I cannot believe I am still struggling with accepting the fact that I have Spasmodic Dysphonia. I was diagnosed over three years ago. I have had times when I've had the right attitude and I thought that it would get easier as time goes on. But it hasn't. It has gotten harder. I don't want this.
I've been avoiding other SD blogs. I've not gone to the SD message boards in I don't know how long. I ignore all the new topic alerts for Voice Matters. I delete the e-mails from the support group in Denver without reading them. I don't want this!
Why does it have to be such an inner fight? Why can't I just accept it and move on?
Somehow I've allowed a cynicism to develop that was not part of who I was before. I don't want to be like that. The person I was before is not the person I've allowed myself to become. My mind is filled with, "I used to..." and "I can't."
On top of that is my feelings of failure as a mother. I know that my children are their own people with minds and wills of their own. I know that you can lead a horse to water but you cannot make him drink. But... in my heart I still grieve. I still spend so much time rethinking every choice I made and wallowing in regret.
I thought I was a better person, a stronger person.
My life as it is currently is not what I want. It is not even remotely what I thought my life would be. My kids are not bad kids. They could certainly be far worse. My husband is a good man and we have a very good relationship, one we fought for. Last week I was complaining again about how invisible I am in certain situations and how hard it is to be among groups of people and yet totally alone. He told me later that he thought, "My God... I cannot die before her." It startled me because I don't know what I would do if he did. He's my life line. When we are in places where I can't be heard I just have to look into his eyes, say some of the words and then he talks for me. He tells me often that it makes him sad that I'm so sad. I get so wrapped up in what it is like for me that I don't even think about what it is like for my family. They've lost something too.
I think about myself far more than I think about anything or anyone else. I do. If it is not about how much I hate SD it is about other things like thinking about losing weight while eating cookies or staring at the beginnings of my turkey waddle neck and thinning hair.
I haven't even gone to church in weeks. I just sit there and think about how I can't even sing along or talk to anyone because the sanctuary is too loud. I listen to the teaching and think, "I already know this."
I've tried to make the shift to thinking about what I can do instead of what I can't do. There have been periods of time when I felt like I was still useful and had something to offer... I just haven't been able to sustain it.
I sometimes follow adoption blogs. There was a time when we thought we were going to adopt. It's been a hard thing for me to let go even though I rarely speak of it. We had our kids young and we are nearly done with the active part of parenting children. I thought I'd be involved in a ministry to children of some sort. I've been home alone during the day except during the summer for 18 months now. It sucks. What will it be like when our son leaves for college? Well... actually, our mornings with him are so rotten that I sometimes think it will be really nice. The thought of being home alone while my husband works for the next 25 years freaks me out.
Trisha is a former teacher with SD. She's currently taking sign language classes at a college. I thought about taking sign language before but it seemed pointless since no one I know can understand it. I've been thinking though that my family would probably pick up on it if I signed while saying what I was signing. I'm also thinking that maybe I could work with deaf children...
I've been thinking a lot. I'm going to get up, dust myself off and try again.