Cristina Abbiati Tuero

Eight years ago I got the diagnosis, but long before that I had undiagnosed symptoms and episodes. When I was around age 16 there were symptoms in my heels; between ages 25 and 30 I had problems and pain in my legs which is connected with lumbago. In 1989, I had optic neuritis which went into remission when treated with corticosteroids. In 1994, I had problems with my left arm: I couldn’t raise it. The problem also involved my spine and peripheral nerves and 1996 began with serious difficulty in moving my left leg and walking. All of this came with increasingly noticeable tiredness and fatigue. I felt as if I had lost my health and happiness, and wherever they were, I couldn’t find them. I pursued many medical consultations and had studies done and at the end of that year received the definite diagnosis. Fortunately, now there is technology such as magnetic resonance imaging which permits earlier diagnosis.

Early on I took the counsel of my neurologist, who advised me not to seek information nor contact organizations or other people with multiple sclerosis. Apparently that was a time I needed to process in some way, albeit insufficient, that this was happening to me. That’s when I said “I have multiple sclerosis; I’m taking charge,” and I began to seek ways to improve my quality of life. And that is how I arrived at EMA (Multiple Sclerosis Argentina), where I could learn about my diagnosis, be vulnerable, assume my limits, reflect on the uncertainty, and be conscious of all I could or couldn’t do. Also with physical therapy my mobility improved and I incorporated many tools. I am careful to follow my neurologist’s instructions, and I added other treatments like complementary medicine. I’m beginning to go to yoga and gymnastics classes and, through EMA, I’ve joined a group for support and self help. Being part of this group has provided me with a fabulous learning experience. It's a constant give and take. Through these activities, my well being has improved, and I’ve been shown a path to my inner self, and that makes me feel happy and fortunate.

My family and social life

I’ve been married for more than 40 years, have two children, ages 39 and 36, and two grandchildren, ages 10 and 6, who are the sunshine of my life. My growth, the understanding of my disease, accepting limits, having many plans for the future and writing and publishing a book are all things I didn’t accomplish by myself; the credit isn’t all mine. I draw support from a network of family, friends, and coworkers. This network is powerful and it sustains and strengthens me.

My activities in EMA

- 1998: I collaborated in the creation and operation of EMA’s first Support Group for the Newly Diagnosed, contributing by incorporating new members and providing companionship for those already participating. Today there are three groups of newly diagnosed with a total membership of around 50 persons. I counsel patients with MS from where I work.
- 1999: I attended the MSIF conference in Basle, Switzerland. The experience was valuable in that not only did I get to share about our common problems with people all over the world, I also learned about other institutions helping those with MS and was able to offer these experiences to EMA.
- 2000: Since this date, I have been a member of the People with MS International Committee, and I’ve written articles and testimonies for EMA’s magazine as well as participated in the development of the web page and monthly newsletter. Also, I’ve been interviewed several times in national newspapers to educate about the disease and to tell my personal experience with it.
- 2000: I participated in organizing, within the framework of the First LACTRIMS Congress (Latin American Committee for Treatment and Research in MS), EMA’s workshops for patients and families
- 2002: I participated in forming a group of volunteers for an education campaign that EMA held together with Argentina’s Publicity Counsel and an advertising company.
- 2002-2004: Representative of the People with MS Committee in EMA’s Board of Directors.

Book: Is the race only for the fast?

During 2005, I had a dream brought to fruition. My book was published and in May I presented it in a cultural center where I was able to share this moment with other people with MS, with family, friends, colleagues and neighbors. I came up with a title in the form of a question since, even if running is limited for many of us, the question invites all to reflect. Which race are we talking about? What is it that makes one toil, worry about and pursue?

The diagnosis marks a before and an after in a life; now, nothing will ever be the same. However we shouldn’t have to pass through these kinds of situations to find meaning in life; we should realize this before. And for that reason the question; it stimulates the search for answers and everyone will come up with their own answers in their own time.
The book is a testimony, from my own experiences and those of my family as well as of five other people with multiple sclerosis whom I interviewed about their way of coping.

Proposal from the place of the user

In a seminar about medical care and economic policies I was able to speak from the view of the people, misnamed “patients,” since I believe in active patients. Active patients are those that question, consult and participate in spreading the knowledge about the right for assistance. They transmit to others their experience and care about accessibility and integration. Also, I requested that the information we receive from the doctor be sufficient and complete, to be able to analyze the cost-benefit relation and decide what we are willing to assume (cost: symptoms, modifications or complications). Also I demanded that rehabilitation, in our case neurological rehabilitation, be an integral part of treatment on the same level as medication because of rehabilitation’s value to daily life and to the quality of life.

Finally…

After my experiences, I enthusiastically make the effort to communicate everything helpful concerning the problems with MS. Although people with MS live in a situation of social vulnerability, I try to make them aware of their rights to an adequate quality of life. This way, they can open and expand their perspectives and opportunities, receive orientation and adequate advice to their needs.

With the disease I’ve learned to have perspective, to feel, to live a different way, not only from an intellectual standpoint, but also from feelings and emotions. We live as if there are no limitations, nor illness nor death. When we learn that these form part of life itself is when we find the meaning of life. Anything can happen because life happens.

The disease doesn’t redeem us; it doesn’t make us better than others because we have it. In reality one has to go through the whole work, an internal process involving psychology, emotions and spirit.

I could say I have a great life, but I had to pay a very high price to become aware of it. My desire is to communicate that it shouldn’t require such a high price, that you have to value things according to their worth and to live each moment with all the passion that is possible, because it’s unique and unrepeatable.


Translated by Carrie Aadland