The Gift of Time

 This is by far the hardest blog I have written to date, because it’s not about the woes of being a small business owner who happens to have a transplant. It’s about a transplanted patient who just happens to own a business.

Tomorrow is the start of National Transplant Week and people who have been transplanted are being encouraged to share their story and to get people talking about organ donation. If you are in either shop or anywhere on social media the coming week, you’ll notice the #have the conversation posters.

And that’s the favour I’m asking. Just, have the conversation. Let your family and friends know your views on organ donation. I’m writing this because 2 families I will never meet had that conversation.

So here goes...

I was 21 living in the States, working in Irish bars, playing football, partying hard and totally self absorbed.

At 21 and half, I was back living in Belfast, playing football, not partying quite so much, but still self absorbed when a breeze block landed on my head. Well, a breeze block in the form of a brown envelope from the City Hospital informing me that after years as a routinely monitored renal patient, dialysis was looming and a kidney transplant on the cards.

I cried a lot. I thought my world was over and in a way the world that I knew was.

At 24 I got a call one Friday morning which led to my first kidney transplant. I lost the transplanted organ a short time later, through no fault of my own, something which took me quite a while to digest. For the second time in a couple of years I cried a lot. I was angry. I was scared and I felt immensely guilty. Dialysis wasn’t just imminent any more, it was an emergency.

I hated being sick. I spent about six months being really sick and what I hated the most was being completely dependent on the hospital, family, my husband and friends. It is hard for me to think about this time as I spent a lot of it pretending to the world that all was ok. But it wasn’t.  It wasn’t so much the sickness, the pain, spending a lot of time in Level 11 of the City Hospital; it was the fear of the unknown. When the last visitor left, the night meds were handed out and it was just me in a small room on my own for the next 9 hours, the fear was all consuming.

It's funny so many people say how brave I am giving up law and opening Kaffe O- “you felt the fear and did it anyway Orla” and I politely smile, whilst inside feeling like a complete fraud. What I want to say is actually there was a time in my life that I was so afraid that I know I will never be that afraid again.  

I spent the ages of 25-28 on dialysis and whilst I made sure it wouldn’t dictate my life, I continued to work, get married and travel, I hated being on dialysis too. I hated being dependent.

Dependent on a machine which kept me alive and which I was connected to for 8 hours every night. Dependent on the plastic tube implanted in my stomach and the 2 litres of fluid I carried in there every day. Dependent on people who carried boxes up stairs for me, took my dog out when I was too tired and those who helped me financially when I wasn’t able to work.

I felt like a burden to those closest to me- even though I knew this was the furthest thing from their mind.

I think it’s pretty fair to say, I like being an independent woman.

And then one Friday morning when I was 28, another call came to tell me a kidney was coming in for me and now at 37, this kidney has been a part of me for nearly nine years. It is my most precious possession.

I feel truly grateful and blessed to be part of the transplanted community. I have been given a whole new world and a whole new mindset. I don’t feel dependent any more. I’m not afraid anymore.

I love that I can run, climb mountains, swim in the sea, go to the gym, travel, eat what I want, go where I want, even just have a bath without the fear of infection!

It’s hard to explain but when I had the transplant there was a definite shift in how I viewed the world and the people in it.

I’m not embarrassed to tell my friends and family that I love them all the time, because I can and I do. I’m not embarrassed to admit that I love my husband more than I ever thought possible. I’m not embarrassed to admit that there are times when I’m walking down the street and a wave of gratitude comes over me, which makes me grin from ear to ear.

I feel such freedom. I don’t worry about the future any more. I know that whatever happens I will have the strength to deal with it when it happens.

I feel blessed that I was able to change my career path and do something for a living I love. I feel humbled by the amazing people who have helped me get there and those who share my vision for the future of the business and who go above and beyond the call of duty to help us get there.

I feel lucky to have realised that life really is too short to not spend it doing the things you love the most with the people you love the most.

I have become part of a whole new family of transplanted people through my sport and work with Transplant Sport Northern Ireland. These people really are my second family.

Don’t get me wrong it isn’t all dancing in the street. I hate that at 37 I have had to go to the funerals of two of my great friends and my heart still feels like a piece is missing. But I feel so lucky that I got to be a part of their lives for a short while.

I get impatient when people moan about the mundane, spread negativity, dramatise unnecessarily and it takes all my will power to not shake them and scream at them to “get some perspective”.

I will never meet the family who gave me their loved ones kidney. When I celebrate my second birthday every year, I know they are having a completely different experience. All I can hope for is that somehow the universe lets them know that I am trying my best to make the most of life and be a better person. I’m far far from perfect but I promise I will spend the rest of my time, trying to be the best I can be. That’s the only way I can think of to thank them, thank them for the gift of time.

 #havetheconversation

 

'There is nothing certain but the uncertain'

I talk a lot about how being a runner prepares me for running my own business.

However, as the temperature gage on my Honda Civic hit 24 degrees the other week, I realised that what prepared me most for starting my own business was being on the Transplant waiting list for 3 1/2 years. How does this correlate you ask? One word, uncertainty.

Every day on the Transplant list is uncertain.  I had to learn to live life, even though the background soundtrack on loop was, will I get the call today. I learned to accept that nothing I could do could control whether or not that call came, I had to stop waiting, and I had to continue doing. I had to watch other people prosper and not be resentful. I had to accept that sometimes the call came but that it just wasn't the right time for me. I had to readjust my life plans and accept that life is what you get, not necessarily what you want, or think you want. And finally, I learned the true meaning of gratitude when the call did come.

It's hard for me to explain the transformation which occurred in my innermost being on the list but I do know is that without this time, I would never have opened Kaffe O.

If you cannot cope with not knowing what each day brings, seeing your sales figures fluctuate with the weather, seeing your customers try out the latest new place, phone calls out of the blue at random hours of the day with the most random issues, figuring out what the VAT man is owed, finding another piece of kit broken which you're going to have to get fixed, staff leaving out of the blue, a huge community event happening which you knew nothing about but which all your customers are at...then don't even contemplate the small business owner route.

Whilst thankfully the majority of the population will never have to wait on the Transplant list,  I think the most important question a person should ask themselves before they take the self employment route is....can I embrace uncertainty? If the answer isn't a definitive yes, then probably best to go back to your desk on Monday morning or you will be miserable most, if not all of the time.

Within the last two weeks I've taken steps to try and regain my composure to help me deal with all the uncertainty the self employment world has to offer. It's crazy to think I dealt with the uncertainty of whether or not I would get a call to say that an organ was available better than the effect of a mini heat wave in May on sales.

So I'm trying to regain some perspective and control by attending a mindfulness class, making time to do some running in the mountains and being much more social with family and friends.

A very wise man said to me we all get two lives. The second life starts when you realise you only have one. So by all means follow your dreams, but be prepared, really prepared that there is nothing certain, but uncertainty.

Oh and PS- If you believe in Organ Donation- then here’s the link to become an organ donor- and don’t forget to tell your loved ones your wishes. I will never be able to truly express my gratitude that two families did this for me.

www.organdonation.nhs.uk

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