Hello! I’m Victoria and I live in Argentina.
My story with MdDS began in 2013 after a cruise to Greece. Living on water… that’s how I felt. I felt like I was falling into a hole that was never ending… until I started to connect with the possibility of getting out. Between accepting what happened to me and the determination to want out, I started the journey of “coming home”.
I had a hard time getting the key in the lock.
I barely took three strides and plunged face down into the gray armchair in the living room. That would be my place for a long time and that, my position. Face down, the symptoms become milder.
I don’t know how long I was there until I felt eight eyes resting gently on my neck, accompanying me, without making a sound, in case I slept.
I sat up. There, in the living room of my house, in my gray chair, moving to the beat of the internal waves, I looked my children in the face and told them everything we talked about with the neurologist. I don’t know if you understood, but there was a diagnosis and it was not terminal.
I felt their sighs of relief. It was not terminal. Or maybe yes. I would never again be who I had been until that trip. ~from DESEMBARCO
It was six long years with horrible landsickness that led me to turn my life around 180 degrees. And when I was convinced that I could heal, it happened. I wrote a book called DESEMBARCO. If you’re having a hard time accepting what’s happening to you, Desembarco is a book that speaks of depths and also of overcoming. Maybe you will resonate with the paintings I made to illustrate what was happening to me. And may be happening to you.
I hope my book touches anyone who is at the “bottom of the sea” and can’t find their way out. You are not alone. You can do it. 😄 ~Victoria Cantarelli
We hope Google Translator did a good job and conveyed Victoria’s intended message. Ask her questions or just leave a supportive comment below.
I believe I have MdDS but doctors have not diagnosed it. I was on our boat for 3 months in 2020 and on returning had an episode where I fell and broke my wrist. I seemed to have no sensation of falling but since then have felt as if I am swaying with what I can only describe as brain fog.
I told my doctor that I believed I have MdDS but she hadn’t heard of it. However, she has arranged for me to have vestibular exercises at the end of October but I don’t hold out much hope from what I’ve read. I also am Hypothyroid and am not sure if these symptoms relate to this condition. It’s all very confusing.
Physical Therapy may help to improve imbalance which, given your fall, may be important for you. It is not known to be helpful with the sensations of rocking, gravitational pull or other classic symptoms of MdDS. Brain fog is common among us. You will find a list of typical symptoms on our website here: https://mddsfoundation.org/symptoms/
If you provide the address, our Provider Outreach volunteer will send an educational packet to their practice. The packet will include educational brochures (to give to newly diagnosed patients), quick-reference knowledge cards, and the MdDS diagnostic criteria (to share with other busy healthcare professionals). Please write to us at connect@mddsfoundation.org
I thank you Richard for asking important questions here. Sorry I am not native English speaker, so I try my best to reply. When I come to this website to find answers for my daughter, I see this post. I work as healthcare professional. I see scammers target my patients sometimes. Scammers say exact same things like artist does in this post. They you heal by accepting your situation, believe in yourself, and do meditation. Then I notice artist does not answer Richard’s questions. Just like scammers I see who target patients, they do not answer question either. My daughter play lot of sport and run marathon. She is very healthy but she still have MDDS for over a year from airplane. She went into internet group where they tell her to meditate and accept her situation. I see her try so hard, but meditation not working. She ask them why mediation and acceptance not working. They tell her she try too hard. She try less hard, and it does not work. When she ask more question, they ask for more money. When I ask my daughters neurologist, he say if you are trying to be healthy MDDS will go away with time. They do not know how long. If cure for MDDS is determination that artist who post this cannot even define, why do we need research into treatment or cure?
I see foundation’s reply. If mistranslated, why not translate correctly? Artist says: And when I was convinced that I could heal, it happened. She does not say how in real way. Maybe artist fall for scam and not know it, but she was lucky that her MDDS go away anyway.
I love the artwork 🙂 I thoroughly enjoyed The Champ & The Chump by James McNicholas which covers his lived experiences of MdDS alongside a great biography of his grandfather, who was a boxer. Possibly a little too much emphasis on ‘stress’, for me, but worth it for the inspired line ‘it’s hard to feel like a man when you feel like a buoy’ (buoy is pronounced as ‘boy’ in the UK) and it’s hilarious throughout. It also covers the mental health issues around MdDS in a way that I found sensitive and empowering.
I’m not sure I understand the message of this book. Maybe there’s a mistranslation? She’s saying that she had to be accepting of healing and then determined enough to heal. Does that mean that people with symptoms are not accepting nor determined enough to heal? If so, how does even measure something like acceptance or determination?
We are sure there are some who resonate with Victoria’s message as presented here but “lost in translation” is certainly a possibility. Even so, Victoria’s understanding of her own situation is highly personal and not a universal given for those who suffer with symptoms. One may require acceptance to move forward, another not. One may require a diagnosis to move forward, another not. Everyone’s health journey is different.
Your artwork is stunning, thank you for sharing it and your story.
I have been suffering with MDDS for 45 years, each day is different.
Gracias! En cuanto lo tenga traducido les aviso.
Thank you! As soon as I have it translated, I’ll let you know.
My journey started in 2004 with Ramsey-Hunt Bells palsy which has a vestibular component. I listed to the left like on a ship and severe migraines, then facial paralysis. Took 6 weeks, but I had a full recovery. Or so I thought. 2013 went on a roller coaster ride at California Adventure. After which I had periodic episodes of what I later found out to be MdDS. Took 9 months to identify.
I returned to work as an Occupational Therapist even though I still have symptoms. As an OT, I assist others to return to their life and often with adaptations. That’s how I have been able to continue to live daily with MdDS. Adapt and move on. #9yrs #strong.
To Joe and everyone wondering, Victoria is working to have the book translated. We’ll let everyone know when/if it is and if it can be shipped internationally.
Victoria- I too have had this since a cruise in 2013. I am fortunate though, mine comes and goes- generally about 4-5 months at a time. I am so sorry that you have had this for so long. But I am always moved by those that are able to make lemonade from lemons. I hope that you find relief someday!
God Bless-
Shellie
Where can we purchase the English translation of your book?
Thank you for your post! I’ve had MdDS for 9 years now but I have hope and positivity that I will eventually heal! I try to make the most out of life. It’s more challenging for sure but I’m so grateful for so many things…,I think MdDS did that for me. I don’t take things for granted. I am active, social, play sports, have two kids that I’m constantly shuttling around. It’s all possible. It just takes some patience and perseverance.