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The Art of Recovery

I’m back on the radio this week with a new installment of The Art of Recovery on Playtime with Sid & Bill talking all about ways to show compassion to people with chronic illness. Wait, you didn’t know I was on the radio? It’s ok. Sometimes even I forget.

The Art of Recovery is a weekly segment all about living with chronic illness and often has a very artistic slant to it; after all it is neatly tucked into Chicago’s only radio show completely dedicated to the arts. But how did it get there? Why is it there? Isn’t that weird? Who wants to hear about chronic illness on an arts show?

Years ago I connected with the lovely author of Fibromyalgia This: A Diary of A Pain Warrior, Ana Turck. It was her recipe for homemade bone broth that drew me in, but her intelligence, perseverance, and warmth that made me want to be her friend. I knew she was the first person I wanted to interview for my podcast The Flare and she kindly obliged (it was an AMAZING show fyi). A few months later she told me her husband had started a new radio program and was hoping I’d do a segment. The rest, as they say, is history.

Of course I was paralyzed with fear. Doing a podcast is one thing – I can do it, or not do it as often is the case, whenever I choose because it is mine and I alone am responsible for it. Doing a weekly radio segment is an actual responsibility and commitment – something my chronic illness does not like. Low and behold Bill & Ana had already planned for my flareups, which made me actually tear up and love them just that much more, and so began a very interesting journey for me…the chance for me to actually do something good with the hand I’ve been dealt.

I don’t make podcasts or write blog posts in hopes of becoming famous or because I think my life is so important that everyone and their mother needs to hear about it. I don’t share advise because I think I know everything because trust me, I know I don’t. Originally I began putting my voice out there as a form of therapy for myself, but I quickly learned that my stories had power as I began receiving countless messages thanking me for speaking up about my experiences from people who were also suffering but just couldn’t bring themselves to share it with the world.

So many times throughout my life I have wished there would have been something, anything, that I could relate to that could help me get through these very unique and difficult times that only those with chronic illness can understand. When I received enough messages to know that my parents weren’t paying people to say nice things to me (legit concern, people), I realized that I could be that thing, that person, for someone else. I could become what I always needed for someone else who might need the very same thing.

I’m not the best. I’m not for everyone. But I’m here for whoever needs me and I’ve spoken to enough people to know that there are so many of us going through the very same thing that we don’t need to feel like we are going through it alone.

If I reach and help only one person… that is good enough for me. I hope to reach more. I hope that one day not a single person with chronic illness is diagnosed and then just left in the dark to figure it all out for themselves. I hope that one day a person is diagnosed and their doctor says, “Here are some resources to help you,” and that it is a a gorgeous pamphlet filled with lists of radio shows, blogs, support groups (both online and local), Facebook pages, Twitter accounts, medical websites, and anything else you can think of. Whether or not I’m on there is meaningless; I just want it to happen. I’m happy with whatever life decides to give me.

And right now life has given me a weekly spot on a Chicago radio station where I can speak about my experiences with chronic illness and hope it lands in the ears of someone who needs it. And because it is tucked inside an amazing arts show I also get to interview artists that I personally admire and talk to them about how art has helped them heal or overcome struggles in life. That is the second part of why this opportunity is so special to me. I myself am a musician, artist, writer, and dancer and chronic illness took it all away from me. I was so depressed not just from the physical pain but from no longer being able to be myself. So I found ways to get back into all the things I loved and stopped focusing on what I used to be able to do and instead began exploring what I could do both in spite of my illness as well as with my illness.

It’s also important to note that the title of the show does not mean I am cured or that I’m going to tell you how to cure yourself. The “recovery” I speak of on the show is all about reclaiming pieces of myself that illness has stolen away, and healing internally so that I can cause myself as little pain as possible. It’s about coming back into the light after falling into the darkness and imagining new possibilities. And it is absolutely about how art has played a huge part in all of that.

If this sounds like something you’d like to listen to, you can hear The Art of Recovery every Sunday on Playtime with Sid & Bill from 1pm – 3pm Central on AM 1590 WCGO. You can listen live on their Facebook page, on their website, or by using any podcast/radio app on your phone (I use TuneIn Radio).

I hope to see you next week!

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Settling In

Things have settled down a bit over here. I mean life is still completely weird and every day I discovery a whole new level of insanity for every possible aspect of my life (a story for another time!), but on a whole I feel… settled.

I don’t know if it was winning my disability case afer fighting for 6 years, or if it’s because I now have a weekly segment on a Chicago radio station that makes me feel both accomplished and helpful, but lately I have felt more “myself” than I have in a very long time. The thought occurred to me that perhaps I just needed a 6 year long tantrum in order to get over my old job, my old hopes and dreams – basically my entire old life. Maybe. I mean it was a pretty awesome life, so I guess a 6 year long tantrum is pretty appropriate. But now my attitudes have shifted and I’ve begun to look at this new dysfunctional life as an opportunity as opposed to a crushing boulder sitting on my chest. I guess, basically… I’m moving on.

It feels odd to even say that. How do you move on from losing every bit of your identity and all of the capabilities that made you “you”? Honestly, I don’t really know how I did it myself. Maybe I just got tired of being miserable and pining for days gone by. Maybe I wanted to show my son that I can practice what I preach and truly make the best out of any situation thrown at me. Maybe I decided that my inner peace was worth more than my outer impression to the world. Perhaps I learned that I don’t always need to be absolutely outstanding every moment of the day in order to be worthy. Maybe.

I do know I learned to ask for help and lessen the unbearable load upon my shoulders. I know I learned to rest and proactively care for myself so as to cause myself as little pain as possible. I remember somewhere along the line coming to terms with what I could and could not control regarding my pain and overall health and abilities. And I distinctly remember thinking one day that  if I were someone else looking in on my life, I could possibly see it as though I have been blessed with the chance to live two different lives – an opportunity most people will never recieve.

Yes everything I used to do and be is pretty much gone. But strangely enough none of those things were what made me “me”. Maybe I’m suddenly calm and pretty content because I finally know that life could place me in a ginorous mud puddle and eventually I would still find a way to shine as well as help others to shine; it’s my nature. I’d be writing songs in my head, telling great stories, making beautiful sculptures out of mud, and doing my best to care for everyone around me and enjoy what I have – even if it’s only wet dirt.

So while it has been a tortureous experience, one that almost killed me… I can see how I could one day be thankful that it all happened if only because I have learned lessons that most people don’t learn until they are upon their death bed. I already know what I want to do differently, what really matters, and exactly who I am and why I am here. Had I been allowed to live the life I was living before, as satisfying and comfortable as it was, I would have never understood these things so soon. Are they more important than how I envisioned my career? More important than the future I had designed in my head? I can honestly say yes. All the things I was wrapped up in weren’t real anyways. They were simply ideas, constructs of my imagination and desires projected onto myself and everything around me. Knowing the truth trumps that any day.

Even if it takes 6 years to realize it.

So lately I’ve been simply settling in to this “new” life, exploring what is truly possible while finding ways to meet my true needs. There isn’t anything easy about it in any way, but I’ve learned that it does not need to be easy in order for me to be happy and fulfilled.

Yes I still have moments nearly every month where my pain brings me to my knees. Yes I’m still cancelling plans and sometimes in bed for an entire week at a time. But in these darkest moments I can, with full confidence, tell myself that I have been here before and I will certainly be here again and again… and that it always eventually passes. And maybe, just maybe the reason why I’m so settled is because I’ve begun to apply what pain has taught me to my entire life – I’ve been here before and I’ll be here again and again… and it always passes.

Only time will tell if this is what’s happening. I’d like to think I’m the kind of person that could learn and grow from pain and devestation and turn tradegy into something beautiful in the end, but there is always the chance that I finally gone completely insane. I do consider my mental stability when things get rough and this cockiness pops up out of nowhere and says “That’s all you’ve got? I’ve seen worse…” Which in a way is kind of nice. I like thinking that maybe there is still an undiscovered part of me that is just now waking up.

I can’t wait to meet her.