Chris Ruhlís wife, Susan, has severe CFS. The experience has been transformative for him.
Personal Stories: A Spouse's Transformation
By Chris Ruhl
My wife, Susan, forwarded to me a solicitation from the May 2008 CFIDSLink, asking for people in the CFS community to share our stories. Here’s mine in a nutshell.
My marriage to a longtime CFS sufferer has been the catalyst and vehicle for my personal transformation, and for that I feel no end of gratitude.
Susan originally became ill with CFS in 1989. We met in 1992 and were married in 1994. Shortly before our wedding, Susan had a significant reactivation of her symptoms and of the illness itself, and she has struggled mightily with it ever since. In 2004 she became mostly bedbound and since then has needed substantial assistance from day to day. Our only daughter has been away at college since 2005, so I’ve been Susan’s primary caregiver through this most difficult experience.
My orientation to Susan’s illness may be different from many spouses of CFS patients. I’m very focused on my spiritual journey. My foremost goal and purpose in life is to become free—not in a worldly but in a spiritual sense. To me the very purpose of life is personal transformation—to discover a source of joy and fulfillment that doesn’t depend on the external events or circumstances of my life. Fortunately, Susan shares that goal and aspiration, and our marriage has been a conscious and deliberate coming together in the pursuit of that shared purpose. From the beginning, we’ve viewed our marriage as a vehicle—really, the primary vehicle—for our shared process of personal growth and transformation.
Enter a very difficult and problematic case of CFS, with all the familiar and wearing challenges known all too well to CFS sufferers, their spouses and other family members. To me, one of the most difficult aspects of long-term, really bad CFS is that the day-to-day challenges become unrelenting, merciless. Over time, complications build on complications to the point that new and unfamiliar medical crises can break out with greater and greater frequency, even daily. The stress of being the spouse and primary caretaker under these circumstances can put incredible strain on even the best of marriages. The coping mechanisms of spouses of CFS patients can be stretched to the absolute limit and, I fear, often fail under that strain.
For most of the past several years I did my best to operate within this framework, coping as well as I could. Friends and family members offered support and sensible counsel about the need to make sure to take care of myself, get time away, etc. At some point, though, standard coping skills and self-care fail. At that point, the only positive option left is transformation.
For me, that transformation took the form of a radical acceptance and surrender to what have become the severe limitations of my life, of our life. At some point in the last six months, I began to simply surrender to the fact that by any outside assessment, my life may appear to have become its own kind of prison. I go to work every day to a very demanding job as a manager in state government, and then I come home to care for a very sick CFS patient. I am on a very short leash.
But that’s the paradox. By simply surrendering to those limitations and accepting them—by really letting go of wishing my life circumstances to be other than they are—I suddenly began to feel completely free. I found myself feeling lighthearted, happy, joyful and actually being and living in the present moment. Because, in fact, that’s all there is.
I am no longer trying to run away—physically, mentally, emotionally—from this often seemingly impossible situation. The same challenges and difficulties are there, now more than ever. But my orientation to them has utterly changed. A certain veil has dropped, and life looks completely different to me now.
Ironically, too, in Susan’s view I have “finally become the man she had always hoped I would be.”
Some years ago I saw a brochure that made an indelible impression on me. It was from a spiritual organization that does outreach to prison inmates. I will never forget the motto on the front of the brochure that summed up the purpose and goal of the program: Freedom on the inside. In the months and years since, that simple statement has taken on ever deeper meaning for me.
Because in the end, isn’t that the only place where true freedom can be found?
Chris is an attorney and graduate of the University of Minnesota Law School. He has worked in court administration for many years and currently serves as a manager of court services for the Washington State Administrative Office of the Courts. His wife, Susan Lucey, has an MFA in sculpture from Tyler School of Art in Philadelphia and served as a professor of art at the University of Minnesota from 1976 until becoming disabled with CFS in 2001. They’ve been CFIDS Association members and CFIDSLink subscribers for a number of years, beginning in 1998.
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