job, yes I love it and I hope to keep working.  My life's work... to be determined.

1st Thessalonians 5:16-18

Rejoice always; pray without ceasing; in everything give thanks; for this is God's will for you in Christ Jesus.

Love you all.

Thanks for reading.

Heart in the Sand

I have been thinking about this blog for a long time.  I don't want it to come across as negative or sad because that is not my intent.  It is about faith and trust.  Real faith.  Real trust.  When the rubber hits the road.

It was mid January, just about 2 months ago.  I had found out I have this cyst in my spinal cord and I was scheduled for a spinal tap on Monday, January 16th.  It was Friday, the 13th actually, and I could not take Motrin like I was used to for my pain.  I had to switch to Tylenol due to my upcoming spinal tap.  I quickly found out that Tylenol did not help one bit.  By Friday on my way home from work I was in tears due to the pain.  I walked in my house at 4:30 and I was already bawling. I hurried to my room and locked the door and just cried and cried.  The kids hollered at me through the door and asked if I was okay and asked if they needed to call daddy.  

I was crying for my pain and for my future that I was not going to have.  This pain that sometimes feels like knives is not anything I had ever fathomed for my future.  I have plans.  You know?  I have a lot to do.  I am young.  We have 3 fifteen year olds and we are busy.  I want to get my doctorate some day.  I need to clean my house.  At that moment in the pain I basically considered my life over for all intent and purposes.  I wasn't ready for that.  That's what made me cry.  

Well who is ready for that... no one is ready for that.  In 2 days it will be one year since my cousin's husband died at age 40 of a sudden heart attack.  She hurried home when she realized something was wrong and had to administer CPR.  They have a 5 year old.  Eric wasn't ready for his life to be over.  No way.  He was an avid golfer, an astronomer, enjoyed a good beer and loved his family as much as anyone possibly could.  Lee Anne wasn't ready for his life to be over.  Neither of them had one moment's notice.  Lee Anne did not know their different account numbers, passwords... If Eric had had one day's notice he would have written that down for her.  He would have done a lot of things.  I am sure he had hopes and goals for his life, for Lee Anne, for Rustin.  

I've gotten my pain about 50% under control. I have about 50% of my life, my regular thing.  I am the lucky one.  I have some time to think about "what if?"  That is a gift.  To be really awake and really ponder life.  I have been reading a book Wolf Hall by Hilary Mantel.  It is about King Henry VIII and his advisors.  There is a religious advisor, the all powerful Cardinal Woolsey.  In the book there is a line "Woolsey can't imagine a world without Woolsey".  I think we can all relate to that.  Maybe we should think about it and appreciate it.  

Hopefully in a few weeks after I see my new doctor in Dallas the percentages of my life will improve.  I'm praying they will.  Either way, in the past few months I have come to accept a few things.  1.  Whether I am ready or not, I am ready.  My house may not be clean.  I may be young.  But I am good to go.  I know where I am headed.  2.  My future dreams may not come true, but my dreams are in front of me and I am blessed. 3.  We are like hearts in the sand.

What else is there in life?  Where the rubber meets the road, to be ready. To be thankful from the bottom of your heart and to say it was all good as it could be.