Thursday, January 26, 2006

Father & Sundance

I vividly remember the day my dad took me to see Star Wars in 1977. I was 5 years old. We went to Cina 4 on Robert Street in St.Paul, and sat about half way down in the center of the 'red theater'. I nearly exploded with excitement that day. It was an experience that ignited both my imagination and a fondness for film. Friday afternoon movies and dinner with Dad are a very memorable part of my life.

It was our love of film, my illness, and a sense of adventure that took my father and I to the Sundance Film Festival in Utah last weekend. I mention my illness because we almost certainly would never have gone if not for a very personal connection. We went to attend the premier of a documentary called So Much So Fast, about Stephen Heywood and his family's battle with ALS since 1999, and the ALS Therapy Development Foundation they started to find a cure.

We met Stephen's brother Jamie, who heads the foundation, shortly after my diagnosis in 2004. Not only do we share the Heywood's fight against ALS, we identify with their situation. Like myself, Stephen was diagnosed at a young age, when he was trying to start a family with the love of his life. He wants to stay alive for his little boy Alex, as I do for Eva. We can also relate to the Heywood's sense of humor, indispensable for coping day-to-day.

Dad and I flew into Salt Lake City on Friday. We stayed at a hotel downtown throughout the weekend since everything was booked in Park City, where the majority of the festival takes place. The Heywoods, ever the gracious hosts, were kind enough to invite us to dinner on Saturday night. Great conversation, great people.

We knew before leaving that tickets for all four screenings of the film were sold out, but Stephen's wife Wendy managed to score us seats for the initial showing on Sunday. The film is phenomenal, in both craft and story. Dad and I give it two energetic thumbs-up (me using my right hand of course). As the attendees we talked to noted, the film is profoundly moving, even for those unaffected by ALS.

For my father and I, it was intensely personal. Indeed, I felt as though I was watching my future: Stephen's progression to a wheelchair and ventilator; the growth of his child; the financial struggle; the adaptation of his family. The faces and places might be different, but all of those things lie ahead.

The Heywoods are role models for my family. We've learned a great deal from them already. So Much So Fast will help unveil their world to so many others. No doubt it will broaden public awareness of ALS, which currently seems limited to the book Tuesdays With Morrie. The film will give a voice to the younger people struggling with ALS as well. After the screening, I thanked the directors (Steven Ascher & Jeanne Jordan) for helping to tell "our" story.

Dad and I took in a few other films throughout the weekend, most of them quite forgettable. Sometimes independent films remain unknown for a reason. We didn't see many celebrities, although I nearly ran over festival founder Robert Redford on the way out of a panel discussion. Oh, and I'm pretty sure I saw Lea Thompson walking up Main Street.

We ate well. Tried a few different restaurants, most of which require a 'private membership' to serve alcohol. We sampled a few of the local brews. My personal favorite: Polygamy Porter, slogans for which include, "Why have just one?" and "Take one home for the wives!" Like I said, a sense of humor is crucial.

Most of the time Dad and I just hung out and talked. I've been so wrapped up in the race against my illness lately -- so much to do, so fast -- it was nice to find some private time with him. So thanks to the Heywoods for their openness and hospitality. And thank you, Dad, for another wonderful time at the movies.


Wendy Heywood said...

Hey Scott, I must have some claim to fame! I got the tickets for you, not Jamie!!!

L, Wendy : )

Scott said...

I can't believe I did that. I knew that you had gotten them through a friend, I even talked to her! I've made the update. Thanks again for the tix Wendy!

Anonymous said...

So I'm not sure how to begin this. Suffice to say I have never met you. Living in the South you don't meet too many people named "Stafne", so when I happened upon your website I was intrigued to read on. I now check your website every couple of weeks to see if there are any new updates and I'm not sure why.. Weird huh? I seem to think so. Then while I'm writing this I'm thinking.. "Why am I posting a comment". I guess just to let you know you are getting to people you probably didn't even know you were getting to. Anyway you'll be in my thoughts and prayers from one Stafne to another.

Take care
-Mark Stafne

Anonymous said...


Your recent pictures of Eva and your sweet memories of the times you shared with your Dad have made me want to share with you an insight I have gained. I have decided to do it anonymously, because of the strange nature of my story. It addresses a concern that you may have as a father, that being....that if a cure is not found in time, Eva may have difficulty remembering the times you have shared. Scott, forgive me for dredging up such a disturbing topic...for I know it is important to stay optimistic and keep hope alive...but I can imagine that for many ALS parents with young children, that is their worst fear....that their children will not remember them. I had an experience that taught me that for even the youngest of children, their souls will always know and recognize their parent. Please bear with me while I explain.

Many years ago, I underwent surgery for an ectopic pregnancy. Under anesthesia, I felt an incredibly sharp pain and thought to myself that it couldn't get worse, and then it did. Later, I felt myself traveling through a vast, dark space toward a bright light far away. Looking down, I realized that I didn't have a body, saying to myself, "I'm like an egg! How strange." I wasn't afraid and still had my own thoughts. Then I heard what I believed to be my baby crying out to me, "Save me!". It was traveling ahead of me toward the light and I became upset. I tried to call out to it that I couldn't save it...that I was sorry...remembering how the surgeon had told me it would be impossible to save the tube or the baby. I continued to follow it at what seemed to be great speed, then I remembered my husband and how he loved and needed me. I then somehow turned around and pushed against a very strong wind or force for some time to get back to my husband. Later when I awoke, my doctor told me I had fought on the "table" during the operation and that he felt he had almost lost me. The whole experience was life-changing in that it taught me for the first time to think of why life exists and how miraculous it is...but I also decided to dismiss it as a very vivid dream under anesthesia.

About six years later, while my husband was away on a trip, I had a that I rarely share with anyone outside my immediate family. It only happened once and will probably never happen again, but it was the most amazing experience of my that has helped me never to fear death. Please bear with me again.

I was lying in bed, tired and sleepy, but something told me I should get up and pray. My husband and I are Moslem, so I did my normal routine to wash before praying, got my prayer mat and performed the 4 rakahs in my bedroom (going up and down while reciting Arabic prayers). I had been wanting a child for so long, still barren after the ectopic, and at the end of my prayer I decided to recite a special prayer,using my beads, asking Allah to give me a child. I lay my beads down and before I rose to go to bed, I decided to keep my hands open on my lap as I was kneeling, and just be silent for a minute. I was conscious, aware of my bed to the right and a closet to the left with my bedroom door in front. My bedside table was near and had a lamp that was lit. I was sitting on my legs, fully awake. Suddenly, I felt some presence in the room and felt frightened that a thief may have entered somehow. I remember that I was even afraid to look at my door...but I did and it was still closed...I smiled at myself for being afraid, seeing that I was still alone in my room, so I looked back down at my open palms...But then I sensed the presence again and as I looked straight ahead, a dark oval started to appear, fuzzy around the edges. I could still see my bed and the closet but the oval was definitely there, taking up the center of my vision. Then a bright light appeared at the left of the oval and I began to see two silhouetted figures appear and they were walking toward me. One was an adult and the other a child and they appeared to have long robes. Because of the bright light shining behind them, I could not distinguish their features. They reached a certain point and stopped and I could see a dark, deep abyss separating us. They could not come any further, nor could I join them. I was in such awe of the sight, I began shaking and found it hard to look at them, looking back down at my hands. They were silent but somehow I knew that the child was the baby I had lost 6 years before and that God was allowing me to see him or her. I felt that this was happening also for the child's sake and that I was supposed to speak to the him. I started crying and telling him that he would have been loved and that we were sorry we could not save him. I described his father as a good, hardworking man...that he would have made a good father. After about one minute, I looked back up and saw my clearest image yet. The adult "guardian angel" put his hand on the child's back and gently and lovingly turned the child around and together they walked back toward the light. The oval quickly disappeared. I cried and tried to call them back but I couldn't. I got up and found some paper, then wrote down everything that had happened so that I could tell my husband. Then I fell asleep. Since that time, I shared my story with my parents and sisters and a few friends who were troubled with illness. I wanted them to know that my vision taught me that an afterlife truly exists and that it is one we should not fear.

Scott, the reason I am telling you my story is because I want you to try to believe that your connection with your daughter is strong and everlasting. If she loses you at a young age, there may be times in her life on earth that she may feel she can't remember...but I truly believe that her soul will remember every hug and kiss and someday she will reunite with you, fully aware of who her father is and how much he loved her. This is all in God's (or Allah's) plan somehow for a reason...a reason that may be so hard for you to understand right now as you suffer. I believe that Allah is like a loving father who allows his "children" the freedom to live in a natural way. If you followed Eva around constantly all her life, trying to protect her, that would not be good for her development. A good father has to let his child grow on her own and become strong. Standing on the sidelines, he still loves her greatly and is saddened when she is hurt or wronged...but he knows he must allow that independence. I believe Allah is the same...His love for you exists and he feels your pain and is also saddened by it. But we have to trust in the wisdom of His plan...just as a child trusts that his father will care for him. In the Koran it states, similar to that in the Bible, that Allah gives no man more pain than he can bear....and that love is the greatest gift He has given us. I have since adopted 3 beautiful children and I love them with all my heart and soul, knowing too that I have another waiting for me when I leave this life on Earth. You may never have a vision as I did, but you can see it in Eva's eyes every time she smiles at you. She WILL remember you.
May peace be upon you.

kent rockwell said...

Scott, I've read all your blogs but have been loathe to make a comment until now. Your writing is uplifting, candid and rather awe-inspiring for someone in your predicament. I will be offically diagnosed with sALS on July 11th, 2006--Doomsday. The symptoms have been mounting and present for about a 1.5 yrs.(if we put off the dx. does that mean our 2-5 yrs. starts that much later?). ALS is such an insidious disease one does not realize what is is happening until the monster is firmly entrenched (I understand you must loose 80% of a motor unit before weakness is detectable), but in my case I was found to have hyperreflexia (deep tendon) a year ago and then 7 months later developed the dreaded fasciculations. I was really hoping for BFS--Benign Fasciculation Syndrome, but too many other defecits existed or came to the fore later. I realize I'm not an official PALS until the final pronouncement by an "ALS specialist" neurologist( the first one I saw couldn't push my arms and legs down and pronounced, "I've seen sALS up-and-down the west coast and you're definitely ALS-free"...a University of Phoenix grad no doubt. I guess I'll be subjected to a battery of painful, obligatory tests to rule out preferable dxs. like brain/spinal cancer; however, I have since graduated to bulbar symptoms and really see no other possibility.
Anywho ...
I share another malady besides le maladie de Charcot. Could our OCD be a link to ALS? The constant stress on the immune system/CNS or the peculiar "wiring" of a brain/CNS succeptible to a condition like OCD may give rise to being more predisposed to a debilitating neurological disease. I don't know, just a lot of nervous conjecture on my part. I'm sure you've seen the study that have scientists reviewing a link between soccer players and sALS. As you know, you are fortunate to have such a wonderfuly supportive wife, family(cute kid), and friends to help lift you over the duldrums that are de rigeur when living with a terminal illness. Thank you so much for the work you do in raising awareness to this awfully perplexing and dispiriting disease that most others would as soon forget because of its overwhelmingly frightening, and insurmountable nature. I hope the emotional lability from bulbar hasn't tainted this blog too much. Bulbar...rhymes too easily with vulgar. Where do they find such ominous sounding terms? A few queries about any possible treatments that you are committed to at this time: Are you doing a regimen of vitamins, anti-oxidants, herbs like Steve Shakel has suggested? Did Jaimie Heywood or ALSTDF recommend any one treatment over another? Any new drug trials coming about soon? Have you tried methyl b12 sublingual?
I'm also trying to get a copy of So Much So Fast, but it doesn't seem to be available currently. Well, stay strong and post some more good stuff soon.
Kent Rockwell/36yrs./Riverside, CA