This is the longest stretch of time I have spent apart from you. We talk every night on the phone. Once to say good night to the children and the second time is to say good night to each other. The first few calls were hard. You were overwhelmed with sorrow.
You start thinking about how you see yourself in social situations.
I wonder what is your motivation was to run every day. I thought it was to replace the gambling. It wasn’t because smoking replaced it. What was your nudge to run? If I could understand if then maybe I could help you find a nudge to get you closer to fighting for your recovery. What is your nudge now?
Tuesday morning I had a different dream about you. I dreamt about bowling. I don’t know why bowling. I have never dreamed about bowling before. But the bowling was just the medium, not the message. The message was loud and clear. You were in my dream bowling. You were showing Tara and Quinn how you could bowl with a wheelchair. You propelled the chair with your right foot. You threw the ball with your right hand. You might have even got a fancy curve ball bowl throw into the game, just you’d done in the past when we went bowling.
I don’t know why this dream – maybe my subconscious is starting to accept the present reality and moving forward – reaching out to find good family activities to do together.
I met a client who had had a stroke 14 years ago. He said that the journey was long and solitary. He said that it’s a journey that comes from within. It is very hard to see the struggles from the outside.
Our nightly phone calls revealed all sorts of things:
You cried in OT. You were frustrated with a plan about what you will be able to do at home – you swore to vent your frustration – this offended the OT. You felt badly after.
You are getting to know the patient (I’ll call her J) who I had talked to on Monday. I hope her positive outlook is contagious. You had coffee with J today. She is scheduled for a surgery this week.
“I am feeling “a little down” You said. I think you seem a lot down – most of our conversation involved your tears. I know that depression is a lonely journey. I don’t know what to do to help you.
Worried that another stroke will be worse – you would want to die
If you can’t be strong for yourself – then be strong for us. This is a big hill and there is no end in sight but every hill ends and you can do it. “This will be the hardest thing that I’ve ever done. I don’t want to be a burden - This is what I need to focus on.”
Psychology consult in the works
Electric wheel chair assessment done for a study.
“Are you scared?” You ask. “Yes” I answer. “When you are scared then get up and take 29 steps. 29 steps around the house. That will help you find focus.” You advise me.
It was a tough phone call. It was clear that we were both limping along in our marathons. At least we had each other to pep-talk each other.
I had another dream about you and your disabilities. I couldn’t tell if it was a good dream or a bad dream. I don’t know if this is progress or regression.
This morning I tried to clean up the kitchen with only my right hand. It was hard and I didn't have to account for trying to balance while standing. I can see that there is going to be a big learning curve for you ... and for me to adjust.
In PT today you did extra leg exercises. You speak very highly of your PT and her student. It is a good relationship. Your PT has a motherly manner about her. I expect a lot of people with brain injury benefit from mothering.
Mothering is a delicate balance of nurturing but encouraging independence, cheerleading but teaching caution, giving goals but also rules to live by. Your PT does all this and more as she tries to guide you to your future. Whatever that may be.
Margaret, the retired minister from the church was in to visit you. The two of you share a conversation about God’s role in this journey. She suggested you talk to priest/clergy more frequently.
“I don’t think I cried today.” You said! The last two days have been hard to be away from you. You sounded so down over the phone. Tonight you sound much better.
You are really getting to know your OT. She is really very nice. I sensed that your OT was on your side from the start. It is a difficult job to try and bring down or change people’s expectations. This is what she has spent the last two weeks doing.
After our phone call I emailed the OT to make a few suggestions.
Martha helped me think of this idea last weekend. It seems a lot of what OT and PT do is 'training'. You are no stranger to this concept. The first 7 marathons that you ran, you trained on instinct and crazy ideas about diet and exercise. The last three marathons you changed your approach and trained by 'the book'. You had a schedule to train and you followed it. You stuck to it and it worked well for you.
If you had a training schedule, then you could use it as a guide. A training schedule in the form of a chart. A chart would serve several purposes. It will help fill the hours when you are not at appointments. It would help you be accountable and focused on the skills that you need to learn. If well designed, a chart could help you visually orient yourself to the left margin. Finally it would help you build your motor skills.
This system might help you keep on track. Small accomplishes each day will boost your is moral and help with you motivation to continue.
You are happy tonight. Two doctors talked to you about your stroke. After reviewing the CT scans, they could find no reason for your stroke. You ask the doctors the burning question that has plagued you for the last few months. “Will it be safe for me to run again?” The reply was “You can run if you want.”
You advise me tonight, that you want to do a stress test first. “Just to be sure.”
PT has been more of the same. Standing. Walking. Walking on the Kinetron. You like the Kinetron exercise because it strengthens both legs.
Tonight you went to the RT event on the fourth floor. Karaoke. Karaoke has been a part time passion for you over the years. Your love of music spills over when a microphone is placed in your hand. Mostly in key, you would belt out the words as sincerely as any professional musician would, to the song playing.
Songs from the seventies and eighties are your favorite. Tonight you sang “I can’t fight this feeling anymore”.
“Things are starting to look up” You say. “I want to do things right.”
The nurse manager called me today with a family meeting scheduled for Feb 15 @ 1:30. I want this meeting, but I am scared about what is going to come out of it. I keep telling myself that there is no point worrying about it until it happens. But it is hard.
You had a MRI today. It was loud inside the machine, but you were careful not to move. When you had the bone scan a few weeks ago, you feel that you annoyed the technician performing the test because you moved. She had to repeat it. You moved again. Today you announce proudly “I didn’t move at all.”
You started the day still feeling rather positive from the CT scan results that were reviewed with you the yesterday. You were feeling positive until the resident came to meet with you. She said that there would be many things that you would need a lot of help to do.
This brought you down again.
In the afternoon, Kerry’s friend, Paul Tingley, came to visit. He is the Para-Olympian, who won gold in sailing. He lives in Halifax. You had a great visit with him. He tried to persuade you to try sailing. You didn’t think you could do that. Instead he has challenged you to a ping pong game on the next visit!
Ping-pong. This is an indoor sport that you enjoy. When we moved into our house in 2005, the very first piece of furniture that you bought, for your man cave, was a ping-pong table. You designed and built paddle rack. You even had a hand at making paddles. You taught the children to play ping-pong. You tried to teach me, but between my bad eyes and terrible hand eye coordination, I was hopeless. My job was to retrieve the wild balls as they flew around the room.
You are looking forward to Paul’s next visit.
You had many visitors today. Recovering fellow stroke victim, Brewer and then later in the day, Harold. Fellow runners, Jody and Janice & Edwin. And finally Fran came back to Halifax on her way on to Newfoundland. You almost need a secretary to arrange your social engagements.
After dinner, I got Tara to call you, The two of you talk. Tara tells you all about her life over the last few days being careful not to miss the smallest detail. She tells you how much she loves math. “Ask me any times table question up to 12.” She said.
It was like the two of you were playing math catch over the phone. You threw out a few questions and she’d throw the answer right back. You get faster and so did she. Finally you ask 11x12 … she pauses and looks at me. I was only half listening to the conversation – at least that’s my defense. I reply 131. Tara says to you “Mummy says 131 but that doesn’t sound right.” That’s because it’s wrong.” You say. “It 132!” Tara glares at me. I just shrug my shoulder and say what I got used to saying over the years. “Well I guess you were right and I was wrong.” Tara tells you what I said. What ever you said made Tara smile.
As she hands the phone over to Quinn, she was all smiles. “Daddy is back.” She said. She listened to you talk to Quinn. From the one-word answers that Quinn was giving, we could both tell that you were teasing him. “Daddy is really back!” She repeats.
Quinn plays the piano for you over the phone. He is very proud of his accomplishment. So are you.
While tucking Tara and Quinn into bed. Tara is still smiles and repeats again as I kiss her good night, “Daddy is back”.
After the children are in bed, I call you back. You are in a good mood. You said something that I wanted to write down to be sure I got it right. You said “What has happened has lead to where I am now … and that’s a good place! I’m not smoking!”
Your positive mood falters a bit and you express a fear that I’ll leave you. “I am by your side now and forever.” I said. To this you quote a Dr. Seuss line from his book ‘Did I Ever Tell You How Lucky You Are?’ I used to say it when we were first married. “I’m so lucky ducky”. Actually I thought this was a direct quote, it turns out that I was wrong … again. But none the less, you quoted “I’m so lucky ducky’ back to me with your own twist of adding a “f word” adjective to the phrase.
Tara is right. You are back.