Saturday April 10 – You Obviously Don’t Know Me Very Well

Today is the ‘Walk and Roll’, the March of Dimes and Stroke Club fund raiser. You are up early and want to get there on time. Just like the before-stroke days, you were always up early to prepare for race day. This morning, you keep snapping the whip to get the family moving to get out the door. You don’t want to be late.

We meet many other stroke survivors and thrivers there. Harold is there and he introduces you to other club members. Most of the members have heard about you through the grapevine. Each person has their own special story of overcoming their new circumstances. We shared stories with a few of the members. They are an inspiring bunch of people. Strokes, and I suspect any major disease that requires a lot of fortitude to overcome, produce special people. Inspiring people.

At the registration desk, you ask “Do we get a bib numbers like in races?” You are taking this Walk and Roll challenge seriously.

The walk started close to one end of the mall and went to the other end. You were determined to walk the entire distance. I was worried that you would overdo it. We moved along slowly with Quinn following behind with the wheelchair incase you needed it.

The pace was slow but steady. At one point one of the organizers suggested that you wheel it to the area of the food court and you could walk a little more there. You looked her in the eye and said, “You obviously don’t know me very well. I am walking this thing.”

Determination has always been your strong suit. You have never quit a marathon. I suspect there are some times when you thought about quitting but you didn’t – you kept going. Even though you knew that there would be no personal best at the end of the day, you weren’t about to get a personal worst either. You always kept going.

In the afternoon, the homecare coordinator came by to show us the service plan and explained a little more about the details of self managed homecare. There is a document that we have to write to apply for self-managed care. She filled in a few medical details and wants you to flesh out the document to explain your vision for the future and your goals from homecare.

In the document, the test score for your mini mental state evaluation is mentioned. It is a 30 point test that evaluates the cognitive status of a person. You scored 29 out of 30. The only thing you missed was the drawing exercise. That is because of your left neglect. To you, the score of 29 represents a perfect score. You are pleased.

Once you get the OK for the self managed care program, we must hire 1 to 2 people to work with you. Finding the right people will be half the battle. We need someone who is able to give you the motivation and emotional support that you need and yet be able to help restore some normalcy back into our family life.

A young friend came to visit you today. Hannah is a runner like her Mother. Karen is running in the Cabot Trail Relay for your team. Hannah is too young to do this yet, but you sense that one day she will love to run as you do. Hannah and her family have been very kind to our family since your marathon begun. You wanted to show her that you appreciated it and that you see a runner when you look at her.

You gave her the last copy of a poster that you got in Boston last year. A poster that has all the runners names on it with the phrase, ‘Greatness goes by many, many names’. You think that someday, Hannah will have her name on a poster.

Generally, you don’t see yourself easily falling back into the Dad role easily. I think you are … you just don’t see it most of the time. In the afternoon, Quinn called from a friend’s place. He had his bike and asked if he should come home now. Without a moment’s hesitation, you told him yes and proceeded to reviewed the rules of the road with him and added at the end. “Drive safely”. After you hung up, you smiled and proudly said to me, “Yah, I made a decision, I told him to come home … all by myself!” Your Dad role is coming along.

Time measurement is still a frustration for you. Tonight, you swore that you called out to me from your mancave while I was upstairs trying to get dinner underway. I couldn’t hear you. “How many times did you call?” I asked. “For at least half an hour!” you replied. You were convinced that I was ignoring you. When I didn’t respond, you decided to take things into your own hands and come up stairs by yourself. You ended up falling up the stairs. Actually, Quinn found you trying to crawl up the stairs.

Communication is a problem between your room and the rest of the house. We will have to think of some way to enable better communication between levels of the house.
In doors and out doors … maybe those walkie talkies that you got many years ago – I’ll bet they are in your mancave hidden in a drawer somewhere.

The same part of you that made you walk the length of the mall this morning also made you try to crawl up the stairs tonight. Your frustration mixed with your headstrong attitude is as much as an asset as it is a liability. I can see that your future recovery team will have to posses the special skill of allowing you to use your determination for good things not risky things.

The evening ended with you not wanting to eat dinner and wanting to smoke. You said that I make you want to smoke. As always, magical timing made the phone ring. It’s a call that I have to go into the hospital for. A dog hit by a car. I called Harold. “I’ll be right over. Harold came to visit you while I tended to the dog. He helped you past the urge to smoke.

Magical timing – the right person in the right place at the right time.

NOTE TO READERS: Chris and I are looking for the right person or people to hire for the self managed care program. If you know of someone who, you think, would like to work with Chris in his recovery, please let them know that we are looking for the right people to help him (Chris says he doesn’t want the ‘wrong people’). Some personal care experience would be helpful. We need someone who is optimistic and organized, flexible (with a schedule …that is), fairly strong, animal and children friendly, reliable, has a driver’s license and can drive a standard and most importantly, appreciates a great sense of humour.