Sky, Sea & Me

Since Oct 2014, I feel stuck in a space somewhere between the sky and the sea. As is the case for most of us, MdDS invaded my life once my feet touched the ground after a one-week cruise. Since the variation and intensity of my symptoms continue to be as unpredictable as the weather, I try to cope with my new condition… armed only with an uncertain forecast.

As a Mental Health Nurse, I know that it is primordial to protect myself from falling into depression. As a trained Creative Art Therapist, I have learned that I can find salvation and resilience through the process of painting.

As such, I forced myself to start painting in November. At first, I did not have any inspiration. I was discouraged. I painted with no sense of direction. I was lost. But I willed myself and kept going in my studio almost every day, missing out only when the symptoms were too debilitating. Using the same canvas, I added layers and layers of acrylic paints upon what I considered as failed attempts at producing something of artistic value. My goal was to keep at it until I felt that I had “finished” this first painting.

During that initial three week process, I gradually forgot about the rocking, the sensation of unsteadiness and loss of balance. While painting, I gradually had the feeling that I ceased to have cognitive impairment, fatigue or memory lost.

abstractlandscapeOne day, I finally felt that I did not have to add more acrylic on the canvas. As I stepped back, looking at this abstract landscape, I was astonished by the movement that I had been able to create. But most of all, I realized then that I was able to project my symptoms on an art piece! That was the creative path that I was looking for!

Having found a purpose, I decided to produce a collection of paintings for an eventual exhibition. This project surely helped me cope with this syndrome. It gave me hope, offered some relief from my symptoms, and most of all, enhanced my self-esteem.

Most research attests to the value of healthy self-esteem to overall health, both mental and physical. It can boost the immune system, protect against disease, and aid in healing. It often has a bearing on whether people do or do not get sick and, if they do, how long they stay sick. Some evidence, for example, shows that recovery from mononucleosis is related to ego strength; the higher the self-esteem, the more rapid the recovery.1

So, I tried to be emotionally healthy. My studio is now a safe place where I experience one of the most uplifting experiences since I have been forced to live with, and decided to cope with this debilitating syndrome. Indeed, sitting in front of the canvas, I don’t feel lonely anymore, nor helpless or useless: I am creative; I… am… alive !!!!

Therefore, I have something interesting to talk about. When I meet with family and friends, the conversation is not entirely focused on my sickness anymore. Tired of being on the receiving end of their worries about my health, my artistic journey took them somewhere else and elicited in them a genuine interest. In that light, the projection of positive feelings about my work seemed to have a boosting effect on my emotional state and physical well-being. The support of family and friends who are accompanying me along this path is of great value to me.

Entre ciel et merThe night of the Vernissage, I could see in their eyes that they were proud of me! However, the day could not have started in a more difficult way, as I felt the devastating effect of a personal sea storm brought about by symptoms reaching 7/8 on the severity scale. I stayed in bed most of the day hoping for a bit of a lull. I kept reminding myself that the intensity of my symptoms is always worse in the morning. I was stressed, but so determined to be there at 5pm, whatever my internal weather was.

Between sky and seaWhile my sister took control of the logistics, my husband assumed his usual role of “protector, chief of positive thinking and personal clown”, with the ultimate mission of cheering me up! As always… it worked! After 34 years of marriage, Luc always knows how to make me laugh. So, within an hour after our arrival, my stress level decreased and I was able to feel my symptoms steadily declining, not unlike a receding tide. Looking at my work, with a total of 22 paintings hanging on the walls, I felt really proud of my achievement. It was a challenging and soothing experience at the same time, because I felt that they were my babies, and I had to let them go. But mostly, I knew that I had to reveal myself and explain away this illness, as it was so central to the direction my artistry went.

chairEven though my symptoms kept diminishing, they were still strong enough that I had to keep hanging on to different chairs for balance, as I was walking from painting to painting while explaining my creative process. As time passed, I became so involved in the discussions that I began to forget about having to use my hand to maintain my balance, having somehow been magically freed, even if it was for a short time, from that cursed swell.

MdDS is not a mental illness but it does affect our mental health. So, I would like to share this cornerstone definition of recovery from a mental illness, developed by William Anthony (1993). Recovery is “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”2

Artistic expression such as painting does not provide a cure for MdDS but for me, it is the key for a better recovery. This is how I strive to have a meaningful life beyond MdDS.

Johanne Roy
7-day cruise

Video of my exhibition: https://www.youtube.com/watch?v=ptuGywh3rAk
http://www.facebook.com/artiste.peintre.jroy

[1] Floyd, P.A., Mimms, S.E. & Yelding, C. (2008). Personal Health: Perspectives and Lifestyles, Thomson (4th Ed.), p. 32.

[1] Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990’s. Psychosocial Rehabilitation Journal, 16(4), 11-23.

About MdDS Foundation

The mission of the MdDS Balance Disorder Foundation is to promote education and research on Mal de Débarquement Syndrome. We are dedicated to finding the cause and cure for MdDS.
This entry was posted in Faces of MdDS and tagged . Bookmark the permalink.

26 Responses to Sky, Sea & Me

  1. Pingback: Weekend Links & Updates | Retro•pulser

  2. kate Sanborn says:

    Thank you Joanne for sharing your inspiring story. I have also turned to the canvas, a retreat from the symptoms that increase with most other activities.

    “As such, I forced myself to start painting in November. At first, I did not have any inspiration. I was discouraged. I painted with no sense of direction. I was lost. But I willed myself and kept going in my studio almost every day”.. ❤️ This!
    . I’ve been struggling with the point of painting.. & trying to make it a daily practice to push myself through this negative talk. It’s healing when I’m in the space.
    I also have been building up the canvas, then sanding it down, & then going back in. Had never thought of my paintings as reflecting my disorder, but how could they not?
    Thank you again for giving me courage to just move on (in more ways then just creatively 😊) it is absolutely healing, & one of the few spaces I find I get lost & forget my MdDS. With much gratitude, Kate

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    • Johanne says:

      Allo Kate ! So glad you share your own creative process and experience with healing and art. You wrote : It’s healing when I’m in the space. Yes !!! Exactly ! It is.

      «As for the healing process, Dr. Kolker relates, from personal experience and through observing patients, how introducing any form of creative expression—visual arts, music, literature—enhances convalescence. Simply put, patients feel better faster.»

      http://www.artandhealing.org/2015/03/pauls-story-physician-artist/

      I think you will enjoy reading this article. Continue to get «lost» in your space and forget about MdDS. Have a creative recovery, Johanne!

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  3. quentin says:

    i will be going for treatment August 25 MdDs at Mt Sinai. will let everyone know how it goes. they are really backed up. everybody seems to be making appointments with them. the nurse told that about 70 % of the patients come away with good results though. hopefully, im one of them.

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    • carolyn s. schregel says:

      Wonderful. Thank you for sharing

      Sent from my Fire

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    • Stephanie says:

      I did the treatment at Mt Sinai this past Jan. I actually only did 1 day as I do not have the typical from a cruise MdDS. I just want to warn you about the potential for severe migraine afterwards. They did not warn me even though I asked many questions about potential side effects. I had a migraine on the right side of my head for 2 weeks straight. I felt awful. Then it went away and I began to feel so much better. The rocking has greatly decreased so I can function while grocery shopping and driving somewhere and walking into a place. I’m not completely cured and definitely get worse when stressed or tired. I hope it goes well for you!

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      • quentin says:

        thanks for the comments. I didn’t get MdDs from a cruise or a boat ride either. Im going to call them back, to see if that changes any thing. question? how much did they charge you? if u don’t mind. they told me $2500. 5 day treatment.

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  4. Judith Loree says:

    Thank you for sharing your success with your “journey” with MdDS. It helps to hear the intimate struggle someone else is battling with this horrible & invisible disorder. Telling someone how each day is a test to struggle through the debilitating rocking dizziness isn’t easy for others to know the exact misery one is feeling so hearing what another MdDS sufferers story helps to give strength to others who fight the fight each day. Thank you. Yours is a tribute to your strength & &courage to continue fighting the battle against this mysterious & unrelenting curse of a disease! I appreciated reading about how you have turned this ugly disorder into a beautiful & successful fight. It is truly beautiful to read how each day you fight this struggle that has no known cause yet or cure. It comes mysteriously like a vapor & it’s strength of destroying ones life is great but your determination is greater! Your story has touched my soul & makes me cry cause as with my own struggle each day to try to live a “normal” life it helps to gain strength to continue on the struggle hearing about another’s victory over this monsterous & invisible disease. Thank you-Judy

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    • Johanne says:

      Allo Judith, keep the struggle alive ! We are not that disease. It’s part of us but it is not going to take control of our lives. Recovery is not a strait road…. it’s a bumpy one !

      I am glad that my story touched your soul. Thank you for sharing your thoughts. Best to you. Merci 🙂

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  5. Tod says:

    Hi, Joanne, I had my story on here too, I’ve had mdds since 2010. Some days are worse than others and tiredness and anxiety are huge triggers but really, I’ve come to realise this condition – for me anyway – is only limited to the rocking/swaying symptoms and nothing else. No fatigue or headaches. It’s also good to know that the condition will never progress into something more sinister. I do a delivery driving job and am leaping in and out of my car running up and down flights of stairs. Give it time, I think it’s probably just like living with a small defect, you always know it’s there, but you learn to live with it and in the end it isn’t serious enough to have any impact on how happy you will be for the rest of your life. It’s just another thing you’ll have to deal with, good luck! We’re all rocking with you 😉

    Tom

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    • Johanne says:

      Allo Tom ! I am so in tune with what you wrote as I am fighting every day so this condition does not take control of my life. Armed with my brushes and paint, it’s way much easier to deal with it and be completely happy ! Thank you for sharing and rocking with me and all of us !

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  6. Sue says:

    I too am an MdDS sufferer and have been for almost 20 years. I began art courses just before my cruise and have since been an avid oil painter and have used acrylics as well. . And there is indeed movement to portray. I do find that impressionism and abstraction are my best bets always due to the inability to see a straight line, much less paint one. Your work is beautiful. Wishing you the best of luck in your recovery.

    I am just resolved to living with the constant rocking. There may be some hope at Mt. Sinai and I am curious as to whether anyone on this site has tried their recently developed 5-day treatment.

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    • Johanne says:

      Bonsoir Sue ! 20 years with MdDS…what a journey ! Hope I could see your paintings. Do you have a website or a Facebook page ? Let me know. Good luck with this new 5 day treatment. As for me, I am going to try to have an appointment with a physiotherapist in Montreal who is apparently an expert in vestibular and vertigo disorder. Let’s both stay positive and apply a lot of paint on those canvas. 😉

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  7. Mickie Agee says:

    Johanne,
    Your work is incredible! I find that it so vividly displays the emotions that we feel with MdDS. It is so wonderful that you were able to find a way to express yourself during this challenging part of your life and learning that you “can find salvation and resilience through the process of painting.” I can’t even imagine being able to express my feelings of MdDS as beautifully as you have done. Your words and paintings are amazing! Thank you for sharing. I too am a MdDS survivor and in remission.
    Mickie Agee

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    • Johanne says:

      Hi Mickie, thank you very much for your kind words. I feel so blessed that I have the ability to forget about EVERYTHING when I paint. This state of mind could last for hours as long as I paint. I believe that this peaceful moment has a healing effect on me. This is my way to practice my “yoga /meditation” with brushes and acrylics ! I am not a survivor yet…but peacefully and surely working on it !

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  8. Elaine Schlissel says:

    Thank you for telling your story. I shared it with a friend of mine who is a noted watercolorist and who is extremely ill. The story resonated strongly with her too.

    I wrote my story in 2013. I have been well since then. I am fighting hard to stay well.

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    • Johanne says:

      Hi Elaine, I hope my story could help your friend. I am experiencing a second remission right now and hope that this one will last. Hope, staying mentally healthy, support from close friends and family are so important. I read your story and find it very inspiring. Let’s both fight hard to stay well. Take care 🙂

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  9. Marla Cruise says:

    Johanne, I love the fluidity of your paintings and also your style of writing. As a former operating room nurse and fellow MdDS survivor I applaud your perseverance and agree with your position that we must find things in life to take our minds off our illness and to continue to seek ways to enjoy our life while living with the limitations caused by MdDS.

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    • Johanne says:

      Allo Marla, I think I enjoy writing as much as painting ! Also, writing in english is such a fun challenge ! We have much in common dear nurse colleague and I hope that I will be able to say that I am a MdDS survivor as well in a near future. Merci !

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  10. Sarah says:

    You have expressed all the mental angst mdds causes so well and your paintings are beautiful. Thank you so much. I feel more hopeful than I’ve done in years.

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  11. Katie Miller says:

    I love this collection! Are any of your pieces for sale? I also suffer from MdDS and your art speaks to me.

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  12. pollymoyer says:

    Johanne – thank you so much for sharing your journey with MdDS and your art work. The paintings are beautiful and a great reflection of your determination to live beyond this debilitating condition. My only concern is about the acrylic as I know a lot of us have bad reactions to strong smells [sic] – but maybe you don’t : ) I hope you go into full remission very soon. Many thanks again, Polly

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    • Johanne says:

      Bonjour Polly, a big MERCI for your nice comments. Yes, I do try to live beyond MdDS but I am also aware that I am very fortunate to have lots of support, both at home and at work. FYI the acrylic paint that I use do not smell. I am also very careful when I buy my medium and varnish to get non toxic products. Best regards, Johanne

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