Its that time of year again, when we get those letters in the cards, telling us of a family’s past year - how Johnny finished med school, and Suzy just produced a beautiful grandchild.
I can’t help but feel glum when I read them. I’m of course happy for my friends’ and family’s good fortune… but am left feeling sidelined and sad.
Yes, I am really proud and happy for my nephews’, nieces’, and cousins’ accomplishments.
We live in a different world now. To me, everyone functioning well seems so far away and so far ahead of us. They seem like movie stars or something.
I agree. I felt glum and angry at the other patient forum the other day, I probably will never go back.
The recovered people have all left leaving the psychotic trolls to ruin it all, at least for me.
We have one friend who gets a family Holiday letter from one of their relatives…and it is pure joy and laughter to read their blatantly honest and painful stumbles from the entire year. From beginning to end, it is written with the intention to let everyone know life is never easy, in fact…sometimes it is plain miserable! She does, however, highlight that it is all about perspective, and she makes you laugh at the humor she finds in all of it.
So with that in mind, and although I know you all know you are not alone in these different, yet similar lives we all live…two weeks ago my son was completely manic, not sleeping, and the strange day started with him singing the theme from the Lion King at the top of his lungs (insert that familiar tune we all know to the lyrics that I am still not certain what the words actually are). It started in the days prior as he was amping up into “something”…and at 3am, I finally told him to he had to STOP…“Can’t you hear that drum beat?” he said to me. To which I replied…“Ummmm, no…no…I can’t.” (my son frequently says he watches movies, attends concerts, writes and plays music…all in his mind).
He was beside himself from the time I woke up, pacing, turning circles, repeated movements (he is not willing to get his medications right…we are working on that without a lot of success), so I told him we would go to town (which is a 70 mile one way drive) and run errands so he could burn some of that energy out. Most of the time, he just sits in the car…not that day!
The short version of this story is when we were in the grocery store, he decides he wants to drive the cart. He is a bit reckless, I am a bit nervous, but somewhere in this journey I have become a bit numb to what historically used to unsettle me. He starts winding the grocery cart around him in the aisle. I am trying to fill it with my finds like a basketball player with a moving target (yes, I missed…multiple times…and he never noticed). I realize this is not going well…probably not a good idea to take him to town, pay for less than what we came there for and make it out of there quick.We leave the store, and he discovers the yellow parking lines, and for whatever reason, he felt the need to step on everyone of them before we left, so I sat in my car while he moved through the entire parking lot. He finally gets in the car, and by this time, he cannot complete a sentence, answer a question…can barely decipher what I am asking him. I take a deep sigh of relief thinking, “phwew!” We survived. I can go home…our safe zone. When we are just about to leave the city he says, “I thought we were going to a movie?” I reluctantly ask in a grimmace, “…which movie would you like to see?” I really wanted to find a reason not to go, but he hadn’t had any interest in a movie in 6 months…maybe longer…and he used to love movies.
He could barely make the decision…in fact…we had to get to the theater to have him collect himself enough to decide…and decided on “Dr. Strange”. I found so much humor in that…and it was in 3-D no less!
I sat there quietly in the movie…and he didn’t move from beginning to end. When the movie was over, he was completely lost in his mind. I couldn’t pull a word out of him other than his reply to…how did you like the movie?
In a slow and occupied manner…he said “It was good,”
My time with him is often silly, odd…oftentimes heartbreaking, occasionally scary…and sometimes it is also good. All I know is we are no where near where we need to be, I have accepted this process, and my dented canned goods make me laugh each time I try to get the can opener around them.
Darn it if I couldn’t make a basket with his moving target!
Blessings to all of you!
Vallpen, I’m with you. I could go into how my letter would start but it would sound like a pity party. I have a hard enough time keeping images of our family updated on Facebook. My husband looks like he has aged 20 years and he probably thinks the same about me.
Yeah, it’s a bit hard. My son’s friends are all married now but a few. One is getting married in January but I don’t think he’ll go. It’s so hard for me to watch their lives progress so normally and they’re so happy, all the while we’re struggling with the basics with our kids like eating, medicine, hygiene. I’m happy for those that are able to live good, full lives, but it’s very hard at the same time. On the other hand, my very good friend lost her 29 year old son in April to a drug overdose (not schizophrenic), so that balances out my sadness a bit. She’s really struggling to get through Christmas.
My Christmas Letter to Family and Friends will contain this paragraph:
'This is the second year in a row that Sam (our 27year old son) has managed to stay out of hospital. He still has no insight into his illness (schizophrenia ) but the three of us (my husband + Sam + me) are managing to have a stable and relatively happy life living together like three fairly eccentric adults. We’ve also found through our own research that sarcosine and pure fish oil help him enjoy life a lot more. We don’t expect anything anymore of the invisible mental health system (except medication) : the caseworker doesn’t come near us but his fortnightly injection has kept him stable.
We are incredibly proud of our brave and resilient son who has been through hell and has survived. We are also immensely grateful to our extended family for their loving support.
Success in a family can be measured in many different ways.
You rock Allison! Great letter
absolutely perfect, alison. 
Alison, do you mind telling me what type of medicines he is getting?
He’s on a fortnightly injection of 50mg Risperdal Consta. He won’t take orals.
xxx
Alison
Do you administer those at home? How did you get him to agree to take shots?
He’s on a CTO so he’s required by law to have the injection. A nurse at the Community Health Centre gives it to him.
Thank you. This forum is where I come when I feel alone. And then I don’t anymore.