Friday, September 12, 2014

No! You Don't Get To Be Sad!!

Well...(deep breath)...yesterday was Thomas's therapy session.

And I got called in which I thought I wanted because I wanted to bring a couple of things up for Thomas to work on in therapy. So, the session begins with Dr. K. saying,

"Thomas, you're doing really good. I think you're doing really good so I have a new homework assignment for you. Since you're doing good we have to get to work on some things so we can further your progress while we're able."

I stopped breathing and thought to myself,

"He thinks Thomas is doing good. Do I say anything? What could the homework be? Can my new Thomas who is struggling handle this new assignment?"

Since Thomas struggles with social anxiety the new plan is to have Thomas ask someone for directions or for the time when he is in a store. Okay...easy enough I guess.

Then the subject of medications came up. Thomas said,

"We decided that I should start the Cymbalta."

"We?" said the good doctor.

"Well, we is Dr. N. and I."

I was glad I was knocked out of that "we" because I have made a concerted effort lately to stay out of changes in meds. So with that announcement Dr. K. started to write down all of the meds Thomas is on.

Latuda. Check.
Clozaril. Check.
Buspar. Check.
Wellbutrin. Check
Cymbalta. Check.
Ativan. Check.

Then came the pause. Oh how I hated this pause. I knew it could mean so many things. Then Dr. K. took a deep breath, released it, and said,

"Wow, you sure are on a cocktail aren't you?"

This was said with a sadness so deep that my own heart was torn from my chest. I really hate that. I hate when the professional gets sad. I hate it because I look to them for the light in the situation and to reassure me that things aren't as grave as I think they are. Alas, that was not to be so my heart sank in my chest as I realized that things with Thomas are serious.

Noooooo!!!!! Please no. Please let me stay in my denial. Please.


Then we talked a little more and I brought up the ADL (activities of daily living) questionnaire we had filled out this week. I related this story to Dr. K:

The other day Thomas was getting his breakfast together. Mind you, he has a very set way of doing this. Very set. Like, he doesn't deviate from it at all. So I asked him if he wanted an English muffin instead. He said he did but he didn't know how to work the toaster oven. So I taught him and left him to make his muffin. Then he came to me and said that he thought it was done. I told him to reach in very carefully and touch the muffin and see if it's toasted enough for his liking. He did and decided it was ready. So I came in and I asked him if he wanted butter on it. He did but "he didn't know how to do it right." So I told him I would butter one half and show him how and then he could do the other. I left him to that and came back to find his half barely buttered and he was taking it to his tray.

"Why didn't you butter it more?" I asked.

"It's fine." he said.

So I left him with his 1/4 buttered muffin and walked away. I felt bad for him. He was so caught up in making sure that he did it right and he felt like he didn't so he just gave up and decided to eat it pretty much plain.

Then Dr. K. asked him why he didn't butter his own muffin all the way?

Thomas said, "because I'm afraid I can't do it right."

To which, Dr. K. asked, "what would happen if it wasn't exactly right?"

To which Thomas gave this some thought and then said, "It wouldn't taste good."

So Dr. K. asked, "so you'd rather eat it plain then try to get it buttered?"

Thomas quietly said, "yes".

Then it came again. The questions.

"So you have a lot of anxiety about preparing your English muffin?"


"What is your level, 1 - 10 (10 being the most anxious you can be) of anxiety about 'getting it right'?"

"A 6."

"Really?" asked Dr. K.

Really? I thought to myself. A 6? Oh God that is so high. Poor kid. A 6? Why so high?

Dr. K. tried to work with this and in the end came out learning from both Thomas and I that he has a lot of things like this about daily living that cause him this level of anxiety (a good argument for why he can't live on his own right now).

Then Dr. K. leaned back in his chair. He took a breath. He put his hands behind his head and sighed. He then turned to Thomas and peered at him squinty-eyed.

"Thomas, I am not mad at you. Not at all. Do you understand that?"


"I have seen you for years now Thomas, why haven't your told me, your esteemed therapist, the one who is supposed to help you, that you struggle like this?"

Here is where I came to Thomas's rescue and I said,

"Don't you see? He lives with these things. This is his life. He sees nothing wrong with him because this is his normal. There is no reason to report it because there is nothing wrong in his mind."

Dr. K. was visibly sad. Could it have been his doctor's ego? Maybe. But I don't think so. I think he felt genuine sadness for Thomas that he lives in such an anxiety-riddled world. Then the wave of sadness washed over me again. Dr. K. is sad. The PROFESSIONAL is sad which means...

This is not good. Thomas is not well. There are bigger problems here then we thought.

Then I got mad. He's the professional here. He's seen many people come through his office with myriad issues. He's treated people for years. He should be experienced with all of this. Hardened to it in my opinion.

"No! You don't get to be sad!!" I thought.

And this morning, as I write this I think that too. I say it as a mom who wants so desperately for her son to be okay. I say it as a mom who wants desperately to be told that things aren't as bad as she thinks they are. I write it as a mom who sat in her son's therapist's office and HE was sad and what she needed most in that moment was a glimmer of hope that things weren't so bad, that there was a plan to fix this, THAT THOMAS WOULD BE OK! No! You don't get to be sad!!!

Ugh. He does, I do, all of us with loved ones with schizophrenia do. We all do. But somewhere, somehow, from someone, we need hope. We need the problems to be easy to solve. We don't need the cocktail of 6(!!) medications being swallowed every day by our loved ones.

We need hope.

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