#HAWMC Day 12: “If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?”
“What have you learned about being a patient/caregiver that has surprised you most?”
Rather goes hand-in-hand for me. Two birds. One stone pill.
“I am the terror, that *spazzyjigs* in the night,
I am the muscles, that will not work when you walk,
I…am Chronic Badass!!!!”
(totally said all Darkwing Duck…cuz it’s cool)
(Me: Ottawa Walk for Lupus, 2o12)
The day of diagnosis: Systemic Lupus Erythematosus – October 10, 2011.
The one diagnosis to rule them all.
The dark side of the Force…of inflammation.
“I’m going to let you in a few secrets, as you sit there, feeling oh-so-very alone with this gargantuan slap in the face kind of clue-by-four.”
Really. Enlighten me. Please. But pass a tissue first…cuz I’m leaking fluid from my ocular orbs.
“This is going to change everything, and not one thing will be changed in the way that you think it will be…”
You’re on something, aren’t you.
“…You think you’re going to have support. You will. But, not for cleaning or shovelling or maintaining the house and your job. You’re going to have the support needed to stay alive. To keep on keepin’ on…
…you will learn quickly that there will be people who are blissfully ignorant of all things chronic illness, and I suggest you learn sooner rather than later that this is acceptable. People do not have to care to the level you
want expect want them to…
…you are not just going to have to fight your disease (and you might want to prepare yourself for the bombardment of diagnoses of secondary afflictions that are coming…because no one’s going to believe *them*, either) but the social stigma of misinformation of chronic disease and how it affects not just you, but your entire family.”
You thrill me with this information. Golly jeepers, please, continue.
“…You are going to need to learn coping skills…I recommend blogging…to keep those who want to know, in the loop. You’ll want to come up with a decision regarding who/what/when to tell people. Some just won’t deal with it. Some will drift away. Some will be walking so closely beside you they’ll step on your coattails…but they will mean well and you need to suck it up and realize that it’s THEIR way of managing and dealing watching you go through this…”
So, you’re saying I have to watch what I say, but also say it out loud to the world?
“…Uh, ya. But you’re going to find a way to do it really well…it will help people you will NEVER expect it to and in ways you will never expect it to. Your eloquence with humour and wit will illustrate the reality of living with chronic disease…and that’s something many people are going to relate to.”
So, am I going to die?
“…Yup. And not one goddamn second sooner that you’ll need to. You’re going to be taking your mo-fo disease by the fortitude and giving it its come-uppance. And when you’re done doing that, you’re going to live out your end of days doing the things you’ve always wanted to do…emotionally, spiritually and logistically.”
Are there any hints to some good stuff?
“…Oh, sweetie…you misunderstand your entire situation…it’s not about good stuff that will be coming to you…
…it’s YOU who is going to be the ‘good’ in everything. It’s YOU who is the ‘good’ that will light a beacon of hope, inspiration and perseverance…
…And people around the entire world are going to know it.”