Did you see that series of memes that did the rounds a few years back? You know, the ones that used 6 images to portray how different groups in society view your job/vocation? Like this one….
I quite like this one. I think it’s a fair and accurate representation of life as a journalist from all perspectives. Especially the last one.
In 2018 I was thrown a serious curve ball. No longer ‘just’ a journalist working the entertainment and lifestyle desk. In August 2018 I became a paediatric vascular disease patient expert – almost overnight.
Putting all my investigative journalistic skills to good use, I spent night after night on the small hospital sofa reading research papers in Danish, Zooming Italian vascular patients and their families, and dissecting x-ray, MRI and CT scan results in the early hours, at the nurses station.
What I discovered shook me to the core. My daughter’s have an incurable hereditary disease that may or may not result in premature death. In the states they call this disease ‘the silent killer’. Some people have symptoms, some don’t. Some have strokes, liver failure and blood clots, some don’t. It’s a luck of the draw type situation.
I’m not one for sensationalism. Okay, I totally am, (I studied sports journalism, of course I love sensationalism), but I was far more taken with the research, how the disease has brought about pioneering medical and surgical interventions and of course, what trials and potential cures my girls’ could benefit from in their life times.
As a journalist, I write stories. I listen to people, I research, I ask annoying questions. I also photograph and record things. I relay facts and figures and sometimes I write a punchy headline or two.
As a HHT Mum, I wipe up a hell of a lot of blood, sometimes on a daily basis. I pick up nose plugs that have fallen out during night bleeds. I prepare my eldest daughter 48 hours in advance of a blood test, which involves a barrage of text messages, ensuring she eats and hydrates on approach, providing snacks for when she comes round, on the floor/in the phlebotomy chair – when it all gets too much.
I hold and squeeze hands and use brute strength to keep her in the chair until the nurse draws the blood she needs to adequately monitor the situation. I wipe tears, mop brows, carry coats and school blazers, wringing with sweat. I provide her with bottles of Oasis for a sugar rush, post blood test. I offer tissues for the inevitable nose bleed which accompanies any stressful situation.
I take calls from school when her blood pressure or iron levels have bottomed out and she faints. Usually in biology. I encourage vitamin intake, sometimes I raise my voice to get the job done. I reassure. I tell white lies. Necessary white lies. I move work and school to accommodate clinic appointments. I ask more questions. Constant questions. Sometimes I panic.
I am resigned to never having white bed linen or soft furnishings, or clothes. I walk a little slower when she gets chest pains on the school run. I take pictures of her lung scars to show her how well it is healing, two years post surgery. I ask how PE went this week, any pain? I check up on blood results, oxygen saturation levels and chase clinic appointments. I talk to other HHT patients around the globe. I beg my own HHT surgeon not to retire, and swat up on the latest potential paediatric clinical trials. I educate others.
I’ve found a role you can’t roll into six humorous images. It’s almost a shame. If there were more awareness and chat about HHT, maybe I could make it more fun. For now, it’s back to the nurses station at 3 am, armed with more Garibaldi biscuits and a stack of lung x-rays.
Find out more about HHT, here.
Kate Reilly James 