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Stories have been at the center of our cultures since times immemorial. We used them to pass on knowledge, sing and honor our heroes in legends and folktales, to transmit moral values in fables and fairytales. A story is the perfect way through which we connect to another human being. You never know who might get inspired.
This week I’m starting a new series of articles: “Storytelling MS”. It comes as a response to the inspirational experience I had at this year’s EMSP Annual Spring Conference, at which I had the honor to participate as a Young People’s Bursary. But more on that later. Let’s further explain the Storytelling MS concept.
Stories allow us to be heard and accepted by peers and others around us. They help us gather and organize our thoughts and experiences and organize them to be able to provide a coherent structure.
We constantly tell others who we are through the things we share, choose, say or do. Our memories, experiences and values are kept and passed on through storytelling. As individuals, we constantly interpret the events we experience through our own self development. The stories we tell to the world are a mirror we provide to others like us.
Multiple sclerosis is an illness that aims to interrupt communication and the connection we have with the outside world. I truly believe that storytelling has the power to inspire and make us ride smoothly or smoother this rollercoaster we call “our life with MS”. It helps with letting you know that you are not alone in this, thus vulnerability dampens as you share and are understood by others. Empathy is the antidote for feeling either shame or unworthiness.
This idea came from the wonderful Brene Brown, the author of the bestselling books “Daring Greatly” and “Rising Strong”. These two books kinda “pushed me off the fence” for good, and empowered me to tell the story of MSers to the MSers. The first big push was from David Osmond's song "I Can Do This", that basically inspired me to not procrastinate any more and start this blog.
We are all beautiful human beings, who only happen to have MS. The most important thing we have is the feeling that we’re not alone. Together we can grow stronger, even with a chronic illness.
AND SO MY STORY GOES
My story begins on an ordinary Friday morning, in July 2014. I’ve just woken up with a slight pain in my right eye socket, but I didn’t give it enough attention. I started to get ready for a new day at work, shower, make-up, choosing what to wear, easy. Girls are well-accustomed to the sensation of getting the mascara brush into your eye (guys, imagine that instead of mascara, you get sand into it). This happened to me as I was just putting the finishing touches on my eyes (strange coincidence!). Meanwhile it all went away, I left for the office, all good. But the right eye was still bothering me a little bit.
I kept ignoring it throughout the day, but staring at a computer screen wasn’t so much of a help. I started to have difficulty in seeing the colors well, and the writing quickly became more and more blurry. On my way home I stopped at a pharmacy to get some eye drops and some sterile serum to “clean my eye and get it over with!”. I knew that was going to help me, because for the last two years or so I kept having issues with the same eye, but I never took them too seriously. The ophthalmologist said my vision was ok, why bother worrying? Ignorance can be bliss sometimes. But not for long.
As you might have guessed, the drops didn’t solve anything. The second day it got a little worse, daylight seemed too strong to even open my eyes. That evening I went to a friend’s wedding. Didn’t pay to much attention at how my eye was.
The next morning I was still seeing blurry. Little by little, until that evening, the small discomfort turned into a migraine, then into the incapacity to tolerate heat and loud noises. Something was wrong. But I convinced myself to wait until the next day, when I had made an appointment at the ophthalmologist.
After a routine checkup, the doctor told me that my vision was ok, but that she was sending me to do a visual field test and a neurological consult. Her diagnosis: optic neuritis. My visual field test results were half colored in black, and after he did the routine tests, the neurologist asked me if I knew what multiple sclerosis was. I froze in my chair. I’ve read something about it online, but that was it. “You have two eyes. If you want to keep them, go and get yourself hospitalized and do a 3-5 day course of intravenous Solumedrol, an MRI and we’ll see what we need to do. The choice is yours. It can slowly go away by itself, but it can also leave you with some damage”.
My last hospital admittance was 20 years before. This was getting serious. I started to feel a knot forming inside my throat.
The second day, in the evening, I went and got hospitalized. The youngest one in all the ward. The ladies that were in the room with me asked questions: “What are you doing here? You are so young! You’ll be fine, don’t worry!”. We began telling life stories and then the first i.v. started. The third day, my first MRI. The fourth day, visual evoked potentials (that test where you have to look at a screen that shows an ever moving chess-like pattern).
Near lunch time that day, the resident doctors were looking at my MRI results. Something had caught their attention. No, I was actually ok. My sight got better in the right eye, the worst was over. I remember I was smiling. My mum and aunt came to visit. We were in the ward, all the patients had their visits, noisy.
I remember it till this day, the neurologist sat on the bed right in front of me, she looked at me for a few seconds and… “Do you want to know what you have? You have multiple sclerosis and you’re going to have to live with it your whole life. You’ll be needing treatment, but you’re young so you don’t need to worry”.
I got tunnel vision, the ward got quiet, people stared, and with the corner of my right eye (the irony!) I saw my mom pulling a chair and sitting down slowly.
That’s when I started crying. The knot in my throat was progressively disappearing. I got out of the ward. I needed to be alone for a few minutes, hours, I had no idea how much. Confusion, resignation and determination: “I will not let this put me down! I won’t!”.
Another two days of Solumedrol, visits from my friends and a lot of inner self-talk. As I got home, although I was lucky to have all the people dear to me by my side, I felt alone. Just me and this MS, of what I knew almost nothing about.
I started to research, to learn and to know its strategies. Like in any war, I needed to get to know my enemy. I carefully selected my information sources, most of them not from Romania.
I wanted to find relatable stories. Stories of living with MS as a young person. And then I found Emma Rogan. A simple video that was out there since 2012, helped me understand that I need to push through and continue with my life, as strange as MS might seem. She doesn't know this yet; will find it out here.
I also remember that during those first months, the fact that I stumbled upon Shift.ms (an online MS community based in the UK), through the recommendation of a friend of mine, Claudiu, helped me and made me understand the importance of having someone to talk with. How important it is to have people to which you can tell how tired you are, without being told that it’s probably laziness. How important is to have people to whom you can ask questions when you’re newly diagnosed.
August 4, 2014 at 9:24 am marked my first post on Shift.ms:
“Hello all,
My name is Denisa and I might have been diagnosed with RRMS last week. Why do I say ”might”, you may ask: my diagnosis was based upon a single optical neuritis attack, along with the results of my MRI, the visual potentials, the blood tests and the personal history.
I already had my steroid treatment: 5 days. My right eye is now better, it regained saturation and sharpness about 99.8%. I know it will never regain its full potential, but I’m good with that. Moving on :) [...]
I know that in MS certainty is what lacks most of the time, but if I’m going to beat this poor MS, I have to know exactly what I’m dealing with! And most of all, I need to secure my parents’ emotional being, and all this uncertainty is killing them inside.
I am a knowledge seeker, an information dweller and I wonder if you could help me with some opinions.
Nice to meet you all and may you have a wonderful day!”
In May this year, I participated at the Annual EMSP Spring Conference, held in Oslo, Norway, through a young people’s bursary that I won almost two months earlier. I've written more about this HERE. Imagine my delight in personally meeting people that influenced my outlook on MS! My boyfriend looked at me like I was some kind of crazy fan, but that was just my enthusiasm jumping to the roof.
Emma & George, it was so nice to be able to meet you. Sorry if I wasn’t the most lively person there, but MS decided I needed some cog-fog and feeling tired. So I basically wasn’t entirely myself. But that’s that!
Funny story, hundreds of kilometers away from Romania, I met Stanca (founder of the SMile Center in Cluj Napoca, Romania). We talked and realized that we have the same goal: to improve the life of people living with MS in Romania.
The Young People’s Conference (read more about the session HERE) inspired us to focus on the young people living with MS in our country. Given the fact that MS is usually diagnosed between 20-40 years of age, we both think that together we can change things for the better.
And that’s my MS story.
MS took me by surprise, gave me quite a scare, but made me understand that there’s much more to life than it meets the eye. The stories I learned in the past two years have made me stronger. I’ve learned a lot, became more humble and although I have moments when I once more get scared, I know I can get through this. We all can.
A big THANK YOU to all the people at the EMSP conference. Especially the ones who attended the Young People's Group: Alina, Anna, Astrid, Cristiano, Elisabeth, Federica, Hannu, Henriette, Ioanna, Jacobo, Jana, Laura, Marketa, Patrik, Rakel, Vincent, Bjorn, Steinar. You provided unmeasured inspiration if only just for showing up and are proof that life is worth living, it goes on, even with MS.
Another thank you to all the people I have met, talked to and received help and inspiration from, all around social media.
Another thank you to all the people I have met, talked to and received help and inspiration from, all around social media.
CALL TO ACTION
I now invite you to tell your story. I want to tell these stories to the world, to show even more light on MS and on the strong people that live with it, research it, treat it and make sure it’s voice is heard. Are you up to it?
Send me your stories at smartchoice.livingwithms@gmail.com and I’ll feature you as a GUEST BLOGGER each week, from June 2016 onwards. The stories can be signed with your name or send anonymous, it’s your choice.
WRAPPING THINGS UP!
The following months we'll go deeper into what it takes to become independent: body, mind and spirit. To become the architect of your wished lifestyle. To become #strongerthanMS.
Until then, I thank you for being here. Liked this post? Share it with friends. Want to receive more articles like this right into your inbox? Add your email to the SMart Choosers list HERE. You’ll receive every new article and a monthly Newsletter of wonderful resources and insight, to help you make the smart choices that best fit your lifestyle.
Sincerely yours,
Denisa
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