3 YEARS Ago almost to the day (and then back to our story…)

You can do anything you set your mind and heart to…

Today is Earth Day, and I feel quite small. I set out to continue on where we left off, right after my first IVIG infusion in January 2010. But then it hit me: 3 years ago almost to the day, April 25, 2008, I was at the Dermatologist’s office being diagnosed for the very first time (and by the first doctor!) with some strange and rare disease: Dermatomyositis, which I’ve come to know affectionately and intimately now as DM. I already detailed in Dermatowhat? Part 1 the events that led up to the DM and all the craziness I called life that was going on around and despite it. So today, as I am writing, I am taking a few minutes to reflect on 3 years of life with a chronic disease. “Did I ever think 3 years ago I’d be here doing what I’m doing now?” I ask myself, as you probably wonder out loud sometimes too. On the surface, I really couldn’t have imagined ever being limited in doing anything to which I ever set my mind and heart. That’s just me. I have always just dreamed, believed and gone for it-whatever it was at the moment. Instilled and encouraged in countless ways by my parents I’m sure, and forever grateful for it. Of course… when you are young or young at heart and have your health, you CAN do anything. Or at least you think you can so there really isn’t much difference.

Sometimes “it” would manifest very differently than what I originally envisioned, like the first and only time I attempted hang gliding when I was 17 or 18, only to nose dive right off the cliff and scrape my foot because I was stupid enough to wear open-toed sandals. Or spending a 6 week Israel Summer Institute trip after my Senior year in high school, primarily focused on doing an archeological dig, only to be one of two in our group who got dehydrated while riding a camel in the Negev (the desert) and had to receive IVs from an Army base while


the whole bus waited… Or that time I took a painting art class in college without having had any prior drawing classes, and was asked to paint a model who was sitting on a chair, which was sitting on a platform. My chair if you could call it that-more like a wounded four-legged creature-looked like it was trying to walk off the platform. Two of its broken legs were even dangling off the platform, along with my models legs. My model was flat, had no form, and her neck and body were so elongated my art teacher said-hey you should check out Modigliani. I know it was meant as encouragement, but I realized I had no aptitude for perspective and spatial relations, and without training, I wasn’t going to go far as an “artiste.”

But then I also dreamed up this whole musical adventure-getting my start as a lead singer in a cover band for a band workshop called BandWorks in 2002 after a divorce. One of those “I’m free, I’ll find and reinvent myself” moments I’m sure. Did I know much about technical aspects of singing? Had I played guitar? Did I write songs? I hadn’t sang in public since my high school musical Grease. I hadn’t touched a guitar. I had played violin in 4th grade and sax in 5th or 6th grade, but neither of those stuck. I sang as a kid and throughout high school-but never the coveted lead roles-like Rizzo. I was one of three special Raining on Prom Night girls our director dreamed up for that rendition of Grease. I wrote poems and snippets of lyrics and journal entries for years… but songs? So I went after the training: vocal lessons, guitar lessons, eventually song writing classes. My first attempts at all probably were feeble to say the least. There’s always so much to learn with new instruments. There was homework. There was practice. I never doubted that I could do it. I never questioned whether to put my expression out there into the world. I just threw it out there into the universe. Our band even started playing some of my originals-and I didn’t even know what I was doing yet. I was just starting to discover I even had a muse.

Still, like so many of us, I had my share of health issues pre-DM: colds that always turned into crappy, lingering, uncomfortable bronchitis; respiratory problems, asthma, etc. The difference is I could usually manage them. I took an inhaler. I took antibiotics. I knew I would be miserable for a time-maybe have to take a few weeks out of life while my body would fight and recover; occasionally even go to the hospital
for breathing treatments over the years, but I always came back. I went back to work. I resumed my life and activities. Being “sick” was more a pain, inconvenience, some suffering at times when bronchitis would get really bad, but I could rest assured that it would pass.

I think what is most peculiar about chronic illness is that you can sit around all you want waiting, but it doesn’t “pass.” I’d much rather live my life than sit around waiting for my life anyways. I think I was in denial for a few years while the body was getting weaker-clear signals that something or multiple things inside me was/were at dis-ease. I had always managed before; so I think I adopted that “this too will pass” attitude.

But it never did.

What can you do if you have sickness? You can ignore it. You can live in fear of it. You can fight it and get angry at and about it. You can ask it why it is there (if you get a response, do let me know!). You can pretend it doesn’t exist. You c an acknowledge it. You can make friends with it. You can accept it. I’m sure ther e are others, and as I write it feels similar to the Stages of Grief. Some of you can probably recite all the stages having experienced them through or with others or even first-hand.

I have experienced all of these stages on some level and cyclically-never in one neat and tidy, chronological, sensical order. Kind of like life that way. I go back and forth all the time. When I am so involved in music or something that excites me, I ignore or pretend that my eyes are not fighting sleep, that my body doesn’t desperately need to rest. If my mind is so active and willing and ready to go go go go, why should my body stand in its way?

Looking back on 3 years, if I had to associate stages, I feel like 2008 was my fear then pretend and ignore/avoid stage. Especially since I walked around with a constant reminder that something was wrong-hiding my red knuckles and nailbeds, covering my chest and arms so the rash wouldn’t peak through, and sometimes being scared that the rash just wouldn’t ever go away. Or each time I arrived at and went through those screening tests, the CTs, the mammograms, the ultrasounds, being reminded that I could have cancer or other medical issues. So many things to be afraid of when doctors keep reminding you all that there might be to fear…

2009 was my anger/fight stage-I could feel the pain and weakness, but I fought tooth and nail to keep working, keep performing, keep pursuing my dream. 2010, as you’ll read more, was a real wake-up call, not to ask Why so much, as so many of know asking why is akin to asking whether there is a God, as what can I learn from this and what can I teach. I guess it would be my dialogue and bargaining stage. 2010 was also a big fear and acknowledgement stage. Maybe even acceptance towards the end. 2011 is shaping up to be an acceptance and making friends with DM stage… I’ll keep you updated on whether that continues as 2011 rolls on.

Life’s only limitations are those you set upon yourself, for as long as you strive hard enough, anything is achievable” Chad Williams

So, once DM reared its ugly head (angry stage 🙂 ), and I was finally forced to take leave from work and eventually from doing music in the same trusted way, I started experiencing limitations on what I could continue to do. That was new for me, and that didn’t sit well with me.

Independence is such an integral part of who I am. I identify as a strong, independent woman. If I needed food, I could walk or drive somewhere to pick up groceries or to eat. If I needed to go to a doctor appointment, I could take myself. If I needed to go to aqua therapy, I could get myself there. If friends asked Dave and I to come over, we could do that. If we wanted to go away for a few days, no problem. To a show or to see some exhibit in SF. All the things I guess I took for granted pre-DM.

My bed, my couch and I became the best of friends, no more so than in late 2010, which I will write about in a future Dermatowhat? I introduce it now because I think of all things over the past 3 years, the hardest has been accepting that there are limitations to what I want to and can do.

At one time, you think you’re invincible. This just can’t happen to you, but when it happens, the reality sets in that you either change or you die. You realize you’ve got only one life” Ray Rhodes

It’s like bursting that bubble, or finding out, I suppose that there is no Santa (although I’m Jewish so I can only imagine the disillusionment). Finding out that I’m not invincible. I can’t just do whatever it is I set my mind and heart to. That’s like taking the innocence and magic out of a kid. That’s just not right.

It hasn’t sent me in a downward depression spiral or anything. Just has forced me to re-examine “quality of life,” and always to compare it to something that could be much worse: I’d rather be home than in the hospital. Or when in the hospital, I’d rather be here than not here at all. Accepting that I am not in control of my body anymore. That I do have limitations has been harder I think even than accepting I have DM.

While my friends or family talk excitedly about their travels, jobs, adventures, shows, tours, new babies. While reunions and weddings are being planned, I root them on but watch from the sidelines, as if watching a movie that I am no longer in. I hope that as time goes on, I can play too and more, but who knows. If this is the life I have now, I had best make the best of it. Who knows what tomorrow brings.

But, then again, I grasp at and super value time now. I spend it writing or connecting with you. Playing my guitar or finding things that make me laugh so I can share them with you. I have replaced go and do and see and then go and do and keep going and doing with a new slower and steadier routine. Each day is my own. I value that over most things. When I do go outside, the sun is brighter than I remember. The trees are greener. The sky is dotted with cotton balls. Gratitude and love. I can’t say enough about those two words. I will explore them in another writing, but for now, I realize that these 3 years wouldn’t have been possible without them as my foundation.

3 years almost to the day. I’m happy to be here telling my story. I’m thinking you reading have a story to tell too. While I departed from my chronology, I think I needed this reflection. Needed to acknowledge all that has brought me here. I wouldn’t have realized it isn’t enough simply to accept the DM. I think I still have yet to make peace with my limitations. With the hard and true and indisputable fact that I am no longer invincible.