I was housebound for a year, struggling each day to stay a few steps ahead of the pain and rarely succeeding. That was my daily work, my role, and I felt that I could not take on anything that interfered with my primary struggle. On better days, I tried to go for a short walk outside. That was my limit. In retrospect, it may have helped me to be distracted by vacuuming or doing dishes. The one thing I was compelled to do, and was very good at, was internet research on chronic pain and on western and alternative approaches and on finding specialists. I became a lay expert and used that expertise to drive my care. That also became my role.
That also became my role.
I was dependent on Richard to deal with the world, and to keep the world away from me. That was his role. He is a master at this and was brilliant at negotiating with our insurance company and at searching out food I had some interest in eating. He felt joy when he was able to solve a problem that lifted my burden a bit, since he felt so helpless in terms of making my pain go away. I, in turn, expressed appreciation for his activities and insisted that he continue working at his job and find a therapist. I knew that he needed normal time – time way from illness, pain, and a crying wife. And I knew he needed his own specialist, a therapist he could share his fears and pains and anger with, because I could not hold his pain and my own.
We checked in with each other regularly about this arrangement. On my better days, I offered to go to Whole Foods or to pick up a DVD (in the days before Netflix). He asked me to let him know when it could work for him to visit his brother in
Did our efforts to balance our roles go smoothly? Were we always in synch with each other’s needs? The answer is a big, fat, shrieking, “NO!” Illness is overwhelming, and without consciously remembering that your partner is on your side, the rage of illness can easily trump compassion. There were times I angrily sent Richard out of the room because I thought he just didn’t get what I was going through, and it was too frustrating to try to explain, again. There were times when Richard was fed up with my finding fault at his attempts to help and had to take a break from my despair. Ultimately, we found our way back to each other, because that is what we do.