Tara found a newt on the way to school. She held it in her hands and blew on it to warm it up after the cold night air. She was determined to try to save it. She brought it into the school.
While walking to work – I thought about the chickens. I’m worried that I’m going to forget them one day and they will get sick and suffer. I think I have to start to choose what I can do and what I can’t. I know that I can’t continue to do it all – there is just not enough time in the day to do it all.
I have been feeling overwhelmed all weekend. I think it came to a peak with the knowledge that you were started on gabapentin. I foolishly did some research on gabapentin and thalamic pain. The possible diagnosis scares me. Your thalamic pain now can translate into chronic pain later … life long chronic pain that can cause depression and worse. This thought really scares me.
Dr Graham carefully told me that this was the first of many things that can be done. But common sense tells me that if thalamic pain was easy to treat, then there wouldn’t be a lot of ways to treat it because the first attempts at treatment would work. I sense that the thalamic pain is going to be a long, unpleasant journey … a huge ugly hill that winds it’s path so you never know just how much further the hill actually is.
I called Dr. Feltmate’s office this morning. I was put right through to her! (I’m not used to this treatment). I share with her some of my concerns and she addresses them with careful thought and kindness. I think we are on the same page in terms of how to help you the most. She says that you are not ready for rehab yet. That’s what we want to work on. She suggests that the urological workup be done in Truro. Yes! Since I never even met the urologist in Halifax, I have no particular interest in maintaining a relationship with him and his very efficient receptionist. A local consult is much better. Probably faster too. If we are to get rid of the urinary tract infections, timely is important.
We talk a little about depression that often comes with a brain injury. I express my concern that this possibility be addressed early on. Many of the drugs for depression take some time to reach their potential and some don’t work well – so there is a certain amount of trail and error with treatment in order to find the right drug(s) for you.
I don’t believe that you are depressed now. You are sad but not depressed. You are just starting to come to terms with the magnitude of the situation. You are still taking inventory of your losses. Dr. Feltmate feels it’s important that we identify depression before it interferes with your desire to work at getting better.
I like Dr. Feltmate’s approach – I will meet her tomorrow at the hospital.
Today, I met a lady at work, Carolyn, who had an aneurysm 12 years ago. She walks with a cane. Her bled was on her left side so her right side is weak. She walks with a cane. She had to learn how to talk again but she can talk and she can talk quite well. She can do lots of things including being a great cook, her partner says. She is a lovely, upbeat person who clearly wants to be alive and enjoys it. She has been going to the stroke club in Truro for seven years, and speaks highly of the support she gets there. This is the same club that Harold talked to me about.
I want desperately to look back at this time in our lives and think of it as the ‘Year of the Stroke’ and the beginning of the rest of your life. I want to see an outcome like the many people that I have got to know about who had major brain injuries – Hollis, Harold, Carolyn, Marc and many others. This is such a tough time – I would give anything to know the last chapter – to know there is a happy ending.
I want to think positive but that crystal ball in my head is screwing me up – My mind flashes to frightening scenes that make me think that this is the year that you started to die – not the year you choose to live.
I have decided that I will keep pictures of all the brain injury people I know in my mind. Happy, smiling people enjoying life and finding beauty and understanding in each day. These pictures, for me, will be part of the last chapter of this journey.
I visited you after work, Laura and David are with you. You are putting on a weary sense of humour. After they leave, I asked how your day was. You told me about a good visit with Marianne. You say, “Today was good, better then yesterday – not as depressing.”
When I pick up Tara and Quinn at gymnastics, Tara was doing her homework – regular homework and extra homework! She loves school. She was busy writing a journal about herself. It was four pages long so far. The last two pages were about you and your stroke.
I asked her how the newt did at school. “Did he get homework too?” I asked with a smile. “No, he died. We buried him at lunchtime.” She replied solemnly.
It’s clear to me that Tara has it figured out. She is going to save whom she can. She couldn’t save the newt – but she is going to do her best to save you. I need to follow her lead. I need to do what I can for our family but stop trying to do it all.
Terry visited you today. She wrote:
Hi Gwen, I saw Chris this afternoon around 12:30 ish. I got dressed in robes and gloves and slippers until they finish ruling out Mr. Sa, and he knew me right away. He looks great, sounds great and had a sip of Coke without too much of a problem while I was there. He was upset about the fact that he won't be ready to take someone's place if needed in the Relay next year but I assured him that there will be a lot of back up people running for him and to not worry about that. He seems close to the surface about this and maybe this is normal or maybe he is just having an emotional day. But he was happy to see me and I him (I left the floor with my booties on I was so happy to see him). He said he looks forward to seeing me and Chris again as soon as my Chris gets over his cold/cough whatever the high school is circulating this week. Talk soon, Terry