Falling apart ...
I am not in a good place right now. Emotionally I am a wreck. And, sadly, it doesn't look like that will be changing any time soon.
I have been fighting MCS, with or without knowledge of what it was called, for somewhere around 10 years now. It has been difficult, but possible, because there were reasonable accommodations making "normal" life possible for me. Nowhere was that possibility more important to me than in my ability to go to church. Now, all of a sudden, I am faced with the heartbreaking realization that it is just out of control, that there is nothing more my congregation can do to make things safer for me. After 10 years of fighting, I am being forced to make the one change I knew was inevitable but refused to believe would ever happen to me: staying home from church, indefinitely. I spoke with my mother earlier in the week about it. She has always been my holdfast, my anchor to reality. When I get despairing about something, I could always count on her to show me a side of the issue I hadn't considered before and help me find another solution. I expected that to happen this time, wanted that to happen. NEEDED that to happen. I told her I had decided that I could no longer afford to try and attend church, that it was getting too hard and wasn't worth the three days of illness just to get 10 minutes of church in. She agreed with me, agreed that it was time to let it go. In essence, time to admit defeat. So now I feel like a failure, feel like I have failed at something that, for so many, is so easy and often taken for granted. But my despair goes deeper than that, a lot deeper. Because, for an autistic, it just isn't as simple as saying "I am not going to church from now on".
You see, we autistics are very set on routine. Life is unpredictable enough for us that we cling to whatever we can in order to feel grounded, to feel in control. And attending church is a routine that I have had for more than thirty years. I don't remember a time when I didn't wake up on Sunday morning and immediately start preparing to attend church. Even in high school, when I was so messed up emotionally that I had to be institutionalized, when I was so messed up that I couldn't feel the Spirit, let alone have a Testimony, Church was a constant that I clung to desperately. It was the one thing that kept me from drowning in the rest of life. It was the one thing, literally, that kept me alive. I don't know who I am without that part of my life. So for me, the idea that I may never be well enough to attend church again, the idea that this will be my life forever, is very frightening. Unsettling. As is the question in my mind of whether or not people will even miss me.
I have known people before who were homebound, spoke to people on my mission who weren't well enough to go to church. Often the first thing they would say is "But it's okay because the Priesthood brings me the Sacrament every week". Or, "At least I can hear the lessons still, they have found a way to pipe it in to my radio." In fact, in Berkeley I remember distinctly hearing people always be told to make sure and use the microphone so the people listening at home could hear what was being said. I guess I have taken it for granted that those things will be OFFERED to me. But so far it hasn't happened. And I am not sure I have the courage, after asking SO much of my Bishop and the members of my ward, to ask. I question whether I am even worth it to them.
I realize that much of the despair I am feeling is irrational. But taking away a set part of an autistic's routine is like asking someone to voluntarily cut off an arm or a leg. I have said before that I wouldn't be returning to church and have done so anyway, done so because I just couldn't BEAR to admit defeat, couldn't BEAR to break with routine.
I can't afford to do that this time. And I hate the very thought.
I have been fighting MCS, with or without knowledge of what it was called, for somewhere around 10 years now. It has been difficult, but possible, because there were reasonable accommodations making "normal" life possible for me. Nowhere was that possibility more important to me than in my ability to go to church. Now, all of a sudden, I am faced with the heartbreaking realization that it is just out of control, that there is nothing more my congregation can do to make things safer for me. After 10 years of fighting, I am being forced to make the one change I knew was inevitable but refused to believe would ever happen to me: staying home from church, indefinitely. I spoke with my mother earlier in the week about it. She has always been my holdfast, my anchor to reality. When I get despairing about something, I could always count on her to show me a side of the issue I hadn't considered before and help me find another solution. I expected that to happen this time, wanted that to happen. NEEDED that to happen. I told her I had decided that I could no longer afford to try and attend church, that it was getting too hard and wasn't worth the three days of illness just to get 10 minutes of church in. She agreed with me, agreed that it was time to let it go. In essence, time to admit defeat. So now I feel like a failure, feel like I have failed at something that, for so many, is so easy and often taken for granted. But my despair goes deeper than that, a lot deeper. Because, for an autistic, it just isn't as simple as saying "I am not going to church from now on".
You see, we autistics are very set on routine. Life is unpredictable enough for us that we cling to whatever we can in order to feel grounded, to feel in control. And attending church is a routine that I have had for more than thirty years. I don't remember a time when I didn't wake up on Sunday morning and immediately start preparing to attend church. Even in high school, when I was so messed up emotionally that I had to be institutionalized, when I was so messed up that I couldn't feel the Spirit, let alone have a Testimony, Church was a constant that I clung to desperately. It was the one thing that kept me from drowning in the rest of life. It was the one thing, literally, that kept me alive. I don't know who I am without that part of my life. So for me, the idea that I may never be well enough to attend church again, the idea that this will be my life forever, is very frightening. Unsettling. As is the question in my mind of whether or not people will even miss me.
I have known people before who were homebound, spoke to people on my mission who weren't well enough to go to church. Often the first thing they would say is "But it's okay because the Priesthood brings me the Sacrament every week". Or, "At least I can hear the lessons still, they have found a way to pipe it in to my radio." In fact, in Berkeley I remember distinctly hearing people always be told to make sure and use the microphone so the people listening at home could hear what was being said. I guess I have taken it for granted that those things will be OFFERED to me. But so far it hasn't happened. And I am not sure I have the courage, after asking SO much of my Bishop and the members of my ward, to ask. I question whether I am even worth it to them.
I realize that much of the despair I am feeling is irrational. But taking away a set part of an autistic's routine is like asking someone to voluntarily cut off an arm or a leg. I have said before that I wouldn't be returning to church and have done so anyway, done so because I just couldn't BEAR to admit defeat, couldn't BEAR to break with routine.
I can't afford to do that this time. And I hate the very thought.