March of 2012: This was a biggie. When we got back from the funeral for Strokeman’s mom, we were informed that the time for rehab would be over for us by the end of the month. I was devastated and terrified. Strokeman was relieved. I feared that we would go home, he would crawl into bed, and that would be the end of any improvement we would see. One thing it did make me realize is that ultimately it is up to the individual and his or her family to determine the end of the story. I began to read books about how other stroke survivors had gotten their lives back. I solicited the help of the men at church to learn some of the exercises Strokeman needed to be doing every day, I found a pool that had a sloped walkway into the water with handlebars on either side for Strokeman to hold onto, and we began going to the pool for exercise. I had talked with Strokeman’s physical therapist to get ideas of the kinds of exercises I might try in the pool. The first few times we went, were a little harrowing. I had to learn what he was capable of. He had to learn not to be afraid. And we both had to learn some sort of system for getting in and out, showering, dressing, etc. This pool was at a community center not far from home, and was equipped with a family dressing room complete with wheelchair accessibility. We began to go to the pool two to three times a week.
This month holds the dubious honor of being the time of Strokeman’s first (and only) fall since his effort to go to the bathroom in the CCU. In actuality, he didn’t really fall. He just kind of slid to the floor at the side of the bed. He was horrified, but we were able to calmly work through the plan we had been given by the therapists for just such an occasion. I was so encouraged by how easy it was to get him up off the floor, but he was terrified of it happening again, and this caused him to be more fearful than ever.
As I look back, I see many things that have improved, but also some things that I had to give up on. At this point, not only was Strokeman attending church with me somewhat regularly, we actually left the wheelchair in the car a few times. He would walk in, sit in a pew, and then walk back out to the car. Soon after, he began to insist on having the wheelchair to sit in, and then after several months of him being less and less inclined to go at all, and my being less and less inclined to fight about it every week, he stopped going. The same pattern is seen if I look at how he came with me to take our granddaughter to a short sports program once a week. Now he rarely leaves the house. As I consider the reasons for this, I think that perhaps it has to do with what seemed more frightening to him. Initially, it was more frightening to think of staying at the house without me than to go with me. As we worked at his independence, and he became more confident about staying by himself for periods of time, his fear of leaving the house became more prominent.
March 2013: My grand daughter, Baylie begins to play soccer. Strokeman goes to a few games with me, but soon begins to beg off, complaining of cold, a fear of having to use the porta-potty, etc. In the car on the way to the games, his rapid breathing is audible as he fights back the fear. Soon it is just easier to let him stay home.
My days were primarily taken up with tending to Strokeman , but with the sitter that was coming on Mondays, and with my husbands increased ability to stay home by himself for a period of time, I was able to spend time away. I was able to be involved with activities of my children and grandchildren and to enjoy being with good friends for a bite to eat or a movie. I began to feel like I was getting a little bit of my life back, but continued to grieve that Strokeman seemed content to not be a part of this.
One of my favorite activities at this time was making cookies to send my army son. Almost every week I sent him a package of cookies. I had asked him what kind he liked, and he suggested I just go through the cookbook and make them all. And that is what I did. I found that some were more package friendly than others. At one point, I was not only sending cookies to him, but to a part of his company stationed in a different part of Afghanistan. It was a pleasure to send a little bit of home to the men and women who are protecting my freedom. I imagine my son would love for me to start that up again, even if he is in Hawaii now.
It was about this time of the year that I began to see appliances breaking down and things needing maintenance around the house. The problem with every appliance only being made to last 10 years is that they all start breaking at the same time. I became adept at calling repair men and making decisions about whether to fix or replace. The upside about being home most the time is that when you have to wait around for a repair man to come, you know you would be there anyway.
March 2014: It makes me a little sad to look back see that Strokeman has given up on that first effort to try to be out and about. There seems to be only one place he is willing to make the effort to go, and that is to my daughter’s house on special occasions. However, he does seem to increasingly look for ways to stay connected in spite of his reclusiveness. He often writes letters to send in the mail to his grand daughters. He calls his children and grandchildren quite regularly.
We have yet to start up the pool exercises again, primarily due to my lack of organization, but also because our winter keeps hanging on. It is my goal to visit the facility this week to discuss the best times to come and see if there might be some way to work around the lack of a “family” locker room.
Strokeman finished posting the information he wanted to post on his blog, and has now decided to work on an old engineering project he started almost 20 years ago. This has required him to work on an old laptop that has Xmath on it. He told me he has an idea that should solve a problem he had with the program he was trying to create years ago. So far, he has not been able to get things working the way he wants, but he is continuing to try. He is also making the effort to read the Xmath manual and to problem solve the obstacles that are standing in his way. I see this as evidence of continued brain development, especially in the areas in which we saw some severe damage. One day while we were discussing what he planned to accomplish, he said, “If I can get it to work, I would want to write up a proposal and present it to Bill (an engineering colleague). Maybe we could meet him for lunch.” …meet him for lunch? You mean leave the house, drive to a restaurant and go in and eat lunch? OK! So, as with his blog, I am cautiously optimistic. I can’t even let myself hope that he might actually agree to go out to lunch some day. However, every button he pushes on that computer, every word he reads in that manual, every minute he is compelled to stay up in his chair; it’s all good. I would once again like to encourage anyone out there dealing with brain issues not to accept the conventional wisdom that would put a timeframe on improvement. Three years out, and we are still seeing positive change.
This month has been a difficult one for my daughter who is chronically ill. A good part of my concentration and effort has gone into helping her get back on a track of increased health. It was a discouragement to us both that she had to come home to be taken care of by her mommy this week. She has returned to her apartment with some improvement, and a plan. I know that she would appreciate your prayers, as would I. Trying to determine where I am most needed, what is mine to control, and what is not, has been a bit of a challenge. As I took her to a doctor on the third anniversary of the stroke, I couldn’t help wondering if March would ever be anything but miserable.
I would like to end on a more cheery note, so I will share two of my favorite things with you. First, there is a man at church who has begun to take his role as my brother in Christ quite seriously. He sees it as his personal ministry to give me a hug every Sunday. There are others of my “brothers” at church that hug me on occasion. But Dave is the only one who watches for me. When he sees me walking in his direction, he will stop his conversation grab me into a big bear hug, kiss my cheek and tell me he loves me. I know all the perils of too much familiarity with other people’s husbands. I know the importance of not having the appearance of evil. And I am all the more thankful that Dave throws caution to the wind to give a sister a hug. It’s a simple thing, but it is one of the things that feeds my weary soul almost as much as the worship service.
My other favorite thing is my Tuesday night practice with the Texas Traditions Chorus. This women’s chorus sings barbershop style music. It has been a wonderful way to express myself musically. I am challenged by the complexity of the harmonies in a way I have not been for a long time. It is also a wonderful social activity. The women of the group are of different ages and backgrounds. We work hard together, but with much laughter. Although this is not a religious organization, each practice is ended with us standing together in a circle and singing these words:
Thank you dear Lord, for music to inspire us as we go along.
Thank you for bringing us all here together
To share in the wonder of beautiful song.
Thank you dear Lord, for friendship to fill us with radiance within.
Touch every heart with the magic of harmony
Thank you our Father, again and again.
Thank you, our Father, Amen.
When I sing these words, I am sincerely thankful to my Father for music and for this chorus. I sing it as the prayer it is designed to be. Last night I became so overwhelmed with my gratitude that I couldn’t finish the song for choking back the tears. I received a round of hugs and voiced concern for my meltdown. I couldn’t even begin to tell them all that was in my heart.