ON Friday, there was a package when I got to work. It was from a marvelous lady, Gloria. Gloria is over eighty years old and has a healthy quest for knowledge. I met her on my first day back to work after your stroke. She is an inspiration. Last winter, she wanted to learn more about how the brain works. She read many books about various aspects of the brain and it’s functions and abilities.
She sent me two books that she found good: ‘The Healing Power of Neurofeedback’ by Stephen Larsen and ‘A Symphony in the Brain’ by Jim Robbins. With the holiday season and you coming home, I can’t imagine where I’ll find the time to read them. At this point, any insights I can develop to help you will be worth it.
While at work, I felt the excitement of my youth … only six more hours, four, three, two hours. The day got really busy and the time flew by. I made it to the hospital just in time to get your dressed and packed for the wheel chair bus. Darlene, the bus driver is great. You asked her if we could to the A&W drive-thru. She said “No”, with a smile.
Once you were home, life got busy with children and cuddle times, reading and games. There was a little chaos at the beginning, sorting out your medications and the electrical lift and how to operate it. But we got it all down to a science. The lift is a three-person affair. Quinn does the controls to get it into position, we clip you into it then Tara does the lifting with the controls and I provide the muscle to guide and Quinn is on left arm and foot patrol. It goes very smoothly and we can make transitions happen pretty quickly. Bed to chair, chair to sofa, sofa to commode etc. As you promised, you didn’t insist that we take you to a different floor. You stayed in the family room, which was the center of activity.
That night, Tara, Quinn and I were ‘fighting’ over who got to sleep with you. I rigged up an air mattress on the sofa beside the hospital bed. Once I raised up your bed to the same level, it seemed like one large king sized bed. I won the fight. But Quinn, who has been my constant companion in bed since this all began, wanted to sleep with us. I made a spot on the floor beside your bed. Normally, he would sleep between us in our bed but he would fall between the crack in the middle with this arrangement. He was happy with his spot.
Late that night, you admitted that you felt frustrated and angry. Being home had two edges to it. Home is comfortable and you get lots of attention but seeing the house and all the things you used to do but can’t now leaves you with bad feelings. This is a natural result. I plead with you to use the sense of frustration to fuel your determination, and not let it eat away at you. “Acknowledge the frustration, harness it but don’t let it own you. Use it to fuel your recovery.” Words are easy for me to say – much harder for you to heed. “
What is normal? Normal life. Normal feels the same but looks different. We ate dinner that night together. The three of us at the card table that we set up at the foot of your bed. The dinner talk sounded familiar but the picture was different. Is this going to be the theme for us in our quest for our new normal? We got you onto the reclining section of the sofa. You ate lunch and bonded with the children and watched TV. It almost seemed normal. You sat at the computer for a while and read some emails with help to find the words on the screen.
A friend, Heather, who had helped you a few years ago with some health issues, sent an email link to a BBC article about the tendency for people with parietal lobe damage to have trouble ‘attending’ to the opposite side. This is certainly the case with you. The article describes patients with this type of injury to have significant visual filed losses. This also extends to other aspects of your perception of the world. If asked to draw a clock face, the clock may only contain the numbers 12 to 6. The left side of the clock face would be left blank. This article goes on to say that music can make a difference.
When patients, with this type of deficit, listened to their favorite music, their visual field expanded. The improvement was temporary but outlasted the actual music listening time period, some times by hours and days. When music was played that wasn’t favored by the patient, there was no effect. This illustrates how complex the wiring is in the brain.
From time to Quinn would feel sad during the weekend. I think he sensed your frustrations and he was trying to knowledge your losses. He would climb up into the bed and pull at your or my ear lobe. You held him and I think in doing so, you could admit a little of your grief.
Terry and Chris G. come to visit. Another normal, you and Chris hang out and talk and Terry, Fran and I yak in the kitchen. I noticed that although you had the TV within easy viewing, you didn’t watch much TV. I wonder if the visual input is another frustration to you.
Chris tells us of a little family project they are doing this year. They made some prayer flags from cloth. On each of them, they wrote a message, mantra or prayer on each that seems appropriate for the next year. This Tibetan tradition has an ancient origin that predates Buddhism. Five colours are used which represent sky, air, fire, water and earth. The messages promote peace, compassion, strength and wisdom. As the weather frays the cloth and sends tiny pieces to the winds, the prayer will be carried away to spread goodwill and compassion into the pervading space.
This exercise has captured my mind. I think it will be a fitting thing to do on New Year Day.
I made a trip to the drug store the stock up on gut moving products. It’s been a few days since your last productive efforts. At the drugstore the clerk gives me a strange look as I put quite an assortment of products on the counter. I explain the situation. I tell her that I wanted the whole ‘arse’anol for the problem. Not to be out done, when I came home with the stockpile of products, you said “Holy crap, it will feel awesome to get the job done.”
I had hoped to get a lot of things done this weekend, but the days seemed to fly by. We did finally look after Scroggins, the cat who died on the 4th day of your journey. The children and I dug a little grave beside the dogwood bush. It was hard to seen him again after all this time. But we needed to close that chapter of our lives. It seemed fitting that Scroggins would come home again the same day as you did. I had kept him at the animal hospital, frozen, until the time seemed right. This seemed like the right time. We made a grave marker for him with special messages from each of us.
I feel like we did some other timely things done like sort through the winter clothing, decorate the Christmas tree and make up presents for the new friends at the hospital. But getting Scroggins back to his home seemed the most important to me … perhaps because it seemed symbolic of the end of one chapter and the beginning of another.
You are very impressed with the children and how great they are. All the children. Tara’s lift operation skills, Quinn’s cuddles and eagerness to please, Erik’s excellent smoothie making expertise, and Neeson’s brawn.
You are even impressed with my sisters and me. In the past, you had coined and would sing the phrase “Do the Mowbray” in response to extremely clumsy maneuvers that we would manage to do on a regular basis. It was meant as a gentle tease and we all received the comment in that light. Now, you will have to coin another phrase that is a little boastful.
You were especially impressed with Neeson and his adultness that is emerging. Today at the hospital, you give Neeson $30.00 to show him how impressed you are. He tries to refuse it but you insist. Later, Neeson hands me the money, saying he didn’t want it. I try to insist that you really want him to have it because he has been such a good big cousin, but he still won’t take it.
You brag to anyone who will listen about Tara and Quinn’s sling and lift operation skills. You are proud of them. I point out to you that some of the credit goes to you and they still need you to be their Daddy. You nod in agreement.
“I want to feel whole again” you said. I thought you were talking about your lack of left-ness. But you meant you wanted the respect of the children. Being a parent makes you whole. Quinn read his journal to you. He had been writing in regularly since school started. When he got to the Halloween page, you stopped him mid way through and ask “Did I miss Halloween?” It’s still hard for you to comprehend that you missed all that time. I am so glad I have kept my journal going.
You want to contribute to society again in whatever capacity you can. We talk about the label; disabled and what it really means. It’s a definition for others who view you not a label you want for yourself. Who knows how this journey is going to turn out. I think it might be easier for a person born with a disability. There is no sense of loss. To find ‘wholeness’ after an acquired disability is much harder.
The first night home you were quite sore, but once we got your ‘as needed’ medication rationed out, the pain seemed better controlled. You slept at least 8 hours a night, possibly longer. So did I. My first good long sleeps in months. Sleeping by your side, makes our bed seem whole again.
You mood from the first evening to the next day shifted completely. Between better pain management and a very fruitful trip to the commode chair, you had every reason to feel better. When there are only a few things you can control with your body, having a victory at the commode is a boost to the morale.
On Sunday, I made the first family meal … from scratch! I have never loved to cook or even plan a meal. But after a vacation from cooking, for 16 weeks (to the day), I enjoyed the idea and the execution of cooking a meal for ten. It felt good. It felt normal. It’s like that part of my brain, that has been on vacation, is all charged up and ready to create nourishing food for the people I love. While no one said it was the best food, I had ever made, no one found a hair or got food poisoning, so this is definitely another ‘taste’ of normal.
On your return trip back today, Darlene, the driver, reminded you of your wish for A&W food. We had Neeson, Tara, Quinn and their friend Saxon ride with you in the bus. I followed in the car full of our Christmas workshop production. Once we got you established in your room, we went off in search of A&W food for everyone. Wow, fast food is expensive; it was a quarter of our weekly grocery bill!
We see the social worker on the way to A&W. She asks how the weekend went. I felt it went will with only a few low points initially. She is working on getting us a longer pass for the holidays. It might mean that I have to go into the hospital to pick up more medications part way through the holidays. You express interest in this thought. “Maybe I can convinced the others to take me down stairs while you are gone to get my medications.” You said. I tease you and say “You are not so brain damaged that you cannot plan and scheme, but you are going to have to work on keeping secrets!”
As I am writing this tonight, Annie is sleep on your bed. She enjoyed your presence and is savoring your scent on the bed. Being a dog, scent creates vivid memories. She is dreaming about our family weekend together. Having a livestock protection lineage in her family tree means she likes it when her flock is altogether.
Most of your scents don’t do that for me so instead, I took some pictures that I will treasure. At midnight, Tara came downstairs to the family room to where your bed is set up. She can’t sleep. She doesn’t know why. I settle her with the pillow you used last night and she fell asleep within minutes. I guess your scent works for her too.
We are starting to count the days again until Dec 24th.