Storytelling MS: Feelings from a lonely soul (by Louise S.)

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.

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 book “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. 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.

This week, I invite you into Louise’s story. With or without MS, life is worth living. It will all pass. We are stronger.

AND SO HER STORY GOES

"Sitting recalling events from a life long passed, I wonder how life became so cold, almost unbearable. My words and thoughts are rarely heard by others. Only by writing, can I feel truly free without judgment or criticism. Pity was neither welcomed nor needed, only a familiar face that was a close friend. Long days and even longer nights, have allowed me to reflect on memories of happier times.

An abundance of friends, fearless in groups and always ready to meet new people. You never anticipate the loss of a personality trait, the realization of your new reality leaves bewilderment and fear. Fear of never regaining the zest for life and confidence once held. Wondering if and when communication and laughter, would flow so effortlessly and meaningfully as before. The ability to connect with others, seems daunting even impossible. I struggle daily to convey my thoughts verbally, as I'm ashamed of this fearful, feeble, weak person I've become. Unrecognizable passing time until I'm reborn, and ready to start living! Self acceptance was never my strong suit, but I'm trying.

All my girlfriends are mothers now, and busy nurturing their children. I now have phone friends, since most have moved far away. I've been on long term disability for eleven years now, so meeting new people, and socializing is foreign to me. For many years I didn't want to leave my house, because I felt so horrible with the devastating effects of Multiple Sclerosis. Now I feel better than I have in years, and wanting desperately to feel comfortable in social situations. I feel like I'm the new kid in school, who has zero social skills and drowning in her fears.

I feel like I'm the new kid in school, who has zero social skills and drowning in her fears.

This is a turning point in my life, as I need and desire the interactions with new people. I should be amazed at how far I've come, especially when considering where I've been. 

About five years ago my words were very muffled and inaudible. I was tired of my friends and family, asking me to repeat myself. Not talking was just a better option, or one word answers that were guaranteed not to require more explanation. I knew at this point spoken words, were difficult to say, let alone my word processing and retrieval were noticeably impaired. I spoke very slowly, and I was frustrating to others who were obligated to listen to me. I basically could not carry a conversation, so I lived like a hermit in solitude! It felt like I was imprison in my own mind, speaking to select friends, family and my husband. I understand that I was stubborn, it's a wonder that the remaining people didn't give up on me. Like the saying goes, "you find out who your true friends are, when going through the toughest times"! That is very true, just hard to accept/understand.

Like the saying goes, "you find out who your true friends are, when going through the toughest times"!

Now I'm finally feeling better, needing and wanting to revamp my friends and start over. It's going to be the hardest to overcome my comfort zone (my home), but I'm tired of the same daily routine. Change is seldom wanted, but in this case required. It's time to start living again, I'm just not sure where to begin. Trial and error will be my new normal until I can feel comfort in my own skin.

This is challenging, being 40 and realizing that everything is new and different than before. I never understood people with MultIple Sclerosis that say, "I have MS but MS doesn't have me". In my case MS has had me for the past 11 years or so. In all honesty, I feel MS has definitely changed me. I can't say for certain if it's a good or bad thing, just different. I can say, I have experienced true pain and impossible situations, but I'm stronger for it! My life is very different than the way I had envisioned it, but I really believe it's how you handle negative situations that will make or break you.

I never understood people with MultIple Sclerosis that say, "I have MS but MS doesn't have me". In my case MS has had me for the past 11 years or so. In all honesty, I feel MS has definitely changed me. I can't say for certain if it's a good or bad thing, just different.

Yes I would had loved to have kids, and that feeling of life growing inside me. Realistically, MS has stolen that opportunity! I don't want to admit this, but that is my one wish, that I could have been a mother. Adoption is the only way, but my own biological child is out of the question, since having had a bone marrow transplant. It was done to halt the progression of MS, a decision made, at the time, as it was my only alternative. I guess I can't blame MS for the inability to have a child, in hindsight I would have protected my eggs for future use. I am very grateful for having had the BMT, but sad that I will NEVER have any biological children.

That contributes to the loneliness I'm so familiar with. I am slowly dealing with my emotions surrounding my biggest hurdle; loneliness! I never anticipated being so young, and being in a wheelchair. Reality is, people do not want to associate, socialize, let alone being true friends with a person in a wheelchair. That's been my experience. I don't understand how so many friends I held for years, progressively dwindled as my MS progressed. It is challenging to reveal these feelings I buried for an eternity. I thought things would change, but nothing has! I'm brutally honest, as I know that these feelings are all too common among wheelchair users. I try focusing on the future, rather than being stuck in the past. Only facing my truth and acknowledging my faults, will things change.

I try focusing on the future, rather than being stuck in the past. Only facing my truth and acknowledging my faults, will things change.

The first thing I must change is my perception of who I am. I will not accept MS as being my fault, its only my reactions to my unique circumstance that are my "fault". MS will always be a part of me that will never change. Today is a new day, where I promise to live the life I want regardless of my diagnosis. I will stop apologizing for my health and things I can't change, I will choose to say I can and I will, I will set new goals starting today, I will not sweat the small things and be grateful for what I have. I will learn to laugh again, and feel comfortable around others. I will stop thinking that others are judging me, some might but I will not care. I am me and I embrace the future, with MS being as my sidekick, rather than MS defining me as a person. For all the naysayers out there, never assume I can't because that just fuels me even more.

I consider myself to be an advocate for the disabled and strive to make everyday count. I am not perfect by any means, I'll have bad days (like everyone) but make it my mission to carry on living the best life I can. I choose to be happy, resourceful and independent. For many years I lived like a hermit, but those days are gone. I am truly living, creating/inventing to hopefully make a positive impact on the world, specifically with disabled individuals.

I am truly living, creating/inventing to hopefully make a positive impact on the world, specifically with disabled individuals.

Currently I am working on an accessible, functional swimsuit line called Advanced Freedom. Swimming is my absolute favorite activity. As I progress with this disease, I realize that swimsuits were definitely not created to include all abilities. I've had bladder issues from the onset of MS. The typical one piece swimsuit is just not practical to dress/undress, especially for a disabled individual. When the swimsuit is wet, it creates an almost impossible task when needing to use the washroom. Since I go to the washroom frequently, one piece swimsuits presently are just not an option. Once all women reach a certain age and/or having had children, coverage of the mid section is of top priority. Shouldn't there be an accessible one piece that provides coverage, while accommodating the need for going to the washroom?

To tackle this issue I've invented a "one piece, two piece swimsuit". It's a beautiful one piece swimsuit, that is actually two! The top and bottom portions are held together by magnetic buttons on each side of your waist. The magnets are waterproof so chlorinated or salt water doesn't affect the strength or condition of the magnets. It works beautifully and can be worn by all women. Women of all abilities, sizes and ages can now find their one piece transformed into the new, more convenient, two piece. Unlike regular tankinis the swimsuit will not ride upwards in the water. It is considered a one piece to everyone else.

Tankinis can also stay tankinis with the magnets going down the back/side of the upper portion of the top. It resolves two problems, one being it keeps the tankini in position when in the water, and two being more accessible for people who cannot raise their arms over their head. It also adds an extra element of style to existing tankinis.

It is my mission to make disabled people feel more comfortable in their own skin, while feeling included in society. I'm starting with swimsuits because I feel disabled people have been forgotten when designing bathing suits.

It is my mission to make disabled people feel more comfortable in their own skin, while feeling included in society. I'm starting with swimsuits because I feel disabled people have been forgotten when designing bathing suits. It's especially close to my heart, as I myself almost gave up on a sport I loved so much. Not to mention the benefits of swimming for a disabled person.

It is also a project that I will be proud of, regardless of my circumstance. Multiple Sclerosis has not and will not change my mission in life. While loneliness is still my biggest hurdle, in time I hope that changes. I think through making inclusion a priority, things will fall into place. Society as a whole will not change, if there isn't people with disabilities fighting for the greater good.

It's all about trying to keep busy, and providing something that will help others. The swimsuits are only my first idea, my thoughts are never ending. Others won't hire me, so I'm hiring myself. If it can help me, it will help many others in similar situations. Life has altered my initial plans, but I'm creating new ones. Life is not measured by suffering, but rather by giving your outlook and positive reach to others.

Louise

P.S.: If you are interested in learning more about this adaptive swimsuit called Advanced Freedom, I am on Google+ under my name Louise Sertsis."

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 #storytellMS?

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

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.

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.

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

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

We spend our lives mostly just reacting to what’s going on around us. The world happens to us and we get swayed around by it, thinking that we have control. The essential thing that we really need to be on top of is never found on the outside, but lays deep down inside our hearts and minds. Our first reactions are always emotional ones. After a few seconds, the mind kicks in, trying to make some sense of what has happened.

Emotions are crucial for body and mental health. They generate all kind of internal reactions, ranging from pleasant to damaging ones, things that either help or hurt us. The more we have the one or the other, the more we change either for the better or for the worse. I’ve written HERE about how a repetitive reaction can generate a pattern that in turn will shape our lives.

We tend to spend a large amount of time complaining. Let me give you a few random examples to somewhat illustrate my point: difficult situations, illness, low paychecks and even rain sometimes. From here, it all seems to go downhill.

But what happens when we’re happy about something? How does that transform our day?

The way we react to what’s happening defines how our lives will eventually become. Good or bad, happy or sad… it’s our choice how we interpret what happens to us. Transformation always happens from within. Choose to be grateful for every little thing that’s happened to you. Find light even in the darkest corners.

I choose to be grateful even for my tough times, even for my MS. I’m the kind of person that keeps on smiling even after I’ve cried my eyes of in fear and anger. I bounce back somehow. I’m still searching for the way I do this. All I can say right now is that I know I’m not the only one who can do this. Each individual has his/her own mechanisms and systems in place.

That’s why I’m sharing stories of my life with MS. To let you know that you’re not alone. That it has ups and downs, basically a rollercoaster ride. That’s why I’m reading all kind of MS stories: I get inspired and humbled to keep going forward, to be grateful for what I have and to have the insight to be able to help others.

Gratitude creates a ripple effect that in turn helps you go smoother even through the hardest times. You learn, you grow, you keep faith and hope it will turn out OK. Grateful for being alive.

MS doesn’t stop me… from seeing the good in life. #strongerthanMS

The rest of May is enough time to 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,

Alex