How time flies...reliving the memories

It's been an emotional week.  This time of year is always a little tough for the Hoffmans.  Add a little sickness and it just makes the emotions intensify.

Monday, marked Tom's 43rd birthday.  We had a great day.  We took Tom out to lunch and enjoyed Toy Story 3 at the $1.50 theater.  (Good things come to those who wait!)

But, Monday also marked the 7th anniversary of Tom's Dystonia.  It seems impossible that Tom has been battling this disorder for SEVEN YEARS.  But, we've felt every bit of those years.  It's very strange to have your life turned upside down by illness.  I remember that day so vividly.  Because it was Tom's birthday, we had planned a fun day out.  First, we had breakfast at IHOP.  Then, we headed to Gentry Farms to pick out pumpkins and explore their beautiful (and educational!) farm.  Then, Tom and the kids enjoyed a car show while I went to a music rehearsal.  We all met back at our home (wow- two drivers!) and baked a cake for Tom.  As the finishing touches were going on the cake, Tom lost control of his neck muscles.  He began shaking his head violently as if he were strongly disagreeing with someone.  Then, the movements spread to his arms.  I remember him calling me into the room and I thought he was playing some kind of strange joke and grabbed his arm to make him stop.  But, I couldn't make it stop and saw the fear in his eyes.  I remember spending 8 hours in the ER that night.  I remember being told that it wasn't a seizure and it wasn't a stroke, so we could go home and see our doctor on Monday.  I remember leaving for Washington, D.C. instead of going to the doctor.  They symptoms had stopped afterall, so why postpone Tom's work trip?  The kids and I tagged along because I had never been to D.C. .  I remember spending an entire day at a walk-in clinic and pharmacy after 4-year-old Charissa became sick in the night.  Then I remember Tom driving us down the road and noticing his fingers twitching involuntarily.  I remember the symptoms increasing rapidly and by the time we arrived back in Nashville, Tom's walking was reduced to a slow, strange gait.  His speech was altered, his jaw opened and closed involuntarily.  His neck shook, his arms shook.  We were once again terrified and the doctors had no answers.  We were told to go home and get our affairs in order because whatever it was was progressing quickly.  If it was an undetected brain tumor, Tom's life might end quickly.  I remember looking at my swollen, 6-month-pregnant belly and crying out of fear and anger, wondering how I was going to raise three children on my own.  I remember driving to the grocery store and parking on the side of the road to cry and yes, scream at God for being such a bad parent.  I remember hearing His voice and choosing never to doubt Him again.

I remember Tom not dying.  How strange is that?  I remember realizing that nothing was changing.  I remember going for second, third, fourth opinions and being told that it was all in Tom's head.  That this disorder was nothing more than a reaction to stress in Tom's life.  I remember driving Tom to "biofeedback sessions" where doctors tried to determine what stressor was causing this "somatization disorder".  I remember no stressors being found.

I remember the anti-anxiety meds that Tom was prescribed.  I remember his emotionless state and endless bowls of cocoa krispies.  I have no idea what was in those drugs that made my husband crave those but he did and he gained a lot of weight due to multiple bowls a day.  I remember never leaving home for fear that Tom was too emotionally unstable to be alone with our children.  I remember realizing that Tom wouldn't be going back to work.  I remember wondering how I was going to make a living.

After staying home, feeling lonely and frustrated for many weeks, Tom was invited to a prayer meeting.  This Bible Study met early in the morning and was attended by mostly retired men.  For weeks, Tom attended and quietly participated.  Finally, Tom had the courage to tell the group about his "anxiety disorder" and the ordeal we'd been through and asked for prayer.  After the prayer meeting, a retired neurologist approached Tom and told him that he didn't believe the diagnosis was correct.  He told him he had observed the symptoms of "blepharospasm" which was a form of Dystonia.  He also made some calls and got Tom an appointment at Vanderbilt.

I remember being told that I could go into labor at any time and immediately began calculating when I would need to have the baby in order to drive Tom to the long anticipated Neurologist appointment.  When I knew I was cutting it close, I drank half a bottle of castor oil and went into labor.  I remember that no one was available to drive us to the hospital.  So, I drove us.  If we'd managed the past three months, surely we could get to the hospital...even in labor!  Audrey was born...quickly and struggled to breathe.  She entered the world blue and grasping her unbilical cord like a paratrooper.  Her lungs were still full of fluid and it took effort to get her to cry.  We were terrified.  Our wonderful OB/GYN didn't exactly treat our baby gently.  But, we're thankful that her knowledge and skill saved our littlest one from long-term complications.  We're even more thankful to God that He spared her despite the fact that her fast delivery was MY doing.  (I have always struggled to leave the timing up to God.  Lesson learned.)

I remember driving home from the hospital the evening before Tom's appointment.  I remember walking into the hospital with Tom and our sweet newborn and meeting our new Neurologist.  I remember the emotion of learning that we had been misled for months and endured so many emotions and side effects of medication for nothing.  We had a diagnosis: Generalized Dystonia.  Basically, this meant that my husband had involuntary movements all over his body.  No known cause, no known cure.  Usually, Dystonia was either genetic (Tom tested negative), was the result of an injury/trauma (not the case for Tom) or was the result of some kind of poisoning.  After much research, we learned that Tom's sensitivity to Monosodium Glutamate (MSG) may have been the culprit.  After years of unexplained migraine headaches, we learned to avoid the substance.  But what we didn't know was that it is contained in 57 ingredients and isn't included in ingredient lists if in those ingredients.  The day that Dystonia started, Tom had unknowingly ingested at least 3 forms of MSG and had a migraine follow.  An often unknown fact about Monosodium Glutamate is that it is a neurotoxin.  Every time a person eats MSG, brain cells die.  The only viable explanation for Tom's Dystonia was the possibility of brain damage: damage to his basal ganglia because of long-term exposure to MSG.  Months of experimental drugs and procedures followed with no success.  This was our new life.

I think that losing his ability to drive was most difficult for Tom.  He still has a license and in a pinch can drive short distances.  But, because Dystonia causes involuntary movements (including eyelid closure), it's not in anyone's best interest for Tom to drive down the interstate at 70mph on a regular basis.  Tom's car sat in our garage for something like 6 months.  Charissa began showing signs of anxiety, so we decided to go to family counseling.  As it turns out, the counselor felt the new display of emotions was typical of a 4-year-old.  To our surprise, the counselor observed that Tom and I were the ones in need of counseling.  It was this counselor who helped us finally sell the car.  He said we were living every day as if it were Saturday and we were waiting for Monday to come.  And, given the information we had, Monday wasn't coming.  He helped me come to terms with leaving my stay-at-home-mom status (still painful even now) and accept getting a job.  We were forced to make decisions we never would have made outside of our unique circumstances.  We don't exactly fit in anywhere now and can anticipate that won't change.  It's still not easy, but God has given us strength as we've faced each step.

So, here we are seven years later and I'm still trying to figure out what life is going to look life for us.  Right now, it's far too stressful. That is certain.  I'm thankful for employment, but I work too much and spend too much time stressed out.  We are praying about how we might be able to change our situation to reduce stress and spend more time as a family, building memories and letting go of the past.  It's not easy.  I don't know if it ever will be.  I guess that's what happens when a loved one gets sick and never gets well.  Don't get me wrong.  I thank God every day that Tom is alive.  He's my best friend and I am so grateful that I haven't lost him.  I don't even mind finding dirty socks on the bedroom floor.  They make me smile now.  But, I still feel that I grieve his diagnosis every day. 

We are finally getting excited about considering ways to regain our lives.  We don't want to live with an illness.  We want to live life...and joyfully...to the fullest.  So, seven years after Tom's Dystonia arrived, we're feeling hopeful.  Year eight just may be our year of new beginnings.  We'll keep you posted and appreciate your prayers.