Mr. Vollmer, the one I didn't meet

Mike spoke often of his father.  I didn't have the privilege of knowing him, he had passed away long before I came into the picture.  The few people who knew of my challenges with his family were all quick to say "I wish you would have met his father.  Mike is so much like him.".  He was a surgeon, that much I know, but I heard mostly about his gentle nature.  Mike was extremely loyal to his family and he was protective of his mother.  He knew the havoc his mother had made in our lives but he once said "she is my mother, she gave me life, I will give her as many chances as she needs".  He also would say "my father would want me to".  After his father passed away his mother had dated a man that Mike thought she might marry but when she was not in a relationship, Mike would step in to that role so to speak.  He took her to dinner, she would hang out with his friends with him, he doted on her.  He bought her a car and arranged for money for fuel when he was first placed in the nursing home so she would always have transportation to come see him.  She would ask him what he would like for her to bring him special to eat at holidays.  He would light up when she had made his childhood favorites.  When I say that Mike spoke often of his father I don't really mean telling me stories and sharing memories of him.  He spoke often of him by being like him.  "My father would want me to" had shaped his adulthood.
One day I had asked Mike what he did when I wasn't in the nursing home room with him.  He answered that he mostly slept.  I asked what he would dream about thinking that he would tell me that he would dream of things he used to be able to do, but once again he surprised me.  His answer was, "I talk to my dad.".  I then assumed that he was remembering conversations that he had with his father, but that wasn't it.  Mike said that he would have real time conversations with his dad while sleeping.  My very first thought was linked to what I had learned about hospice nursing, that often those who are ready to die will start having conversations with people who have died before them.  But with Mike, I think he was really transcendentally existing somewhere else.  I had seen this with him when watching others give him a bath that required moving him (moving him was so painful for him).  He gets a very distinct and distant gaze in his eyes.  I asked him once "where do you go when they are giving you a bath?".  He knew exactly what I meant and answered me with "I studied how to meditate to leave myself.".  Mike had disassociated himself with his body that had failed him.  So wouldn't you know it, fate brought him me, a very touchy massage therapist.  I think his body lasted as long as it did because with me he also learned to become whole again.  Massage became a daily part of his life. 

ALS wasn't the biggest hurdle

Mike had come to a place of peace and acceptance with his diagnosis when I met him.  I had not known him any other way so I didn't mourn what he lost.  That gave us an advantage in starting a relationship with what most people would call challenges.  If you are friends with Mike you have probably heard/read him referring to me as his angel.  I have heard other people adopting his thinking and telling me they think the same.  I know what he and others meant.... I really do.  But I have heard the same kind of thing said of me with regard to my girls and their disability.  My children are never a burden or a hardship or a challenge and neither was Mike.  People are formed by circumstances, to be sure, but it isn't WHO they are.  My girls are not Cerebral Palsy kids and Mike was not an ALS man.   Mike meant to say that he felt blessed and lucky to find someone who would love him and care for him in this late a stage of his disease process.  I suppose he was.  But, I'm not an angel, trust me on that.  Any time Mike would say that to me I would give him a kiss and say "hardly".  You may have noticed if you are Facebook friends with Mike that he rarely put anything about me in his posts.  There is a reason for that.  He was protective of me.  One day he posted that his girlfriend and his Mother were out to lunch and later that night that I had put ointment on his g-tube stoma like it was a normal thing to do on a Friday night.  It WAS a normal thing for me to do on any given night.  Taking care of people I love is what I love doing. 
There was a time when I thought that I could have a good relationship with his Mother but it was short lived.  His mother was afflicted with a disease that altered her personality.  Mike didn't warn me of this until he felt he needed to.  Some days she would greet me with a hug and say "how are you today, dear?" and other days it would be "you stupid girl, don't you know you're going to kill him?".  Mike had had years to get used to these huge swings in her behavior and he had the wonderful memories of her as his loving Mother.  I didn't.  I tried, but my relationship with his Mother continued to get worse.  Especially once he decided to move in with me.  It wasn't just her, it was whoever she influenced.  So whenever Mike would post anything on Facebook about me it was met with harsh comments from others and at times just blatant threats. 
This was what was the hardest to deal with with our relationship, not the ALS.  He did his best to protect me from all of it, but he just couldn't.  It made me extremely angry, it made me sad for him, it made me want to defend myself.  He would get mad at me if I tried to say anything to defend myself.  He knew what I didn't..... it would make it worse.
The worst of it came the day before he was to move in with me.  His Mother was at the nursing home and physically assaulted me (as much as an older lady can) and made quite a scene.  Mike had wanted me to call the police, but there was no way I would call the police on his mother!  I left the room.  I understand that she was struggling with her own issues and that Mike's disease played it's own toll on her.... I do.  But it didn't stop there.  She called the State and filed a complaint against me.  She now chose to jeopardize my nursing license, the State care my twins received, and Mike.  It took 6 months to get it all cleared up.  Luckily for me, I had had over 20 years of  different State and County organizations and countless physicians and other healthcare professionals to speak positively of me. I was glad that no charges were substantiated. It really made me think that I had made a mistake with asking him to move in with me.  That it was too much.  Not the caring for him, just all the hostility it brought. Still, it was the biggest hurdle Mike and I had as a couple.  I couldn't let that kind of threat into my life, not when it threatened my own children.  Once I set up limits and boundaries to where he could still see his Mother, who he loved very much, and I could still keep my family safe, it had obliterated any chance of peace. 
That additional stress on Mike was visible.  He knew how upset I would get, he knew how upset his family was and there wasn't a damn thing he could do to fix it.  So now he had two women in his life that he loved dearly that he had to deal with.  On a positive side, Mike and I learned how to fight with each other.  It is time in these blogs to show you something besides all the positive things.  That isn't real life for any couple.  I would stand by Mike's bed and we would argue on occasion.   One day he typed out that it isn't fair to him that I could get out 10 sentences to his one...... I answered him with "well, it's not so great standing here watching you yell at me in slow motion either!".  It made us laugh.  And we came up with a solution.... whenever one of us was mad I would go into another room and we would type out to each other whatever point we needed to make.  It was a technique that served us well.  And it always ended with one of us typing "ready for a kiss yet?".

Mike, he wasn't just a stellar athlete

Mike left out a lot of his achievements when he would tell me about himself.  Like the ESPN program, he told me later what else he had said that was left out of the program.  And when I was at the nursing home when he was watching the live stream of the ceremony where he was being inducted into the Hall of Fame at the Hill School, that's when I found out a lot more about his achievements.  He teared up listening to Harry speak on his behalf about what kind of athlete he was.  He was awarded with swimming events when he was young.  He was the Captain of his Hill School teams for Wrestling and Lacrosse.  He was chosen to be on the All Ivy League team  when he was playing football for Harvard.  It wasn't just that he was good at things like this, people loved him.  The relationships he formed with people throughout his entire life stayed with him for his entire life.  How many people can say that?  By contrast, I tried playing recreational softball and was picked on relentlessly for being a poor player.  I quit.  I tried playing volleyball in high school after being recruited by the coach.  The other girls on the team were cruel, I was miserable but I didn't quit because the coach was so encouraging and nice to me that I still enjoyed playing the game.  I imagine Mike as being to other people who my volleyball coach was to me.  Someone who through the sport was able to affect your life in other ways too.  Mike sent out a Christmas card one year retelling the story of a wonderful experience he received from the team he was coaching in football.  This was after his diagnosis.  The kids deferred their Christmas present money to donate to the ALSA to help find a cure for their friend, Coach V.
As awesome and inspiring as he was for all these people through sports, it isn't how I know him.  It was so strange for me after he died to read all these Facebook posts retelling their experiences with him.  Mike the athlete, the traveler, the sports fan, the attorney, the fun guy at the bar, the guy who was there for his friends......  the only way I knew Mike was from a hospital bed.  I never had him reach for my hand, I never heard his voice say he loved me, we never went on a date.  Actually, we did go on dates!  I came up with this idea where we would have a date night where when I showed up to the nursing home he would have typed out for me telling me where he was taking me and what we would be doing.  My favorite was he was picking me up in a vintage car and we were to go to the ballet and then finish the evening in a dark quiet corner of a jazz bar eating tapas.  Luckily, I had dressed appropriately. :)
I love hearing all the stories of who Mike was before ALS.  I love continuing friendships with the people in his life.  He made some incredible friendships and most of them have reached out to me in the kindest ways.  They have made themselves available to me to call or text to talk about Mike anytime I'm lonely and missing him.  Mike was a stellar athlete, but more than that, he was a stellar friend. 

Mike's ESPN interview

I was with Mike and his Mother when we watched the ESPN program, Real Sports with Bryant Gumble, where Mike had been interviewed.  During the interview Mike gave his views on the topic they were covering, head injury and football.  A lot of the studies were showing the connection between the number of head injuries, not just in football, and neurodegenerative diseases.  ALS is in that catagory but so is Parkinsons and others.  I remember two specific points Mike made during that interview.  One was that he didn't support the idea that the organization of football should be held financially responsible for the conditions related to football injuries.  This is where Mike and I didn't agree.... I believe that there is a connection and Mike didn't.  During the interview Mike answered as Mike does when asked about his thoughts on if the sport should be held accountable.  Mike didn't answer with the debated answer, he answered with the pragmatic answer.  He said (to the effect of) if the sports organizations were to be held financially accountable and it would be for all neurodegenerative conditions, the sport would soon be bankrupt.  As a side note to this, Mike and I both, when we saw a report where at least locally, they had restricted the number of hits children were allowed to take during practice were happy to see the change in regulation.  Some leagues said none until a certain age.  I am not giving specifics on purpose here because I don't want to research the accuracy since they aren't really my point.   The other point Mike made during that interview was that he would welcome the opportunity to live in a home setting.  I had been in the nursing home almost every day with him for I think 8 months before I saw that program.  It was plenty long enough to see first hand the hell that had become his life there.  So I sat down and wrote him a letter asking him to move in with me.  I did not take this lightly, trust me.  But his level of care was so similar to my girls, I was fortunate enough to know exactly what he would need and how to provide it.  I didn't want to ask him in person because I wanted to give him time to think about it without me standing in front of him.  He didn't address me with it for almost two weeks.  He had some concerns but he was excited at the idea.  I suggested he have friends come over to my place and check it out for him.  I made him a video of me walking around my house.  I gave him a detailed list of the supplies he would need and the vendors that I knew could supply them.  When he decided that he wanted to move in with me, we both just sat together and cried.  It was a huge sign of the trust and love that we had for each other.  As romantic as all that sounds.... reality is that these things take time.  We applied for the services he would need with the State and after multiple interviews and documentation it took almost an entire YEAR after we decided to live together before it could happen.  One year in the life of a person living with ALS where your days are numbered is excruciating.  Our decision didn't sit well with a lot of people in his life.... and mine.  But we knew that this was what we wanted.  It was me and him.  He didn't have to rely on anyone else anymore, we had each other. 

ALS means no body language

Developing a friendship with Mike was easy.  Spending time together, laughing over movies, getting to know each other, sharing meals..... all of that was easy.  What wasn't so easy.... trying to figure out if he was starting to feel what I was feeling.  I could tell by the way he looked at me that he enjoyed being with me.  I mentioned that I describe myself as shy, well, this shy girl asked him if he would like to kiss me!  I might as well have been standing there naked for how it made me feel to ask him.  After he kissed me I was a little more sure of how he might be feeling.  But there was still a part of me who thought.... maybe he just wanted to kiss a girl.  After all, the nursing home didn't give him that opportunity often. :)  The next time I visited him I ended up blurting out "I can't tell if you like me, like me.  Usually I go by the guys body language and I can't do that with you.  So, if you want me to know something....."  And again, here comes that big grin.... he types "I like you, like you, Ann".  From then on we were a team.  People at the nursing home started taking notice and out of sheer boredom started trying to mess with my head a bit.  Because I had to pass the nurses station to get to his room I was usually stopped by someone wanting to get gossip started or something.  I would tell Mike all about it and we would laugh.  The best story on that is that the lady who greets everyone and asks you to sign in started telling me how Mike has this friend who visits him all the time and do I know her.  I didn't.  It was the way she said it really that kind of got in my head, so I asked Mike.... "So, who's this Mary that visits you all the time?"  He grins and types "just a friend".  He knew that wouldn't satisfy me but he would say nothing else.  One day I walk in his room and there is this little old woman standing with him.  When she sees me come in the room she comes straight to me and hugs me and says "You must be Ann, I'm Mary!".  I looked at Mike and he is loving every minute of this.... the Mary that I was jealous over was almost 80 years old.  He loved that even in a nursing home and paralyzed, he still had game.  Mary was the biggest supporter of our relationship.  She is family to me now, Little Old Lady Mary.

Being his proxy

For Mike, losing his ability to articulate what he was thinking, feeling and needing was a huge source of frustration for him.  He loved it when people came to visit him but when it was more than a one on one visit, he would give up trying to be a part of the conversation.  He would tell me that by the time he typed something out everyone else would be on to a different topic.  I mentioned in a previous post that in order to use his ACD (augmentative communication device) he needed to be lined up to his computer.  When this connection was lost, he lost his voice.  The staff at the nursing home was grossly negligent with training his caregivers of this need.  It was necessary to move him to provide care, it was necessary to move his computer to provide care, but once the care was completed if they didn't get him lined back up to his computer he was mute.  Imagine being Mike for a minute, how do you tell someone that you can't communicate without communicating?  Some days he would spend hours just waiting for someone to come back into his room and hope that he could convey to them what he needed.  Now that you have an idea of what his days were like you can understand why he was so happy to see me.  :)  I could read his lips, I could understand when he needed lined up to his computer and eventually he started asking me to address his needs with the staff and sometimes visitors.  When people were there to talk with Mike, the natural behaviors were to lean some on his bed and to watch him type.  It was also natural to try to guess what he was typing and finish his sentences.  Not much aggravated him more than when people tried to guess his words.  I am no exception to the group of people who did those things.  I showed up one day to visit and he had a message all typed out for me to read (he knew I was coming and wanted to get it all prepared).  In Mike's ever diplomatic way, he addressed all the things that I had been doing that were bugging the crap out of him by way of asking me to help him tell other people what was bugging him.  Of course, I am reading his note and realize that 1) he was a non-confrontational kind of guy and 2) he really did want me to speak for him.  I tried it out on staff first.... that went about as well as expected.  But when he asked me to say something to a family member...... that was almost comically ineffective.  One of Mike's ways of dealing with people guessing what he was going to say while he was typing was to use that huge vocabulary of his and start using words that most people wouldn't even know what meant, let alone how to spell.  He would look up at me while they were reading what he really wrote and wink.   This was just the start of what all he would end up asking of me to say for him.  He trusted me.  He knew that I would do and say exactly what he needed me to even if I didn't agree with him.  Here's an example of that one..... during one of the hospital admissions some issues were just not getting resolved and we were both getting angry.  During one heated discussion with hospital personnel, Mike motioned to me to read his green screen (that's what I call it when he brings up the program to communicate.... because it was green).  He had typed out a phrase he wanted me to say.  I read it and shook my head no.... he intensified his gaze at me until I finally agreed to do what he asked.  This is what he wanted...... while we were really pissed off with the care he was getting and I was in no mood to play nice with them, he wanted me to say this phrase "so moving on from here, how can we meet our expectations of one another".  Damned if it didn't work.  The hospital administrative staff visibly backed off.  I mean, their posture changed, their breathing changed, then their words started changing.  Mike was a Master Communicator.  I was a worried stubborn girlfriend.  Just one more of the many things I learned from Mike.

The charm of Coach V

I mentioned previously that I had just started nursing school when Mike and I met.  I had been working as a massage therapist while keeping busy at my house with my girls.  The decision to start nursing school came with the law in the State of Ohio that allows me to be a paid provider for my girls if I am licensed and working for an agency.  My desire to become a nurse wasn't so much for the sake of nursing as it was a way for me to support our household.  All of my jobs have been dependent upon the health of my girls and the reliability of the nurses hired for their care.  Going back to school in an accelerated nursing program where the school was unfortunately not established enough to have a proven syllabus proved to be much more stressful than I was prepared for.  So lucky Mike, this was my state of mind when we met....... stressed.  Lucky me, Mike was living in the nursing home that was less than 3 miles from my school but 30 miles from my home.  With him living so close to school, I could spend a good deal of time with him between classes and after classes before going home.  I would sit with him and do my homework and he would listen to books or watch movies.  His Harvard education wasn't much help for my nursing classes except for philosophy.  And some of the legal/ethics classes he helped me with his law degree.  I mentioned too that he had to type out all his responses with his head.  I probably shouldn't have said "with his head" since that might make you picture him hitting the screen with his forehead or something....   He had a reflective dot taped to his forehead that lined up with a receiver that sat on the top of his computer. With that connection, he could use his head control to move a cursor around the screen.  He could put the cursor on a letter on the keyboard on the screen and hover over it until the letter was chosen.  As long as this explanation was...... it was about as long as it would have taken him to type out a couple of words.  Keep that in mind when I tell you that he said what he meant and he meant what he said.  Being on the receiving end of his effort made me appreciate what he had to say all the more.  So when he used his Harvard and OSU Law education to help me with my trade school classes.... he was doing me a huge favor. His intelligence was indisputable but his kindness to me was unmatched.  I had not met a man before who could with one sentence totally focus me and calm me.  An example...he would tell me things like....I have no doubt that you will do well, you are passionate, that will only enhance your efforts in studying....... Use all of your anxiety to remind yourself why you are doing this and use that energy as positives.   Seriously, what man talks like that?  Mike did.  He showed me what support and love was through his words.  I have heard Mike described with words like determined and tenacious and he wouldn't quit until he was doing something to the best of his ability.  He took his life lessons and shared them with me, making me a better person... a better nurse.  During my graduation ceremony he posted on Facebook how proud he was of me and all my efforts.  I was as proud of myself to have his praise as I was that diploma.  You'll see over and over how easy it was to fall in love with him.

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.

Our first encounter

This is my first post..... my first blog.  This is my way of writing memories of the life I shared with my boyfriend, Michael Wayne Vollmer and sharing it with others.  Mike and I met through Facebook.  I know that sounds a little funny, which is also why I like saying it that way.  We all know how Facebook works, right?  Well, my friend Jessika had come to the hospital to visit my daughter and after her visit she posted something on Facebook.  Mike just happened to be friends with Jessika and having seen her comment, he messaged me.  His message was typical Mike, he saw my little girl who has a trach tube and ventilator just like he did and he reached out to her mother.....me.  Our messages were through Facebook only for a few months.  Then November 2011 on Thanksgiving Day, I didn't have any plans and didn't want to spend it alone, so I messaged Mike and asked if I could visit with him.  He liked the idea and after telling me what food he would like to have, I headed up to the nursing home he was living in.  I was excited to meet him and was happy to be spending a holiday with someone but I couldn't figure out how he was going to eat the food he had asked me to bring.  One of the first of many things that I learned from Mike..... he figured out how to eat even when he could no longer breathe on his own.  I remember how tall he looked in that hospital bed, he was 6'2".  His smile was big and bright, his eyes were engaging.  He was a very handsome man, even in a hospital gown.  After a brief conversation, the remainder of our visit was spent watching a movie while I fed him spoonfuls of my home cooked Thanksgiving Dinner.  I wish I could remember what the movie was, but I don't.  Mike's life when I met him was lonely.  He had recently been placed in a nursing home and had very few visitors.  He had been diagnosed with ALS when he was 36 years old, he lived with this disease for 13 years.  I lived it with him the last 5 years.  He could no longer move his arms or legs but he could move his shoulders a little and his head and facial expressions were still working for him.  And he could still move his right index finger.  I smile when I type this..... I'll sneak in this one anecdote ..... I had come into Mike's room at the nursing home and was frustrated by something.  After hearing me out he typed (I'll explain that later) out instructions for me to get up in the bed with him and put his right hand on my knee.  After I followed his instructions, he had typed out for me to hear "there, there" while he moved his finger tapping on my knee.  It was exactly what I needed.  He always knew exactly what I needed.  He was exactly what I needed.