In September 2018, Lidia ran the Rome half marathon to honour her late mother Stella, and to empower and collect money for me: Maya Levi, diagnosed for 15 years with Multiple Sclerosis, with recent devastating consequences in the form of reduced mobility, and increased disability.
Although I am a very social person, my struggle has always been a personal thing. But this time was different. During the few months before July my condition had deteriorated so much, that I understood that soon I will need a wheelchair. I was crying a lot. I couldn’t stop crying. I was scared and couldn’t hold it inside.
It is hard to dare asking for help, and I always tried to do it by myself. But with the help of a friend like Lidia it’s easier to be vulnerable. I was amazed by all the donations coming from around the world, people I used to know, friends, and mostly from strangers.
I was humbled, but I also felt the obligation to start exploring the new-Maya.
I made a commitment to myself that for everything I cannot do anymore, I will try at least one new thing. With all the blessings from all of you, I was able to go wind sailing and I finally dared to ride a horse. The empowerment feeling is indescribable.
I want to be a voice for all my other Multiple Sclerosis colleagues and friends that just like me struggle but don’t give up and keep on loving and being loved fiercely, every day!
Lidia started a relay race, as I was approached by other people.
Nina Bogerd offered to run to empower me and other MS patients in Ljubljana, in October 2018.
Andrea Ortenzi will run for us the New York marathon in November 2018.
...and so you know what?
I decided to train on the hand bike for a 20 km half marathon race in September 2019, hopefully in Rome
Do you feel like joining our relay race until September 2019 and empower me and other MS patients somewhere around the globe? We need runners. We need all kind of support.
Will you be running with and for us, sponsor us or help us in any other way?
Please contact: firstname.lastname@example.org
From disable to enable, this is the title of my journey. Physically and mentally.
We are all born in a certain reality of ourselves, of our body, our habits and routines and our personal definition of what life is all about. Being disabled is a terrifying feeling. Little by little essential parts of your existence is being taken away from you. I never realised how essential walking was for me and how many other activities were relying on it, until I started to gradually loose the capacity to walk. The loss was initially unbearable, and I mourned and mourned and mourned.
And then the crying stopped. I discovered that if you stay clinging into the initial concept or picture of yourself, and how your life is supposed to look like, you remain with a very small piece of what used to be your life. This idea was so tragic and felt so poor and not fitting with my soul. I was always a grateful person, counting her blessings and embracing life with both hands. There was no other choice, to despair or to adapt my coping mechanism. I decided quite quickly that I need to reinvent my lifestyle, my habits, rebuild my body and create a new perspective, a horizon, that was obviously always there but I never knew it.
The discoveries I made were wonderous. First, and most importantly, the people. I met the most inspiring, caring, loving, helpful, powerful people. I was supported by incredible people, professionals, friends and strangers. Thank you all for that. Secondly, the instruments, the horses that empowered me, the sailing ship that carried me, the folding electric chair that made my vacation nicer, the scoot mobile that freed me, the hand bike that will be soon in my possession and will allow me to go on new adventures. The wonders are all out there, you just need to open your eyes.
Soon I will return to school, for my third year in nutrition and dietetics, bringing along a new goal; to not only become a dietician but also a lifestyle coach for people with mobility challenges. I want to contribute my knowledge and personal experience and motivate others to keep on moving. The world will not be the same without us. Thank you for all your support during these months.
Together with some beautiful people I plan in September to bike with the hand bike a half marathon in Rome. It is not only my personal goal but also our common goal to demonstrate the power of community support and love to the people around us, and enable each other to move forward! I will keep you posted.
Yesterday was Martin Luther King, take time and watch his inspiring speech that reminds me what's important in life.
All the best,
Andrea Ortenzi, we never met in person but you already won my heart by dedicating yesterday YOUR NYC marathon to me!!! Thank you.
Here's the video I made for Andrea today at the gym. You all give me power to continue and workout with all my heart. The power of Love is incredible.
Do you wan't to join our relay run? For more information and exciting news check the new front page. Yours, Maya
Last Wednesday I finally met my neurologist and after 15 years without a relapse it is clear from the MRI that my brain is inflamed (=relapse). The good news that this is treatable.
Yesterday I completed 3 days of high dose of prednisone (anti-inflammatory) at the VUMC. Monday was especially exhausting as I had to give 18!!!!!!! Blood tubes for screening, my doctor considers 2 “heavy” immunotherapies, I will get the answers in 2 weeks.
I will spare you the details, but you can imagine, the roller coaster I am in, caring for the kids, going to the hospital, returning home doing what mothers do……but I handle it the best way I can.
Lidia is practicing for the Roma marathon, thinking of me and running for me, what a gift to have such a beautiful soul as your friend? the power of Love and Friendship is all around me, thank you all for thinking of me and sending me rays of light through the clouds.
The Roma marathon will take place next Sunday 23.09.2018, Lidia will carry the memory of her beloved mother, and me together close to her heart. I made a special symbol from me while I was in the hospital, you can see it in the photo.
Until now we managed to collect 3,500 euro (including the donations made directly to my bank account), AMAZING!!!! thank you all for your love and support…..still 1,500 to go to our target until next week Sunday…so feel free to share.
I found many nice things I could do with the money, like a week sailing in an old sailing boat, fully adapted and assisted, or water sport week, and they are all great but though subsidized still expensive, next week I am going back to the horses, can’t wait.
Much love to you all,