My Story

Telling People

The taxi ride to the flat was an emotional one, I spent the ride looking out of the window while trying to fight back my tears with a few escaping now and then.

Finally back in my room, I told my dad that I just wanted to go to sleep because I didn’t want to talk about my feelings or the diagnoses. At that moment in time I didn’t fully understand the seriousness of my illness, all I wanted to do was research what MND entailed but with my dad by my side I couldn’t do it. I thought it would be selfish and inappropriate, as I wasn’t too sure if he wanted to learn that information just yet. I texted my best friend Kim Goodchild to get her to give me a ring when she was free and as she was in a lecture we just texted back and forth for a while as soon as she got out of the lecture I told her I had MND. Kim knew that I’d visited the doctors several times as well as the neurologist and been in hospital, but I hid the majority of my symptoms from her too.

At last I heard the flat door shut and I was just hoping it was Louise, I hurried to her room and I knocked on her door and she shouted me in. I opened the door and as saw her face and just started to cry. I just couldn’t stop myself. I knew telling people would be the hardest bit! I grabbed her macbook, typed MND into the search engine and clicked onto the NHS page. I finally stopped crying to read about MND, I stayed in there for a while talking about my diagnosis. Leaving that room I felt like a huge amount of weight had been lifted off my shoulders and so many questions had been answered. Having that chat with Louise was unexplainable as I had so many mixed emotions, she kept me positive and made me stronger.

Dad told mum about my diagnosis as I didn’t want too and I would of had no idea of what to say. She “Facetimed” me once she was ready and the three of us talked about going to see Dr Gorrie tomorrow and how we would tell Ross and Laura. Mum was going to drive down to Dundee that day to tell Laura in person and the following morning pick up Ross before coming to the flat to head to our appointment. Dad was to tell Ross over the phone.

The next morning we all headed back to the hospital, the car was incredible awkward as no-one knew what to say. We arrived at the hospital early and went to the café a few buildings down. Laura and I were by ourselves walking behind the rest of them talking briefly about my MND and what questions I was going to ask. Straight away I wanted to know if I could have children, as it was the only question that hadn’t be answered by the internet. We had a brief lunch in the café, I could tell they were all watching to make sure I was okay. But I just decided to ignore it and carry on as normal.

We were all sat round in a circle when Dr Gorrie introduced himself and a female nurse. He gave his condolences about the diagnosis before going on to tell us what was going to happen from here onwards. He explained that with MND its hard to tell want symptoms were going to be next and when it would present its self as no two people are the same with MND which makes it unpredictable and this is why they would not give me a timeline as to how long I’ve got left. He then went onto talk about Riluzole, which is a drug that some MND patients are offered as it has been shown to slow down MND and increase life up to 4 months. However there’s no guarantee that it will work for me and if it starts to effect my organs I would have to stop taking it. I decided then that I would give it a go. Dr Gorrie gave out some MND leaflets before taking any of our questions. The usual question “was anyone else at risk of getting MND in the family?” we were told that they’d ask for blood samples of everyone eventually but only 5% of cases are family related. Then I asked if I would be able to have children! Dad and Dr Gorrie seemed quite shocked that I had ask that question but I just had to know. Dr Gorrie replied that he’d advise against it as my body wouldn’t be able to handle it. I said thanks then averted my eyes to the floor to stop myself crying. I think deep down I knew I wouldn’t but I just had to hear it and make it certain. Later after I finally brought myself back into the room Dr Gorrie was trying to probe Ross for a response as he’d be awful quite but he didn’t understand that my brother had only found out less than a week ago I was ill. Then we tried to convince him to take the weekend of work and come home with us for Laura’s birthday. His reply was heart breaking but totally understandable. “What am I going to do all weekend, sit home and look at that!” nodding his head towards me. I just burst out crying!

Telling friends was the hardest bit! Once you tell someone you can’t change the new way they precieve you, you can’t untell them the biggest burden and you know its not something they can forget! I took me a while to pluck up the courage to tell people I decided to tell the closest people in my life. So I told Darren, Joe, Haley and a few of my Camp Alice Pittenger (CAP) family. That pretty much sucked the happieness out of me as it broke my heart every time, I cried each time. I knew then that I was never going to go back to camp and even now it still makes me cry. I decided to go down to London to see my CAP friends knowing that Haley was flying in from Idaho to come and see me, I was just so happy to get out of the house and see them! We got the bus from London to Aberdeen to have new years in Scotland after a few days in London. That’s when my happiness was exchanged for anger.

I can quite happily say I’m one of the hardest people to piss off, but finding out that someone from the same friendship group decided to tell a bunch of my friends at a party that I had MND and that I was “dying!” Is one thing I can never forgive or forget, she has no idea the sadness and misery she has put on me, its inexcusable and heartless! I still can’t comprehend what was going through her head. It completely caught me off guard! I had finally found my MND happy place before the carpet was pulled out from under me. I was getting texts of people telling me that they knew I was ill and they were sorry! Since she found out about my illness and felt the need to tell the rest of my friends, she has yet to make any contact with me or even ask how I am.

I later told the rest of my CAP family, the remaining of my friends and my year group from school. Finally I posted it on my Facebook with my Justgiving page.

At the start with meeting new people i’d tell them I had a sports injury because it’s easier than trying to explain what MND is and getting the pity looks. However now I couldn’t be more proud of having MND because I’m making a difference and spreading the word! I’ve embraced my illness I will tackle the hurdles when I come to them. Each day that I’m happy is another day that I’ve beaten MND. Of course I wish secretly I was misdiagnosed or that a cure will be found tomorrow, but who wouldn’t in my situation? Hope is everything!

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