Guilt is the theme for the latest Patients for a Moment blog carnival, which I just so happen to be hosting as well. Guilt is a common theme amongst those of us living with a chronic illness, be it a congenital heart defect, cancer, lupus or any number of life-altering diseases. Whether we were born with our illness or not, no one ever gets "used" to be accommodated; I'm certainly not.
Guilt never became a regular factor in my life until the year 2007, when I was planning to move into an apartment at the small complex my mom and I currently live at. Our landlord was going to rent it to me for a generously low rate and preparations were underway to make it mine: We were clearing out the mess left by a family member of the owner, as well as previous renter, cleaning, going over paint swatches, changing locks, buying art for my wall, etc. Everything was looking up.
One night I calculated how much I would need every month to live. While my job was fabulous for a part-time gig, I was only permitted to make so much because I was receiving financial assistance as well (something I originally did not sign up for, but came with my government issued insurance) Combined together, I could just barely swing it. I'd be living on a budget, but I could do it.
But I would have to be kept reliant on government money, the controlling, domineering, keep-you-down money. Being with this program gave me intense anxiety like I had never experienced before in my life. I was afraid to open my mail, afraid of the changes they made because I made fifty cents over my allocated limit, afraid of the hoops they constantly made me jump through, making me feel subhuman as I had to constantly prove I was still ill in order to receive my insurance.
With a heavy heart, I knew I could not keep on this program forever - not to mention, rely on always being gainfully employed. I would always need the convenience of being able to take time off in order to deal with my health, which at the time, wasn't so hot.
Maybe I could have done it with a roommate, but it was overall decided best that I should scrap the idea and stay at home. Within a year I would be unemployed, as my health wasn't bouncing back as quickly as my work would have liked it to and an attitude of impatient, begrudging tolerance was no longer acceptable by me.
While my health has climbed the proverbial ladder since, there is always that chance, that moment when a switch could flip in my system - a system held together with robotic bits, string and a Hello Kitty band-aid - and I could need surgery, or be bedridden for months. It's not pleasant to dwell on these sort of thoughts, but it is a reality in my life. However, there are also other realities I cannot go without mentioning as well...
My finances have taken a dip, but I'm happier to be without that kind of money.
I may not have a high paying part-time job, but I am now getting paid to write (about food no less!)
I may be unable to contribute to the household financially, but I cook & clean, which keeps my mother's 60-hours-a-work-week stress level down.
I may still have to rely on a domineering insurance to pick up the slack, but I love Medicare like no other and want to send them gift baskets every time I am able to go to TEAM RACHAEL! One day, I will earn enough money on my own to make those premiums and be rid of the more controlling insurance company for good.
I may still live at home, but fuck it, so does half of my friends.
I may not drive, but I am able to save my money and see the world instead.
Yes, I become stagnant in a bog of fear and anxiety, fretting that one day I will wake up and realize I have never moved passed this stage in my life. I regret squandering time and energy in my late teens and early 20s, time and energy that could have been used to propel myself further, earlier. But then I look at my boyfriend...and I remember the day I met him.
That morning when I got up extra early to talk to my mom about feelings of guilt, stress and feeling like I am going nowhere in life. It was a Friday and she reassured me, as she always does, that I make a difference in our household and making progress towards a career in writing. Keep doing what you're doing, my mom said. She asked me what plans I had for the day. I told her I was supposed to go out to an event in Hollywood with my friend Loren, but I wasn't sure if I was really in the mood.
"No, you should go," she said. "You need to get out more and have fun with your friends. Go out, have fun."
Twelve hours and some change later, I was walking into the comic book section of the Borders on Sunset Boulevard where a handsome man was sitting, engrossed in a Marvel (X-Men) book. He saw me searching the shelves.
"Marvel or DC?" he asked.
"DC," I said, then noted what he was reading. "You're judging me, aren't you?"
"A little bit."
The love I have for this guy negates all feelings of regret, the would if I had...If only I done...and guilty feelings of decisions that ultimately led me to cross his path.
Had I not "squandered" my late teens and early 20s at anime conventions (don't you judge me) I would not have met my friend Elisa, who would lead me to my wonderful job as a feature writer for The Place magazine.
Had I not left my job, got back into Batman and joined a bit of fandom I wouldn't even be here, discussing this with you.
So what is there left for guilt to do except kiss my ass and hit the curb!