I first want to thank all of you for your words of encouragement yesterday. I know that you all know the feeling and that you go through what I go through, some of you in even worse situations. My heart breaks when I read your stories and I wish that you didn't have to go through these things. I wish that I was the only one with these struggles because then that would mean that all of your are free from this pain and grief.
For me, here is what happened:
Our day started off fine. Well, as fine as it can given that I have had this nagging feeling of hopelessness lately. After Thomas's breakdown when I was in Seattle, he just hasn't really recovered. It's not like he's gotten even more sick it's that it's just now chronically here.
All the time.
Then we got our mail and in it was a check for $1800. Good news, right? It was from Social Security and it came with no explanation. I didn't know what to do with it and what it was for. I spent a lot of time on the phone with Social Security and learned that the explanation letter hadn't been mailed yet but the lady on the phone helped me straighten out what the money was. It turns out it's his back pay. He was determined disabled in September (not December like I was told) and the $1800 covered the months since September through to February. If you're not interested in doing the math, what that adds up to is $300/month. I was a bit perplexed because $300 isn't enough for Thomas to live on. The lady then told me that his monthly payments will be $311. I accepted this information and filed it away in the back of my mind but my thought was,
"How will Thomas ever be able to live on his own with this kind of money? He doesn't make enough at work and $311 won't cover his costs of living. Not by a long shot."
A part of me broke down then because after all of his stability in the weeks before Seattle, after me thinking that we had made it, that we were the ones who were going to get stable and life was going to be good, I could see a life for Thomas independent of me. I could see the most beautiful future for him and I was so excited. I tried to keep the nagging feeling away that this illness would come back for him and I lived in a utopia I had no business living in. Who was I kidding at the time? There is no true stability. Not lasting stability anyway. And then Seattle happened and now this lack of money from Social Security came along and every dream I had for Thomas's future of independence, every hope, every everything wonderful and positive just evaporated. It was like that $1800 somehow broke open all of the protective walls I had put up always promising myself that independence for Thomas was just over that horizon. $1800 and the subsequent $300/month was just a drop in the bucket. What about rent? What about food? What is left to pay medical bills and medications? There is just NO WAY that he'll survive!
Then the time was approaching for Thomas to go to work that day. He woke up "feeling lost" and with a stomach ache and by the afternoon he was taking a lorazepam (he does this regularly now) and sitting there with me in the living room discussing with me how scared he was of the government agents that were going to show up at his work that night. Nothing I said could assuage his belief or his anxiety and I felt completely helpless. I HATE those government agents that reside in his delusional mind. I hate them for thinking that Thomas's political beliefs are wrong and that they want to imprison him for having them. I hate how they stalk him every time he's at work and I hate more than anything that there isn't a damn thing I can do about any of it.
Thomas went off to work terrified and after the whole thing with Social Security disability and the money, I just saw even more his/our future suffocated by this hideous illness.
Then Dan came home from work and I got dinner made and we sat down together and started talking about the issue with Social Security. I think I took one bite of my dinner and then I completely broke down. I cried like I cried after my dad died. Kleenex after Kleenex wiped my eyes and nose and went to the trash and I apologized to Dan for losing it but suddenly I was just SO ANGRY.
How will Thomas ever be independent?
What kind of life are Dan and I going to have with this adult child living in our home forever?
What happened to Dan and I's dream about retiring and driving down the coast with the top down on the car letting the wind rush through my hair and listening to the radio?
What about health insurance?
I have applied for Medicaid and heard nothing. Where were they?
Furthermore, what kind of coverage was Thomas going to get from them?
Will they cover his very expensive medications?
What if they don't?
What if Thomas has to change meds as a result and he goes back to being very sick?
Will Thomas ever be well?
Is this our life now?
How will we be able to afford to support Thomas because the truth of the matter is, we are already supporting him and if he isn't getting much money from Social Security and Medicaid turns into the nightmare I have heard about from everyone, how will we be able to afford medications and hospitalizations etc.?
The questions just flowed from me between sobs and none of them had an answer.
I, then, looked over at Dan, certain he'd be upset with me for being upset (he gets that way sometimes) but what I saw in his eyes was love and sympathy and he told me how horrible he felt for me. He told me that I deserved to break down and that I had a lot on my plate and he told me how sorry he was for me. Then it just came out of me, almost venomous, a bit shocking and probably totally unfair to even admit with Thomas in our lives. I said to Dan,
"Do you think you are the only one who is angry about our life? Do you think you are the only one who gets angry because our life will always be about Thomas? Do you know that I, too, get so mad sometimes because the dreams I had for us will never come to pass? Do you know that I get just as angry that every month we see more and more of our money go out of the house towards medical bills and medications etc.? Do you know that, like you, sometimes I just want to scream with rage that this is our life? Do you know how much I hate how unfair this illness is to Thomas and how it is just as unfair to us, just in a different way?"
I am crying right now as I type this.
It is so wrong to verbalize this. It is so wrong to feel this. It is so wrong for me to even make this public when possibly somewhere down the road Thomas will see this. The thing is, this is the truth. All of it. It doesn't take away from how much I love Thomas and that I will willingly and with great love ALWAYS take care of him in any way he needs but don't I have the right to lament our fate? ALL of our fates--Thomas, me and Dan.
My ENTIRE LIFE is about Thomas. I believe it always will be. However, just as Thomas's dreams died when he got sick, my dreams died too. My dreams for his future--he'll go into the Navy and see the world, he'll study something fun in college and have the real college experience complete with the parties and the bonfires and the friends and he'll marry and have kids. Not only that but my own dreams died too. Maybe I'll go back to school, maybe I'll do lots of volunteer work and make a difference somewhere, maybe I'll be a better wife, maybe Dan and I will travel everywhere and see the world. You name it, I dreamed it.
So, I had a rough day and evening. Grief overpowered me and won this round. I still feel it now as I type this. I took a day and didn't write in the hopes that I could stuff it all back down and move on but there is no stuffing anything. I'm full. I'm full to the brim and now I carry the weight with my arms and in a pack slung over my back. This illness, this evil, hateful schizophrenia claims so much of people's lives. It literally consumes the person with it and somehow manages to take down everyone else around the person with the illness.
I'm feeling exhausted. My heart is shattered for my boy. My grief is raw about how his life will be and it is just as raw for the life I thought I would have with Dan. There isn't a whole lot we can do about any of it except to feel the pain and work through it and I will, we will. But I can see this will never end. The pain, the questions, the fears, the grief, all of it. And yes, there will be good times too. There have been countless good times before this and there will be again but for now things are going to be rough for a while. At least we have each other as a family.
We'll get through this. I'm just having a hard time right now seeing my way past it.
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