I have mentioned that our relationship was not well received by his family. I have heard everything from "get your head out of your ass, Mike. she's just using you" to "she must have some kind of Nightingale Complex" along with the every popular "you think you've met the bitch of the family? you haven't seen anything yet. just wait until something happens to him, I will make your life hell".... pleasant, right? That was just family. From friends it was "Mike, we are still working on getting you in to the Chelsea House".... every single time I saw them. No matter how many times Mike would tell everyone that living with me was what he wanted, they never stopped.
I mentioned the ESPN interview..... I'm not the only one who took note of what he said in his interview. A group of wonderful men whom Mike had played football with at Harvard had also seen the interview. John, Neal and Greg organized some fund raising and established a Trust for Mike's benefit. They paid for a generator to be installed at the house. That was a huge relief for me. Imagine a loss of power with just me to try to breathe for 2 people, it would have been a disaster. They paid for incidental expenses for Mike such as food gift cards and online gift cards for Mike to use for his entertainment. When things were getting worse and worse at the nursing home, they arranged for an independent agency to have an aide with him during the night. And they paid for this HUGE apple computer. Mike was infatuated with that computer. He was so excited to have it all set up. He went from a normal sized laptop to this screen large enough that you couldn't see him at all if you were standing at the foot of his bed. His eyesight wasn't the greatest, he was getting older after all..... and this larger screen made it so much easier for him to read and do things. He truly "lived" in his computer. It kept him connected to people, events, stimulating conversation (let's face it.... I wasn't that much of a challenge for him there) and movies. They even researched and arranged for setup of the latest in eyegaze technology for Mike to try. These 3 men were kind and helpful and resourceful. Mike and I both were so very grateful for everything they did.
But when it came to me..... just me..... there wasn't a lot of support. The nurses hired for my girls went above and beyond with keeping my girls taken care of. Eventually some of them even became nurses for Mike too when we had run out of options. Just like I tried to avoid being his nurse (I wasn't for the first year he lived here) because it was important to me to just be his girlfriend, I also didn't want the nurses for my girls to have to divide their attention away from my girls. Not only that but some of the organisms living in Mike's body were contagious and my girls would have been at risk of cross contamination. I even did his laundry separate. The laundry protocol was established after reading the notes from a speech given by one of the Trust guys who owns a company and gives lectures on laundry in facilities and such (and I just way simplified that...). A lot of people who I thought would have been supportive of me weren't. I had the feeling that they felt that I brought all this on myself and I should just deal with it. I never talked to them about my disappointment. I'm sure you get that, right? Sometimes it's just easier to smile and ignore the hurt than to risk confrontation.
The one person who turned out to be the biggest help for me with Mike was one of his law school buddies from OSU. Mike had put him in charge of a lot of things in his life and he trusted him. However, he was also the person Mike complained the most about. Have you ever been put on bedrest by a doctor and time seems to have no meaning anymore? Eventually everything seems to be exaggerated.... like you ask your spouse for something and waiting for them to do it can seem like an eternity. That's how it was for Mike when he needed something done by his friend. To Mike it seemed like he never did things, but to his friend it seemed like he was always doing things. Having not met him yet, I took on Mike's opinion of him which was that he was slow to respond to Mike's needs. As a consequence, we did not get along at all. It is safe to say that we barely tolerated one another. It wasn't until the first hospitalization that Mike had after moving in, that I realized who I can count on and it was this same friend who Mike complained constantly about, Steve. Steve is who would come to the hospital ..... every single time. Steve is who sat beside me when the doctor said that there was nothing further they would do for him. Steve is who mediated those conversations so I didn't need to talk and risk getting kicked out of the hospital. Steve is the only person who had literally kept Mike alive by using an ambu bag during an outing (before I met him), besides me. Steve carried him up steps when his legs stopped working. Steve handled all kinds of things with his Mother and brother. Eventually it came to where I was begging for someone to stay with Mike so that I could be with my daughter during an ICU stay. Steve came and stayed, he even stayed after I got home so that I could sleep. We went from barely tolerating one another to him giving me a hug in my kitchen telling me that I look exhausted (and trust me, he is not a touchy feely kind of guy) Mike continued to take issue with Steve on things that I didn't know anything about, but to me Steve proved himself to be willing to be there for us. No one wants to be around a dying man, Mike and I were lonely together. I was glad to have one person who would sit beside me in the hospital, someone who loved Mike just as much as I did.
I had to come back to this one and update it. I checked my emails and saw that I received one from Neal. He was letting me know that as per Mike's wishes the remaining funds from the Trust are now being used to help other Harvard athletes afflicted with ALS and other neurological diseases. He says that they are getting close to establishing the Mike Vollmer Fund at the Harvard Varsity Club using remaining funds of Mike's original Trust as seed money for the Harvard Varsity Club to continue raising funds to benefit those diagnosed. How wonderful to see the Trust to continue on to help other people. Mike would be so pleased.
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