1st Aug, 2002
Marcia Tarbis Tofteland
Real Living with Multiple Sclerosis
WHEN OUR SON, Joshua, was kindergartenaged, my MS symptoms became visibly noticeable. During Josh's early development and growth, I made a conscious effort to establish a relationship with him that included open and free communication. I wanted Josh to be aware that no question was off-limits. I also made a conscious effort to talk to Josh's friends and classmates about MS. I attempted to explain MS to Josh's kindergarten friends in a way they could easily understand. It was a successful endeavor. Josh's friends were comfortable with my awkward gait and use of a cane.
Communication was the key. Communication put Joshua and his friends at ease around me. Communication also helped me feel more comfortable with myself. Most important, I realized that communication was the key to meaningful parenting.
Openness with Joshua about my MS remained an important part of our relationship throughout his elementary school years. As mother and son, Josh and I were learning many valuable life lessons together, even though we learned at two different levels of maturity.
When josh entered his middle school years, however, I was no longer consciously thinking about checking and guaranteeing he and I were still effectively communicating. In reflection, I realize I became too self-absorbed in the day-to-day difficulties and emotional angst of my slow, but constantly changing life to notice much of what was happening outside my own difficult world.
The tendency to see the world with myopic vision is a potential danger for all of us with chronic illness. Or is that my attempt to justify my own leanings toward a selfish perspective of the world around me? Our children aren't served by that singular vision. It's a demon I find myself constantly battling.
A Giant Leap
My MS progressed significantly during Josh's elementary and middle school years. Dependence on others was an increasing reality for me. I was no longer driving an automobile and I was relying on my electric cart almost exclusively for mobility. What I failed to notice was that my son's life also changed dramatically over those years as a result of my disease progression.
The change from elementary school to middle school is a giant leap. I believe I was helpful to Josh in making that transition. But I took for granted that the open dialogue Josh and I had established regarding my MS during his elementary school years was all that was needed as he continued to mature. I was wrong. Joshua brought it to my attention later; he had been worrying about my increased MS symptoms. Josh had many concerns and questions but he hesitated to bring them to my attention. My lengthy silence on the subject of my illness led him to believe that I didn't want to discuss it.
I'm grateful that, early in Josh's life, he and I had developed the kind of openness that would enable him to say, "We haven't talked about your MS in a long time, Mom." My heart sank after hearing Josh's honest comment, but he and I then had an in-depth conversation more appropriate for his middle school years. Josh asked me questions about my slow and continual physical downhill slide. He was concerned about what it all meant. Did it ever stop? What would happen to me if it didn't?
In retrospect, I know Josh was probably asking me if I was going to have to leave him, or even die. Early in Josh's life, he and I had a conversation about MS not being a fatal disease. Josh was still obviously concerned that I would have to leave him in some way. I told Josh again about MS and longevity, and assured him that I wasn't going anywhere, at least not anytime soon. As for the constant progression of my illness, I told Josh that none of us could know with any certainty what the future would bring. I pointed out that this was the truth for everyone, living with MS or without it. Josh and I had a wonderful conversation about living every moment to its fullest.
The dialogue concerning living life from moment to moment was cathartic for both of us. It put Josh more at ease regarding some of his concerns about my illness, which had been weighing heavily on his mind. It made me realize that I had an extremely open and honest son. I was able to reestablish a line of communication with Josh that was more appropriate for his maturing mind and spirit. I was reminded that communication should never be taken for granted.
My conversation with Joshua reminded me of the value of living in this
moment. It's an issue that is a struggle to remember everyday. This, dear
readers, is a good moment.
© 2002 Real Living with Multiple Sclerosis