It's hard to know at the outset if this is going to be a gentle experience, or exceptionally turbulent. The experience being that of sitting down to write again.
It's been well over a year since I've felt in control of my experiences, thoughts, and words. Writing for me is a form of catharsis and processing. But something deeply troubling was happening for the last year or more. My physical, lived experience continued to take up a painful amount of space in my heart, mind, and soul. I could not be still. Still long enough to reflect and be fully with what being sick was doing to me.
I struggled to know what to say, let alone how to say it. My life has been so deeply intertwined in others', I was so exhausted, and living from a place of survival only. What was mine? What was theirs? What was real? What was real?
My life has been one of extremes -- often going starkly from 0-100, or 100-1000, and I found myself sprinting to try and keep up. I went from living life in NYC, running a start-up, keeping up with the Joneses to semi-isolation 20-mins outside of Ottawa on an acreage. From the bright lights and hustle, to spying on the turkey's as they make their daily rounds scavenging food from the compost to the bird feeders and back again.
Speaking of bright lights… it may be time to let this loose. In early January when I arrived back in NYC from our winter break for the company, I suddenly lost vision in my left eye and started experiencing severe migraines, and other neurological issues. I later found out what I had was optic neuritis, inflammation of the optic nerve. Strangely enough, it was not connected to my concussion from December.
Naturally. Because that’s my life 😂.
From January 10th to February 23rd our lives changed dramatically. For the first two weeks after the onset of symptoms, I experienced severe photophobia, vertigo, and sensory overwhelm, to the point where I would have to self-medicate to leave the house and to travel on the subway.
Prior to coming back to NYC in January, I had decided that I would move back to Ottawa at some point in 2017. I had hoped it would be after continuing some core work with Dream, Girl, but things clearly did not shake out that way.
We very quickly packed up our essentials and moved back to Ottawa in late January after my acute symptoms passed and I could handle the car ride.
It felt so surreal. In so many ways this is what I ‘wanted’, there was no doubt it was 100% what I needed (two weeks of vision therapy in NYC racked up well over $2000 in bills, so my appreciation for the Canadian health care system has become even more immense), but none of it was ‘on my terms’. I’ve only realized in the past few days, now that my stress has normalized, and I am back at a base functioning capacity, that I had almost no active agency in how this transpired. Because of the severity of what I was experiencing, I had no time, space, or energy to do much else but survive.
Optic neuritis, I would later find out, is connected with a number if illnesses, and in 60% of cases that my neurologist has seen, it is linked to multiple sclerosis.
So there was that.
I remember leaving the optometrist’s office after she dropped the potential MS bomb and just crying, so hard. It was raining outside, we were still in Brooklyn, and between the eye patch, sunglasses, rain, and tears streaming down my face, I am surprised I made it home, I am so appreciative that Mitch was there to guide me back.
I read a short essay recently that described life post-cancer. The author described the five stages of recovery. One was essentially that after survival, for a while, you have a heightened expectation and belief of any diagnosis. You’re wired to be in survival mode and for me it was prolonged by my concussion and this onset, so when I heard MS, I began preparing for the worst, and praying for the best.
We came home that day, and I cried. I cried hard. The pain was seeping out of me in sounds and words I couldn’t process or understand. The pain drenched my cheeks and shirt. The pain found its way into Mitch’s embrace, and he led me back to calm.
I was safe. This could be nothing. We are going to survive this like everything that’s come before.
This expedited our move significantly. I needed an MRI of my brain, I needed a neurologist, and I needed answers to help mitigate my stress, and to actually begin a long needed and required recovery.
After visiting my wonderful neurologist a few weeks after arriving home, we had my MRI done and were told about a small lesion in my right frontal lobe. I do not meet the McDonald criteria for MS, which is good news at this point. We will have a follow-up MRI in a year, and my neurologist has advised me to go on with my life as normal. If anything neurological flares up, or we find another lesion in a year, we’ll take it from there.
A clean(ish) bill of health!
I received that news a few hours after having to take the stage at a large business conference back home in Grande Prairie. I was so nervous and struggling with bringing that talk together. It was 45-mins long, I had just left DG, we had not publicly shared anything, and two days before the talk I had a sensory overwhelm panic attack while sitting with my family that left me tired and scared. I was so scared taking that stage that I might have an acute episode, or have my vision loss become more severe while on stage. It took all the strength I had left to make it through and cross that final barrier.
That was the official beginning of this new chapter.
We have moved in with Mitch’s dad in Carp, and we love it. We’ve changed the carpets, painted the walls, and brought even more life to this loving home.
Papa Joe has been such a light for me. When I was in my recovery from both my surgeries last year, we stayed out here and it’s a beautiful sanctuary for me. It’s a place where I’ve healed, and will heal even more fully. Him and Mitch make me laugh, and I feel safe to be whatever version of me I need to be as I heal. This is a place of real love.
My ‘full-time’ gig is my health. I’m working closely again with Steph over at EPIC Fitness to get active, to move my body, and come back to what I love: feeling strong and capable in my body. I’ve built a team of healthcare and complimentary care professionals who are helping me address root causes of my sicknesses (Hashimoto’s disease + cancer + concussion + optic neuritis all in two years seems like a lot), a big focus of this is food, cranial sacral therapy, thyroid-supporting meds, vision therapy (I still don't have my full vision back), and emotional release and processing.
I do find joy in creating, and with the slowing down and having almost three weeks now of ‘normal’ and ‘average’, and no travel, I am getting a sense of what my life can look and feel like without tremendous physical, emotional, and psychological stress.
What does this all mean for my ‘work’.
Down time = ideation time. I refuse to run a mile a minute anymore. I am responsible for changing the patterns and habits of a life that exacerbated such significant and severe health challenges, so that is my priority. As I eventually build my team, begin writing, and look at future projects or investments, I am going to take. my. time. I am going to have fun. Pause. Laugh. Do what I want, when I want. My mantra right now is slow and steady wins the race. The more time and space I make for myself right now, the better I will become.
So much of the stress that compounded for me this past year was feeling like I was not in control of my own life. I didn’t take accountability and do what I needed to do to be happy, healthy, and free.
So now’s that time.
Seeing as though this is my first post back, I know there’s a lot here, and there’s no real synthesis or cohesive theme, message, or takeaway. That’s because I just need to get this out to continue. To keep taking my next steps forward, and to tune into and cultivate my voice even more. More fully. More deeply. More authentically, and hopefully with more impact.
There’s so much I’ve been through that I would like to share in the hopes of helping others. So that is my mission. How can I use my processing, and natural desires (to write, for example) to help others as I create this next chapter.
Stay tuned as I figure it out <3.