Happy 34th Fine with Not Being Fine Birthday To Me!
At the start of my 34th year revolving around the sun, I’m looking back and coming to the realization I spent 32 years thinking I was learning everything I needed to know in life and 1 year finding out how wrong that thought was.
On my birthday last year, I had just gone through about 6 weeks of symptoms and hospitalization. I had lost partial vision in my right eye, had vertigo that was so severe I couldn’t stand, was so nausea I couldn’t keep water down, had numbness, pain, muscle spasms, loss of control of basic functions and none of that to me was even the worst part. The worst part was that I knew I was on a diagnostic path heading towards a diagnosis that would change the way I experience life. I was going through the process of being diagnosed with MS, Multiple Sclerosis.
For anyone not familiar, they make an MS diagnosis by excluding absolutely everything else. That means you go through blood tests, urinalysis, MRIs and if you’re really lucky a lumbar puncture (yes, I am that lucky) to get the definite diagnosis. You can’t start MS meds or some of the drugs to treat the symptoms until you have that. And until you have that, it’s pretty hard to tell anyone what’s happening or what’s being done to fix it.
So last year in going through that, I did what every responsible adult would do when facing a serious health concern that could dramatically impact their lives. I kept telling everyone I was getting better and that the doctors were figuring it all out and that everything was fine. I’m very good, excellent even, at convincing people everything is fine. Example? Well, the same day I got my 95% sure diagnosis of MS at 8:45 AM, I was speaking in front of a lunch n learn audience by 12:00 PM. I’m pretty sure no one in that audience could tell 195 minutes earlier a neurologist told me my immune system was indeed slowing eating my brain and spinal cord (he didn’t phrase it that way). 3.25 hours is what I gave myself to deal with learning I do indeed have a zombie brain (again, not a medical term). And if I’m 100% honest, I published a podcast episode and built two webpages during that 3.25 hours. Soooo it’s not just other people I’m good (excellent) at convincing I’m fine. I’m good, nay excellent, at convincing myself it too.
Spoiler Alert: The last year, I haven’t been that fine.
You know for the past 11 years I’ve worked in the technology and the social media space, which is all about instant communication and instant gratification. I love my work, but even I hate how it has shaped our culture to be focused on quick answers and quick fixes. Getting a diagnosis of chronic disease is not something that is a quick answer or a quick fix.
In my life, I’ve watched my Uncle fight his way back from a stroke and regain parts of his life people thought would be over forever. I’ve also just recently watched my Dad come back from having his foot partially amputated due to a diabetes complication, and he’s always ready with a joke about it just taking him longer to count to a 100 (You can say 20, Dad. Everyone gets the joke at 20!!). I’ve always known those weren’t easy things for them to deal with in their lives. I’ve known how hard that must be. But I’ve thought if something like that happened in my life, I’d be prepared to deal with it. I thought through watching them, being supportive and listening that I understood what they went through and the challenges they faced. I thought I was excelling at being empathetic. I thought I was on a path of understanding the world around me and how individual challenges affect our culture and what the bigger picture should all be about.
Sooo thoughts can be wrong. And fuck, I was wrong. I was so fucking wrong. Until you go through the transition of losing physical or mental abilities, you’ve always had, or until you’ve been staring down a terminal diagnosis that is going to take everything away from you completely, I think it’s impossible to grasp how that affects a person entirely. But it definitely doesn’t make them fine.
I’ve felt pissed off. I’ve felt sorry for myself. I’ve been depressed. I’ve felt a complete loss of identity. I’ve felt like it’s no big deal. I’ve felt like the world is moving and isn’t noticing me. I’ve felt like I can handle it all. I’ve felt like I can’t handle any of it. I’ve felt happy. I’ve felt alone. I’ve felt scared. I’ve felt desperate. Terrified. Confused. Broken.
Definitely not fine.
Even typing those words above were difficult for me because my default setting is never to let anyone see that I’m not fine. The reason I typed those words and the reason I’m spending the first few hours of my 34th year writing this is because we need to change our society to still work when people aren’t fine. We need to be better at not just being empathetic, but accepting that we have no fucking clue what someone is going through in their life, that we’ll never know all the answers or what the big picture is supposed to be and that there’s no such thing as normal or perfect. And the start of that path for me is putting all this out there to maybe hopefully give someone who’s scrolling through the internet at 3:00 AM hoping to find the quick answer or fix on how to be fine with an MS diagnosis the permission to not be fine. For everybody else who is now looking for the quick answer or fix on how to support people in their lives who I’ve just permitted to not be fine, I don’t have those. But here are a few ideas I’ve had after getting through nearly a year-long process of getting diagnosed and living with MS.
We Don’t Know The Future, and We Can’t Live in the Past
There’s nothing we can do to change the past and all the planning in the world won’t lock in the future. We have to let go of hate as much as we can, let go of pain as much as we can, not regret love lost and try to find more love and happiness in the future.
We Need To Stop Asking and Start Listening
My least favourite question these days is “How are you feeling?”. I know that this question comes from a place of caring, but when asked sometimes people don’t always want an honest answer. Sometimes they want to hear us say “Getting better” or “Doing fine”. We’ve all probably thought it before. We want to show we care, but we’re busy and don’t feel 100% comfortable learning every detail of people’s lives. So we nod and smile no matter what they say. We need stop sucking at the listening part of asking those questions.
There’s No One Right Emotion – Toxic Positivity Is A Real Thing
We tend to tell people who have chronic illnesses, disabilities, or who are struggling with different aspects of life how they have to stay positive. Yes, I do believe that most aspects of life work better by staying positive, but I also think we have to allow ourselves to experience emotions. It’s okay to be angry, be upset, to break down and not think you’ll be able to get up from it. It’s okay to live in those emotions for a little while, as long as you don’t stay there. The thing we need to do is stop shoving positivity at people before they process through those feelings.
Our World Is Not Designed For All of Us
I’ve known this one for awhile and had started to see more of it after my Dad’s health struggles, but now it’s 120% solid in my mind. From the way employment works to access to buildings to things as simple as finding 15 minutes every Monday morning to sort medication for the week, we’ve designed our lives for the perfect 100% healthy person. This person rarely exists. We all have, at some point in our lives health issues, and our bodies all work in different ways. We need to all stop trying to be that 100% perfect person and start designing our world to work for us, all of us.
There’s No Perfect, Normal Life
I’m now a 34-year old single, childless self-employed woman who lives in the same house as her 63-year old father and enjoys officiating and playing hockey while dealing on a daily basis with her multiple sclerosis. Not the “normal” or “perfect” living structure most 34-year-old women are “suppose” to have. But this is my life, and I’m pretty okay with it. Do I want to find the perfect guy to fall in love with, marry and have kids? Sure, (seriously give him my number), but it won’t make life more “normal” or “perfect”. It will just make it different. Another experience and yes, one I hope to have, but we all can’t stop living while waiting for perfection that might never happen. We need to live to actually be alive.
So this is how I’m starting 34. Small lessons I’m somewhat sure of, tons of other lessons I’m throwing away, always leaving the door open way more for being completely fucking wrong and going to do my best at being fine while not being fine.