Quinn is difficult to wake up this morning. His eyes are still closed. I try to rouse him. I ask him what he wants for breakfast. “Four more days.” He says, “What do you mean, four more days? – You can’t have four days” I say teasingly, “You have to get to school!” He opens one eye and smiles and sings “Four more days until December!”
He is a counter. He has been for a long time. Always counting down the days until birthdays, visits for family or friends, holidays and other special days. He resets his mental clock every morning by calculating the days to … something of interest to him. He finds comfort in having a good grasp of time.
When I greet you for the day, you are in a quiet and pensive mood. I ask if you feel all right. “Do you have a headache.” “Is there pain.” “Is there anything I can do?” I grill you to the point of annoyance, trying to dig deeper as to way you are in a quiet mood. Eventually, maybe just to shut me up, you say, “I just want to take the day off.” Day off? I think to myself. What do you mean a day off – I am a little jealous that you can think about having a day off and I can’t. I ask you to explain. “I’m just tired, tired of being up, I just want a day off.” I ask if you would like me to call people who might visit today, and tell them know to let you be. You say no. I asked if you still wanted to visit another friend in the hospital, who is quite ill, like we had planned. You did.
I start to think about your reduced sense of self-sufficiency and the dignity that goes along with your brain injury. You have been so dependent on others for all your care over the last three months that I (and you) have come to accept this as still needed. But it’s not. How are you ever going to be able to do things for yourself, if I, or others, always interfere and do things for you? I make a silent deal with myself that I will assist you but not do things for you. Up to this point I think I have been enabling your dependency. It’s hard to step back and watch you struggle but it’s the necessary part of recovery. I need to back off.
I wondered if I tire you out. I know that I am a little pushy with you – encouraging you to take risks and push yourself a bit. But I have only done this with the blessing of the physio team. Maybe you see me as the bad guy. I ruminated on this for a few hours in the morning, then the answer came to me. At least, I think it is the answer. Today is the American Thanksgiving. Today is a football fan’s dream ‘day off’ I checked the TV guide – yes there are three games, back to back starting in the early afternoon. I hope I’m right, I guess we will see how you are tomorrow.
I hate to admit it, but I think the TV has been somewhat therapeutic for you. When you first came to Truro, you were very confused about the TV and would just give up watching it in disgust. Now you can turn it on, change channels and volume. You are channel surfing again. I had forgotten how much that activity drove me nuts. Still, I have to give the TV some credit but I think the real benefit was due to the fact that it is situated to your left. The TV has drawn your attention to your left. This was not the case in the QE2 where the TV was on your right in that room.
Another … of many benefits of moving to Truro.
Physio session went well. You did a big long sit by the edge of the bed, playing ball again. After this they get you in your wheel chair. You are puzzled about your wedding ring. “Why is my ring on this guy’s hand? I want to put it on my ring finger of MY left hand.”
You did so well catching the ball, even to and from the left side, but moments later you are confused about your own hand. It is really hard to understand how you are thinking.
The absence of left knowledge extends to many aspects of how you relate to the world, not just your body.
After the ball game, you are asked to remove your shirt by yourself. With a few false starts, you did it! I felt such a huge sense of accomplishment for you by just watching you do this. I felt the same way when I saw you pivot from your bed to a sitting position (with lots of help) almost two months ago.
The Barthal index is designed and used by the rehab (NSRC) for assessing patients. It’s important to time the intense therapy with the recovery. The Barthel index is an objective way to do this. There are two sections. The self care index measures nine main aspects of self care that range from eating and drinking to dressing and bathroom duties.
The mobility index assess much higher mobility functions that range from getting in and out of a chair to walking and climbing stairs or failing that – mastering some form of self propelling using a wheel chair. The score that is calculated is out of 100. You need 30/100 or better to get to NSRC. You are making major head way in some of these areas but not in others.
A spatial perception test was also done. It reveals some deficits both visually and perceptively. There are lots of things that can be done with this information. As I understand it, working on these areas will also enable you to extrapolate some things into attending to your left with mobility too. OT made suggestions that would enhance the skills in these areas; make designs to copy, drawing and copying pictures, checkers, word searches and other games and my personal favorite - the ‘wonky’ guy game. I think these would be great things for us to do with the children. They can serve two objectives – help you recover and help the kids be involved with your recovery. Not to mention … it could be rather fun!
I am very excited about the possibilities for these games.
Although the two assessments are done separately for different things, they both relate to the same body. Improving one skill will enhance to the others. I expect there may be a bit of a domino effect.
The physio team takes a lot of ribbing from you. Over the last few weeks you are gradually putting your verbal filters back together. But you still let them down from time to time. Some ribbing and teasing occurred part way through the physio session. You were asked to remove your shirt, which lead to some teasing and after a minute or so, you said “So you want me to take off this shirt?” Despite the conversational diversion, (that you created) you took the conversion back, to stay on task. Bravo!
I had a meeting with Dr. Feltmate and the social worker and floor nurse who schedules the staff for the floor (along with many other tasks I suspect). We discussed your care and what could be done differently that could help both you and the staff. I felt the meeting was productive and certainly allowed me to verbalize my stressors. Among many things, they were concerned that the journal was consuming me. I had to think about that – but I rejected the notion. If anything this medium is my release. The pressure valve.
By the end of the day, my head is swimming with feelings and memories and ideas that just knock about, trying to find a way out. By the time, I can sit down and process the thoughts, I feel ready to explode. Spitting them out onto the keyboard allows me to organize them and find some meaning.
If I don’t do this, I think I might explode. If I miss even one night of writing, I feel very stressed. After I vent my thoughts into words, my mind is empty and I can rest. It is as powerful as any drug and a much more insightful action.
After some reflection since the meeting, I realized that the journal is more then a piece of communication. My initial intent was to inspire you to do your best. But I can see that other benefits have come from it. I may be treating it as an obsession, but I feel I have to. My left brain’s best friend, science, has not been able to explain why this has happened to you – it explains how … but not why. In the face of a vacuum on the left side of my brain, my right side has taken over. If science can’t explain why, perhaps something else can – perhaps there is a spiritual reason that is filled with feeling.
After the family meeting, I leave you to your football games and go to retrieve the children. They didn’t want to leave their friends, so I thought I would take this opportunity to see Dad. This is the first time – in a long time that I am not by your side, or at work or with the children and today, I don’t have to get groceries or do other errands. I actually have about an hour of free time. I want to make the most of it… I go visit Dad.
For the last three months I have been rehearsing pep talks in my head to give to you when you need them. Pep talks to make you a survivor. Pep talks to enable me to survive. Pep talks for the children. My brain is stuck on pep talks. When Dad said to me “I have cancer.” I was speechless. “I know Dad” was all I could say. I didn’t have anything uplifting to say except “don’t try to tough out the pain Dad, ask for help.”
Denial is a powerful thing that can be an asset. For us, it has been an asset. Tara and Quinn proved that the first day. But denial can also hold you back. Dad’s pain is forcing him to not deny it anymore. How do you help someone abandon denial and reach for acceptance? Is this a pep talk that I will have to rehearse for Dad? For you?
Your visitors for the day: Marsha, Keith, Kevin, Carmen, Juanita, Wayne, Maddie and Farley, and later tonight Janice (PEI) will stop in for a short visit. That’s a pretty full day for a ‘day off.’
At piano lessons, as Quinn and I go through homework, I find a sheet that Quinn’s teacher handed out. It was about … spatial sense. It was presented in the guise of geometry but it was exactly what the OT was talking about with you. I am very excited now about the possibilities.
On the flip side of this sheet was ‘4 Secrets for Building Strong Ideas”. This had to be a sign. There is no other way to explain it - there are too many coincidences. The four secrets are:
1. Talk, talk, talk…
2. Make the ideas visual. Seeing ideas in your mind is very powerful.
3. Construct rules. Rules come from patterns.
4. Keep it simple! Keep it fun!
These principles are the principles that I use to journal and sort my feelings. I feel validated in my resolve to continue the journal. There are messages to be uncovered. And they reveal themselves through out this journey.
Tara pointed out as we ate dinner, ”It’s 29 days Mum, it’s 29 days until Christmas!”
I guess we have more then one counter in the family.