The Need to Feel Productive
One of the struggles we have had to address with Lynn’s MS progressing so rapidly at one point was the loss of his feeling useful. Lynn was very strong, flexible, and talented all of his young adult life. Then over the course of three years, it seems he went from having the ability to build his own home (drafting the plans, laying the foundation for a full basement, toting, lifting, hammering, shifting, etc.) to not being able to have the strength to push a button on a keypad. He was the supervisor of a fabrication shop that designed and built displays that were the size of small houses. He was a very talented carpenter, but he could do just about anything related to construction and was even good at auto repair.
He was not going to acknowledge that he needed help
Unfortunately, just as his MS was progressing to the point that his work was being affected, his company closed the fabrication shop. He was still in the state of mind that he was not going to acknowledge he had MS and needed help so he did not apply for disability; therefore, he lost access to that financial assistance. He was convinced that if he didn’t own “it (MS),” then “it” had no control over him. Though I tried to explain that he could and should fight to keep all of his functions intact and working well, he did not want to accept that disability insurance and other resources were there to help in that fight, not to prevent him from doing what he could on his own. But, my husband is very stubborn. Enough said on that.
Discovering a new passion
While Lynn struggled to continue to “work,” being a carpenter doing physical labor is not safe when you lose your balance and fall often. Also, if hands and fingers don’t grip well, then use of power tools is dangerous. He realized after a couple of close calls that he needed a new line of work. His son suggested he start writing because he seemed to have a talent for it and enjoyed using his imagination. He started with short stories but soon had an idea for a novel. He found that he loved to write, and it became his new job. He had his first novel published (Rising Tide) in 2009, just before his physical spiral downhill resulting in months of hospitalization.
A need to feel productive
After his third hospital discharge in six months, he was very weak; however, he continued to want to write. He NEEDED to write because he NEEDED to feel productive. As a man, Lynn had to feel needed and productive to feel he mattered. Actually, don’t all of us feel that way to some extent? No one wants to feel like a burden. People have a need to contribute and when they can’t, depression sets in and health starts to deteriorate. Therefore, I realized that part of my role as Lynn’s caregiver would be to help him work and be productive. I needed to find a way that he could write daily that would still allow me to work. It’s often a challenge and can be very frustrating for both of us.
One-finger typing to voice recognition software
Initially, Lynn did all his writing with one-finger typing. It took him hours to write a paragraph because his lack of strength in his arm made maneuvering around the keyboard difficult. He also would become very tired after short writing sessions. We decided to ask friends and family come in to write for him which worked out wonderfully. However, all too often, they had to cancel coming for various reasons, and he would go back to the one-finger technique. That technique is also very difficult if you need to hold down two keys at once. Finally, I decided to have him try Dragon software. Using voice recognition software can also be very frustrating because it often does not recognize what he is saying. If he’s very tired, his voice slurs, and it sounds very different from his usual speech pattern.
An outlet for his creativity
However, even with all the frustrations, Lynn has a job that he goes to every day. He has now written four novels and is working on his fifth though only one has yet been published. He looks forward to writing. He likes to be able to say his occupation is “author.” It gives him purpose, is an outlet for his creativity, and it gives him something productive to do for the long hours between waking up in the morning and going to sleep at night. It also keeps him busy and keeps him from calling out to me so often for things that bother him just because he’s bored (meaning he does not notice them as often when he’s busy).
My role in helping him to work
Needing to work is fundamental for most people, and as a caregiver, I see part of my role is helping him to work, to be productive, to feel useful, and to feel he contributes. At times, it feels like I have two jobs to go to on a daily basis--my job and his job. In many ways, I guess that is true. Now…if only he could find an agent to help get these other books published so he didn’t need me to help with the marketing…(that’s another story for another day).
Do you live with any comorbidities aside from MS?