Uriel Grunfeld

Uriel Grunfeld was born in New York, brought up in Israel, but came back to New York to attended Film School. Uriel has worked as a production artist within the advertising industry, as a freelance writer within both the film and television industries, and most recently has returned to engage in his favorite occupation, that of documentary filmmaker.

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Half a lifetime ago (in 1980) I attended New York University film school and became especially interested in documentary movies. At the time I felt that “real life” offered drama and excitement that was lacking in the more popular expressions of Hollywood-inspired cinema. Eventually I understood that documentary is just another form of storytelling, neither more nor less “real” and exciting than any fiction or fantasy. I did find, however, that documentary is a great way to provide a platform for people whose voices are seldom heard and ideas which are usually ignored. Since then I’ve spent a fair amount of time and effort exploring ways in which “real life” experience can be effectively communicated so that it will reach as wide an audience as possible.

Years later (1996) I found myself submerged in a “real life” drama of my own when I was diagnosed with MS. I experienced it all – the shock, pain, anger, guilt, shame, denial, depression – you name it. Nine years have passed and I am still reeling from the impact of being diagnosed with an incurable disease and the effects of the chronic disability that comes with it. At the same time, I am struggling to make sense of it all.

There is the question of vicious cycles. Cycles of cause and effect. For example: MS causes stress, but what causes MS? No one knows. Yet stress is known to exacerbate the symptoms of MS. What to do, what to do? If I reduce stress will my health improve? Can I successfully reduce stress while I’m suffering from MS? How much actual control and how much responsibility do I have for managing the course of my disease?

Or take another familiar dilemma that haunts so many of us. Do I reveal that I have MS? Especially if, as in my case, the disabilities are invisible. Better not let anyone know, because that might change their attitude toward me. But if I don’t let people know, they might expect things of me that I cannot perform.

While grappling with these and other MS-related issues, I found that the most productive response was to embrace a holistic approach which encompasses the physical, emotional, rational and spiritual dimensions of the human experience. This approach is hopeful because it allows us to conceive of healing even when there is no available cure for MS. Healing in this context means that we pay close attention and integrate the various aspects of our experience. As we become “whole” we become healed... which, of course, is easier said than done.

In my case the most debilitating symptoms are optic neuritis, fatigue and a difficulty to sustain focus and concentration on a given task for any length of time exceeding a couple of hours (and sometimes a great deal less than that). As a consequence I have been unable to hold on to any steady job and have only been able to generate income on an intermittent basis and in an erratic fashion. As a family man I live with my wife and three young children and have two somewhat older children from another marriage -- this has severely impacted my self confidence. I have to work very hard at maintaining a “positive attitude” as they call it out here in sunny California. Sometimes I succeed and I savor those moments of triumph, but then, alas, the demons rise up again and the struggle continues. It is a fight, no question about it, but I take encouragement from wherever and whomever I can, gather my strength and face the everyday drama of disability.

The journey toward healing is highly individual. In my case, it led me back to documentary filmmaking. Last year I interviewed a number of people who had been diagnosed with MS or with “probable MS” and produced a documentary video entitled “Voices of MS” in which they describe living and coping with this dreaded disease and its effects. More recently I launched a website (www.voicesofms.com) which I hope will develop into a full-fledged, active online forum, where members of the MS community will be able to gather and exchange information, state opinions, express grievances, swap anecdotes, and offer words of wisdom, comfort and solidarity.

I produced the documentary and created the website in part because it simply felt good to give voice to the concerns of the MS community to which I belong. But, beyond the basic satisfaction of speaking out and expressing ourselves, lies a deeper, more ambitious agenda. For it is my belief that the tricky part about getting healed is connected to the fact that we all tend to avoid certain uncomfortable truths about our own lives. Never mind what we won’t tell others, but what do we hide from ourselves? And without exploring all aspects of our inner selves we cannot fully integrate the different parts that make up our being and cannot truly become whole or healed. In other words: we cannot heal if we don’t reveal. It is the goal and mission of the “Voices of MS” project to instigate more open discussion and public dialogue. My hope is that we will all be encouraged by hearing many other stories to move past half-baked platitudes and clichés, to gently probe and re-examine the more closely guarded aspects of our own individual stories.

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This review was recently posted on Uriel’s site –

“This movie was put together very well. What better than a Multiple Sclerosis movie made by a MS Patient. Every important topic is covered. Anything else that may be out there would not compare to this solely because it's the soul of MS brought to the surface. It helps people understand what we are going through everyday. It also helps current MS Patients take a deep breath of relief to know they are not alone.

I've already watched "Voices of MS" three times since I received it in the mail. Each time with another member of my family and also with my local MS Support Group. It was a smash hit. Other members want to get their hands on it so they can send it to family members that don't live nearby and first hand exposure to MS so that they too can get a better understanding what their family member is going through.

I'm definitely glad I found out about this movie.

Respectfully,

Ian”

If you would like to contact Uriel, you can do so through the website at VoicesofMS.com.