It’s not you, it’s me!

I’ve mostly disappeared from the science community in Ireland, and thought you’d like to know… it’s not you, it’s me.

At the start of last year, my health began to decline. By the end of May, I had spent a total of 128 days in hospital. As I have occasionally mentioned on this blog, I have a progressive long-term illness. This impacts various parts of my body, particularly my lungs, and has resulted in regular hospital admissions over the years.

One of the most intense experiences over the past year was spending a few weeks unable to walk outside my hospital room. Instead, a wheelchair enabled me to get around. It turns out there are a lot of cracks, bumps, tree roots, and sudden dips along the very many shabby paths in Dublin.

Patient Experience
Essentials: Oxygen concentrator & hand sanitiser

When I got out of hospital in May, I continued to need oxygen for exertion or sleep. Wearing oxygen nasal prongs, and a jetpack-style concentrator out in the wild was a totally new experience for me. This innovative piece of kit sucks in lots of air, removes the other components, and sometimes noisily, pumps (concentrates) out oxygen.

This gave me my first experience of a physical disability that’s obviously visible. My illness is usually unseen but sometimes heard, in the form of the odd (or sometimes not odd) cough.

But this visible element brought a whole new level of results, often in the form of stares, or comments. It also resulted in awkward conversations with acquaintances, especially in a work setting such as a conference. Mainly awkward from my side as, where would I begin, in telling them about my health condition.

Another unexpected result of the past year, is knowing what it’s like when your life is in limbo. In between. A train journey with no fixed time to destination. It’s a common theme in modern life; a migrant worker living away from their family, a researcher moving from postdoc to postdoc with little job security.

Some of the most frequent flyers to Limboland are people with chronic illnesses. This can range from the torment of having no concrete diagnosis, to awaiting approval for life-saving medication or procedures. One of the best examples is living on the transplant list.

IMG_2813
Snapchat filters & medical equipment are an amusing combination during hospital stays

And that’s my very long winded way of saying… I’m not working at the moment as my health went on a downhill spiral last year, resulting in me being on the active lung transplant list.

I don’t want sympathy, but simply wanted to let you know where I have disappeared to. Also, you’ll now know the story if you see me wandering around venues like the Science Gallery with a noisy jetpack on my back! The thing about living in limbo is I don’t know when I’ll be back working again… either after transplant (if I’m lucky enough to get one), or if my progressive illness somehow unprogresses (you never know!).

There were two epic advocates who especially motivated me over the past few months. Louise Bruton for her amazing attitude and constant fight for services for wheelchair users. Though I only had to use one for a short time, it woke me up to the massive gaps in our infrastructure that need to be filled. Also, Orla Tinsley who is a friend and great support. She’s done unbelievable work for people with cystic fibrosis, and most recently, by highlighting organ donation in her positively brilliant style during her recent double lung transplant journey. As she puts it, RECYCLE YOURSELF!

On a final note, I hope to start blogging occasionally again so watch out for new posts in the next while. Science has been my constant companion on the journey I took over the past year. From the urgent need for development of new antibiotics, to life changing drugs developed by scientists. From a lightweight machine that makes oxygen from thin air, to the ever improving techniques for organ transplantation. Research is vital, life saving, and hope giving. Shout it from the rooftops…

GO SCIENCE!

14 thoughts on “It’s not you, it’s me!

  1. Go Science Indeed! Maria, get well soon. You’re a fighter, that’s clear, so keep fighting and hopefully I’ll see you (and your jetpack) some time soon.

  2. Thinking of you Maria. Keep smiling and enjoy all the little things!
    Nancy, Adrian, Alfie and Nora…. Your old neighbours! X

  3. Inspiring post Maria, courageous and tenacious – just like you. Hope to see you soon. Best wishes, Vinny

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