Tonight's picture was taken in February of 2009. This was a typical physical therapy session in the hospital hallway with Mattie. He would definitely participate, but only after we did the exercises first. Especially if it were a new activity! So Anna (Mattie's physical therapist) and me were on the floor playing twister and Mattie was calling out the moves! My goal was to get Mattie engaged, socializing, and willing to try the necessary movements to rehabilitate. Therefore, if that meant getting on the floor, you bet I was going to do it!
Quote of the day: When your day is a museum of disappointments, hanging from events that were outside of your control, when you feel like your guardian angel put in his two weeks notice two months ago and just decided not to tell you. ~ Rudy Francisco
Today was another winner of a day! In a long line of NOT good days actually. By 5pm today, I truly had just about had it, and what I wanted to do was go upstairs, get into bed, watch TV, and not move for the rest of the day! There are times in my life now, when I feel that NO ONE understands me. NO ONE gets exactly what I am facing each day, and instead, I have people all around me, who just seem to add to the problem.
Naturally in my house, there is NO going upstairs, NO resting, and certainly if I am not cooking and preparing food, there will be NO dinner. So that isn't a realistic wish to go to my room. What I find, as has been true all my life, that when I am overwhelmed, I revert to a whole bunch of self talk! Literally I talk to myself, both in my head and externally. Depending upon how bad the problem is, you will actually hear me talking!
As odd as that may sound, talking to myself is therapeutic. I came across this NY Times article entitled, The Benefits of Talking to Yourself. You may want to glance at it, if you are a self talker like me! Research indicates that self talk influences our behavior and cognition, and there are two common types of self talk.... talk that is instructional and talk that is motivational.
I can't say that I do much motivational self talk but I sure do a lot of instructional talk. For example, this week alone, while working on putting together the Foundation's Walk website, I landed up talking to myself, especially when I was working behind the scenes with our tech folks who were trying to instruct me on how to do something. I literally repeated the steps being conveyed to me, while I followed each one and revamped the website. But a type of self talk that isn't mentioned in this article is the self talk that is used for venting. If I did not talk to myself and verbalize a way out of an emotional problem or crisis, I most likely would be physically ill. That is how much stress I live with and navigate through each day.
When Mattie was diagnosed with cancer and throughout his cancer journey, I would say that I was surrounded by his incredible healthcare team and our Team Mattie community. I most definitely was living with 24/7 life and death stress, but I never felt alone. Of course it was hard to feel alone, when we were living in a pediatric intensive care unit. However, once Mattie died, the isolation began! That was when my existence and my circumstance became frightening to those who knew me. I will ALWAYS remember friends seeing me shopping in a grocery store and literally they would turn around and run the other way! They did not know how to deal with me, so it was better to ignore me. I also had two friends who I knew for longer than 15 years, who also abandoned me. When I asked why they no longer talked to me, they literally said, "because your loss is making ME sick!" Truthfully you can't make this up, and I can't tell you how this compounded the loss I was already feeling.
So when you lose your support network, what do you do? When you live a life that most people can't relate to, then what? I really do not have an answer to these questions and the answer maybe different for each of us. But while I try to brainstorm my way through these existential crises.... I talk to myself! Sometimes in talking to myself, I ask for God and Mattie's intervention. I ask for guidance and support, because at times things are just so overwhelming that I really do not think earthly support truly cuts it. The serenity prayer is never far from my mind, because it is simple and yet deeply meaningful.......
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
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