I don’t know whether having a chronic, debilitating condition is more maddening or genius. Genius because it a proves a favorite quote.
You do see more beauty. More beauty in moments you once took for granted. More light in the good because the darkness is so, so dark.
More maddening because with the structure of the healthcare system today – insurance payments to physicians based upon the volume, rather than value-based – care, contending with something where the symptoms require much more research and continuity of care than the types of illnesses most people tend to go to the doctor for.
I remember the very first day I truly started to feel something different. I was at a conference in 2012 with my work pal, sharing more about our company and hoping to discover new opportunities. I just didn’t feel quite right. I didn’t feel sick – just not right. I hadn’t in a week or two, but I chalked it up to being rundown from having two young children and our own small business.
About six months later, I was out shopping with my mom and we got to the bottom of a set of stairs and – if memory serves – I started crying. I’m not (well, I didn’t use to be) a very openly-emotional person. I told her I just didn’t think I could walk up that flight of stairs.
Mind you, I was pretty active before all of this. I played competitive, fast-pitch softball growing up. I was good too. I normally wouldn’t brag – but I did once hit a grand slam to win a game by one run (on two outs and a full-count).
I had a batting grip like Ty Cobb, and I could play darn near every position – including pitcher – with the exception of first base.
I did yoga and brisk walks from college on. I loved to inline skate – everywhere during college: class, parties, just out and about on any given night, work. I joined a slow-pitch softball team for a time as an adult and I always loved hikes. To this day, I still dream of playing softball again.
Your goals are always supposed to be attainable and so this year, I set my goal of one day throwing out the first pitch at a Colorado Rockies baseball game. Not in the state I am in – but healed.
For a long, long time, I kept my condition and more importantly, the ongoing decline in my health a secret. I thought – as a small business that develops relationships with the people it works with that often become friendships – people might feel sorry for me and stop wanting us to go out on video shoots. That’s not what has happened – or, at least that I know of.
I started to share my story (funny for someone who has devoted a career to storytelling) online through social media when I was in the hospital for plasmapheresis. For those who don’t know, my very non-doctor description is that it’s like an ol’ fashioned blood-letting. They thread two small tubes through your neck into your chest. Every other day, your blood is circulated through a machine – and cleaned. It’s wild, wild stuff. I was in the hospital 10 days (that’s a hefty bill!), and I left in a wheelchair bawling my brains out because the treatment failed and for me, the most maddening and devastating moments are when I get to the end of a line.
Anyway, that “coming out” about what was really going on with me – was sort of cathartic. I was definitely not hiding to the same extent anymore. I mean, it was obvious through the muscle stiffness and rashes and chronic cough and hair loss – that I wasn’t well. People would ask what cancer treatment I was going through (I don’t have cancer) or more about my health diagnosis. I just detested having to answer that because I honestly had no good answer and even more, I didn’t want anyone feeling sorry for me and trying to slow me down.
More importantly, people shared their stories with me – admitting they too were keeping mum in talking about a hidden illness they were living with. Gosh, what does that say about us as a culture?!
I had some extremely, extremely painful events this past year (two years). I haven’t shared anything for a while. In the midst of that, someone pointed out that the photos and posts about my health (pictures of treatments and tests and hospitalizations) paint a different picture from the posts of me working for our video production company, Fireside Production.
That stung. That stung a lot. But I realized it might be true and yet, both honestly reflect my lived experience. I do my best to keep it all together – to be a good mom and wife, to run a business I love – but, the truth is that I am falling apart at the seams. After a series of medical set-backs leading up to the ultimate knock-out punch, getting COVID-19 in March of 2020… I feel more sick, more disabled and more depressed than ever.
For the first time in a long time, I want to open up. I’ve been talking it over with Tom (my hubs) for months about it. I enjoy writing and thought perhaps if I share my experience, it may – a girl could only hope – touch a life. It could inspire people to think more about improving accessibility in our communities, more about the judgements they make about people and those they vocalize. It could motivate one healthcare provider to go deeper with patients whose conditions don’t align with a quick diagnosis before moving on to the next.
Maybe it’s a way to use writing (something I fell in love with in 6th grade at Erie Elementary) to let the light in.
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