There is a certain type of grief that comes with becoming chronically ill.
In my previous life, I used to pride myself on the fact that I wasn't on any medications and could go years between visits to the doctor. After diagnosis things were very different as I rode the seemingly never ending downward spiral. By the last 6 months leading into surgery, I averaged between 1 and 2 medical appointments a week, and had a medication regimen that included IV biologics, antidepressants, hormones, steroids and opioids. And none of it was working, things only ever got worse.
I think it is the loss of our previous self that we grieve when we become chronically ill. Forever two separate lives - the realization of everything we once took for granted, and a newfound perspective that can't be unseen.
Somewhere in between the time when surgery was brought up as an option, and the day I made my decision (21 days), I saw a practitioner who believed a factor in my illness was unprocessed grief.
I went to the appointment in part because it was important to someone I care for deeply, and in part out of my own fears that future me might realize I left a stone unturned.
Those 21 days were filled with so much uncertainty. Mostly because I still lacked all of the information needed to make an informed decision.
To compound my uncertainty, the notion that surgery was now a potential outcome seemed to bring out a new sense of urgency in people. There was a sudden surge in "have you tried" conversations with friends.
I know these caring friend's heart's were always in the right place, I know this because it's exactly what I do whenever someone I care about tells me about something difficult they are going through (although I'm beginning to question this approach and take the time to get consent prior to offering advice).
Sometimes humans aren't in a position to receive advice, or even looking for recommendations. In the state I was in, all it did was send me reeling into a pit of self doubt.
Did people think I was giving up too easily?
Was I giving up too easily?
Had I left a stone unturned?
The unprocessed grief theory was a compelling take. I am actually a big believer in the mind / body connection, and in particular the mind / gut connection. It was not a new concept to me, and I do not disagree that our past experiences can manifest in physical ways.
But also the red flags stacking up in the meeting with this individual were glaring and undeniable. The largest of which was a claim they could help me, without any explanation of how exactly they would do that, what to expect, how long it could take, or what it would cost. A request of blind trust.
My gut shouted at me to run far far away, and at the same time I wondered if perhaps this individual was right, they did seem confident in their approach. Maybe this was my unturned stone.
In the end my gut won. I settled on the fact that even if this person were correct in their assessment, the red flags were too much for me to overlook and it definitely wasn't the right fit.
If that practitioner had been right about one thing, it was that they had seen a grieving individual in front of them that day. What I believe they failed to grasp was that the largest and most present grief was not related to some childhood experience, but to the loss of my health in every aspect.
Had I followed every lead in those 21 days I think I could have easily spent my life savings. I don't believe it would have made a difference.
I settled on the fact that some people would not agree, and also on the fact that what other people think of me is none of my business.
Though it compounded my exhaustion and took me days to emotionally recuperate, I'm thankful I went through that particular experience because it showed me exactly what needed to happen next.
My only job from there on out was to show up for myself. The 2 rules of showing up for myself would be as follows:
Build a fortress
Become the priority
I started by building a fortress, an impenetrable, metaphorical fortress. To make my decision, the only people I wanted in my space were the ones who had proven themselves worthy of being inside by showing me they had my back. Period. I had come to a place where I simply had no time left for anybody who threw off my centre, made attempts at manipulation, drained my energy, or implied that I wasn't the sole person who had the power to make the best decision for myself.
Along with that came removing all non-essential work and social engagements. I categorized non-essential as anything that would drain me or raise stress. Instead I became my sole priority for maybe the first time ever. I finally saw very clearly that without my health, there was really nothing else.
Those boundaries were a big factor in being able to move forward with making my decision.
The decision wasn't made alone, but it was completely mine. I was blessed in that all of the people I chose to be inside the fortress, without having to be told, chose to not weigh in on my decision, but instead listened as I worked it out. That included Dr Z at Sinai who will likely never understand how powerful that consult was - his ability to give me all of the facts, and then listen with empathy while he gave me the time to make my own decision. My inner circle, even when asked, refused to weigh in - adamant that my decision had to be just that, 100% mine.
Once I made my decision there was an ever present fear of things becoming emergent before I could make it to my scheduled surgery. Emergency colectomy's are not as ideal for a long list of reasons, and we were all a little on edge waiting those 6 days. Somewhere along the lines, my mom came up with the idea of reframing things as a "countdown to healing".
Seeing those 6 days as a countdown to healing helped me begin to understand that perhaps this choice wasn't taking something away, but giving something back that I had lost.
Still, there was no shortage of fears over what my future with an ostomy bag would look like. During one session my therapist posed the epically important question to me,
"what if you cope?".
It felt achievable. To picturing myself thriving with an ostomy bag would have been way too lofty at that time, but to picture myself coping was totally within my reach. After all, I had coped with everything up until this point, so I had no evidence to suggest that I wouldn't be able to cope with this too.
I spent time in front of the mirror visualizing exactly what it would look and feel like to have an organ emerge through a hole in my abdomen.
I visualized my stoma so specifically that on the morning of surgery when I found out it would be on the right side of my belly (not the left as I had pictured) it took me a little while to reintegrate that new information.
With time, I moved on from the notion of coping, and onto the thought that maybe I would even live successfully with an ostomy.
Eventually I came to the conclusion that radical acceptance of my reality was my only path forward.
At some point in this 18 month journey I came across an idea. I don't recall where, or when, I know it wasn't my idea, but it became important. At first it took a lot of conscious reminders and intentional practice to believe it. Over time it grew stronger. By the end of June it had become a mantra,
Worrying doesn't change your reality. It steals today's joy.
Worrying doesn't change your reality. It steals today's joy.
Worrying doesn't change your reality. It steals today's joy.
Worrying doesn't change your reality. It steals today's joy.
Worrying doesn't change your reality. It steals today's joy.
It was my biggest lesson. I have no control over what happens, and also that isn't the point.
The point is what you choose to do with what happens.
Most of my 6 days to healing were spent in my garden, it's exactly where I needed to be to feel joy. And to continue the work of processing my grief. I listened to music, I cried, and I realized it was possible to feel the loss, and at the same time hopeful for my new path. I was encouraged by words that had nothing, and everything to do with my situation.
"Everything you lose is a step you take.
So make the friendship bracelets,
Take the moment and taste it,
You've got no reason to be afraid.
You're on your own, kid
Yeah, you can face this."
Only I wasn't on my own. The times I wasn't in the garden I was with my people.
All of them had my back on this unwaveringly.
And as it had in hard times before, perspective was there with me again, with some important reminders.
I had become chronically ill, but I had the option to remove the organ that was failing me, and once removed I could go on to live a relatively normal life.
For many living with chronic illness, they don't have this option.
This option was a gift.
Choosing to experience it as a gift doesn't mean I don't have hard moments, sad moments, moments of anger. I do.
It just means that once those moments have passed, as all moments do, I get to come back to choosing joy.
July 7th:
I woke up early,
walked with Kody.
Reassured him,
or maybe myself.
From my recollection I was surprisingly calm.
My mindset was ready, I was all in, focussed.
There was nothing more that could come in between me and my path to healing.