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Who Am I?

Looking outside, I see some new orange and yellow colors where last week I saw green. There is a sporadic fluttering of leaves cascading in front of the window on their way to cover my yard. The air is crisp causing me to need to turn on heat this morning so Lynn would not be too cold today. It seems that summer is definitely over.

Working from home now so that I can care for Lynn, I find it hard to really be part of the seasonal changes. I wear the same scrub suites all year. I am only outside a very few minutes at a time usually so I can always be in earshot of Lynn’s call for help or need to be catheterized so the usual changes in temperature do not trigger time moving on like it did when I went into work each day. Therefore, it seems at times as if I am a spectator to life rather than participating in the changes. I find it difficult to “know” instinctually what month it is.

I think about when I worked as a nurse years ago, I used to ask patients, “what is your name, what month is it, and who is the president?” Honestly, there are times I think the only one I could answer correctly is my name! My world is focused on keeping up with my daily demands moving between being a caregiver to an employee within minutes of each other and that transition occurring hundreds of time a week. After a while I’m so focused on trying to stay in the “here and now” that I am not aware of what’s going on around me.

Lynn listens to Fox news in the morning so I usually hear a little about what’s happening in the world as I assist him in his morning routine but after that, I rarely know what’s happening outside of my small world unless a family member emails me a question or shares a comment. I have to consciously strive to stay in the “here and now” both at home and in the world around me. It’s very tempting to just stay in my little world. I have plenty to do to keep me occupied if I did that. But….is that the right thing to do? I have to say, “not.”

It’s easy to become isolated when you are so busy caring for one person; after all, they are the center of your world. When that happens, however, I think that the “person” gets lost in the process. It takes extra effort but keep establishing my “personhood” apart from caregiving responsibilities but I think it’s important to do so. I “lost” myself in my first marriage changing who I was and what I liked to be accepted and to try to save that relationship. I’m a “people-pleaser” by nature and it’s difficult for me to not just allow myself to blend in and go along with the crowd. But when I did that, as in my first marriage, once that relationship ended, I didn’t know who “I” really was.

When you give and give and give and set aside your own wants and needs, you tend to cope with the necessity of putting others first, by repressing your own inner desires and enjoyments. But then if the relationship ends either through divorce, death, or just separation as people go in different directions, what do you have left? Sometimes, it’s not so clear. I remember a counselor asking me during the early days of my divorce what I liked to do and I honestly did not know. It had been so long since I had done anything just for my own enjoyment (other than read occasionally) that I had no idea what I might want to do for entertainment that I would do with others. It took me awhile to find “me” again; so I’m trying not to let that happen this time around.

That’s why I write this blog, to assert who I am and how “I’M” affected by this role. It’s why last week even though I needed to do so much at home, when my daughter said, “let’s get away,” I said, “yes,” instead of, “another time.” It takes a lot more effort to get away than it would seem. Something always has to give when you do, but I think it’s also important to remember to let who you are get free at times from being overshadowed by caring for others. Most likely, one day, I will not be a caregiver any longer and when that happens, I will need to know who I am so that I have “someone” to fall into. When that happens, I want that “someone” to be a friend; not a stranger.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Mandyrose
    6 years ago

    I am on the MS end of the equation. I wasn’t in need of the kind of care you describe. My then husband grew up with a mother who was chronically ill.( Systemic Lupus). She was ill from when he was seven, and passed when he was fifteen.We were married for ten years. Throughout that time, we tried to go on. He wasn’t equipped emotionally to live a life of chronic illness, yet AGAIN. We were both teachers, and loved to travel. Most of my symptoms were caused by Avonex. I tried to get off it, but my neurologist wouldn’t hear of it. Long story short, we separated, then got a divorce. I knew he wasn’t up for a lifetime of illness and disappointments. For us, it was the right thing to do. I was the one who was ill. I couldn’t tolerate sharing such a burden with someone I loved.

  • Donna Steigleder moderator author
    6 years ago

    One thing I fully realize is that both parties, the one needing the care and the one giving the care, each struggle with the toll MS takes on their lives. I know Lynn feels guilty for needing so much and I feel guilty for being resentful at times of being needed so much. It’s not an easy life. I’m sorry that in your case, your marriage did not work out. We are lucky. For us the mutual need lead to a stronger marriage. Thanks for sharing your story.

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