Multiple Sclerosis Patients and Their Empathetic Caregivers
When Learning About Others Teaches You About Yourself
I am very thankful and appreciative that my mother and boyfriend took the time to answer my questions this month. It was a fun challenge to design questions to which I didn’t already know all the answers and which would delve into deep honesty and sincerity.
My intent was not for each of us to be vulnerable. But Rob and my mom opened themselves up and in the process, they opened me up as well. Reading the responses was somewhat emotional for me and emotional for many of our readers too.
When I read my mother’s answers, I couldn’t help but cry a little. Her empathy came through so strongly that it was difficult to not feel that amplified with my own empathy for her.
Vicki commented in part, “I like the way you said you and your mother have grown from relatives to friends. That is almost every mother's wish, but it often does not happen without a catastrophe of one kind or another.”
At the time of my blinding optic neuritis in 2000, my mother and I weren’t exactly close. We had lived together for about a year, but we were like oil and vinegar - never quite mixing well.
I was very secretive and guarded my emotions tightly. I revealed information only when necessary and thus wasn’t open to having a close relationship with anybody. In fact, my brother thought that we might figuratively kill each other when I first moved in. I had my doubts, too.
But in the years 2003-2004, a series of catastrophic events occurred. It’s not important to know what they were, so I am choosing not to discuss the events publicly. But they are what finally pushed me to pick up a phone and locate a counselor in my area.
During that same time period, I became the strong one at home. I had to take care of many things, and I learned much more than I bargained for in the process. I was changed forever. I also became much more open and trusting.
When the diagnosis process started, it was extremely handy to already have an active relationship with a mental health professional. There was so much going on with the uncertainty of a new diagnosis. I also happened to be in a new relationship with Rob.
That relationship provided support and understanding, although Rob did share that it was hard to understand what was going on. Rob said, “I recall feeling a bit confused and uncertain about the matter. I knew you were upset and I wanted to do what I could to help you cope with the diagnosis. At the same time, I didn’t really know what I could do, particularly because I didn’t detect much change in your physical condition other than that you would complain of fatigue fairly frequently.”
Yes, I talked about fatigue and my body’s daily demand for long naps. I would sleep on the couch and worry that I wouldn’t wake up in time to teach lessons. Rob gave me a travel alarm clock to use just for that purpose. I appreciated this gesture tremendously and was sad when the clock stopped working.
It’s comforting when those around us try to help in some way. But there’s a fine line between comforting support and overbearing support. I’ve been fortunate that my caregivers and supporters have not been overbearing in any way. It is only recently that Rob has become more vocal with suggestions that help me avoid overheating and completely wiping myself out. Finding that balance takes time.
Sometimes I find it hard to accept that Rob accepts me as I am - because often I don’t. I still haven’t made peace with the fact that I have fallen short of my self-imposed, youthful expectations of life. I miss the life I was just developing before this disease said otherwise.
Suz and I have been having some great conversations in the comment sections of these interview posts. She is dealing with some issues I believe we all face on this journey. It’s hard to distinguish guilt from grief. And too often, it is easier to project our emotions onto those we love to try to protect our vulnerability.
I feel guilty that I can’t do everything Rob does. I feel that he deserves someone who can. But he accepts me as I am. Why can’t I?
I still grieve the person I thought I would be. No, let me rephrase that. I grieve the career I thought I would have someday. But without the totality of my experiences, I would not be doing the meaningful things I do today.
I am very lucky. I touch people. I help to shape the future of children through music. I use my words to reach out to others. People reach back to me. I make a difference.
And...I need to forgive myself for having MS, while staying open and vulnerable to the joys and opportunities THIS life offers up to me. Thank you to everyone who has helped me to see that. I am truly grateful.