I have spent most of my life thinking that as I aged I would be the one taking care – of my partner who is 12 years older than I, of family members, and of beloved friends and mentors. I didn’t create a narrative of myself actually performing a caretaker’s tasks; I just always imagined myself happily cast in the caretaker’s role. For a while after my MS diagnosis, I made extraordinary attempts to keep the disease from obliterating that fantasy. I developed an appetite for representations of heroic MS patients who continue to function capably “despite it all.” I read article after article describing MS as a variable disease and willfully (mis)interpreted their message as a promise that my disability would, in all probability, be slight rather than profound. I visited online patient support groups and focused only on comments from people who were still employed, who could shop for themselves, drive, and do all or most of life’s daily work.
Of course I was cognizant of the fact that I was creating lies of omission. Of course I felt my body losing strength and function. Of course I could see that my fantasy of taking care of others was slowly being replaced by the reality that I needed more and more care from others. My response to all of this was fairly graceless: though I was keenly aware that being needed by others brought me great joy, I greedily held to the idea that no one would feel that kind of joy when I was the one in need. I whined to my partner that my increasing disability was not what she “signed up for,” and I nurtured the kind of narcissistic self-loathing that refuses to acknowledge the power of humbly receiving when you’d rather be giving. When my friends asked about my situation I tried to make light of my body’s slow but steady decline and the fear I felt about that experience. In these ways, I dishonored the love and generosity that my friends and family offered. Time and MS are powerful conspirators, though, and in my life they have focused most of their collaborative energy on changing the way I understand myself in relation to the people around me.
I think often about Therese Edell, a singer-songwriter who was a fixture in both local and national women’s music communities. Not long after I moved to Cincinnati I became aware of Therese and of the fact that she suffered from MS. Though I did not know her personally, I saw her many times, always accompanied by loving friends whose commitment to her was palpable. By the time I was aware of her, Therese was confined to a wheelchair and needed help with even the most basic physical movements. My partner, who had lived in Cincinnati and been active in the local women’s community for a decade before I arrived, explained that a group of people worked together to provide the care and social interaction that sustained Therese. Since my diagnosis, Therese has never been far from my mind; I have felt compassion at the early onset and fierce progression of her disease, fear that my own disease would be as cruel to me as hers was to her, and awe that she was able to build a life that deeply touched so many.
When I began writing this post, I imagined it as a complaint against MS and its insistence on denying me opportunities to care for others in the ways I once hoped I would. I also imagined it as a kind of apology to the many friends and loved ones on whom I have in recent years become so dependent. That is, however, not where the writing has led me. As I have struggled to articulate how much I dislike feeling need and dependence, what has emerged is an insight I could not have recognized before: that in order to feel gratitude I must be willing to welcome care from the people I love in the same way that I would welcome the opportunity to care for them.
Beautiful!
((Hugs)) Embee
Thanks, Embee! I am so happy when I see you here!
Isn’t writing amazing? We learn all kinds of new things about what we think when we take the time to write.
Back in the days when I was still a believer and attended MCC, one of the lessons I learned was that one of the best things you can do for people is to let them give the gifts they have to give. You may regret needing those gifts, you may not even want the damn gifts—but accepting them is an even bigger gift.
At some point about 20 years ago, I summed up my life’s philosophy as follows and embroidered it on a sampler:
Give thanks.
Act lovingly.
Ask for help.
The first two are often easier than the third, but I think they are pretty much equal in importance.
Love you!
I love that sampler quotation, Sarah-Hope. I might have to design one like that for myself! And, yes, writing is amazing. I love that it insists on teaching me.
Michelle, thanks for this new perspective you’ve presented. I will be applying it to my own attempts to accept and appreciate a helping hand, as well as to enjoy a sense of gratitude rather than feeling like a nuisance to those who truly do for me out of kindness and love.
Dee, feeling like it’s okay to accept help is something I struggle with every day. One day at a time, as they say. And, from what I can tell, you give at least as much as you receive.
I love it and totally understand it.
Mary Ellen
Thanks, Mary Ellen! When I read your most recent post I knew we were on the same wavelength this week.
Reading this, I kept thinking that you were channeling my thoughts, as well. Particularly, the not what your partner “signed up for”. Thank you, as always, for expressing it so much better than I would, and most importantly, for your wonderful friendship.
Right back atcha, Candi. Your friendship means so much to me.
We really appreciated your thoughts on being unable to accept help gracefully at first. I have been very quick to offer my help to my partner, but have had little thought to how needing my help has effected her. It suddenly donned on my one day as I was thinking about what my own needs would be after a surgery. I realized that I would not want her to help, would not want to place that burden upon her, but would be “forced” to ask her for help.
I personally need that insight into your mind, because through you I get a better understanding of how M.S. effects her. Thank you for your help. While you may not be in a position to be a physical caregiver, you are certainly in a position to give care, love, and understanding through your words, thoughts, and frank wisdom.
Jill and Nancy, it’s hard to think about all of this as a kind of “give and take,” isn’t it? It seems like there’s such a tendency–cultural? social? I don’t really know–to “count up” what we give and take. It would be so nice if we could stop thinking that there are relationship “scorecards,” wouldn’t it?
receiving and giving are circular…allowing others to help us gives them the gift of being able to shine their lights compassionately. I had a hard time asking for help when I was first diagnosed, I still do sometimes, but I am learning more and more that doing so isn’t just good for me, but for everyone I let in to my heart. You know, by writing your beautiful blog, you are giving a whole lot to the people you love and to those of us (like me) who are meeting you for the first time. Thank you.
Beautifully stated, Laura! It’s so hard to remember the way giving and receiving come together to build the energy that gives life to our relationships.
Thank you for your kind words about the blog. I’m glad to see you here.
I really liked everything you had to say, as usual! I found myself struggling with this during the year plus when I had my surgeries and walking difficulties. I also have sought to be/grown up thinking I would be a caregiver type, and had and continue to have a hard time reversing that role for myself. I liked the comment you made about socialization of caregiving, and how we’re taught to see it not as a give and take (from both/all participants) and how we believe and put so much stock into the “burden” ideology. I struggle with this on a number of levels, and really appreciated the insight in thinking about it from my own other perspective, as caregiver, and how I receive comfort and love from both roles–as do people who have and continue to help me. Lots of love,
Kai
Thanks, Kai. I find that the it’s a daily struggle to remember that give and take are part of the same process.