Tonight's picture was taken on December 5, 2002. Mattie was 8 months old and it was the first snow fall we received in DC that year. Of course for Mattie, this was his very first snow fall period. I dressed Mattie up in his Santa suit, we dragged out his entertainment saucer and placed a festive blanket over the plastic. This provided the perfect atmosphere for our first family Christmas card that year.
Quote of the day: Long-term distress symptoms were elevated more than 9 years after a child’s cancer diagnosis, clinical cut-off scores in the parents of children with cancer group being close to those of patients experiencing cardiac arrests. ~ Eygló Guðmundsdóttir
In October of 2017, Peter and I presented at an International Conference held in Washington, DC. However, before our presentation that day, I decided to sit through all the morning sessions for multiple reasons. First, I like to be up to speed on the cutting edge childhood cancer psychosocial research that is out there, but second I believe it is important to know something about the audience I would be presenting to later that day. Therefore, sitting through morning sessions helped me assess the group, their experiences, interests, and where they worked and in what capacity.
I am telling you this, because it was in those morning sessions, I met Eyglo Guomundsdottir. The woman who I quoted in tonight's blog. Eyglo, at the time was obtaining her PhD in psychology in Iceland. Unfortunately, we share the loss of a son to childhood cancer and she told me she wanted to devote her research initiatives to helping children with cancer and their families. What bonded us at that meeting was the fact that both of us were vocal about a particular research study presented to the group. We felt the researcher did not ask parents of children with cancer more in-depth and poignant questions, but the researcher's interpretation of the data she collected indicated one thing to both of us..... she had no understanding for the population she was working with! Both myself and Eyglo called this out. I am sure the researcher wasn't thrilled with us, but what we were hearing was so egregious we felt the need to advocate for families like ours right in the middle of the large conference room.
Recently Eyglo shared with me a link to a power point slide deck she showed at a conference in Japan. I included it below. Eyglo shared it with me because she wanted my perspective and input. I have to admit that Eyglo introduced me to the term "vital exhaustion." It is a European term in reality that provides a new name to what we would once deem a nervous breakdown. Here's the definition of Vital Exhaustion.....
Vital Exhaustion (VE) has three defining characteristics: (1) feelings of excessive fatigue and lack of energy, (2) increasing irritability, and (3) feelings of demoralization. People often attribute these feelings to overwork, or to problems at work or in other important life areas that the person has not been able to solve, or to a real or symbolic loss. Therefore, it has been suggested that VE is a mental state at which people arrive when their resources for adapting to stress are broken down.
The concept of VE grew out of an interest in understanding the mental state of 'undue fatigue' and 'lack of energy,' a state that, according to the cardiological literature precedes myocardial infarction (MI) and sudden cardiac death. The prevalence estimates of fatigue before these events vary from study to study but range from 30 to 60%. The exact nature of these feelings had, was not studied in depth prior to VE.
Eyglo's study found the following:
- Parents' whose child was diagnosed with cancer, scored higher levels of VE compared to parents with healthy children.
- A strong relationship was found between VE and traumatic stress.
- Long-term distress symptoms were elevated more than 9 years after a child’s cancer diagnosis, clinical cut-off scores in the clinical group being close to those of patients experiencing cardiac arrests (the score being 20).
- This suggests that parents of children with cancer could be at elevated risk of developing different physical complications over time (as well as developing severe psychological problems).
I found this study fascinating because I experience moments throughout the year in which I feel chronically tired. Absolutely exhausted. Exhaustion that doesn't coincide with my age. I never put two and two together to decipher that the long term effects of childhood cancer could be expressed in this capacity. I remember Mattie's 14 month battle and I also remember thriving on little sleep, poor nutrition, and constant intense stress. It set up the dynamics for the perfect vital exhaustion storm. Just like a hurricane which attacks and ravages communities and it takes years to recover and rebuild, this same storm analogy can be applied to living through Mattie's cancer diagnosis and death. Cancer and the death of a loved one are devastating, they can produce vital exhaustion, and these feelings seem to reverberate impacting one's body and mind for years to come.
Link to the study: Parental Vital Exhaustion Study
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