When I last sent you an update like this, I had mostly bounced back from a rare nervous system disorder that made it so I was unable to walk or stand for much of the year. Shortly after that, one of the main actors in the film needed serious medical treatment, and it took several months for them to recover. The important thing is they are alright now. Unfortunately, I’m not.
We'll get to that. There's a video at the end of this update that explains everything, but first let's get you all caught up on what has happened with the film.
I ended up needing to go back to the US for a while, but was able to sort out a new Latvian visa with the help of one of our backers (thanks Karlis!). When I got back to Latvia we started filming again, immediately.
I was very happy with the scenes we shot and our production team was working together better than ever. We knocked out several big scenes that took place during the winter, but it was during pre-production for the last of the filming, planned for the spring/summer, that we got derailed again. One of the main characters in the film had gotten pregnant.
My first thought was to work that into her character and the film, but she absolutely did not want to do that. After much discussion we both agreed that it just was not going to work out. The part had too many physical demands that were now no longer safe for her, and there would be no way to hide her pregnancy. We needed to find someone new, and we needed to re-shoot a number of scenes.
So, we began a massive (for Latvia) open casting call using, primarily, Facebook.
The response was overwhelming. Over 3,000 people wrote us wanting to audition for the film. We had so many auditions we could make a film with just the screen test footage we shot.
After a few months we cast the part, and started pre-production. Things were looking great, but the unimaginable happened yet again.
I started severely losing my vision in my left eye. The pain was intense and when I closed my eyes I saw a flashing light show instead of the expected darkness. Not long after that I started getting numbness in my legs. Some of you may know where this is going…
(…and if you were following along on Twitter, none of this is new.)
That’s my brain. See those white lines? Yeah, those aren’t supposed to be there. There are also white spots like this on my spine and optic nerve. Long story short, I have multiple sclerosis. Well, not only. I also tested positive for Lupus, and a couple other annoying autoimmune problems.
So, plans changed. Instead of filming, I spent the whole summer in and out of the hospital for treatment, and medical tests (spinal taps, ugh.). I was finally officially diagnosed in September, and then we got back to filming a month or so later.
And then in December I had another MS attack on my eyes. Fortunately, not as bad as the first, but it was enough for me to be out for the season. I went home for the holidays all drugged up on steroids and anti-inflammatory eye drops.
Come January, I’m back in Riga seeing clearly, and feeling most of my legs. Determined to finish Hybrid Vigor, we immediately start preparing for more filming. Things are going well, but then in February, of this year, I had ANOTHER attack. This time on my legs and I had a really hard time walking. The nerve pain down my left leg was awful. Every step felt like my leg was burning. I ended up back in the hospital for more steroids.
So, now it’s March and we have a dilemma. The beginning of the film takes place on Lake Baikal, but I never really thought about going there to film. It’s deep in Russia, and no American film has shot there before. It seemed too crazy to consider, but the problem was there was no snow in Latvia or any neighboring country, except Russia. If there was any hope of finishing Hybrid Vigor in 2016, we needed snow and ice. Do we go to Lake Baikal or do we wait a year?
Well, of course we go!
Yes, that's me in Siberia filming from a cliff overlooking Lake Baikal only weeks after being in the hospital, but let's rewind a little. The story gets crazier...
Physically, I was feeling pretty good because of the steroid infusion a few weeks earlier, and I figured what’s the worst that can happen? I’ve never been one to really back down from an adventure like this and finishing the film is a must! So, I decided we are going. The only problem is I don't know anyone in Siberia... but I must know someone that does.
Enter Nikolai, from Moscow. Twitter friend, Hybrid Vigor backer, filmmaker, and all around amazing guy. I reached out to him to see if he could recommend anyone local in Siberia (Irkutsk, to be exact) that could help us out. Not only did he connect us with an great local guide/photographer, Alexander, but he also offered to hook us up with all the gear we needed to make the trip possible! Things were getting very exciting, and then we had some really bad news...
I had been in touch with the daughter of the actor who we needed for these scenes on Lake Baikal. She has always been my contact with him because he does not speak English. Right before I was about to book the tickets to Irkutsk, less than 48 hours before we needed to leave, I contacted her to confirm everything, and got the bad news. Her father can't go. He had a heart attack.
The good news is he was recovering well. The bad news is his doctor absolutely forbid him from traveling, and said he may never be able to make a trip like this. So, now we have 2 options, cancel the trip and postpone the film indefinitely, or press on.
We talked it over and decided we are going to Lake Baikal. Once we arrived in Irkutsk, we had 8 days to cast 2 parts, find locations, shoot the first 15 to 20 minutes of the film, and get back in one piece.
Somehow we did it, and it was one of the most amazing experiences of my life.
We have about 20 hours of behind the scenes video from this trip, so you will be hearing a lot more about our adventure in Siberia in the future.
Once we got back to Latvia, and recovered from the trip, I started editing what we shot in Siberia, and planning what we will film next. The following months were extremely productive.
My goal was to finish shooting Hybrid Vigor this summer. Believe me, I tried. Unfortunately, my body had other plans.
Last week I was back in the hospital with one of the worst attacks I've had. My left leg was a weak, wobbly mess and I could barely walk. When the doctor tested my leg strength in the hospital, it was so bad that she said, "I don't even know how you are walking." She gave me a double dose of steroids, which has, temporarily, helped my leg strength, but I'm still falling apart, physically.
Fortunately, I ended up with these problems at the best possible time in all of human history because there's a way to fix me. I have an opportunity to get a breakthrough stem cell treatment that will "reboot" my immune system and fix the autoimmune diseases I've been dealing with (multiple sclerosis, lupus, etc).
I personally know dozens of people with MS that have been cured with this treatment. You must get it early before too much permanent damage has set in though. I'm considered an ideal candidate.
Here's the video I mentioned at the beginning of this update. Please take a minute to watch, it explains everything:
There's a better than 90% chance this treatment will fix everything that's wrong with me, and I can get my life back. It's the best and only option I have to not end up permanently disabled. I know how this goes. My dad has the same type of disease, and in 6 months he went from having fewer symptoms than I have now to being totally paralyzed from the chest down. He’s also legally blind and one of his vocal cords are paralyzed.
Doctors consider you to have aggressive MS if you have 1 attack a year. I've had 5 attacks in 14 months. The stakes are very real.
Unfortunately, insurance does not cover this and the treatment will cost around $75,000 in all. I'm selling everything I can of value to help get the funds together for this, but will still come up well short of what is needed.
My family has helped setup a fundraising campaign with the nonprofit HelpHOPELive to help raise the rest of the money. We have already raised over $20,000. HelpHOPELive is a real charity, so they verify the treatment is necessary before approving a campaign, and they pay the medical bills directly. Also, all donations, regardless of the amount, are 100% tax deductible, and they offer employer matching.
My treatment date is September 6th, which means we have only 20 days to raise the rest of the money. It can't be delayed. If I can't get the money together in time, it will be at least 18 months before I have another opportunity to do this, and I don't have that kind of time. Without this treatment, my doctors say I'm only a few months away from permanent disability.
I feel awkward even asking for help with this because Hybrid Vigor is still not done, but I have pushed my body as far as I can. The film will be finished, believe that. I just need need to fix me before it's too late.
Even if you can't make a donation, just spreading the word by sharing the video, with a personal note, is a huge help. You are all also welcome to friend/follow me on Facebook for updates and, if you have any questions, don't hesitate to email me.
- Here's my personal Facebook page.
- Please share this video to help spread the word on Facebook.
- The video is also on YouTube.
- Oh, and here's the Hybrid Vigor Facebook page.
There will be some kind of companion documentary about the making of the film. I plan to shoot as much video as I can of the treatment and my recovery. We already have tons of behind the scenes video and pictures. Everyone that donates to this campaign (any amount) will be thanked in the credits. I will be thanking you for the rest of my life.
Here's the page: https://helphopelive.org/campaign/10598
When the dust settles, this is all going to be a great a story.
Thank you for believing in me.