Mar 15, 2009
A door that never closes
John Baumann, M.Div
We wait in a small, sterile, brightly lit examination room. This was our third visit with the neurologist hoping to find an answer for the numbness in Marsha’s hand and arm. Marsha had just finished another set of seemingly simple tasks: touching her nose with her forefinger, snapping fingers, following a moving object with her eyes.
Nothing had changed.
The doctor comes back into the room, sits on a rolling stool just a bit lower than Marsha, takes her hands and says in a soft, compassionate voice, “You have MS.”
These words, “You have MS,” delivered with such care and concern, feel as sterile as the room and as harsh as the bright fluorescent light. The words ricochet around the room. I feel the door to a life we had planned being slammed shut. Marsha and I each experience numbness.
What do we do now?
There is so much to consider in terms of immediate treatment and ongoing therapies. There is so much to learn about MS. How do we even begin to tell family and friends when we do not really know what it is?
Marsha is in another room about 30 minutes later receiving the first of a three-day regimen of steroid treatments that will not reverse any of the damage, but will hopefully speed her recovery towards whatever level of use she will have. I use a phone to call local MS organizations to begin to gather whatever information is available (some of which arrives at our home the very next day).
We tape a pen to her right hand so that Marsha can write.
Playing the piano becomes a heart-wrenching search for the correct keys to hit.
Challenges with cognition and extreme fatigue emerge.
So begins the care giving/care receiving journey with MS.
This becomes our life for the next six months or so. We go to seminars, some sponsored by pharmaceutical companies that produce the recognized drug therapies and some sponsored by local organizations. I create a library of information. We join a support group for those newly affected by MS. We connect with a neurologist who specializes in MS.
At first, I am driving this search. I will take care of things. I am the care giver and Marsha is the receiver of care. Gradually, this changes to a partnership where Marsha takes the lead in identifying what she needs and we figure out how to respond together.
Yet, something is missing in all of this activity. It is Marsha.
Our focus – my focus – has been on MS. Marsha with MS has supplanted Marsha the person.
This insight came to Marsha while reflecting on Rembrandt’s painting, The Prodigal Son. The father stands before the kneeling son, embracing him in the light, while in the shadows both the older brother and another figure look on. Marsha shared that she felt as if she were looking out from the shadows, watching as this person with MS was being embraced. And I wondered whether or not I was keeping Marsha with MS on her knees, or whether I was embracing Marsha so intently that there was no opportunity for Marsha to embrace me.
We recognize that this care giving and receiving was necessary, but the focus on living with a chronic illness had become the focus of our relationship, a necessary focus as we learned to adapt to the realities of the illness. Yet his ultimately fails, for MS remains at the center and we fail to tend to the heart of our relationship.
One day it dawned on us that I had been living my wedding vows to Marsha so intently that there had been little room for Marsha to live her vows to me. When we voiced together that maybe we should make space for Marsha to live her wedding vows, we were stunned.
Once again, words ricocheted around the room. But this time, a door to life opened.