Tonight's picture was taken in September of 2008. This was a day I will never forget. I am sure if I flashed this photo in front of Peter, he would immediately remember where we were too. We were sitting in an office waiting to see an orthopedic surgeon at Memorial Sloan Kettering Hospital in NYC. Mattie had already started treatment at Georgetown Hospital by that point, but we went to Sloan Kettering to try to enroll Mattie in an experimental treatment for osteosarcoma. In order to get enrolled we had to meet with the primary investigator in person and if Mattie qualified for the study, the first infusion would need to occur at Sloan. Subsequent infusions were administered at Georgetown. I should specify that this experimental immunotherapy that Mattie endured occurred twice a week for seven months straight. It too had a host of side effects in addition to the ones Mattie endured with chemotherapy and surgeries. In any case, while we were at Sloan we made an appointment to talk with an orthopedic surgeon to get a second opinion about Mattie's pending limb salvaging surgeries. These surgeries sounded so daunting that we wanted to make sure we were making the right decision. Well this prima donna (the best description for this surgeon!), kept us waiting for two hours with a six year old in tow. When he did grace us with his presence, he only had FIVE minutes to spare with us since he had to run off to a SOCIAL engagement!!! Five minutes given the nature of Mattie's illness was hysterical and insulting. Any case, when he walked into the office to talk with us, he was talking about the surgery in quite a graphic manner, with Mattie present. I literally stopped him from talking and brought Mattie to the waiting room to sit with my parents and Karen. When I returned, the surgeon literally sat in his chair for two (of the five) minutes SILENT! We paid for this silence. In any case, after the silence (in which he looked thoroughly perplexed with his head in his hands), he proceeded to tell us that Mattie's situation was grave and if he were us, he wouldn't do ANYTHING. NO surgery and no treatment, but move to end of life care. You can imagine how this went over with both Peter and I. So when I see this simple photo, all I remember are the memories of sitting in that horrid office, and yet despite all of that we worked very hard to keep Mattie smiling that day.
Quote of the day: Pain is not pathology. ~ Robert D. Stolorow
I woke up with a massive headache today and it has remained with me all day. I am used to daily headaches but several times during the month I have headaches which are so excruciating it is hard to keep my eyes open. Today was such a day. Nonetheless, I try to move through the pain and function. I have had this issue since Mattie was born, so I have had a long time to develop coping skills for it. I am left with no choice considering modern medicine is unable to assist headache sufferers like myself.
My friend in cancer sent me an article yesterday from Psychology Today. I attached the link below in case you want to read it. The article is only a couple of paragraphs long but it makes an interesting point about the history of grief. Or should I say the history of pathologizing grief, which has been occurring for centuries. No wonder we live in the 21st century and have yet to make much progress in understanding loss and bereavement. How can we, when from generation to generation grief has been conditioned to be a taboo subject.
But even worse than taboo, in the 12th century, if you experienced grief over the death of a loved one, you were considered SELFISH. That's right selfish!!! Selfish because instead of feeling happy and rejoicing that your loved one was in heaven and obtaining eternal life, you were instead grieving which really is the effect the LOSS has on YOU. Such an inward display of feelings was considered selfish.
Moving passed the selfish mindset, we then transitioned into the stoic one. During the age of enlightenment, which signified the dawning of our modern world, the thinking was that sadness and grief could cause serious physical illnesses, and therefore to ward such an illness off, one needed a form of mental discipline to survive... in other words to be stoic. Not to reflect on feelings and to talk about the loss. It is NO wonder given the history of grief we are still screwed up today.
Moving ahead to today's day and age, we continue to pathologize grief. It may not be labelled as selfish, or stoic, but it is nonetheless pathologized. Apparently one can't just grieve to grieve. Instead, the pain associated with grief is given clinical labels now such as depression and anxiety. Both are clinical issues which unfortunately are typically diagnosed by one's primary care provider and then quickly managed with a prescription. I say unfortunately because the mental health training of primary care providers is not adequate or sufficient. Certainly some forms of grief are in need of a diagnosis and clinical care. Yet, many are not. But feeling pain, feeling emotions, and expressing our thoughts and feelings to others over our loss of a loved one is considered odd and unnatural in our society. Meaning the griever is the one with the problem! I fear that with the change in the DSM-V coding (which is basically the diagnostic and clinical guidebook in our country to defining, labeling and treating mental illness), it will be much easier for a professional to label someone who is grieving with a clinical diagnosis (in other words pathologizing the issue). Thereby instead of addressing the grief at hand through talking, reflecting, and learning to cope with this journey, grievers will be introduced to another host of issues...... a diagnostic label and potentially psychotropic medications. Neither of which will ultimately help the typical griever. Grieving the loss of a child is a life long process and no amount of labels or drugs can take away the inevitable.
This article is not just a history lesson for me, it is my reality. I have constantly been labeled by friends as having a PROBLEM. I mean even early on within the first year of losing Mattie. I had people who wanted me to seek treatment, see a doctor, you name it! It is a sad commentary that we live in a world in which those around us feel the need to isolate us because we make them uncomfortable. It seems to me that our society rewards those who bottle their grief up inside! Yet bottled up grief has long term negative consequences for the individual and for those around the individual.
There is no easy fix to this complex societal issue, but I do think the more people we interact with who have suffered a profound loss, the more likely it is that we will see that pathologizing away the problem won't work. The number one way to manage and process grief is by LISTENING to it and helping the griever keep the memory of the person who died ALIVE.
http://www.psychologytoday.com/blog/feeling-relating-existing/201402/the-war-grief
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