What I Lost and Found With Crohn's Disease
My old life was a toggle button stuck on. I worked like a mule uphill in my career and I loved the accolades and especially the promotions. I was raising two absolutely wonderful, bright and smart kiddos. They were my respite to my crammed full life. They brought me such peace and joy; hearing them laugh was the salve no doctor could prescribe. I was also an avid runner who would never think to slow down. I did half-marathons, hopped out of bed – yes, I actually hopped out of bed, with many spoons – and threw on my running shoes every morning at 5 a.m. My dog and I would do three miles before the sun came up. I was blissful and in total denial of what I was doing to myself all those years and the train wreck that was waiting for me around the bend.
Let me back up a bit. I was diagnosed with Crohn’s at 14 years old. I had my first major surgery in 1973, and went on to have six more. Up until I could no longer pretend it was just the stomach flu, I was living in fifth gear. Physically active, in love, my kids were happy and frankly, so was I. It wasn’t until I was lying in a hospital bed after my sixth bowel resection with those gnarly complications we are so familiar with. My denial had wreaked havoc on my body. It was only then did I allow myself to peek behind my denial and really look at my Crohn’s in the face. Ugly. No more taking my laptop to the hospital or at home when I was recovering. Actually, no more career for me.
I was told to hang up my running shoes – and that meant more than just my shoes. I could no longer hide the “I’m fine” B.S. I told everyone. I wasn’t fine and I could no longer “buck up.” This way of living which I thought was so magnanimous by hiding all my pain, fear and sickness was killing me.
What I lost was who I was then… but I became a warrior.
I was morphing into someone I did not know. I could not get out of bed. I was on strong pain medication that fuzzed out my brain. All the medications I was on was like the candy store of pills. However, years later I started to get my voice back. I said no more to the strong pain medication that stole my life. By then I had a doctor who heard me and became my partner in fighting this disease. He saved me. I got on my feet, looked at my new shoes – well, actually my much loved scuffies – and moved forward with a solid new resolve.
My body was broken; OK, I accepted that, and I also said goodbye to that old self – it was gone. I traded the expensive wardrobe of suits and heels for fashionable sweats and jammies. I had to grieve that old life. Still do sometimes but now I get up and go forward. I have not lost me, I was just hidden behind all my stuff. Right out of the box, here I was, a new and different me, but still me. I learned to honor myself, listen to my body and learned how to take care of me. I slow down when I need to – well, kind of, some habits die hard. I became happy at home with my cats, Ruby and Lulu. I turned my energies into learning the trade of jewelry making and metalsmithing. A trade I could do at home.
At 60, after battling Crohn’s and chronic pain for 47 years, I am a warrior with a purple heart tummy tat to prove it. I also learned compassion and empathy. Not that I did not have it before but I really get it today. I’ve always said, “You can’t know what you don’t know.” And it’s been hard to deal with people who do not give me the grace and compassion I really need these days. I know they don’t know what it’s like to have a sick body, one that you have no control over. It’s hard but I try to help them understand. And for those who don’t or won’t, they just cannot be in my life. Sometime we have to be our own warriors. With humor, empathy and love of self, we can be awesome.
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I was diagnosed with Crohn’s disease when I was 13 yrs. I was a tomboy who rocked party dresses. I was curious, loved my big Siamese cat called Shabooey and Surf, my soft shelled turtle. Curly Auburn headed, petite and topped off with enormous dark chocolatey brown eyes. The day the pain began, that little full of life girl, went dark...no one believed me. First bowel resection was in 1973...I had no idea how sick I was because back then or at least in my family, you did not speak of anything that wasn’t all shiny and bubbly. Thru the many, many years of confusion, denial and ignorance...I survived by skating on the surface of my life. Married, two beautiful children, a divorce and a successful career I loved, hit the fan and all 4 tires blew at once. In 2002 I became officially disabled. I had to stop working so I left the big city of SF and moved back to my hometown. I bought a pretty Victorian home and went from Corp executive to jeweler. After my 8th bowel resection, and blasting thru every drug on the market, tacking on more delightful diseases; sarcoidosis, primary immunodeficiency, Sjögren’s, and the list goes on I decided enough is enough, for Pete’s sake. I opened Heartandhammers.etsy.com and became a tiny business owner. And then I rescued a ginormous, sweet 110 lb dog, Greater Swiss Mountain dog who I named Ollie, a darling little sprite of a kitten, aptly named Skeeter and my older, mature Ruby. She is a calico with all the grace of a queen bee. We are happy some days, others too much pain. Bearing the weight of too many diseases takes the wit right outta me. I’m single so I do my best to balance everything but plain and simple...it’s really damn hard. I’m writing this from the hospital..I’m a little drugged up, sleep deprived and feeling lonely but...I’m a warrior now. So I’ll do what needs to be done and get home to my little family of 4 legged loves....rinse and repeat.
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