#RABlog Week Day 1: Starting over




This week, I’ll be participating in RABlog Week, posting on particular prompts that were decided by a community survey. Learn more about RABlog Week and how you can participate. You can also follow the #RABlog Week hashtag on Twitter.


This year is my 50th anniversary of living with RA. Well, technically juvenile idiopathic arthritis, but my experience of it has been close enough to RA, especially as an adult, that this is the name I use for what I have.

Today’s prompt is about starting stories. I’ve told my story often, so I’m going to summarize it very briefly and then go off on a bit of a different interpretation. If you want to learn more about my journey with this illness, one of the best places to do so is my Live Bold feature on HealthCentral.


I was four years old when I felt the first symptoms, my left ankle swelling hugely. I was nine when I got my diagnosis, 12 when a systemic flare almost killed me, and 16 when I got my hips replaced, enabling me to sit again. I got a power wheelchair and left the hospital where I’d spent the previous two years lying in the bed. I was 42 when the disease flared hugely again, causing me to come closer to suicide than I’d ever had before and never want to again. I am grateful every day for the biologic medication that gave me a second chance at this life that I love. And I was 53 when earlier this year, a case of the flu turned so nasty that I almost died again.

If I were a cat, I’d be down about five lives by now.

This life of mine is shared with a serious chronic illness. One that has led to many watershed moments over the course of the last fifty years. It has also brought my life stuttering close to a halt more than once, in that significant way that gets you looking into the abyss, seeing a toothy grin looking back at you. And more than once, I’ve been given the gift of being able to back away from the abyss and starting over again.

RA takes and it takes. It chews away at your life, eroding your physical ability, emotional equanimity, and it breaks your heart over and over again.

RA also gives. It gives you, in the words of my dear friend Cathy, the ability to slow down and approach life in a different way. It gives you the chance to develop a deeper understanding and compassion for others. And it gives you the opportunity to reinvent yourself, to live authentically in a way that can otherwise be difficult in our fast-paced world.

That’s what happened to me. After Biologics gave me back my life, I wanted to live in a way that honoured this gift. So I set about becoming the person I’d always wanted to be. Part of that involved being honest about the impact of my chronic illness, both to myself and to others.

As I battled the instinct to hide my limits and the things I do to make it through the day — taking painkillers, the daily nap a.k.a. the Mandatory Rest Period, and so on — I discovered something amazing. Namely that pretending I was better than I actually was, as I had done for most of my life with this disease, required a tremendous amount of energy. Letting go of that pretense gave me more energy to do the things I wanted to do.

I also discovered that being authentic was liberating. No longer did I worry quite so much about the reactions of others, and if I did get a weird reaction, I learned to not take it on myself. Instead I placed it firmly where it belonged: back on that person who’d said something weird or sometimes more than slightly offensive.

I yam what I yam, as Popeye said. That’s easier said than done when what you “yam” is changed or marred by chronic illness. But I’ve come to realize that hiding who you are, who you truly are, is an expression of having internalized the stigma that because of your RA, you aren’t quite as good as able-bodied people.

And that just isn’t true.

Your life is your life. RA doesn’t change that. When I was a child, my parents told me I had a choice: I could laugh or I could cry. Needless to say, I chose laughing. I’m no dummy. It’s the same with your life. You can choose to focus on the legitimately awful thing that happened to you when you got RA. Or you can choose to see it as an opportunity to shed pretense, to start over. To live exuberantly and authentically, RA and all.

  
  

Comments

Linda Perkins said…
Yes, ma'am! You are a smart one, indeed, Lene! Your tenacity, commitment to helping others, and your joyful outlook is an inspiration to so many. You are right in that it is easy to sit in misery, but in my experience, LIFE is so much easier when we live in gratitude for all the GOOD things we have in life, rather than dwelling in the negative! Yes, we have RA, but that in itself shouldn't stop us from having the best life possible. So grateful for you today, and happy to be blogging alongside you during #RABlog Week!
cathy kramer said…
Your strong desire to always choose laughter is one of the many things I love about you. You are always able to step back and say, "Let's look at this another way." This has helped you on your journey but also it has helped so many in our community, including me. Thanks for being you.
"Your life is your life." Simple, yet powerful words to keep in mind.

I, for one, am glad that your time is not yet up. To quote on of those '70s phrases - keep on keepin' on, Lene!
Kaz said…
Nice, Lene! A wise person once said to me, "There are always choices. you might not like the options at any given time, but they're always there." And that is SO true!
Rick said…
Lene, perfect post. You set off the first day of blog week with such a powerful post that I may have to rethink some of my other day's posts.

I am so glad you stay with us. You give this community so much, and you teach me every day to enjoy what I have and what I do with it.
Arthritic Chick said…
'Living authentically' really resonated with me. I think you put words to one of the positive things that chronic illness did for me that I hadn't been able to name. That phrase encompasses it. I no longer have time for the petty things or the material things that once consumed me, and I don't care about cellulite or what Sally said about me at lunch. Priorities :). I try to tell it like it is but with kindness along with the honesty, and find the humour in the situation (its almost always there) as a way to cope. These are things you have appeared to do naturally, so thank you for sharing your evolution. I'm sure it will help many of us find a similar path :)