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?".
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