A little backstory

I realized that I made an assumption when writing this that people reading this would know me, would know Mike and would know what ALS was.  Let me fix that.  I'll start with ALS (amyotrophic lateral sclerosis) also known as Lou Gehrig's Disease.  If you want more than the most simple explanation, just Google it, but basically it is when the body can slowly no longer move muscle but yet it maintains all feeling.  So when Mike's toe would itch, he would feel it, but couldn't scratch it.  The diaphragm is a muscle that in order to breathe on your own must work.  When you look at the statistics for mortality for ALS, I believe most of the time they are referring to when the diaphragm stops working and you stop breathing and you then die.  Unless......... you decided, like Mike did, that you want to keep living and agree to have a permanent hole in your neck that will connect to a machine that will breathe for you.  It is a very, very difficult decision and one I am forever grateful that Mike made for himself.  I think that is partly why he reached out to me to begin with having seen that I had made the same decision for my daughter.  We both believed that this medical advancement was a remarkable gift of life and we lived it.  So that's ALS..... and this is who Mike was.... keep in mind that the effort that it took for him to communicate with me was difficult and time consuming.  Let me explain that one first, even with a hole in his throat, he could only speak to me audibly if he compromised the pressure in his lungs which is very uncomfortable.  He still chose to do it at first but when I could see how hard it was for him I asked if we could try lip reading.  It turned out I was pretty good at it and he was thrilled, as was I. Lip reading worked well for us for short instructions and requests for care he needed, but trying to share stories of our lives proved too difficult.  He would take to using his augmentative communication device (computer) and type out what he wanted to say to me using his head.  This is another advancement that is almost as lifesaving.... communication. As cerebral as Mike was, I can't imagine he would have the same passion for continuing life if he didn't have communication.  All of this was to explain why there will be some things I just don't know about him.  I don't know them because it wasn't important enough to him to use his precious energy to tell me.  When he did have visitors was when I would learn the most about him.  This is who Mike chose to tell me he was.  He was raised in Newark with his Mom and Dad and brother.  He was a rowdy child.  He had a lot of energy and had difficulty learning, even repeating the First grade.  He loved his mother's cooking.  He went to live at The Hill School when he was 13 years old.  While there he played lacrosse and was a wrestler.  He went to Harvard and majored in English and played football.  His position in football was defensive end (knowing very little about football myself, it took him awhile to explain what it was he did).  After graduation he went to Cairo Egypt and worked as a political journalist.  He returned to the States and went to OSU for law.  He worked as a lawyer until his diagnosis at age 36.  He was working for the ODJFS at the time he decided to become inactive.  He had lived in a couple other nursing homes but they were always for recovery.  Meeting him at this nursing home was when he thought this would be his life until he died.  He had some friends that helped him over the years and were still a big part of managing things for him.  He loved to travel and one of his favorite memories was being able to touch the stone in Jerusalem ( I would tell you more about that, but I didn't pay enough attention to details when he was telling me).  He was a devout Catholic.  He liked debates.  His favorite philosopher was Thomas.  He had an eclectic taste in music (Arabic being one of my least favorite).  The book he had read most often was Watership Down.  These are the things he chose to tell me...... here are the things he chose to show me.  He was quick to tears with books on tape or movies, he was infinitely patient with everyone, he was generous with sharing his attention to anyone involved in the conversation, he laughed with his eyes and as much education that he had excelled with, he was never condescending to anyone, he loved being unexpected.  This is turning out to be a lot longer than I intended and I haven't even come close to telling you what all I want you to know about Mike.  But I'll stop here for now with who he was when I met him.  Here is a little about me.... I am a mother of 3 children.  I was married for 4 years, 20 years ago.  My twin daughters were born with cerebral palsy and are dependent on all care, my son is a bright spot in our lives.... always.  When Mike met me, I was a massage therapist who had just decided to start nursing school.  I am quick to laugh, introspective and shy.  Mike would tell you that I am beautiful and "wicked smart" and kind and strong.  He is a smart man.  :)    I didn't go to college, just trade schools.  I have had a challenging life with raising my children alone and with all the medical complications my girls have to deal with.  So maybe that is enough about us for you to see why I always told Mike that without his ALS diagnosis we probably would have never met.  And Mike would tell me that without my daughters teaching me to love and accept people no matter what, my heart wouldn't have been open to loving someone like him.  Another memory to make me smile......Mike had typed out for me "I love you regardless" one day when I was probably asking him about cutting my hair and I responded with "You love me without regard?"  His face breaks out in this huge grin while he types "Not without, just less."  That became one of our running teases, he was funnier than I was.