First of all, why’d I even buy a planner? So many lessons learned during quarantine. Everything is chaotic and we’re all searching for a little bit of balance. Here’s the irony, I never expected COVID or the quarantine to teach me anything about life. Especially about finding balance. And yet, once again, I was wrong. There’s always a higher purpose to pain. There’s always a bright sunrise after the darkest of nights.
A Journey of Self Discovery w Mr. Computer Programmer
If you’ve been following this blog, you know we share openly our own self discovery journey. This is no exception. In the following story, I pull from my early twenties memory banks about a one night stand that I was certain would lead me into a free fall about my own sense of worth and feelings of desperation. My goal has always been to fall in love. What I didn’t realize, was falling in love requires you to love yourself first.
(Part 1 of 3) my true dating with a chronic illness story and how my boyfriend discovered the truth about my declining health.
“How’d it go last night with the new guy?” the facebook message read. It was 10 am and I was just waking up after a long night out. I glanced at the clock that warned me if I didn’t rush through treatments, I’d be late for my flight.
My treatments consisted of albuterol, pulmozyme, and an antibiotic that I inhaled through a nebulizer in attempt to open my airways and curb some of the symptoms from cystic fibrosis.
As much as I write about (and enjoy) one night stands, if I were to be completely honest with myself- what I really want and hope for one day, is to fall madly in love.
In the far corners of my mind, I think about sitting on a porch and growing old with somebody. My husband will tell me a joke and it probably wont be that funny, but I will laugh for him. With him. And my mind will retreat away from the present and into the past, every heart ache, every IV, every medicine.
Every time I thought I wanted to give up on life and just fade slowly- some spark in my soul has caused me to dismiss that notion and fight. That moment, on that porch, with that man, is the moment that keeps me fighting despite my body wanting to rest forever.
Although I am not able to pin down attributes I want in my Mr. Right, I am able to pin down attributes in myself I need to have before I know I will meet him. One attribute I am consistently working on, is improving my physical fitness. I work out multiple times a week and have competed in several 5ks & 10ks. I’m not where I want to be physically but I am getting very close.
Imagine my delight when I met Mr. Tough Mudder, a very sexy yet calm man in his early 50’s who spent his career in the mortgage/loan business. Recently laid off, he was focusing on opening several CrossFit Gyms & just competed in a Tough Mudder Competition. He hiked in his spare time up several mountainsides, ran 15 miles a day, and judging from his biceps- was no stranger to push ups.
I met Mr. Tough Guy for margaritas in a classy Spanish restaurant. He admired my ambition and we connected instantly over our love for eating the right foods and working out regularly. I just failed to share that I had CF and that my workouts wouldn’t quite be in line with running up the mountains.
After a drink, he asked permission to invite his friends out as well. They were in town for a charity event and the words “charity event” had me completely sold. Mr. Tough Guy actively volunteers in the community and I could see myself volunteering with him for our next date.
His friends were just as polite and we all shared some tortilla chips and another round. Wonderful laughs and all in all, a great first date. The friends left and he asked permission to walk me to my car.
As we approached, he leaned in to kiss me. His hand stayed in the appropriate place as his lips gently caressed mine. Soft and sensual. Just a moment in time without any preconceived notions about going back to his place or taking it any further than a lingering kiss.
Second date, he picked me up and took me to a very high end restaurant in the suburbs. We shared a bottle of vintage Roth. Great conversation and we found out that we had very similar childhoods despite our massive age difference. I don’t like to jump to conclusions, but I was already planning our 3rd date…
However, during the time it was taking for this to cultivate, I noticed my weight started to plunge. I lost about 9 lbs in 2 weeks and although I felt fine, I started waking up in the middle of the night coughing. I would sleep in later and needed a power nap in the afternoon. General fatigue? Something more? I scheduled a doctor appointment to find out.
Psuedomonous aeruginosa is a particular type of lung infection that I cultivate. It was back. Time to be admitted into the hospital for what we don the “tune up”. It’s a lot like getting your car serviced, regular intervals of servicing keep it going long -term, but the vehicle can’t be driven. Just as I am coordinating when to check in to the hospital, Mr. Tough Guy calls.
I come clean and tell him about CF and that I am going to be admitted to the hospital when the unthinkable happens.
I sit there in the waiting room, looking down quietly at my phone as I read the text.
It has only been 2 months since my last hospitalization, a sure sign that Cystic Fibrosis is progressing. My lungs simply…are losing their stability. One chronic infection after another and I am starting to build up resistance to the only medication that exists to save me.
“Can I come up there right now to be with you?” Sure, I’ve had boyfriends feel it was their obligation to visit when I am hospitalized, but to sit with me in the waiting room as I find out what day I will be admitted, as I hack up mucous into sputum cups to send to the lab, as a 3/4 inch needle is attached to my chest…this is new.
I reply that his gesture is entirely unnecessary and I have checked myself into a hospital before, so no need for him to drive 20 minutes to sit with me for the next 30.
The problem is, he’s adamant. He wants to be there. I quit replying to his messages. This is MY life, MY failing health, MY struggle. I’m not ready to share it with a man I just met. Two days later, I’m hooked up to my IV machine and going through chest physiotherapy.
“Can I visit? Can I bring you anything?” He texts. I thought I was ready for love.
As Carrie Bradshaw once said, “I’m looking for love, real love. Ridiculous. Inconvenient. Consuming. Can’t-Live-Without-Each-Other-Love. ” And here, I am, completely vulnerable, with a man who wants to bring me dinner and sit with me in the hospital. Yet…I can’t bring myself to reply.
He never did anything wrong, he never said the wrong thing. He was polite and genuinely cared to be there for me, despite only being on a few dates. So why couldn’t I let him?
I’ve taken awhile off of dating since my body basically started to shut down on me. I look and feel great for the first 5 weeks, but it’s that 6th week where the sound of my coughing overshadows the sound of my laughing. I begin to walk with lungs full of infection, and I know it is time for IVs.
I took the radical decision to quit my day job and go on government help, hopefully to focus on my health enough to extend the time period between IVs an extra week or two. However, in between lifting weights at the gym, I happened to meet a man who repairs helicopters for the Navy locally. We decided to do happy hour at Applebee’s and I was optimistic.
Bulging muscles and a winning smile, we shared sarcastic bantar prior to ordering. Then he asked coyly, “so…what do you do for a living?” First time I’ve ever had to think of an answer. Geesshh…how do I tell the guy who just saw me at the gym- I live off his tax money because any moment I’ll be back on IV therapy fighting a genetic lung disease?! So…naturally…I told a little white lie.
“I work remotely for a nonprofit.” He asked what the hours were like, which I stated, part time. He then started to laugh about how great it must be to roll out of bed in my PJs, go to the gym, put a few hours in. Then said my worst fear, “I could never be that lazy”. Bssh. I never thought I could be either. I never thought in my wildest dreams, a career in being a professional CF patient would be looming.
I quickly changed the subject after saying “yeah, it pays the bills but I read a lot because I get bored quickly”. We laughed a lot and got along very well…that is until CF moment #2 of the night came up. He told a joke unintentionally and I couldn’t help but laugh. For the most part, I didn’t wheeze but held back the cough. And then, it happened. Wretched, flu-like, chesty, mucousal cough. He didn’t seem to notice. Then, it happened again. And again. Hacking over wings and ice tea, I excused myself to the rest room.
I came back to a weird look which I explained, “I’m not contagious, I promise”. Didn’t matter…moment was over. We stayed there for another hour and I was able to hide my cough until the walk to the car. A quick hug later, I am driving off- pretty sure will never hear from him again.
CALL FOR SUBMISSIONS: do you have a juicy story of dating with your condition and want to submit it for a feature? msg us!