Tonight's picture was taken in January of 2009. Mattie was home and completed his trip to New York City, to start his experimental cancer treatment. One of the activities we did with Mattie, was we took him to the Empire State Building! To the top floor! Mattie had an amazing time, and we made memories I will never forget. After our tour to the top, we went to the gift shop, and Mattie wanted to buy this erector set. To this day, this model remains in my office. It symbolizes our trip together, it reminds me of Mattie's incredible strength and spirit, and it reminds me of a better time when we were a family.
Quote of the day: Nothing is ever really lost to us as long as we remember it. ~ L.M. Montgomery
I have been reflecting a lot on the whole notion of memories. I don't know about you, but I for one have a brain that locks in on negativity over positivity. The recall of negative memories has been said to be linked to an evolutionary defense mechanism. After all, if you are living out in the wildness, remembering what animals you have come across that have threatened your safety, would be a good memory/skill to have. If you can remember your triggers for danger and fear, then you are most likely going to be able to avoid an attack and survive. But for us humans, dwelling on negative memories can sometimes lead to anxiety and depression. I have seen this within myself, both with Mattie's diagnosis, death, and my divorce.
I was reading a study published in 2021, that had 297 participants who took part in a series of memory tasks where they were asked to recall positive aspects of a negative memory. This recall was done either through writing or verbally, over periods of 24 hours, one week and two months. The researchers observed that through these tasks, the participants were able to shift the focus of their negative experiences to more positive ones. This led to beneficial changes in how these events were remembered, even two months later.
When I read this, it confirmed ONCE AGAIN, why I write this blog! I may not have taken part in this memory study, but I can definitely say that by writing for 16 years, it has helped me manage and cope with all the fear, anxiety, terror, exhaustion, trauma, and grief associated with Mattie's diagnosis and death. If you go back and look at the blog in its early years, you will see that I reported out (rightfully!!!) the negativity associated with Mattie's daily struggles, the horrors of his treatment, and the treatments side effects. Of course when Mattie died, for years, I was struggling with what had happened to Mattie and floundering to figure out who I was, why I was still alive, and whether there was a point going forward. As I kept writing, I was able to absorb all that pain, and at the same time, look at photos more comprehensively and see the beauty of the situation.
Well look at this photo! This was Mattie's last admission to the hospital. Mattie chose to go back to the hospital to die. He did not want to be at home, because he felt that people in the hospital could help him more effectively. I also think he understood that we needed the support of our health care team as well. Such a smart boy. As you can see, Mattie was sitting in bed. He had a black box, which was a pain pump attached to him and he was on oxygen. In 2009, when writing about this moment, and for several years there after, I was absorbed in the negativity of the moment, the horror, and the pending grief! Over time, I am not saying that feeling went away, it NEVER will, but what was added to that feeling was also a positive feeling. What was positive? Jenny, the young woman you see in the photo. Jenny was Mattie's art therapist! An absolutely phenomenal professional and person. That day, like so many others, Jenny was working her hardest to redirect Mattie and to engage him in a life affirming activity... playing with his dinosaurs. It takes a very special individual to be able to sit with us during this life threatening moment. What I see in this photo now (besides pain, grief, and pending death) is camaraderie. I was NEVER alone. Mattie had a way of attracting amazing people into our lives and Jenny is one of those gifts. Would I have been able to get to this expanded memory without years of writing? Absolutely NOT!
Switching from memories, I know many of you are writing to me asking HOW AM I? You have been used to me reporting out on my days. Well today was a day that I actually was proud of myself! Why? Well I need to find a new health insurance plan for myself. This was NOT something I ever had to figure out for myself before. So because this was a new and scary notion for me, I have pushed the problem out of mind for weeks. But as I mentioned my mind focuses and worries about the negative and to me, potentially being without health insurance in the spring, sends me for a panic. I have been trying to investigate how to find a health insurance plan now for over a month. My neighbor suggested I hire a health insurance agent. After looking into that, I said NO! I do not want to relinquish control of my healthcare insurance choices to someone else. Instead, I want to be in the driver's seat, knowing exactly what is out there and what my options are.
So that meant I had to find out about whether I wanted to get healthcare through the market place or off market. Today I pushed through my fear and reached out directly to a health insurer. I was connected to a healthcare insurance agent that works directly with a big named health insurer. She was a God sent. Really an angel. She spoke to me for an hour! An hour I tell you!!! She educated me about the market place (which really ONLY works for people who are employed, so I have learned!), and after much discussion, we moved to off market options. She was kind enough to look up each of my doctors to make sure they were in-network and then she gave me her direct email. She sent me all the documentation we discussed by phone and I have 30 days to make a decision.
After speaking with this kind woman, I called another well known health insurer. I wanted to verify the information about market place versus off market place insurance and to see the cost of an equivalent plan through this other company. Well this second health insurer representative was a piece of work. The exact opposite from the first representative. However, that said, she did confirm that I had the correct information about market place versus off market place and then she tried to push a plan on me that I was NOT comfortable with. A plan that would limit my choices on providers and access to specialists. In fact, we got into an argument over this, as she said, why wouldn't I want a plan that offers a lower premium per month? Sure who wouldn't want a lower premium per month, but what gets compromised in the process? I think my numerous experiences with healthcare has instilled in me that a patient needs as much control and access to care as possible.
My point to telling you all of this is it has been more than a year of firsts for me! Doing anything that is new is scary and frightening. But I pushed through that uncomfortable feeling today and advocated for myself. I am great at advocating for others, but I turned that skill inward today, and what I figured out is YES, I can learn things that I have NO IDEA about, I can ask intelligent questions, and I can make sound decisions for myself. Well that was an empowering moment, and I assure you most days I don't feel empowered and I don't feel in control of my own life. So I acknowledge the moments when I see the positive.
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