I felt blue for the better part of today. It might be because I didn’t sleep last night. On the other hand, it could be because the sun chose to hide behind clouds. Whatever the reason, I decided to redirect or more accurately repurpose the blueness into some poetry.
Bargain with the Universe
The longer I’m sick the more friendships I lose.
I wasn’t a social butterfly before becoming ill. Although, I did have many friendships and acquaintances that crossed social and generational lines. However, a lot of those lines are fading or they’ve been cut by the people who once held the other end.
The friendships that have disappeared the fastest are work related. Networking is something I always considered important for career longevity. Knowing someone who knows someone has proved advantageous in many work and personal situations. Being able to trade favours or get support from a colleague can sometimes mean the difference between success and failure. There were many times over my career when I was able to reach out to connections I made years before to get much-needed help to complete a task or project, get invaluable feedback, or secure a new role.
Sadly, the longer I’m away from work those connections are fading or have already disappeared. When I first became ill I reached out to some of the colleagues that I considered more friends than acquaintances to let them know what was happening. With some of them there were lunches and coffee dates – time used for venting and brainstorming our way out of difficult situations – we would have to rebook. The news was met with concern and promises of visits or calls to check in on my progress. Those visits never arrived and I’m still waiting for the calls.
Relationships closer to home have suffered too. Friends I used to have lengthy phone conversations with, now text sporadically to see how I’m doing or if I have any updates about my treatment and recovery. The spontaneous meet ups for a good meal and lots of laughs squeezed in on a day when schedules magically align have evaporated into the ether; there are no invitations to girls’ nights out for dinner, drinks and dancing; and definitely no loud weekend hangouts.
At first I put the lapses in contact down to people being busy. Then I excused it by telling myself that some people aren’t comfortable or able to cope with serious illness. But I stopped coming up with excuses for people when someone I believed to be one of my closest friends suggested that we should take a break and pick up our friendship again when I get better.
That suggestion to push pause on a friendship knocked the wind out of my sails for a while, but it forced me to look at who has stood with me since the start of my illness. Which friends and family members answer when I call? Who gets up in the middle of the night to sit with me in the emergency room? Who rearranges their schedule to go with me to doctors’ appointments? Who checks to see if I need errands run or if I have enough groceries in the fridge? Who makes time to come over to hang out with me on my couch because that’s all I can do?
So, I recognize that friendships are dying. But the relationships I need are growing. I have friends and family supporting me in ways I never imagined I would need at this stage of my life. They remind me that my illness is not the thing that defines me and that if someone chooses to walk away from me now – when I’m most vulnerable – they probably had no right to be in my life in the first place.
Queen – You’re My Best Friend
I scream inside my head every time someone tells me I shouldn’t be feeling the level of pain I tell them I am or they try to downplay the seriousness of my condition before they have heard the details. I’m waiting for the moment when my head will explode because my in-head scream hits too high an octave for the membranes enveloping my brain to withstand causing my grey matter to splatter all over the next mindless person who dares to tell me how I should feel or act or what the norm should be. Maybe then they will hear me when I tell them I’m in pain.
Today that person was an Interventional Radiologist who deigned to tell me, before thoroughly reviewing my chart, that lots of people have my condition and it usually goes away on its own with time. What he had failed to glean from my chart was that my condition is an unusually rare congenital condition that never goes away on its own. The only fix for it is a complicated, sometimes life threatening, invasive surgery, and this condition is known to cause extreme pain in those who have it.
If he had read my chart he would have also learned that as rare as this condition is my situation is more complicated than most, which means my doctors can’t treat me within the bounds of the ‘normal symptoms’. This is the reason my surgeon is trying every possible non-surgical option before subjecting me to a surgery that may not relieve my pain but could cause serious post-operative complications that would further diminish my quality of life.
I wish my in-head scream had caused my brain to explode all over his pristine, white lab coat. At least that would have provided me with something to be upbeat about after his attempt to perform a procedure to reduce my pain failed.
Today I leave you with what it kinda a sounds like inside my head sometimes
The Screaming Sheep (Original Upload)
My Small Surrenders 