As I predicted, I didn’t sleep well. That’s the first night I sleep poorly in a long time. I think that not talking to you last night had something to do with it. To remedy this I called you first thing in the morning.
You are down again. You missed our nightly phone call too. “I can’t drive – it was the one thing I could do – Not being able to do one simple thing makes me more useless and hate myself more.”
You felt that you got ‘in trouble’ yesterday. You sounded like a child telling me that the teacher doesn’t like you. On a couple of occasions apparently you used ‘inappropriate language’. At least that’s what you were told. You feel hurt that you might have offended some of the staff.
My first instinct is anger. What do they expect? In the last two weeks, they have told you all the things you can’t do and expect you, a brain injured patient, to take the news graciously? They are professional health care workers – suck it up – you are an amateur patient. I wanted to scream. Then I collect my thoughts. I reminded you about your days at the Truro hospital when your verbal filter was really broken. I reminded you how the staff patiently and kindly made you stop the talk.
Fran and you even worked out a code word that helped remind you that you were conversing up the wrong tree. ‘Peppermint.’ It is a very appropriate word for you. You hate peppermint. The smell of it makes you nauseated. Just the sound of the word is almost as bad. It was and is a very good reminder … a good warning.
I explain to you what I understand about the loss of social filters being a common occurrence with an injured brain. The staff at the NSRC are merely trying to re-teach you appropriate social boundaries. Boundaries that you had before your stroke. They are not mad at you. They are trying to make you better. You felt much better hearing this explanation.
You did a car transfer yesterday! It went well. You felt it was fairly easy. You did it with a male OT. You put your arm around his neck and hugged him. Then you shifted yourself to the car seat and back to your chair. The OT has part of a car in their office. It’s there to specifically teach people this skill. I haven’t seen it but it’s a small car and the OT said that it is similar to the Honda Fit. If you can transfer in it – then you can transfer to our car.
I am so pleased. I hope that this might mean we could take you out of the hospital for a while and do something fun with the children. Every weekend in a hospital has given us all ‘cabin fever’. Later, a car transfer could mean weekend’s home.
I felt better talking to you and both of us felt like we could take on our days. I go off to work and you are off to your PT session.
I called you again at bedtime. You sounded a little better. You had two people come to see you today. You thought that they were psychiatrists and/or social workers! I’m impressed. The resident that I talked to yesterday got the wheels turning quickly. You had a good chat with them. You thought that they might contact me tomorrow to fill in some information.
You had a great visit from one of your admirers from afar. Lynne. Lynne ran in the same race as you did on your stroke day. It was her first race (I think). She was glad to have completed 10 km. She has been following your story ever since. It sounds like you hit it off with her. Full of good positive energy, she is just what you needed this week to help you get past the painful parts of the week. She liked the note that I wrote for you on your white board. “If you get stuck, take 29 steps and start again”. She said that she’d be back to visit.
Marsha visited as well. We are so lucky to have so many positive people around us.
It seems that the timing of the events for this marathon have been very well executed. Every time there has been a bad spot in the marathon, there is always a friend who helps cheer us past it. We have been blessed.
The stinging words ‘inappropriate language’ has been knocking about in your brain since yesterday. You talk about it with your PT student. “She’s very sweet. She gave me good advise.” You said. The transfer class that you volunteered for went well.
You think that the BM streak may have ended. You aren’t sure. Maybe it just not that exciting any more. “I’m done with streaks for now … unless I can run again. For now, my job is being a husband and a father.
You ask me who I vent to about my worries. “The journal and anyone who wants to listen.” Although, I’m trying to rein it in now – the negativity that oozes out with my venting is not doing me any good. I want to stay positive. “You can vent to me.” You said. “That’s part of my job as a husband.” I would but I don’t want to over load you at this time. That’s were this journal is so helpful.
“I want to do many thing with you guys but I may have to forfeit some things.” You said. “I might have …” You pause, not able to find the right word and not wanting to say ‘disabled’. “Limitations?” I suggested. “Yes, limitations. I might have some limitations.” You said. I accept that that might be the case for now, but I’m not going to let you crawl into a hole somewhere and not do things with the family. I remind you that what ever we do as a family, you are part of the experience as far as the children are concerned.
Another tooth is lost in the Cashen Clan. Tara’s this time. She lost it at school yesterday, brought it home today and put it under her pillow. Quinn asks “Tell me the truth … Are you the tooth fairy?” You would have had a clever answer. All I could come up with was “I don’t know Quinny.” He seemed to accept that for now.
You think you have limitations … well I think I have limitations. In fact – having limitations is part of the human condition. The trick is to decide which to accept and which you deny.