Cystic Fibrosis is an often invisible dis-ease. Because my body is working as it should be right now, I’m not underweight as I was pre-transplant. Weighing 38kg was certainly not invisible, and it came with stares and whispers of anorexia and bulimia. I know people who suffer from eating disorders and would never say, ‘if only it was that simple.’ Because it’s not. It never is. That’s not to say my body is free from the ravages of C.F. Even after transplant, I still have C.F. There is no cure. I’m buying time – coming up sixteen years in August – and I’m so bone achingly grateful for my donor and her family.
We all have scars. Some are visible; others are seemingly silent and buried like a restless river just before the bank bursts. I am a quilt. My upper chest is a patchwork of scars from CV lines, port-a-caths, chest drains, my transplant and other invasive therapies I’ve survived. My belly has a nasty scar from where my ileostomy (poo bag) was. The first thing the surgeon said when he saw me after the surgery was, ‘I just managed to miss your tattoo’, but it juts out from where the rainbow begins and is lumpy and misshapen because I ended up with an infection in the wound.
I was still grateful. I have marks on my body from other medical adventures like skin grafts, but for the most part my dis-ease is invisible except when I have a line hanging out of my neck like this:
I wrote the following post last year when I was quite sick. It’s called ‘It’s not chemotherapy, but …’ … it’s crushing exhaustion, aching bones, rigours, a barely there appetite, heart palpitations, diarrhoea, nausea, seizing muscles and I can’t seem to get enough sleep. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line. ‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful’, ‘I wonder how long she’s had cancer for?’ and worst of all, ‘I wonder how long she has left?’
For the record, I don’t have cancer – not this year, anyway. But when people find out that I’m on an antibiotic regime and not chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working and I die.
Right now, I’m on three antibiotics: Meropenem, Cephalothin and Tobramycin. Twice a week I have blood tests done to see if my Tobramycin level is too high, and for the last week it’s been high. High Tobra levels can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. Before my transplant, my levels were so high, I was falling over from vertigo, headaches and tinnitus. That’s not before the nausea, diarrhoea and rashes. And that’s just one antibiotic.
Tobrymycin has left me a shell of who I was seven days ago. I’m barely getting around my unit and the need to throw up is never far away. I can’t go shopping because this lethargy has me on such a short leash, and I’m afraid of shitting myself in public so I had to have my groceries delivered last night and even then I was too tired to put them away. Again – Tobra is just one antibiotic. Meropenem and Cephalothin can also send me into renal failure and I’ve had consistent nausea and diarrhoea. I need chemotherapeutic grade antiemetics, and the first four days of IV’s – and even now – I couldn’t do a solid shit, was dosed up on fentanyl for pleurisy and had violent sweats and the vomits. But hey … it’s not chemo, is it?
We must always suspend our judgment of people. I may appear well with my face and body, but I’m not immune to pain, suffering or adversity. No one is. I’m blessed to have a great ‘shell’ (seriously, you should see my legs!), but many others have visible differences that are excruciating to live with, lest people literally picking them out of a crowd because they look different. If you knew what the inside of me looked like, or under my clothes with my patchwork of scars, I would stand out like a scarecrow in a poppy field.
Like me, people survive, live their lives as best they can while still kicking ass and taking names. I just ask this of you: treat everyone you meet with respect and kindness. Everyone deserves that. The photo below was taken in 2007 when I had cancer surgery and had to have my bowel redirected in the form of an ileostomy. It was taken two days before I grand mal/tonic clonic seizured myself into a coma and ended up in ICU and on the edge of life. Never a nice place. I will always be beyond grateful I survived – scars, skin grafts, designer vagina and all.