"Fred Siwak, PALS: 1952 - 2010" PALS's Profile

Boston Obituary

Fred, we will miss you, your vision and your positive outlook. We will never again see a butterfly without smiling at your joy and determination. Thank you for sharing your life with us in this little corner of the internet for as long as you could. Fly free, friend .... fly free ....

My art at the South Pole

MY PROJECT:
My idea of getting my art photographed in every country in the world stemmed from the increased isolation my progressive disease brought on. After the reality that I would never work again and would forever be confined to a wheelchair with a steady loss of muscle control, I decided to seize the strength I still had to create art, initially using adaptations to draw with pastels and carve linoleum prints (I did this by strapping a chisel to my hand –my gripping ability gone – and using the movement of my shoulder and torso to manipulate the chisel.) Soon this became impossible and I then turned to drawing on the computer by moving the mouse wedged between my hands and using lateral pressure in order to control the mouse. By this method I created over 60 images.

When I heard a friend of mine was returning to India, the thought occurred to me that it would be neat if he would take a piece of my artwork there and bring back a photo of it. I liked the idea of getting my art “out there” making a statement, a connection, knowing my disease will surely shorten my life. After more pictures came in, from my brother’s business trips, traveling friends, I decided on trying to get every country (and interesting, isolated locales) as a challenge and as a vehicle to raise awareness of my rare disease.
I think it would be a great accomplishment, under my circumstances, to get a photo of my art in every country in the world. Conceptualizing the world from a map presents images of vast oceans, rugged mountains, immense desserts, isolated islands, jungle heat and artic cold, people different from me, harbored in my wheelchair in a small coastal New England town, in ways I can only imagine. But then the responses start coming back, Iran “I like the whole concept and I would like to be a part of this art project”, Brazil “other people around the world will be your legs, your arms, and carry part of your art with them”, Brunei “I'd consider it a great privilege to help you out in this small way”, and then the images. Wow, there’s my art in Bangkok, at the Pyramids in Giza, at the very pole that marks the bottom of the Earth!

I work nearly everyday, typing with a mouth stick because my arms and hands are too weak to lift or use, and hooked to a breathing machine because my weakening diaphragm has left me with only 20% of my normal breathing strength, scouring the world wide web for likely participants in my project from all corners of the globe.

PALS = Person with ALS

MY DISEASE:

ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease in the United States and elsewhere in the world as MND motor neuron disease, is characterized by the rapid, progressive death of motor neurons, nerve cells that feed all the voluntary muscles in the body, including muscles used for breathing. As these motor neurons die, the muscles, lacking nourishment, atrophy, resulting in paralysis of all voluntary muscle. In about 90 percent of cases of ALS, there is no family history. Ninety percent of ALS patients die within three to five years from the date they are diagnosed. The cause of ALS is unknown. There is no cure. There is no effective treatment. ALS occurs throughout the world at about the same rate of roughly one in 100,000.

Me & VT: Connectivity

That's me at the "World Art for ALS Awareness" command center. I type my messages with the mouth stick (after about every 4 or 5 words I place it on the table to rest my neck, before continuing). That hose on my head is not my internet connection! It's a breathing device (the breathing machine and battery that powers it are attached to the back of the wheelchair - which I've been in for almost six years). The machine pumps air into my lungs with each breath. ALS destroys all voluntary muscles in the body including the muscles used in breathing.

My aide puts the pillow behind me to bring me closer to the keyboard and places my hands on the table, on either side of the mouse. I use my arms and shoulders to move the mouse wedged between my hands, which are useless.

The white hose on my side is a puff-activated emergency system. It triggers a call to a response center if I get into trouble.

I work here almost every day, a minimum of 4-5 hours, on my project. The great reward, played out numerous times, is to hear back from a VT support who kindly agrees to help me with my project. It is a great thrill I look forward to every day when I log in. Before this disease takes my last bit of strength I want to say "I have my art photographed in EVERY country in the world!"

An immense THANK YOU to all those who have answered my call !!!