My Leap List

Saturday, September 10, 2016

      28 years ago, John asked me if I would spend the rest of my life with him.  Today we celebrated that day by attending the NAMI walk.  The picture doesn't show how thrilled I was John was well enough to go with me.  This is a huge change for us, and I am thankful for the doctor and the experimental medicine that made today possible.
      John has always struggled with severe depression.  I convinced him to go to the doctor for help and that led to endless medications that ranged from useless to making him hallucinate and become psychotic.  He dealt with this for 26 years of our life together.  There were some dark moments when I doubted either of us would make it out alive, but he never gave up on trying.  
     In those years Mandy and Nick joined our small family and faced their own battles.  Mandy spent a year cutting her legs with a razor blade and I never knew anything.  She wore long pants and hid her pain masterfully.  She finally told me because she was taking a ballet class and knew I would see her scars with her costume.  When I saw the scars, I was horrified at how much pain my precious daughter had gone through.  Two of the scars were so large and ragged, I was surprised that she hadn't bled to death.  The guilt of not knowing and not helping her were difficult.
     Nick faced his own battles with anxiety that became so severe he started seeing ghosts in 5th grade.  His doctor told me that was his way of dealing with extreme anxiety.  Panic attacks became regular occurrences in his world.  He stopped sleeping.  His doctor told me that I should prepare myself for having him develop Agoraphobia, the fear of leaving the house.  His struggles have worsened as he got older, and medication and therapy haven't helped him very much.  He is trying to finish his senior year online so he can graduate, but even that is difficult for him to do.  I am thrilled when he goes to the store with me or for a walk, but it's hard to see him white knuckling his way through it.  He hides in his jacket and takes keys or something to endlessly rub to keep his anxiety in check for the few minutes we are away.  At night his anxiety gets the best of him and he hears and sees things that aren't there.  It's scary for both of us.  He handles it with grace.  He still smiles, tells me not to worry, and has the kindest spirit of anyone I know.
     John and Mandy have been able to find medication to help them the past two years.  Mandy was diagnosed with Chronic Fatigue Syndrome and Bipolar Disorder.  The medication they gave her turned her life around.  She is now a happy, well-adjusted college student.  She works and goes to school and is dedicated to making a difference for others who have struggled.  Many people who experience bipolar episodes don't take their medicine because they don't like the way it makes them feel.  I am forever grateful that Mandy is not that way.  When she feels an episode coming on, she is quick to make sure she takes her medicine to stave it off.
     After years of trying every medicine available and not seeing anything work, John was ready to give up on even trying.  His psychiatrist asked me to come to John's appointment.  He told me that he had a medicine that was being used off label, but had show promise in some of his patients that didn't respond to anything else.  He needed my permission to give it to John because he didn't think John was able to make that decision for himself.  It has dangerous side effects and can kill you unexpectedly.  I couldn't believe I was being asked to make that kind of decision.  I cried for a while, but then I told him I wanted John to have the treatment because he was going to kill himself if things didn't change.  The medicine has been a life saver for him, even though it is a horrible experience for him every time he takes it.  I could see the change immediately, but he couldn't see it for a few months.  When we returned a few weeks later, John told the doctor that it hadn't had any positive effects and the side effects were horrible.  I had to interrupt and tell the doctor how much it was helping.  Within a few more weeks, other people were noticing the changes in him, including the dentist and the people at the store.  John has been so brave to keep taking it even though he hates it.  The medicine never reacts the same way, so he never knows what to expect.  Sometimes he gets sick, hallucinates, hears sounds, feels like he is dying, gets horrible headaches, etc.  But he does it anyway because he knows it will help him when it is over.  When the side effects wear off, he spends the next day with a bad headache, but then he has 3-4 days like a normal person.  
     I am beyond grateful for the past two years with him.  I was beginning to lose hope.  I finally told God that I couldn't do it anymore and I was putting it in his hands with faith that all would be well.  It has been a powerful lesson for me on faith and love.  Now I am practicing faith again and placing Nick in God's hands.  My prayers may not be answered the way I want them to be, but I know all will be well.  In the meantime, I am surrounding him with love.    
     For some unknown reason, or for the reason that nothing in life is coincidental, an email came from NAMI.  I don't usually open emails from people I don't know, but I felt compelled to open it.  When I read about the walk, I knew I needed to be there.  There is so much stigma for so many people in the world for so many things, and it makes me sad that people judge my family by their struggles without knowing where we have been.  It makes me sad many turn to suicide because they can't talk about their pain or struggles without feeling more isolated or alone when they are judged.  I wanted to be there today to represent the people who don't have anyone to speak for them.  When John said he would go with me, I couldn't stop smiling.  He wouldn't have had the interest or stamina to walk with me, even a few months ago.  It was an amazing anniversary to be able to hold his hand and walk on a beautiful fall day for a cause that we know so well.  With God's grace all things are possible.

Note - My family said I could share their stories in hopes it helps someone else.  

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