When It Feels Like I've Been Left Behind During My Battle With Crohn's
I think there’s probably nothing worse than being sick and having no one call to see how you are – or maybe worse is when people leave.
I was diagnosed with Crohn’s disease at about 14 years old. I went dark as many of us do when hit with something so much bigger than we are. I honestly did not understand my own disease until I was about 30, and I certainly never talked about it – no one did. But I made sure I looked good. That’s a secret talent we ladies who live with chronic illness have. We whip out the blush, scribble on eyeliner and smudge on pinky lipstick over our pale lips and bingo! We have that sporty glow… but ours is from the bottle. Not wanting people to leave me is at the heart of so much I fake.
When I have to have procedures or surgery and cannot find anyone to take me, I joyfully say, “Hey, no worries,” and then worry…. a lot. When no one calls to see how I’m doing after a procedure, again, as a warrior I show no fear of abandonment, but in reality, I am going even darker.
Flowers die if you don’t attend to them. I actually talk to my only plant left that my dear cats haven’t eaten. It’s not the prettiest, but that makes me try even harder – I want it to thrive.
It’s the same for people with chronic illness; we want to thrive and we don’t want to have to give stuff up – our dreams, animals, fun times, careers or even heels, darn it! We rail against the unfairness of it all. Me, I’m going to take stock out on tissues. I think I have just wiped out my local supermarket’s supply.
I ask, trying to sound nonchalant, like I just thought of it on my way to the Rivera, “Oh, and please don’t leave” or “Could you call more often?” But then people don’t and people still leave. Maybe I show too much courage in the face of the unthinkable and people think I’m fine, so they leave without a thought.
Friends leave, family leaves (that’s a biggie), potential partners leave, hell, sometimes even my hair leaves! When there’s so much leaving and nothing coming back, I’m like a balloon that looses all its air – I drop to the floor, abandoned and, well, pretty sad-looking… But then that one special person comes along and hugs me. They say, “Let me come for tea and I’ll bring the tea. Don’t worry, everything will be alright. I’m your person.” And, as if magic were real, I expand and float to the ceiling with joy. I feel hopeful, like I am lovable and wanted. I love that person so much that I eat all the cookies they brought and get sick again, but I don’t care – because in that moment I feel (dare I say it)…”normal.”
If you know someone with a chronic illness, call more often, go see them, bring the tea, ask if they need more tissues… but please, don’t leave them.
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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.
pamelasquires