Tonight's photo was taken in September of 2008. Mattie was diagnosed with cancer and his preschool invited him back to the playground after hours to see his two teachers, the director, and to play with his buddy, Alex. They wanted Mattie to have a chance to feel support in a normal environment which he enjoyed playing in! Standing right next to me on the top step was Margaret. Then on the second level from left to right were Kim (Resurrection Children's Center's Director), Mattie, Kathy (Mattie's preschool teacher, during Mattie's second year at the School. Kathy is another gifted teacher and to this day comes to our Foundation Walks and participates in our fundraising teams!), and Alex. The woman dressed in pink in the front row is Deb (the School's occupational therapist).
Quote of the day: If suffering like hers had any use, she reasoned, it was not to the sufferer. The only way that an individual's pain gained meaning was through its communication to others. ~ Diane Wood Middlebrook
As I remain in bed today still not feeling well, with a fever, this gives me a great deal of time to reflect on the death of my friend, Margaret. As Diane Middlebrook's quote implies, individual pain itself serves NO purpose unless it is communicated to others. I personally gravitate and support this message. However, Since this is Mattie's and in essence my blog, I am in NO way trying to give Margaret's illness a voice here. Instead, I can only provide my own insights into what it was like as her friend trying to interact with her as she battled ALS.
In many ways, I lost my 85 year old friend, Mary and Margaret in a similar manner. The only difference is with Mary her decline was gradual and with Margaret there was no time to prepare. One week Margaret was talking and eating and practically the next week, those skills were lost. But in all essence, there were no plateaus for Margaret. She never was able to reach an equilibrium. She went from being unable to walk, to being unable to use her arms, to being unable to talk, to swallow, and then to breath. A rapid, rapid decline, nothing happened gradually. Being trapped in one's body unable to do anything for one's self and being unable to communicate to the outside world..... to me that is hell on earth. The frustrations and depression this can produce are enormous but seeing this impact your own friend, a person you knew to be full of life, who was independent and liked to do things for herself, to help people, to accomplish thing, and to converse both in writing and verbally.... this was the worst possible disease I could ever imagine for my dear friend.
Many of my visits with Margaret involved crying. For those of you reading this, you may be saying..... "how sad," or "how depressing." Why did I not go to cheer Margaret up, make her laugh, take her mind off her troubles? Serve as a diversion? At times I would do that, because clearly none of us can sit in agony all the time, and if you knew Margaret, then you knew she had a great sense of humor. The disease never stripped her of that, amazingly! Because in all honesty if I were in her situation, I am not sure I could have been as introspective. Perhaps it is who I am or just what our relationship was all about, but Margaret and I always talked about feelings openly. So not addressing the underlying issues about the crisis at hand seemed disingenuous and I always wanted her to know I was there to listen and to try to understand. She knew this and understood this and I imagine this is why it was easy to cry together. But crying is an important emotional outlet and sometimes this is not something you can do with those you are closest to because you want to protect them from more hurt and more pain.
Yet in all our conversations, and no matter how sick and declining Margaret was, our talks were always TWO WAYS. She always wanted to know how I was doing, what I was up to, and she wanted to be a part of my life. That speaks volumes about her as a person and her character. A true friend and a special human being.
One thing is for certain though, Margaret had the best quality of life given her circumstances only because of the diligence of her husband and children who were by her side religiously. I am sure if you asked them, they would not even view themselves as Margaret's caregivers. They were there because of the love and deep connection they have for Margaret and yet as I know all too well, caring for someone so intensely has long term consequences physically and mentally. I know this not only as a professional (which ironically was my area of research study before Mattie developed cancer, caregivers of ill family members) but unfortunately from my very personal experiences of caring for my grandmother and Mattie.
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