What I Wish My Family Had Said to Me as Someone Struggling With Chronic Illness
I have been feeling well these days, but I’m terribly nervous. It’s that damnable illness waiting, lurking around my body looking for an extra corpuscle to high jack. I’m afraid to celebrate or let loose cause this disease (Crohn’s) can strike anywhere and anytime; it does not discriminate. It screams out through my knees and knuckles, every bend feels like they need WD-40 oil. My knuckles feel like the tin man’s hands that were left out in the rain too long.
I want to be well, but how do I work it when instead of my body being damaged and hurting, my heart and soul is crushed. Since I was diagnosed with severe Crohn’s as a small kid, the uncertainty of all of it scared me, still does today at 61 years old. I do not want to feel this feeling. I am furious at this feeling. I hate this feeling. I can take my body for a walk without pain, but my head won’t let me. It says, “Go directly to bed, put your head under the blankets and never come out again.” It says, “It’s only time before you are sick again, tic tock tic tock…”
Seems my body has muscle memory. It remembers all those years of intense sickness, excruciating pain and surgeries one right after the other like fast food hamburgers. This body remembers being afraid and lonely. That’s the story of this girls’ life. Sickness, loneliness, pills, IV medications, sad looks on physician’s faces, failure to thrive, more sickness and major surgeries.
Today, I am failing to thrive emotionally and this is hard, so damn hard. I can’t call my doctor and have them access my port and take away this grief. It’s like it’s stuck in my head. A bulging, sober rain cloud that will not stop thundering and lightning. The rain of a mother who is alive, but lost to me. The thunder of a father who has disregarded me for like rubbish. The wrenching crash of a sister who married well and left me standing with my arms stretched wide and empty. And finally, the torrential macro burst of loss and grief of my big sister leaving this world and no one let me say, “I love you…. you made a difference in my life.”
The words still rumble around in my head…I want so badly to turn it off but I can’t find the switch. I can’t find the main control panel. I’ve lost my way around my body and my emotions. As humans, we need the light and warmth that love brings us. This helps us grow and blossom. I hug my dog but he can’t really hug me back (no thumbs). My cat looks at me with questions but no answers.
I have stayed strong in the middle of this typhoon. I never blinked, even once. I was so desperately trying to save my own life that I did not have the bandwidth to ask my family to please be patient and wait for me. Could anyone have the empathy to finally say, “I’m sorry, I was not there for you?”
Such powerful eight words that give such loving grace. I don’t think it’s ever going to happen, ever. It takes a certain kind of bravery to say these words, all in a neat row. I wanted to tell them that when a person has been gravely ill over years, it is a formidable act to express such emotion. I know my emotions are perched upon my shoulder for all to see, but it is especially heavy and I need your help. And if I do share my sorrow, will you drop those precious feelings on the roadway? This girl has been in and out of the ICU, CCU and has clocked more hospital time than an international pilot. I often wonder why I am here and honestly how it is that I am still here. God’s grace..
I am a mother, a blessing I would never take for granted, ever. Every day I wake up, I try so hard to calculate my blessings. I thank God for my kids, for the roof over my head, the food in my refrigerator, then I come to a grinding halt.. not working, so what works? I ask you? I still twinge from so much pain I cannot seem to fix. But I will try, every day. I remind myself I am tough, strong in the right places and I have survived so much more than the average bear. At times I am humbled by it all, taking me straight to my knees.
I’ve endured so much already… it would be such a shame to give in. It’s just not in my DNA. I am too much of a warrior to ever give up, especially since I am all I have… and that’s good enough for me. This, I can do.
Original image via contributor
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