What Helps Me 'Make the Best of This Life' With Chronic Illness
Damn, I am sick of being sick and in pain. Every. Damn. Day…
OK, it’s Plan B for now….
Executing Plan B: “OK, pain, let’s rumble.”
I plopped onto my couch, thinking like the fearless sleuth that I am, what was Plan B? I turned onto my side hoping to tilt the pain out of my body, then I quickly rolled left and proceeded to go helter-skelter, misjudging the width of my couch, I accidentally launched myself, missile-like, off the couch onto the floor and halfway onto my dog’s hairy bed. Instead of tricking the pain out of my body, I ended up looking like a misguided octopus with its tentacles pointing to every different direction in the hemisphere.
Now in addition to the pain that was crushing my belly, it was now alerting me to my sore and by now, quite bruised butt.
As I untangled myself, the absurdity of it all hit me and I just started to laugh and laugh some more… the laugher slid down to my tender belly and really had a go of it. My dog, Ollie, nervously watching all this commotion unfold, inclined his rather large head, questioning if he should protect me or kiss me. The cats had long since scattered. Now upright and settled on the couch again, I realized I had not laughed in quite some time. A sad thought, but at the core of it, the truth was plain to see.
I had been so engrossed in sparring with this wicked chronic illness since I was 14 years old, my expectations of a pain-free, symptom-free day was so distant it seemed to be located somewhere in the farthest most Northern regions of my mind. A place in me so vital to my life, so critical in preserving the essence of Pamela, and here I’d lost the map. I had to admit, I was not given the gift of genetic directional genes, but I was living on life support and it just had to change. With all the fierce resolve of Winnie the Pooh in his hunt for honey, I went in to find out. What I found was the one thing that has always saved me, heroically pulling me through horrific surgeries, bad news and worse news, being dehumanized as a sick person, disgusting medications and painful tests: my humor. The Golden Fleece of me. The part of me that had been silent for too long.
No wonder I felt all rusty and cranky. All of a sudden from that faraway place came an old familiar song. So I changed the lyrics, replacing them with my words, funny words, silly words poking fun at a complication of my illness. A smile cracked at my lips…there I was! I clutched onto that part of me and instinctively I knew I’d be OK.
Yes, the pain and nausea still flagrantly gang up on me with all its might. But now I have my superpower. I was once again back in the game. Yeah, until they find a cure, there will always be a big hitch in my daily giddy up… but the magical power of laughter, the essence of me is now front and center. I can now, once again, make the best of this life I have been given.
Sidenote:
As a person fighting a chronic disabling illness, I acknowledge how hard it can be to smile somedays. Hell, even to get out of bed, let alone brush your hair or teeth. The hurt both physically and emotionally can be so overwhelming at times, that the illness itself can seem small in comparison. Humor, at times, is not always readily available and that’s OK. We all have to do what we have to do to get by. Feeling crappy? Call someone, grab your favorite blanket, throw on those incredibly comfy pajamas that are so soft only the pilling of the fabric is holding them together and get some hot tea or cocoa, and that’s all OK too.
But if you have an ounce of energy, do this for me. Take any song, serious or otherwise, and create your own lyrics. I choose “The Sound of Silence” by Paul Simon, originally sung by Simon & Garfunkel. And note; I do not have a single musical gene in my body. Try it, you may just find yourself traveling back to the essence of you and without you even knowing it, a laugh or giggle may just slip out.
And that’s OK too.
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