Quote of the day: "The world of reality has its limits; the world of imagination is boundless." ~ Jean Jacques Rousseau
Mattie had a hard time falling asleep last night. He was complaining of intense stomach pain that seemed to radiate throughout the rest of his body. Needless to say he had another restless night of sleep on Wednesday. Mattie was up multiple times during the night to use the bathroom, and despite having a bad night of sleep, he was up early this morning.
Mattie had a very busy day in clinic today. When he arrived, he was greeted by his buddy, Jocelyn. Jocelyn changed her clinic days to Thursdays, so she could spend time with Mattie. I find this incredibly thoughtful and special. As many of you know, Jocelyn is a young adult with Osteosarcoma. She is a great role model for Mattie, and has such a positive outlook on things, despite the fact that her cancer has reoccurred. Jocelyn spent several hours with Mattie today, and she got to see him playing with Maya as well as perform a magic show with Bob Weiman, Mattie's head of the lower school.
Some of my readers may remember Maya. Maya is also 7-years-old and we see her occasionally in clinic. In the past, Maya and Mattie painted a clinic ceiling tile together of a train and the greatest story which I will never forget is how we met Maya. Maya was sitting at the art table with Mattie and several other children several months ago. Mattie wasn't engaging with ANY of the other children. Maya then sat down at the table and told the other kids that her arm hurt from being stuck several times with a needle in order to start her IV. Mattie was head down in a project, but after Maya finished speaking, Mattie looked up and told Maya that he knew exactly how she felt. That actually stunned me, because normally Mattie is ALL business at the art table, and emotional connections are not his top priority there. But there was something about Maya that caught his attention. Since that time, they have been good buddies! In fact, she is the only child in the clinic that Mattie can relate to. I think this is interesting to note. So I was thrilled that Maya was at clinic today as well.
When we arrived, Mattie, Jocelyn, and Maya started on a joint art project. Mattie brought something from home that he thought looked like a pearl. So he had everyone designing oysters today, or in other words a home for the pearl! This kept them focused and busy, until Bob arrived. The magic show was a big hit with Mattie, Maya, Maya's brother, Zachary, and other clinic staff. They all had a good time together, and I think Jenny (who was nice enough to take pictures for me) caught some great photos of the show!
Left: Mattie and Bob preparing Maya and Zachary for the next trick. Can you guess what came flying out of this potato chip canister? Good job if you guessed a snake! Everyone jumped!
Right: I am always amazed when Mattie decides to perform this ring trick. I have to tell you this isn't an easy trick. But I think Mattie and I love this trick because Bob used this trick or I should say prop to propose to his wife. This is a story that has stuck with us this year. Needless to say, I was impressed that Mattie performed the trick, and you can see Bob smiling on the right, watching the other kids' reactions.
Left: Maya and Zachary are inspecting the ring that was used in the ring trick! Everyone was very engaged with the process.
Right: Bob performed an imaginary card trick for all of us. Bob gave an imaginary deck of cards to Jocelyn. Jocelyn (sitting on a stool behind Mattie) had to shuffle them, and then had to pick out an imaginary card (or basically had to think of a card, but of course Bob did not know the card she was thinking about, none of us did)! Bob then told us that the imaginary deck of card jumped into his pocket. So he pulls out the deck of cards from his pocket, opens them up, and in the deck only one card is faced down. So Jocelyn pulls out that card, and indeed it was the 3 of hearts, the card she was thinking of. I don't know how Bob did it, and in my tired state, I can't even think this through. It is too bad that Peter wasn't there for this, because Peter loves to dispel the illusion behind the magic.
I would say the magic show was a positive experience for Mattie and definitely a way to connect him with other kids in the clinic. I appreciate Bob's time, energy, and commitment to our family. We all had a wonderful chat with Bob after the show was over, and Bob introduced me to an actor by the name of Sacha Baron Cohen. As you can imagine I am out of touch with mostly everything happening in the real world. Bob and Jocelyn were telling me about some of his movies and the premises behind them. It got me thinking about what our culture's fascination is with reality TV. Or in essence with seeing people's inner thoughts and feelings exposed to the public. Of course in many cases it doesn't sound like Sacha Baron Cohen's interviewees realize that the controversial things they are saying will be televised for the world to see. It is an interesting study of human nature (though definitely a rather unethical and devious way to capture such information). Do we say and act differently when we think others are watching us? Or are we consistent? I certainly can't comment on these movies because I haven't seen them, but I wonder by exposing people's biases, hatred toward certain religions, and people, what does this accomplish? Sure it could be a great academic exercise to discuss the fact that anti-semitism, racism, and other biases still exist in our world. But the bigger question is, okay, it is great to uncover these notions, but now what? What is the next step? I think it is great to uncover issues, but not great to leave them hanging there unresolved with no productive way to process them and address them. Exposing such topics for humorous purposes isn't too funny to me! As I told Bob and Jocelyn, I am in a place right now in my life, in which my lens on things is VERY skewed or distorted. I have witnessed and seen some of the worst things life has to offer this year, and I guess I feel as if exploiting and exposing others for their beliefs and putting it out there for the public to see makes me uneasy. Not because of the subject matter being discussed, because if such information gets conveyed in a powerful and meaningful way, great, but I can't help but think of the deception used in order to capture this information. Over the course of these last 12 months, I have learned that being vulnerable BY CHOICE, and open to sharing your story and inner feelings, in the end is what achieves a better understanding of one's self, one's friendships, and the amazing school communities I am a part of. The key is by CHOICE. To me nothing of great meaning gets accomplished through deception, or at least meaning that produces actual change. So I guess what I am saying is open dialogue and sharing of beliefs is powerful and beautiful when done for the right reasons and purposes. You can see the dialogue that Bob was having with us today got me thinking. Thank you Bob for your visit, it was stimulating for both Mattie and me.
After Bob left, the art table was a flurry of activity with another project. Mattie, Maya, and Jocelyn decided to design a farm out of a large cardboard box. Jocelyn helped them create a barn, and the project took on a life of its own. So much so, that Maya and Mattie performed a play for us. They had Jenny get out their solar system box that they created a while back, and they placed the solar system box near the barn. Apparently the space creatures were invading the barn today. It was a great play filled with lots of musical numbers!
Left and Right: Maya and Mattie performing with the solar system box (the box with the red curtain in front of it) and Jocelyn's barn.
As 3pm came around, Anna arrived in clinic with Marisa (a PT intern). I am not sure who got more therapy today, Mattie or Anna. Mattie had Anna scooting around the clinic after him, and Anna also got Mattie to step up on a step stool today, while I was playing the game Battleship with him. Naturally I was losing! Seems to be my lot in life.
Left: Anna and Mattie racing. Marisa is pushing Mattie's MTP IV pole, and Maya is in the background serving as the judge of the race.
Right: Mattie is getting a kick out of cutting Anna off with his NEW wheelchair.
About an hour after Mattie received MTP-PE, he started having the chills and getting very tired. He fought off the need for sleep as long as possible, but when Dr. Gonzales came out by the art table and saw Mattie, she knew he had to lie down. However, there were no clean beds available in clinic. But that did not stop Dr. Gonzales. She is a woman after my own heart. She went into one of the rooms, tossed out the cleaning person, and literally changed the bed herself, and helped me get Mattie into bed. She has actually helped me in this way several times before. My joke with her is that who knew she would go to medical school to eventually make up beds for her patients. I am joking, but also serious at the same time. I admire a person who is humble enough to do what is in the best interest of her patients, and puts her degree and title aside to get the job done. Mattie got into bed, and complied with the entire examination. I was very proud of him, and yet in awe of the connection Dr. Gonzales has with Mattie.
Dr. Gonzales and I spoke about several things today. One of which is Mattie's intense stomach pain. It appears that Mattie could have either gastritis or an ulcer. Certainly there are invasive tests such as an endoscopy that could be performed to confirm such diagnoses, but we are all hesitant to perform these right now (I appreciate Ann's e-mail to me today, who basically helped me stick to my initial thoughts which is to avoid invasive testing unless absolutely necessary). So the goal for this week, is to treat Mattie with prevacid, and see if that helps the stomach pains. None the less, we still have the issue of a lack of appetite to contend with. We spoke about Marinol, which you may recall is a FDA approved drug to stimulate immunocompromised patients' appetite. However, some patients do experience an outer body sensation when on this drug. So frankly I am not willing to test it to see if Mattie falls into this small percentage who develops this side effect. We will need to come up with a solution soon, because I am being told that Mattie's appetite should have come back by now.
In addition, to discussing Mattie's weight, we also discussed Mattie's alkaline phosphatase level. Alkaline phosphatase is an enzyme made in the liver and the bone and is used as a way to monitor bone problems such as rickets, osteomalacia, and bone tumors. Peter told me that last week Mattie's alkaline phosphatase level was sky high. This concerned both of us, because this may be indicative of cancer. However, this week it is back down to the normal level, so we can only assume or hope that last week's blood test gave unreliable results.
Mattie and I got home after 6:30pm, so we spent over six hours at the hospital! We want to thank the Doane family for a wonderful dinner! We can't thank you enough for your continued support and care for our family!
I would like to end tonight's posting with a message from my friend, Charlie. After her message, I would like to share an article Charlie sent me today, that I found fascinating. Thanks Charlie for giving me the language or diagnosis that helps to describe my issues and feelings! Charlie wrote, "Reading the blog each day is something of an adventure. I always wonder where Mattie's imagination will take us. It is clear that we are exploring a couple of themes here; one is bugs (definitely a fascinating subject) and the other is soup. This is interesting since the soups that Mattie is creating these days tend not to be very nourishing but rather something that would be rejected by the recipient. You are doing a great job of helping Mattie face his concerns about going outside and of doing therapy. I agree with you that Bob W.'s suggestion about having people regard Mattie for positive reasons is a very good one and will likely help with self esteem issues. It also gives Mattie another arena where he can be successful at something others may not be able to do. I think he is sensitive to the fact that he cannot do a lot of things other children can; I also think he will not try to walk or do things he is not convinced he can (he does not want to try and then to fail) so trying the harder things earlier in the therapy session when his energy levels are higher is a good idea. I wish you a good day in the clinic with lots for Mattie to do and hopefully a good night's sleep for you."
Here is the article Charlie sent me today from the Caregiver Wellness website. I most definitely have Chronic Sorrow without a doubt, and can relate to the activities and feelings expressed in this article wholeheartedly!
Chronic Sorrow or Depression....? Jan Spilman, MEd, RCC
This morning, I read a piece on family caregivers in the New Brunswick, NJ, Home News Tribune. It quoted an article in the American Journal of Public Health saying that family caregivers experience depression at a rate six times higher than non-caregivers.
I wondered, as I read the newspaper piece, whether the researchers had considered chronic sorrow in their assessment of the caregivers' moods? Would such a differential diagnosis have altered their findings?
For many of my caregiving years, I countered the concerns of my family and friends with an emphatic, "But I'm not depressed!" It's true that I had no energy, but who would if their sleep was interrupted every night? And I cried whenever I found a moment of quiet, (usually in my car driving somewhere), but I also had days of intense pleasure and beauty. My weight had gone up but that was because I was eating copious carbohydrates to counter the constant tiredness and I had a foot injury that had interrupted my usual exercise program. As far as I could tell, I wasn't feeling much differently from anyone else who was caring, long term, for an ill family member.
When I finally came across the writings of American psychologist, Dr Susan Roos, (Chronic Sorrow: A Living Loss), and of the Nursing Consortium of Chronic Sorrow Research I breathed a sigh of relief. They were describing my experience exactly and they weren't calling it depression.
Chronic sorrow is neither clinical depression nor chronic grief. Rather, it is the normal, but often unrecognized or misdiagnosed set of grief responses experienced by people with chronic conditions and the people who love them. Because this chronic condition is ongoing, so is the sorrow. Susan Roos describes this endless loss as a "living loss" that persists until the person with the chronic condition has died.
At the core of chronic sorrow is the aching discrepancy between our perception of how life is and "how it should have been." This discrepancy leads to a sorrow that is profound, pervasive, and periodically very intense.
Contrary to the experience of clinical depression, though, our daily functioning is rarely affected. We maintain access to a full range of emotions and our spirals into intense sadness are intermittent in nature, often triggered by anniversary dates, missed developmental milestones or recurrences or worsening of our loved one's condition.
Because the source of our sadness is not "resolvable," neither is our grief. We can't expect ourselves to "get over it" or "just get on with our lives." Antidepressants are not the answer unless we're actually depressed. Nor is psychotherapy focused on uncovering the traumas of our childhoods. (Though this can be helpful at another time.)
What many of us find most helpful is "companioning" with empathic support and help with problem solving. Someone who will "be" with us, in our sadness and in our joy. Someone who will walk the journey with us without trying to fix the unfixable.
That is not to say that therapy is unhelpful. A skilled grief and trauma therapist who understands the difference between depression and chronic sorrow can be an excellent "companion" and a godsend. While I don't believe it is possible to "cure" chronic sorrow, it is possible to find healing in the journey - a resolution of posttraumatic stress symptoms, the development of wisdom, a refined appreciation for life, the growth of spirituality and meaning - and that healing can be our goal.
