If the internet has taught me anything, is that it’s a huge and amazing resource which can bring and connect people from all locations and walks of life together. I mean how amazing is it, that we can be chatting to each other from across the room, country or connecting with others in another country. The internet and the technology that enables us to communicate in mere seconds, is pretty damn amazing. What’s more, is that if we think that we’re the only person in the world with a question, an issue or a conundrum, within minutes we can verify that in fact there were others before us with a random question that needed answering, and more so there are loads more out there who are maybe not in entirety going thru our circumstances and situation – but there are others out there who can relate. There is something quite comforting in knowing there is a community out there, who are there at even the weirdest hours of the day to talk to or answer questions so you don’t think you’re losing your mind.
About 18 months ago, I was having a particularly rough time with my MS and the medications I was on, and the side effects they were causing and I was about to start another crazy new medication which was all relatively new. I put a post on Instagram, because we’re (I’m) the generation of the overshare, and we take solace in sharing our details in hope others out there will be drawn to us. I used a few of my usual anti/ I hate MS # and I was introduced purely by # discovery to a girl who was a MS Warrior herself, by the name of Morgan.
What made it crazier, was that this girl wasn’t across the other side of the world, but actually in Australia and in Melbourne. Insane right. Morgan’s story was different to mine, but she had been on the shitty drug gilenya I’d been on (the one that gave me skin cancer) and was one of the first to to on a trial of Zinbrya – my next off the ranks med. Thru instagram, I found a friend, who chatted with me about the meds, our experiences, but who I also found inspiration, motivation and kind words and support from. I’d never met this girl, we’d talked only on posts or by DM, but despite us having different scenarios, we also formed a sense of comradery. Morgan’s story isn’t mine to tell, and well she does a way better job of it on her blog here
One thing that always struck me about Morgan, was that despite the grueling treatments she undertook for her other immuno deficiency matters, melanoma and MS this girl was a fricking rock star. She was always informed, she was always informing us and despite having some incredibly rough days where anyone else’s spirit would have thrown in the towel she continued – but more was determined to tackle everything that come at her and some. She was fearless, she had the best medical grasp of what was happening and every and any treatment that was available to her she was going to take because she wanted to and insisted on living. If I was in her situation and scenario, I’d like to think I’d be that brave, but I think it’s also realistic to say I probably wouldn’t have had there passion and fire within me. I watched her travel overseas and battle the obstacle of traveling with meds which needed to be refrigerated. No worries, if she did it (and we’re talking another country) well I could get some tips, and just do it and do it confidently for when I had to travel too – because hey “we’re not going to let this get in the way of us seeing, doing – living our lives).. You inspired me, and made me toughen up and just do.
Over the past few months, I had noticed that the once fierce and bubbly Morgan was tired, and she was still under going treatments, but it was really knocking her about. She was still positive, but I could tell she wasn’t her usual self. I continued to check in, post words of encouragement and spur her on, hoping the next time I was in Melbourne I’d really finally get to see her and we could discuss how shit this disease and all the others were.
I’d had a particularly shitty past few days, and today took 5 to scroll thru my instagram page. I saw a post come up on her account, and it actually took my breath away. It was the most beautiful photo of her I’d ever seen (she’s a stunner don’t get me wrong) but this photo was ethereal – other worldly even and then reading the blurb I then knew she was no longer with us. The message and post was from her parents, but on her behalf. Letting us know this beautiful girl was no longer with us, but even before she departed she was insistent on her parents posting (even picking the picture to post) of her, and to let us know where she was now. I’m not sure I’ve encountered such a caring, selfless individual and I’m not sure if I ever will.
https://www.instagram.com/p/BpQTl7QgZlp/
Morgan, I am sad that you are no longer here and I know your family and many others are too, because despite what come your way you still shone bright. You taught us so much about ourselves, about you and you created awareness about your illnesses and you were bright, intelligent, real and refreshing. You were a friend to me at times where I thought I was the only one up at who knows what time it was, and you were angry with me at the medications and our genetic lottery – but you taught me to not let it consume me and to get on with doing what I needed to.
I will miss you, but I am so grateful for having met you and that we were brought together by a bloody # hahaha
Do I think it was random, not at all I’ll in turn when I can’t sleep at night sometimes, check and see what others are out there, and call on them myself because there just might be another soul who needs my friendship, and I think that’s what you’d be happy with.
Rest in peace beautiful girl. 25 years wasn’t long enough, but the 18 months I got to know you, will have more of an impact than you’ll ever know. As my niece who’s a little over 2 says “I’m a bit wahhh” (sad) at the moment, but that’s OK and it’s normal, and I know there will be many others who will be the same, because you really mattered to them all.