It's 1015 in the morning and I'm lying on my bed surrounded by all the materials needed to make up for the missing pieces in my plumbing anatomy. There is a very cheerful nurse by my side who very patiently works with me to put humpty dumpty back together again. This is a ritual that is carried out two to four times a week. Sometimes it is a home health care nurse helping me and other times it is Tina. After 30-45 minutes I am good to go and life gets back to "normal".
There is also the evening routine of not only hooking myself up to TPN but also getting Tina's help to inject me with a blood thinner and every other night to change my Fentanyl patches.
These daily and weekly routines and let alone my four month stint in hospital have left me with the thought that this life of mine right now ain't normal. I've noticed when I focus on this I start to feel down (heavy, sad) as I think somehow that my life isn't measuring up to what everyone else's life is and that I am missing out... as my life doesn't match up to those of the people I know and more importantly it doesn't match up to this mythical and illusory definition of normal that is put forth by society, media etc...
As an example... when I am in the middle of a dressing change I am acutely aware that I know of no one who has to do this every 2-3 days with such a complicated set up and I feel down and frustrated and a bit lonely as I know that in addition to this being an annoyance to deal with I also believe it to not be normal.
So what do I think is normal? A 35 year old should have a job that allows him to provide for hisfamily (this would also mean that Tina and I by now would have a kid... grrr) and one which provides room for career advancement. It would also mean that she has a body that allows her to be physically active with no devices attached to herbody. It would also mean that home health care nurses, surgeons, oncologists, and gastroenterologists would just be words in a dictionary... not people that I know by name and have seen multiple times.
Okay I am shoulding all over myself.
And this is obviously not my life at the MOMENT. It is also not the life of the average person living in Sudan... or the villagers in Afghanistan or the Pacific Islanders who are fighting to keep their villages from being wiped away by climate change.
If I accept that normal means the experience of the majority of people on this planet then my definition of normal is not accurate all...
If it is the experience of a specific socio-economic group... say white males born into good families with good genetics my definition of normal MIGHT be accurate. As far as a helpful tool to determine happiness I'm not so sure it is very robust... For instance when one meets his or her definition of normal it might contribute towards his or her happiness AND when one falls short it would be of no help at all.
So do I need a new definition of normal? Or should I scrap the concept all together?
What strikes me is at best there are many many many different definitions for a normal life and each is determined by geography, socio-economic factors, and genetics. Writing this it sounds so simple to me and I have thought of this before. What's different this time around is living a reality where my day to day experience of life is definitely different from society's definition of a normal life and what life is like for my friends and family (I am not saying that the challenges I face are harder or more difficult than others or that others don't have challenges, simply that mine are different).
For me I find it comforting and freeing when I remind myself that there are many many many different realities or definitions for what a normal life is and many of these involve challenges much more difficult then the ones that I am facing. And while this thought does involve my comparing my life to others it is also a pathway through to gratitude for me as I do feel relief in my body, a letting go, a sinking of my body into the softness of the Earth when I realize that my challenges are not so great.
An alternative way to look at this craziness associated with the gap between what society's definition of normal is and my day to day reality is the cognitive dissonance I am experiencing between my ideal self and my real self. For example my ideal self would feel ready to start working and this would be a great distraction and help me to heal where as my real self is feeling full enough with coming to grips with what happened over the winter and adapting to my new anatomy and simply healing. Life isn't what I think it should be and with this I feel sad and anxious as well as frustration and anger directed towards myself.
I learned of this concept through two sources.... the first was a book called Compassion and Self Hate: An Alternative to Despair and the second was through many courses at a place called The Haven on Gabriola Island. They have a good summary of this in their Selves Model (scroll to page two for the diagram).
So in addition to the pathway to gratitude that I described earlier how else do I find my way through this dissonance and the associated feelings? Having awareness of what my ideal self looks like helps as then I can know when I am shoulding all over myself. After awareness I am finding what helps is to ask myself given the facts of the situation what is something I can expect of myself that has the most self compassion in it.
As an example... and something I am working on at the moment is this part of my ideal self that thinks I should be a contributing member to society. That I need to be engaged in some form of work that is giving back to the community because this is what a 35 year old is supposed to do and because this would provide a distraction for me from the sometimes unpleasant medical side of my reality. And at the same time of shoulding all over myself I feel doubts about enacting this plan and find myself in this barren middle ground sitting on a fence with feelings of anxiety, sadness, and frustration.
When I find myself in this place I am working on reminding myself of the facts: I am only two months out of hospital, I am on treatment for desmoid tumours, I am regaining my strength, and that I already help to operate a farm that will provide veggies to 26 people. And that what I most need to do is give myself permission to rest and heal. This doesn't always work and I'm hoping with time that this type of self talk will... that as I exercise this muscle it will become stronger and I will spend less time on the fence in no man's land. Talking to Tina, friends, and family helps too; helps huge.
Dan and Company
We got this... This has been the mantra of Dan's friends and family as they help him navigates a difficult medical rodeo ride. This blog contains entries from Dan as well as his friends and family.