Odd One Out
Getting a CLL diagnosis at 40 years old makes me a "rare" case, a statistical minority, given that the average age people are diagnosed is around 70 years and it is rarely seen in people under the age
I have always aspired to live a life less-ordinary... but in the case of my young CLL diagnosis, I'm absolutely sure "a rare statistical minority" was not the label I was aiming for!
In fact sometimes being the odd one out can be a matter of much misunderstanding & hilarity ... walk with me ...
Awkward Hour!
Recently I facilitated a workshop on resilience at a camp for young adults. Following it, on the Sunday afternoon, there was a leukemia workshop, also on resilience, hosted by a cancer care organisation. I decided it would be interesting to compare notes on facilitation and resilience tools so I registered. A good friend of mine also kindly accepted the invitation to join me - with the promise of lunch and some fun together too... little did she know what she'd signed up for!
It was a beautiful day; the workshop I'd delivered was impactful and resonated deeply with the participants; I was now in relaxation mode. My friend and I had enjoyed a lovely lunch and then leisurely made our way to the leukemia workshops venue, nonchalantly wandering through the door.
And then bam! "Odd one out" syndrome strikes hard and fast, catching me completely off guard!
A room full of older, grey and wrinkled folks, with various degrees of mobility or lack of, were seated around tables, cordially chatting over cups of tea. Now, I love spending time with retired people and have many great friends in this age bracket, but suddenly, in this environment, that 30 year diagnosis difference was visibly evident to all and sundry, most of all me.
It didn't help that both the host and facilitator then assumed my friend (who has a few years on me, but not that many) must be the 'diagnosed' one. The whole hour was awkwardly endured as the facilitator frequently glanced over in my friends direction, imparting much of her wisdom and providing her plenty of pointed looks full of affirmation, encouragement and empathy.
As my friends face flushed red and she wiggled uncomfortably in the hot seat, hoping to avoid being the object of the facilitators misguided inclusion, I did battle with the escalating desire to hold my hand up (like a school kid) and reluctantly take credit for being the youngest diagnosed person in the room.
It took all my effort to also hold down those inappropriate and irrational giggles that were bubbling up and threatening to completely overwhelm me.
Needless to say, as soon as the meeting wrapped up, we left rapidly and then, out of ear shot, laughed until tears rolled down our cheeks and our sides ached. In that moment, I was so thankful for my friend. Because it really was laugh or cry. And belly laugh we chose.
As awkward and uncomfortable as that hour was - there are some great takeaways from it...
Assumptions and Unconscious Bias
As humans, we have this rapid "criteria, assessment and determination" process that we are constantly filtering others through. If they are xyz, then they go in this box. If they are abc, then it's that box. Our categorisation and social stereotypes of individuals is based on our experiences, perceptions, world view etc. We often don't challenge our unconscious biases, unless something disrupts them enough to make us consider how and why we are determining our selections. In that resilience workshop, the facilitator assumed it was my friend with cancer, probably because she was the older of the two of us. I could have disrupted that for her. For many reasons, I didn't.
I'm aware I get put in a box that probably reads "young, healthy, fit, confident, capable." And on my good days that's a fairly true assumption to make. Little do people see the days I lie wrecked on my bed, wondering where all my energy has gone. Wondering if I'm ever going to be able to do anything 'normal 'again. Those dark days, when I feel like l should pack myself into the retired box, tape the lid on, carry it down to the basement and leave it there.
And it's makes me wonder what goes on for others I pass in the street, at school, at sports practice... what assumptions and unconscious bias do I project on to them and their lives without having any idea of what's going on in the privacy of their own homes, bodies and hearts. What are they struggling with? What are they celebrating? What barriers are they burdened with or trying to bust down?
We all know the adage "don't read a book by it's cover"... I'm reading To Kill A Mockingbird with my son for school and I'm inclined to this take on that concept:
"You never really understand a person until you consider things from his point of view. Until you climb inside of his skin and walk around in it."
In recent months this idea of climbing into someone else's skin has resonated deeply with me and it's something I want to be more mindful of, more prepared to do. I'm out of the box, really we all are. Let's take the time to unpackage each other and get below the surface to explore and try to understand what's really going on in each others lives.
Resilience
And, good news, yes I did get some takeaways from the actual topic of the workshop! When dealing with a chronic, long-term illness it's important to have things in your life that fill up your tank, that nourish your body, mind and spirit. That bring joy.
And also how important it is to be able to say no to things that deplete and diminish your reserves. Having things to say yes to, helps with being able to say no.
For me, I thought I would appreciate being with others who share my diagnosis. I love to encourage, build up and connect with people. I went into that room full of hopeful expectations. I came out drained and distressed. Being the odd one out, in this case, was really devastating. It reminded me of all that is wrong with this cancer diagnosis. It highlighted just how out of the box I am. Reflecting on it later, I felt uncomfortable, isolated and alone.
This was not the fault of the well meaning facilitator, the friendly host or the kind elderly patients. This is just about where I'm at in coming to terms with being a CLL patient. That day helped me discover that I'm not quite ready to attend leukemia workshops; that being affronted with my own rarity is not going to help me at this point. So, for now, it's a 'no' to that kind of workshop, as it won't help me build the resilience I need to carry this burden.
And that day affirmed my 'yes' to my friend, who courageously received the "empathy eyes" on my behalf! My yes is to quality time, to laughs and sunshine walks. To having a support plan so that when I'm low and overwhelmed she knows how to help & vice versa. To building each other up and loving one another through every season of life. To celebrating all that makes each other unique and awesome, despite our frailties, failings and flaws. To being willing to walk around in each others skin, to taste, feel and experience life from another perspective, without judgement or bias. Empathy grows resilience too. I didn't learn that from the workshop, I'm learning that through life.
Courage, Love and Legacy
There is nothing wrong with being the odd one out. As I mentioned at the start of this blog, it is usually something I aspire to. I love uniqueness, creativity and variety. It's the individual facets of a diamond that reveal a deep and valuable beauty.
And then sometimes being different is really hard and uncomfortable. And because everyone finds themselves in that position at some point in life, we all need to be mindful of our own unconscious bias and choose to extend empathy and grace to others as well as ourselves.
This story is about an one off event where I suddenly found myself confronted with the stark reality of my diagnosis and it gave me a fright. I know older CLLers have so much wisdom and experience to impart so I'll be back for support groups in time, when I feel strong enough to be ok with being the odd one out. Less than a year into diagnosis, I found a raw and tender spot that I wasn't aware even existed. Until it did.
Grace builds resilience too. Being ok with ourselves when we suddenly find ourselves not ok. Where can you extend grace to yourself or someone else today?