transplants

Book Review: To Take Into The Air My Quiet Breath by Stephanie Gunn / Defying Doomsday Anthology

/ Sandi Parsons / Leave a comment

Favourite Line “Georgie,” she said, “why would God put flowers in our lungs, if it makes it so hard for us to breathe?”

Post-apocalyptic fiction depicts survival in a changed world full of challenges – where survival often depends on being the strongest. Defying Doomsday is a snapshot of what may happen if you were disabled or had chronic health problems before disaster struck and is a reminder that there are different types of strength.

My son has a detailed zombie survival plan. Not only has he scouted a location, he’s also figured out the security measures that need to be put in place – in fact his plan even goes as far as to include a backup location just in case the first fails. His biggest challenge is the need to survive alone without family backup.

As a chronically ill person I have a basic generalised apocalypse plan. It’s not as detailed as my son’s and since my transplant it’s changed. My health needs are more pressing as a transplant patient than they were when I was only dealing with my medical needs for Cystic Fibrosis. Although I had serious complications with my pancreas when I was a child, I have become more pancreatic sufficient as I age – I could make do without Creon if I had to. I’m not allergic to any antibiotics, so I believe a raid on any chemist should see me through the immediate future.

Post-transplant I have more pressing issues. Access to immunosuppressants is both lifesaving and time critical. I know which hospital pharmacy I believe to be the easiest for me to access under a variety of circumstances along with a brutal entry method if required.

Given the thought I’ve put into my survival in a doomsday scenario, Stephanie Gunn’s contribution, “To Take Into The Air My Quiet Breath”  which features twins with Cystic Fibrosis, Eliza who is on the transplant list and Annalee who is post-transplant, was for me the most interesting story in the anthology.

Gunn’s casual mention of raiding neighbouring houses and pharmacies for medicines including immunosuppressants gave me a bit of a chuckle – I know the reality won’t be that easy. At best my local pharmacy carries a single box of Tacro for me to use in an emergency and orders my scripts in as they are needed.

Flus can be deadly to people with Cystic Fibrosis, even more so to people who are post lung transplant, so I thought Gunn’s mention of a flu pandemic having caused the apocalyptic event interesting. Not everyone with Cystic Fibrosis caught the bird or swine flu, or were affected by SARS – but we are included in the most vulnerable group, so this scenario is feasible, but would have been discarded by most other writers who would have dismissed us with a wave of their pen. However, the close contact with the stranger did bother me, as the subsequent lack of infection afterward didn’t sit quite right.

Those two points are my only niggles in Gunn’s short story, which is high praise from me on fictional characters with Cystic Fibrosis.

Other people may wonder if someone with Cystic Fibrosis can survive an apocalyptic event? The answer is simple.

Absolutely.

We are tough, stubborn and used to fighting to stay alive. Generally, as a group, we’re tenacious and don’t tend to give up easily. Our lives are challenging to begin with, our survival even in this world of medical marvels not guaranteed – at times we survive due to sheer doggedness alone.

For me, an apocalyptic event would be challenging, but not impossible. I’ve faced worse foes and lived to tell the tales.

And just in case you’re wondering, the other stories in this anthology also get my tick of approval.

***

You’ll find more of my recommendations for reading about Cystic Fibrosis on my Pintrest Board : Cystic Fibrosis in Print – Books and More

Book Review: Three Amazing Things About You by Jill Mansell

/ Sandi Parsons / Leave a comment

Favourite Line “A mixture of horror and sympathy flickered across his face as the information sank in.”

I’ve always been rather snooty when it comes to book characters with Cystic Fibrosis. Characters who were like me were the only thing lacking from the stories I grew up on. On the odd occasion when I have stumbled across them, the medical details were never quite right, and the characters themselves seemed shallow.

I saw a recommendation from another person with Cystic Fibrosis for Three Amazing Things About You by Jill Mansell and thought I’d give it a go. I felt an initial connection to the character of Hallie, but the discrepancy with medical details jarred a little. Some medical details were simply not feasible, some treated insignificantly, and another major plot point used an outdated transplant technique as an emotional grab.

As a writer I see why she chose these elements for her story. A domino transplant (*my explanation of a Domino Transplant does reveal a potential spoiler) tugs the heartstrings a little more and a non-chatty protagonist doesn’t read well on paper. I assured myself the inaccuracies in the outdated medical details were because Mansell had to research this novel, she is not an #ownvoices writer.

Despite this, I had a huge emotional connection to Hallie – in particular her desire for Ross to see her as a person first, and a person who happens to have a chronic illness second. I know her frustration and the emotional impact all too well.

I dated other people with Cystic Fibrosis to avoid this issue. I settled for a toxic relationship because that seemed easier than living alone. The worst heartache I experienced was the devastation when, in the midst of a mad affair, my health plummeted and I watched a man I so desperately wanted to love me, look at me with pity because of the PICC line in my arm.

In the blink of an eye, as Mansell brought back those emotions I know so well, the inaccuracies no longer mattered. In that moment, with those emotions, she nailed it.

You’ll find more of my recommendations for reading about Cystic Fibrosis on my Pintrest Board : Cystic Fibrosis in Print – Books and More

Letter With No Address

/ Sandi Parsons / Leave a comment

The day our paths collided, you became my lifeline. I was, you see, in a far worse position than I allowed myself to believe. At best, I had mere weeks left to live, yet somehow I convinced myself that there were months, and many of them.  That denial regarding the true state of my health gave me the determination to cling to life.

To be brutally honest, I didn’t give much thought to the origin of my new lungs, which makes my discussions seem a little clinical now. But please understand, this was a coping mechanism – I was hanging on by my fingernails, existing on hope, and although I knew someone else had to die, I didn’t dwell on it. There is a sense of desperation, a willingness to embrace any option when your time starts running out.

In my yearning to continue living, I never thought of you as a person. As an individual with hopes and dreams. Instead, donated lungs were an abstract concept, part of a selfless act that would save my life. Donated from a generous individual and with consent from a family brave and strong, who during a dark and horrible day and in the midst of their grief, still thought of others.

Reflecting makes me feel a little callous and shallow because I think about you every day now. I’m so consciously aware that these lungs, now a part of me, once belonged to you. And you are someone real. Someone who breathed, walked and talked. Someone who was happy and sad. Someone who loved and was loved. Someone who gave me much more than a second chance. Someone to whom I will always be connected, although I will never know you.

I am entrusted with the guardianship of taking care of a part of you, and with it comes the responsibility to live life well and to the fullest. Since the day your lungs became a part of me, I’ve experienced many milestones, both big and small. My extra time has not been wasted.

More importantly, there is a simple pleasure in waking each morning to take a sweet breath without coughing, without gasping, without pain. And each wonderful breath is followed by another. Because your lungs, our lungs, do what lungs are supposed to, naturally and without effort, giving me more energy to pour into the world and make a difference to those things that matter most to me.

I am not who I was before the transplant, although I am still me. My son describes my changes succinctly. I am, he says, who I was always meant to be. But of my changes, great and small, it is the ones with no explanation that fascinate me the most, as if a part of you has imprinted onto me.

The words “my donor” leave a bureaucratic taste in my mouth. To me, it reflects an impersonal nature, as if this had been an ordinary transaction between strangers. There is nothing ordinary about this; it feels deeply personal to me. You’ve given me so much more than a second chance; it’s as if the final jigsaw piece has slotted into place and now I’m complete. As long as I continue to breathe, your contribution to my life will never be forgotten. I have this fervent wish that wherever you are, you know what an impact you’ve had.

There is nowhere I can send this letter, it has no address. So instead, I’ll send two little words out into the universe and hope that somehow they find you and let you know you made a difference.

thank-you

Sunday 20th November 2016 is national Thank You Day for our fabulous organ donors and their families.

donatelife-thank-you-day-2016