So it's a sunny October Monday morning. Today is "Columbus Day" which we still celebrate and honor here in the United States of America. History can be very interesting as it is written by the victors. When I was in Paris we went to the "Hôtel national des Invalides" which is the location of Napoleon's tomb and contains the museum of the history of France's military. Their history of the defeat at Normandy was interesting as it was described slightly different than I learned in my American history class at "Baptist Academy". At the museum in France reference was made that Charles De Gaulle successfully defeated Germany with the help of the U.S. Military. I thought we played a bigger role than that. So it is with Christopher Columbus. The story we were taught is quite different from the reality. I read a book called "Lies My Teacher Told Me. Everything Your American History Textbook Got Wrong." (Click link for full PDF of the book.) It's quite interesting.
So it's been almost a week since by last blog. Our schedule changed last Wednesday from the plans I wrote about. We had breakfast at my favorite place "The Windmill" in Holland. We didn't make it to the outlet mall because I just didn't feel like going. Sometimes I make plans in the morning and by mid-day those plans change. That makes it difficult for Drew. When I tell him what our plans are his brain "commits" to that. Therefore many times I have to put disclaimers in my conversations with him. I have say things like "...maybe we can do 'such and such' today...but don't hold me to it as I might change my mind." I have to be the one to make the plans and ideas for things to do as he doesn't have the capacity to do so. One of the problems with HD is that a person has apathy. Outsiders will think the person is lazy but the reality is just that their brain is "unwired" for any feelings of emotion or interest in things. So I lead the way.
I had a great visit with a friend of mine this past weekend. I met him about 20 years ago when he was a guest at the bed and breakfast I used to own. We became friends quite quickly. A few years ago he moved to the San Francisco Bay Area. Drew and I went to visit him this last February. His family lives outside of Chicago so he flew in to O'Hare and spent time with them and then came with his sister and her fiancé to Saugatuck for a visit with us. It was a great visit. He even worked at the store with me on Saturday. We hope to go visit him in California again this next spring. I use the word "hope" because that is what I have to say to Drew when he asks me if we are going to "Cali" this spring. I reply "I hope to." I tell him it depends on how our finances are, otherwise his brain will be set on that happening and it will be difficult for him to handle the change.
I have the next two days off work. This week it's my turn for a haircut...so back to Holland we go on Wednesday. The temperatures are supposed to be back into the 80's so we will have one more short summer experience. - Jimmy
Monday, October 8, 2018
Wednesday, October 3, 2018
I Will Be "OK"
"Existential Nihilism" argues that life is without objective meaning, purpose, or intrinsic value. - Wikipedia
This is how I have been feeling lately. I've been struggling with what life is. What MY life is. I used to feel like I had purpose. I had a plan. I knew where I was going. Or at least I thought I did. I had someone that was going there with me. Then he died. Almost nine years ago now. I should move on. But I can't. I'm stuck. I feel as if I have no future to look forward to. Part of that is because I am in a relationship with someone that literally has no future to look forward to. He has Huntington's Disease (HD). This disease WILL get progressively worse and the only thing we can do is try to stave off the effects as much as possible for as long as possible. But one day his body will give in. He will succumb to the disease and I will be left with grief yet again.
This was my choice. When Drew and I were reacquainted eight years ago I pursued dating him. A couple months into the "relationship" he advised me he was going to be tested for HD. Not knowing exactly what that was I "googled" it. The information I found out was that a person usually lives about 20 years after being diagnosed. That seemed like a long time for me and I agreed to continue the relationship with him. My thought was that something could happen to me physically (such as a stroke) and the tables would turn and he could end up having to care for me. So I felt there was a risk for both of us. There are no guarantees to anything in life. I also asked myself the question: "Would I have pursued a relationship with Ray if I new after 21 years he would die suddenly?" - and the response to my own question was a definite "yes." So after Drew tested positive for HD I assured him I still wanted to pursue a relationship with him. So, yes...I was "warned" of the consequences of having someone so close to my heart literally deteriorate in front of me. Some may say it's my own fault, I knew what would happen...and that is true. I don't regret my decision - he is one of the easiest person's to get along with. He's kind, compassionate, will do ANYTHING for me, and we have MANY of the same interests such as food, television shows, and music. Being in the relationship with him is no "work" whatsoever. We click very well together. It's the future I'm afraid of.
When I look at my future I sometimes think of it without him in it because I know that very likely at one point he will pass well before I will. That scares me. I'm afraid to get too close to him. I find myself kind of being "stand offish" emotionally. I'm afraid to get too attached...even though we've been together almost eight years now. Also, having taken on the role of more of a caregiver now I feel odd if I make any sexual/romantic advances...which I no longer do. It almost feels as if I am abusing my role as caregiver, when in reality I know that is farthest from the truth. But the mind plays games. What "role" am I playing today? So in a way I just don't plan for the future. I literally take it day by day. Friends ask me what I will do when he needs full time care. I just say I don't want to talk about it. We'll address that when (and hopefully "if") that day comes. When I come home from work each day I look at the house to see if windows are open...if I can see the tv on...is there any sign of life? I have that on my mind because I came home to find Ray dead (my partner of 21 years who died of a heart attack after complications from colon cancer surgery). I know that reality all too well.
So where does that leave me today? I question life. I question the reality of life after death. I live each day. But that's really all I do. I just "live" each day. I don't thrive to live anymore. Maybe that's all life is really about, just "living" each day. Trying to get through each day. Who says it has to be more than that? From the outside I am sure those around me have absolutely no idea how I feel. They see me working, shopping, going out to eat, making wonderful dinners, and even organizing going to events around town (sometimes). To me that is just a part of getting through each day. I have no zest or excitement for life. I just do what I have to do. Part of it may be that I constantly worry about Drew. I worry that he may fall down the stairs. I worry he may choke on his food. I worry he may fall and hit his head (I saw a cut on his forehead one day when I came home from work and asked him about it. He said he knew nothing about it. Last week I heard a thud from the bedroom. I called into the room asking him what happened...he said he fell out of bed. What?! I journal these things so I can update his doctors on what is going on.)
So, today I go back to living for today. I made an appointment for Drew's haircut today at 1:00. We plan to have brunch before that at DeBoer's in Holland. We'll shop at Aldi and maybe I will feel like going to the outlet mall in Byron Center. I'll have a good day today. I'll make a nice dinner for us. We'll do our nightly routine of watching ABC Nightly News with David Muir. Watch some "Big Bang Theory" episodes. I just won't be doing any planning for my future yet again today.
I will be "OK." - Jimmy
This is how I have been feeling lately. I've been struggling with what life is. What MY life is. I used to feel like I had purpose. I had a plan. I knew where I was going. Or at least I thought I did. I had someone that was going there with me. Then he died. Almost nine years ago now. I should move on. But I can't. I'm stuck. I feel as if I have no future to look forward to. Part of that is because I am in a relationship with someone that literally has no future to look forward to. He has Huntington's Disease (HD). This disease WILL get progressively worse and the only thing we can do is try to stave off the effects as much as possible for as long as possible. But one day his body will give in. He will succumb to the disease and I will be left with grief yet again.
This was my choice. When Drew and I were reacquainted eight years ago I pursued dating him. A couple months into the "relationship" he advised me he was going to be tested for HD. Not knowing exactly what that was I "googled" it. The information I found out was that a person usually lives about 20 years after being diagnosed. That seemed like a long time for me and I agreed to continue the relationship with him. My thought was that something could happen to me physically (such as a stroke) and the tables would turn and he could end up having to care for me. So I felt there was a risk for both of us. There are no guarantees to anything in life. I also asked myself the question: "Would I have pursued a relationship with Ray if I new after 21 years he would die suddenly?" - and the response to my own question was a definite "yes." So after Drew tested positive for HD I assured him I still wanted to pursue a relationship with him. So, yes...I was "warned" of the consequences of having someone so close to my heart literally deteriorate in front of me. Some may say it's my own fault, I knew what would happen...and that is true. I don't regret my decision - he is one of the easiest person's to get along with. He's kind, compassionate, will do ANYTHING for me, and we have MANY of the same interests such as food, television shows, and music. Being in the relationship with him is no "work" whatsoever. We click very well together. It's the future I'm afraid of.
When I look at my future I sometimes think of it without him in it because I know that very likely at one point he will pass well before I will. That scares me. I'm afraid to get too close to him. I find myself kind of being "stand offish" emotionally. I'm afraid to get too attached...even though we've been together almost eight years now. Also, having taken on the role of more of a caregiver now I feel odd if I make any sexual/romantic advances...which I no longer do. It almost feels as if I am abusing my role as caregiver, when in reality I know that is farthest from the truth. But the mind plays games. What "role" am I playing today? So in a way I just don't plan for the future. I literally take it day by day. Friends ask me what I will do when he needs full time care. I just say I don't want to talk about it. We'll address that when (and hopefully "if") that day comes. When I come home from work each day I look at the house to see if windows are open...if I can see the tv on...is there any sign of life? I have that on my mind because I came home to find Ray dead (my partner of 21 years who died of a heart attack after complications from colon cancer surgery). I know that reality all too well.
So where does that leave me today? I question life. I question the reality of life after death. I live each day. But that's really all I do. I just "live" each day. I don't thrive to live anymore. Maybe that's all life is really about, just "living" each day. Trying to get through each day. Who says it has to be more than that? From the outside I am sure those around me have absolutely no idea how I feel. They see me working, shopping, going out to eat, making wonderful dinners, and even organizing going to events around town (sometimes). To me that is just a part of getting through each day. I have no zest or excitement for life. I just do what I have to do. Part of it may be that I constantly worry about Drew. I worry that he may fall down the stairs. I worry he may choke on his food. I worry he may fall and hit his head (I saw a cut on his forehead one day when I came home from work and asked him about it. He said he knew nothing about it. Last week I heard a thud from the bedroom. I called into the room asking him what happened...he said he fell out of bed. What?! I journal these things so I can update his doctors on what is going on.)
So, today I go back to living for today. I made an appointment for Drew's haircut today at 1:00. We plan to have brunch before that at DeBoer's in Holland. We'll shop at Aldi and maybe I will feel like going to the outlet mall in Byron Center. I'll have a good day today. I'll make a nice dinner for us. We'll do our nightly routine of watching ABC Nightly News with David Muir. Watch some "Big Bang Theory" episodes. I just won't be doing any planning for my future yet again today.
I will be "OK." - Jimmy
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