Storytelling MS: How Did the Diagnosis Changed Me & Plans for the Future

Storytelling = “the conveying of events in words, sound and/or images, often by improvisation or embellishment. Stories or narratives have been shared in every culture as a means of entertainment, education, cultural preservation and instilling moral values.” (Wikipedia)


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.


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 (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

“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.


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 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.


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,

METAMORPHOSIS - ep. 17 - I Release. #30Letters from #yogacamp miniseries

Releasing means letting go, dropping something from a tight grip. When we’re doing this with negative emotions, all kind of weird things might happen: aggression, panic attacks, nervousness, being tired, stomach acidity and others. It really depends on each person.

Releasing all that does not serve us anymore can mean becoming calmer, more at ease. It literally can feel like we drop a heavy rock or block of concrete and now we can breathe again. We begin to feel lighter on a psychological level.

Many logical people think that there’s no real correlation (a scientific one) between the body and the mind. This happens mostly in Western cultures. Meanwhile, the Eastern part has always been aware of the psychosomatic connections between the brain and the rest of the human body.

Take for example at how you feel when you’re stressed, angry or afraid. Relive those sensations. We’ve all felt them. Then, remember how you’ve felt when your mind was no longer paying attention to those issues, remember that feeling of relaxation and ease that you get when you breathe deeply. That’s what I’m talking about here.

Yoga relaxes the mind and body. Relaxed muscles help release endorphins that in turn improve your emotional state, giving you that sense of ease, of feeling good in your own skin.

Make the conscient decision / choice to let go of and release those negative thoughts. It will make you feel better.

Here’s the routine I’m referring to. Day 9 of 30 days of #yogacamp: I Release. Enjoy!

Thank you for your visit. Please remember to comment down below, share your thoughts on this. Subscribe HERE to stay in touch with what I write.

As always, transformation starts from within.
For the rest of the “METAMORPHOSIS” series, click here.

#30letters is a miniseries derived from the experience of being transformed by some of my choices, in this case yoga, a lesson about yourself and for yourself. #Yogacamp is a 30 day challenge created by the wonderful Adriene Mishler (@yogawithadriene) and shared for free on her YouTube Channel. Check it out here.

Denisa (Alex - alias)

METAMORPHOSIS - ep. 16 - I Am Present. #30Letters from #yogacamp miniseries

Our minds are always fighting between remembering the past and planning the future. The present is merely a time when we do these things and regret or get anxious / stressed about what is to come.

Living in awareness of the present moment is important. It connects mind and body and makes us more in tune with what’s happening with those two in our lives. When we’re not aware, we eat compulsively, we think of other things when people talk to us, or plan the next big project / deadline when we’re on vacation or with a loved one.

Being aware is not some New Age fairy tale that advises us to dream of flowers and pink rainbows. It’s the best way to get more things done in a shorter amount of time, because we are more focused. It’s the best way of increasing our relationships by really being there in the moment, conscious of what we’re saying, feeling and sensing. It’s the best way to maintain health, as we sense when our bodies are full and we don’t overeat or stuff our guts mindlessly. We get more out of our exercise because we’re doing it 100%, not thinking of other stuff.

That’s what we find to be so hard at yoga: aligning the mind to the body. Being aware of our bodily sensations and the emotions that come with them. Through the stretches, our minds want to quit, but get silenced by the body, who gets stronger and goes stronger and lightly through the poses, proving the mind that we are strong and capable.

The sensations feel good, even those that strain us. We go through them. One can get through hardship if only one has patience, acceptance and lives the moment.

Choose to be present and aware. Continue forward.

Here’s the routine I’m referring to. Day 9 of 30 days of #yogacamp: I Am Present. Enjoy!

Thank you for your visit. Please remember to comment down below, share your thoughts on this. Subscribe HERE to stay in touch with what I write.

As always, transformation starts from within.
For the rest of the “METAMORPHOSIS” series, click here.

#30letters is a miniseries derived from the experience of being transformed by some of my choices, in this case yoga, a lesson about yourself and for yourself. #Yogacamp is a 30 day challenge created by the wonderful Adriene Mishler (@yogawithadriene) and shared for free on her YouTube Channel. Check it out here.

Denisa (Alex - alias)

World MS Day 2016: Independence is about... CHOICES #strongerthanMS

Writing about choices is basically my “bread-and-butter” on this blog. Everything we are or do boils down to choosing the way we act. Today is MS Day and the theme for 2016 is Independence. I’ve written about choice before, HERE, HERE and HERE.

Me and independence go way back. Since I can remember, I have always been that fiercely independent kid, that although needed protection and care like any other, also had a mind of its own. As I grew up, sometimes the social peer pressure to conform was acting strong. I mostly kept my own points of view and tried to make my own choices. At the same time I made sure that nobody got offended.

Here is where I made the mistake. Other people will always have something to say. No matter what or how you do it, they will always have an opinion. Guess what? That’s their own independence and ability to choose acting up. People might get upset or hurt because of your choices, but as long as you act from your best intentions, it will all be OK in the end.

Experience made me understand that the best outcomes are those in which we feel like our truest selves, without minding what others might say. As we grow older, social pressure to conform to what the majority or the authority thinks gets excruciating.

We become afraid that if we don’t mold ourselves to those patterns, we’ll become outcasts, excluded from society. Conformity is most of the times driven by fear and by what we can lose when we rebel.

The funny fact is that we all have nothing to lose. We all die in the end. We don’t take nothing with us. Of course there is also pain, sadness, loss, worry, compassion and all that. But nothing lasts forever. Our world is constantly changing. We change.

That’s the only constant we have: change. Our greatest ability is then adaptation, the capacity to adjust and readjust to the ever changing conditions life puts us through. 

We all get to choose how we react to what’s happening to us. That’s what I understand as independence.

Being given a diagnosis of having an incurable chronic illness, puts things into perspective. At least for me it definitely did that. It made me think about my fears, my loves and my angst. Interesting journey, by the way!

It’s fascinating what you can find when you dig deep within yourself. When you take time to, little by little, analyze old wounds and ask yourself why did that happen and why did it matter that much? When you realize that all that you’ve been searching for all along, things like acceptance, control, calm and most importantly, lovehave all been inside you all along.

When you understand that it’s all right to not be in control all the time, that there are higher forces at stake and your best ability is to adapt, accept and overcome the crisis you may go through.

You get to a point where you no longer regret the past and fear the future. You become at peace and begin to make change happen for others. Because you realise that we all have limited time and our mission is to make it count.

I might as well read all the books in the world, I’ll not go with all the knowledge to the grave with me. Then what’s the point in learning and knowing things? Teaching others, leaving a legacy and growing others through what you accumulate. Pay it forward. Be kind.

At the end of the day, we all get to choose who we become, given our specific contexts and opportunities. It’s that simple.

So, that’s what independence is for me.

MS doesn’t stop me from… choosing to adapt & pay it forward. #strongerthanMS

Happy MS Day! Or better said: Be happy to overcome MS each day ;)

Yours truly,

EMSP Annual Spring Conference 2016 (Oslo, Norway) - Young People's Network: Insights on Readjustment & Staying Ready

Change is inherent to all forms of life, especially true for us as human beings. As things in today’s society evolve so rapidly, we need to constantly adapt and find our way through it all. Things are often complicated and exciting at the same time, and for some of us they are enough as they are. But sometimes faith decides to add some spice to it all. Enter multiple sclerosis, our common friend.

Last week in Oslo, during the main EMSP 2016 Annual Spring Conference (I talked about it HERE), there was also the meeting of the Young People with MS’s Network. This was the 6th year since the group first started, aimed at raising the voice for all young people living with multiple sclerosis throughout Europe. For two days (18-19 May) we brainstormed and came up with ideas and plans to get the YPN moving forward.

The EMSP was kind enough to offer bursaries to a limited number of young people who wished to participate. There were also “veteran” members who only added more insight and experience to the ones who were just starting their journey. We were divided into four groups that each brainstormed new and useful ideas.

This year the aim was to discuss about readjustment in all areas of our lives while living with multiple sclerosis.

Usually, by “adjustment” we understand a change made in order to fit, correspond or conform to a certain state of things. It means to adapt or to accommodate something or someone to a new situation or context. It is self-explanatory that to “readjust” means to adjust again, to rearrange the pieces so that they once more fit the puzzle. The puzzle of life with MS in this case.

Change is inevitable. I’ve written about it HERE, HERE, HERE and HERE. As we grow old, we change. We even change as quick as from minute to minute in some cases. And that is especially true when one minute we’re our old selves and the other we find out that we have an incurable disease named multiple sclerosis. How do we go on?

We all react in different ways to shock. Some get afraid, some become angry, it depends. We all are different. But we all readjust as time goes by. Each in our different times, with our different struggles. Some people refuse change altogether. They deny anything happening to them and try to go on living as they did up until then. But sooner or later, reality comes knocking, waking them up. 

Readjustment needs to be done early. We need to be prepared. (Tweet this)

This was the context in which our discussions began. We exchanged opinions on how the situation is in each of our countries and more importantly, what have we done on a personal level, to adapt to what I may call “our new normals”, how did we readjust to life with multiple sclerosis?

Little to no surprise, the common denominator was the fact that multiple sclerosis is something you can live with if you have the right tools to transform our lives for the better and be prepared to what’s to come.

Life is unpredictable by itself, MS adds to the equation, but it’s vital that we get to know our enemy as best as possible. Thus the need for reliable information on MS was one of the first points that we all agreed on.

Leading a healthy lifestyle (nutritious and clean food, exercise/movement to get the blood flowing, rest/relaxation and not forgetting treatment) that fits our own conditions and likes was another.

Finding balance between activity and rest is needed in order to help the body and thus the nervous system relax and repair what it can be repaired. Fatigue being one of our “arch-enemies”, resting enough is paramount, as to also help with general wellbeing, better symptom management and a clear mind.

We all agreed that prevention is more important, and that we each need to design our own lifestyles, according to our bodies needs and personal preferences. The emphasis was put on health and wellbeing.

Being our own best friend and always finding balance and support within is another readjustment and staying-ready tool. The most important contributor to our emotional, mental and general body health is ourselves. No one can help us if we’re not willing to play our part, if we’re not letting people be next to us. At the same time, we agreed that things change, so the most stable rock that we have is our own self. When everything else fails or disappears, we will always have ourselves. Be friends with our own person. Our body is already putting up a fight with MS.

Having systems in place and daily routines are also of great help (more about how our brains help us with that HERE), as they automatize and save time with our daily activities: saving energy and easing up cognitive input. Systems are of great use for almost everything you might think of: have one in case of a relapse (who to call, what to take to the hospital, what comforts you, things to say/ask/do, etc), one for morning and one for evening routines (train your mind to do certain things without thinking, you’ll save energy; remember to be flexible though, allow space for adjustments), or for anything you might have going on in your life. Personalize them.

Last, but not least, having a support group to reach to in times of need is also important. We thought of having a group of peers, of fellow young MSers who will be able to understand and listen to you without judging. The feeling of belonging is very important, especially when you might feel out of place because of something MS-related.

After all this was said and done (noted down :) ), we agreed on the need to have practical advice to give fellow young MSers. Each of us was asked to think of ways to adapt what was discussed to our own local contexts, to draw inspiration from all these ideas and see what we come up with as to best serve the interests of young people with MS in our countries.

We thought about creating toolkits for the Young People’s Network, to be used in things like goal setting, accomplishing dreams, relationships, career, disclosure etc. Email was identified as the best way of communicating between us, as were moderated discussion groups and the influence of young people’s advocates that can empower and help with supporting one another facing MS.

We came to talk about empowerment tools like access to jobs, courses and anything that will help a young MSer become who s/he wants to become, while staying an active member of society for as long as possible and with the most benefits (ex: financial security, emotional wellbeing, mental health, healthy relationships, etc).

We were encouraged to imitate how the EMSP network of young people came to be and draw inspiration from that in order to replicate the system into our respective countries. Change always starts with and within a community.

Each group thought of ways to attract YP to join the larger community. We ended up with ideas like:
  • create workshops on YP MS and life issues (keep it relevant), practical advice to their problems;
  • somehow connect all / national groups into one coherent network that supports and empowers young people with MS in Europe;
  • stay in touch within each region (exchange ideas and know-how);
  • act like experts in your own local networks, providing insightful and useful information while remaining approachable and adding a personal touch;
  • allow each member to feel welcome and like they belong, activating and organizing YPG in each country, get people on local / national level together (events, join in activities);
  • give examples, offer templates, share practice, inspire - be an example and show / share other examples from the rest of the people in YPN;
  • write articles and advertise them (get them to the people who need them most),
  • focus on delivering inspirational messages (ex: Lori, Steiner) and on the psycho-social aspects of MS (YP are part of friend, work and family groups - how does MS affect all that? Find ways to make things better);
  • discuss what the message will be about in your area and find ways to optimistically explain to YP that they too can climb their own “Mount Everest”;
  • find what’s missing in our countries (the “blind-spot”) and come up with a plan / ideas.

Remember that we are not our MS. It is just a disease, an imbalance inside our body. We are all much more that that. Reimagine our ambitions and create new ways in which we can achieve them. Become the architects of our own lifestyle. Design our road to personal independence. We are #strongerthanMS.

Thank you & it was a real inspiration meeting all of you,

Denisa Paslaru (Alexandra Celic - alias)

P.S. Feel free to add or comment upon all the things written above. Collaboration is the foundation of growth.