Seekers- One foot in front of the other through struggle

Joan #4

Years of struggle

Joan continues:
“Although Mike and I both loved our home, we had a difficult marriage. In the beginning, he had been my hero, the older man who could teach me about life and love ,but the more I grew up, the more possessive he became. Mike and I even joked about whether women compared to men should have a 40/60 or 30/70 split in being the boss. During the first years of our marriage, although we fought about these things, I didn’t question the basic assumptions underlying our rules. We focused on what we shared -- our home and our three children.

“I thought I would go back to school while my children were young, but my son Mark had neurological impairments and visual perception problems. When I realized how serious his condition was, I switched gears, and Mark became the focus of my life. At four and a half, he was diagnosed with diabetes, and that only added to my sense of responsibility for him. From then until his fourteenth birthday, even after the birth of my two daughters, I was absorbed in keeping Mark safe, and helping him develop. His condition was difficult to handle. He was an active, curious child. A delight really, but I had to monitor everything he did and everything he ate.”

My daughters Kim and Lyn sometimes drew me out of my worry for Mark. With them I did the normal things a mother does. In those moments I delighted in them, but, my worry for Mark often took over. I had difficulty seeing the life around me. I felt responsible for Mark’s insulin, his calories, his exercise, and his every moment. I watched over him so carefully that as he reached adolescence my supervision upset him. Thinking about his need for independence, I explored boarding schools for children with diabetes and his set of learning disabilities. I found one in Texas, outside of Dallas. I hoped that he would finally get what he needed. I wanted more for him, and wanted to make sure that he would have the chance to make a living for himself, and that he would never be institutionalized.

“Mark left for school in the spring of his fourteenth year. He came home for the summer, older and more mature. He went back to school in September. He continued to do extremely well, and the plan was for him to come home at the end of the semester. This never happened because in February, when he was fifteen, he died from an overdose of insulin. By that time, he was giving himself his insulin, though still under supervision. Mark died on a Sunday after spending a weekend at the home of a classmate who lived out on a farm. He wanted desperately to be accepted by his peers. Before going to the school, the other kids never paid attention to him, but at school, he began to make friends for the first time. He was very excited about the weekend. He and his friend had done many things that weekend. He returned happy, but exhausted, to the house where he lived with five other boys. He tested his urine and found that he was spilling sugar. He gave himself insulin, but he must have given himself an overdose. He died during the night.

“I have lost many people I have loved, but Mark’s death is different for me. I carry the guilt of his death. I carry a terrible sadness. I should have done it differently. He loved his home and our family, and yet I encouraged him to go away to school. I know that it was because I wanted more for him, but I will always wonder if it was the wrong decision. I will carry this guilt to my grave. I know that I can go on, but the pain and guilt come with me.”

Joan’s guilt about Mark might have overwhelmed her, but after Mark’s death, taking her grief with her, Joan returned to school to finish her education. But once again illness struck. Within two years of Mark’s death, Joan’s husband’s kidneys failed. He elected to have a kidney transplant, but after ten days the treatment failed. Without their permission, the surgeon in the emergency room placed him on a dialysis machine, something Mike had said that he would never have wanted or allowed. Once he was on the machine, Joan became his full-time caregiver and tried to keep him going as his condition worsened. Joan said:

“I was clinging to Mike’s life. It was my duty to see that he stayed alive yet, over time it was harder and harder to run him on the dialysis machine, and he had more and more near-death emergencies. During one of these episodes, I called the hospital, and the nurse on duty told me to bring him into the clinic in the morning. At that point, he also needed his shunt replaced if he was going to go back on the dialysis machine. That night, I sat with my daughters around our kitchen table, telling them that I was thinking of letting their Dad go. They were nineteen and twenty-one. Both of them at different times had stayed at home to help me care for their father. It was hard on them, but they both showed up to help me. Kim was home the summer before Mike died and in addition to helping with Mike, she had held down two jobs. The night we spoke of letting Mike die she had come home from college to be with us. Lyn was living at home at the time. They both said that they thought not putting Mike back on dialysis was the right thing to do.

"At the hospital the next day Mike wasn’t put back on the machine. I stayed with him until he died the next day. During the years that Mike was ill, we resolved many of our differences, and we were quite close and had spoken directly about his choice to live or die. But, in those last months when I tried to bring up the subject, Mike refused to talk about it, saying that his care was up to me and that I knew how much he hated being on the machine. He was so miserable that I know it was the right thing to take him off the machine, but I desperately wanted to do it with him and not on my own.”

Joan’s losses have moved her toward living fully and not fearing death. Her response to life’s fragility has been to choose a path and to follow it to the end. Sometimes, when hiking with her up a difficult hill, l suggest that we turn back before we reach the top. Joan laughs at me and keeps on going. When it is time for her life to end, she plans to move toward death in this same way.