For my birthday this year in April, Johnny got me a gift certificate to a tattoo shop because he knew that I had wanted a specific tattoo for a while but as usual, I had procrastinated and just talked about it forever and not actually made an appointment to find an artist or drawing that I liked. I wanted roses on my shoulder and as many of you may know, cystic fibrosis is often called “sixty five roses” because of a sweet little boy who had the disease and often misheard his mother talking to doctors about his cystic fibrosis (which sounded like sixty five roses to him) And because I’m not badass enough to get 65 actual roses I wanted just two ;) However, in April I was not officially listed yet and didn’t technically have as many restrictions. A few days before the appointment I started having a slight panic attack because I had read that certain people were told not to get tattoo’s while on the list by their doctors! So I searched frantically through my desk with my fingers crossed that I didn’t find anything in the piles of paperwork when I signed my life away, saying NO TATTOOS. I couldn’t find anything so I asked the wonderful cystic fibrosis internet community and got mixed reviews. I finally begrudgingly sent an email to my Doctor the day before and when I didn’t hear back the next day I was torn. My brain was going in all different directions… The logical side of me was saying… its ok… I can just wait to see what she says, I’ll cancel the appointment- bite the no refund fee on deposit and reschedule if all is ok. The OTHER side of my brain was shouting at me to just “GO LIVE YOUR LIFE!!! You wanted this Tattoo so go get it and don't let anyone stop you because of stupid restrictions!” Don't get me wrong, I completely understand why tattoos can be dangerous for patients AFTER transplant because your immune system is severely compromised from the drugs but you are not on them PRE transplant. I have also had several other tattoos and have always been diligent and sterile about cleaning and have chosen clean and reputable tattoo artists so I didn’t even think about asking my doctor till it was brought up to me. Long story short, My doctor was abroad and had another transplant doctor covering her patients so it took several hours to relay the message back to me… I was cleared for tattoos PRE transplant and given the “be careful, choose clean place, watch for signs of infection to be safe, etc ” speech. I know a tattoo doesn’t seem like a big deal in the grand scheme of things, especially when its compared to getting new lungs… but I just honestly felt like I didn’t want CF to take one more thing away from me right now. It consumes 95% of my life and stripped me from any sort of normalcy… that just sitting in the chair and getting that tattoo just felt like a small win for me. It was a normal and needed experience. Despite still having the oxygen strapped to my face, I got to sit in a chair and instead of being poked and prodded for lab draws and IV lines, or port flushes… I got to listen to the buzzing of a tattoo artist weave his needle and ink around my shoulder as he painted two beautiful roses. My roses.
So I was feeling particularly cathartic about my experience and how much these roses represent my journey and how they symbolize my lungs. I just couldn't figure out how to explain it all and as quick as the words came out of my head, through my fingers and onto the screen… it formed the shape of a poem. I didn’t sit down with the intention to write a poem and I’m definitely no Shakespeare…. But nothing ever really goes as planned so I just learned to run with it. Here it is… ;)
Just My Two Roses
I have just these two roses to keep me alive.
They are beautiful and strong, but were grown in weak soil.
30 odd years, they were meticulously trimmed and groomed.
Extra care was given to reach their highest potential,
Allowing space to grow as tall as the sunflowers
And be as fragrant as the wildflowers.
But when the storms rolled in
the petals drenched and roses withered,
And time again.
They say MY roses bloomed too early and are wilting too fast now.
Too fragile without shelter, they were plucked from the field.
I sit in shelter with just my two roses,
Grateful for the years they have given me.
They say I will get two new roses one day
And for that I am very hopeful.
But with every rose that has ever been grown,
These two new roses will come with thorns.
The doctors have warned me…
My two new roses will be beautiful,
They will be stronger, taller and more fragrant than my first.
I will want to plant them outside for everyone to see,
But they are still fragile, as they are roses.
And although they will not need as much grooming,
They will need shelter… even more than the last.
So I will shelter these new roses… even more than the last,
Because I know someone just lost their two roses,
And their “Just Two Roses” will keep me alive.