Surviving: part two

This is the second installment of ?Surviving? by Susie Clark. In the first installment, Clark writes about what she calls ?anticipatory grief,? the knowledge that her and her husband's two children are dying from Neimann Pick Disease.

My husband found his one way to escape the pain of death and dying. He worked very hard at his job. Work gave him the success and control over his life that he couldn't find at home. He excelled quickly in his job, and that gave him purpose.

After our son died at age 18, we grieved terribly over his loss. He was our funny, sweet firstborn child. And, lurking in the background was the fear that our sweet loving daughter would be following in his footsteps. However, we tried to keep a positive outlook of hope for our 16-year-old daughter who was keenly aware that she had the same disease which had stolen her beloved brother. When she lost her battle to this monster disease four years later at age 20, my husband and I collapsed in our grief. Because we had lived through this horror together, we were closer than any husband and wife I've known. We were the only two people who knew exactly what the other's heart was feeling. There were no words to describe the bond we had.

After both of our children were gone, I continued to race. If I sat down, my mind would travel to the dark helpless place harboring my profound, suffocating sadness. So I ran. I tackled extreme landscape projects at our home. I tore out walls and remodeled parts of our house. Anything to feel that I once again had a purpose in life, and some sense of control over what was happening around me. Because my plan of being a mom had been destroyed, I continually looked for a new reason to enjoy life. Something as simple as mowing the yard was satisfying to me. It gave instant positive results, unlike the rest of my life.

I also discovered any extreme emotion was associated with the extreme emotion of

grief. If I laughed hysterically, it also made me feel the anxiety of losing control over my grief. If I drank alcohol, it lowered my strict control over my emotions. Losing control was terrifying. What if I couldn't regain control? What if I couldn't come back to my fight for a new life? However, struggling through the horrors of extreme bereavement without allowing myself to lose control once in a while was unrealistic and unhealthy.

The seven stages of grief are a general suggestion, not a rule. Because I've gotten past anger today, doesn't mean I won't go back there in a couple of days. I knew people were apprehensive to be around us during that time. It's human nature for them to try to say something to make us feel better. I realized they did this because they cared, and tried to accept their comments with the love intended, not the way it made me feel. Because we had lost our children, I think it had a more intense effect on people. It made them feel frightened and vulnerable. Some people made us feel almost as if our situation was contagious. So, when we needed them the most, some people turned away. Watching what had happened to us was just too intense and frightening to experience. So, they protected their own hearts and walked away. I missed them, but didn't blame them whatsoever.

It was incredibly hard to present my happy face in order to alleviate someone's discomfort. I found myself looking down?a lot. If I didn't make eye contact, I didn't have to pretend I was okay. It was so hard to be in the most normal situation, because now, for us, there was no normal. Going to the grocery store wasn't normal. Couldn't these people stop smiling and being happy? Didn't they know my whole life was so sad that sometimes I had to remind myself to breathe? But they would go on, absorbed in their own struggles of life.


Installment three of four of ?Surviving? will be printed next week.

Have a good story? Call or text Curt Swarm, in Mt. Pleasant, at 319-217-0526, email Swarm at or find him on Facebook.