Matt,  I can’t even comprehend life as it is now.   Just when I thought my health was starting to improve, I get hit with the double whammy.   Not only is the tumor back in my spine but I just found out I also have myasthenia gravis.  Yup, not only am I going to resume radiation but now I have to see a neurologist to fight a disease that has my body turning on itself.

I feel like my life has shrunk.  All my advocacy work is now on pause.  Even putting together your backpacks for the homeless leaves me exhausted.  

How I wish you were here.  We could commiserate about our back pain and how it’s affecting our lives.  I now get how easy it was for you to pop those pills allowing yourself a respite from the daily pain.  I fight the urge to follow in your footsteps as I now completely understand the path you walked.  

Chronic pain changes us.  It rules our daily lives. I feel like the only relief I get is from sleep and even that is a battle some nights.  I remember finding you sleeping upright on the couch.  Never understanding why you didn’t sleep in bed.  I bought you so many different pillows but you still preferred the couch.  Now I understand completely.  How I wish I had a better understanding of your pain and how easily it was for you to become addicted to the pills that were your only source of peace.  

I long for the days you were here and we were both healthy.  The days when laughter rather than pain and anxiety were the best part of life.  The days we took long walks on the beach sharing our hopes and dreams.  God, how I wish for a do over.  I took those days for granted never thinking there was a time limit to the life we shared.  

So now as I struggle with anxiety, pain and the uncertainty of my future I finally comprehend what you were living everyday.  God, I pray you are healed and free from this hell that I never could understand but now I live.  

I miss you now more than ever as I know you of all people get exactly what I’m feeling and I now understand more than ever why you needed to escape from life as you lived it.  
Forever in my heart.  Love Mom.