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flowers in the valley of darkness

1/6/2015

13 Comments

 
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For those of you who haven't read my last blog entry, I recently went public about an undiagnosed illness that I've been battling from for the last 3 years.  Finally admitting that my pain and disability levels were greater than I could continue to hide, and that I needed help both emotionally and financially was one of the hardest things I've ever had to do.  Pressing send on that update felt like the admission of failure, and the dissolution of my identity as a whole.  It felt like I had finally paddled to the edge of a flat earth and was facing the drop into monsters and oblivion.

There's a funny thing about fear though. I'll avoid the obvious Jack Kennedy reference, but it really is true that majority of our pain and anxiety has to do with the avoidance of any path, rather than the actual discomfort of that path. When I finally tipped past that proverbial horizon line, I did not tumble into darkness, I discovered the world was round.

As the donations poured in, I realized just how lucky I am to have the friends that I do, the 25,000 dollars I raised is absolutely essential to being able to afford much of the testing and treatment that I need right now, and those of you who know me well, know that I am already thinking past myself and into how I can use this experience to help others who are suffering. Just as valuable as the donations, however, were the dozens of letters I received from other people suffering similar symptoms who had found answers.  It gave me a wide database of possible disorders for my doctors to (albeit reluctantly) investigate.  More than information though, these letter gave me strength, hope, and perspective and ultimately, allowed me to surrender to my journey and find a place of peace and gratitude. 

Where we are right now is that tests are still ongoing.  The process is slow and doctors can be difficult, but I think they've gotten to know me well enough to know that the best way to deal with me is to work with me rather than against me.  I am not going anywhere until we have tested for every known condition that matches my symptom profile, which you can imagine makes me an unpopular patient.  While one hopes to find a smoking gun complete with pill to neutralize it, I have also come to accept that many disorders that match my symptoms are still poorly understood disease processes, (specifically a whole host of neuro-immune disorders) with limited conventional treatments options, and to that effect I am also aggressively pursuing alternative therapies as well.

Healing is about more than just repairing a broken physiology though.  Healing is the process by which we transform malcontent into content, and pain into love.  Paradoxically this process can actually be hindered by our blessings, and while the process of being paired down to your core is painful, I've discovered that even stripped of the larger share of my possessions, my finances, my work, and my athletic abilities, I can still find grace and meaning.  Pain is a reality for me, I can't change that right now, but I can always find something positive and focus on that.

My limitations right now are that I can be moderately active about 4 hours a day, and I can run on the beach for 15 minutes a day.  Activity beyond that makes me dramatically sicker, so I lay down and read and write the rest of the time.  For those of you who have known me as the person who used to wake up at 5 am and surf until sunrise, and then work until long after dinner for months on end, this has been exactly the kind of wrenching transformation you'd expect it to be. I'm past that though, and I'm committed to focusing on what I can do, and most of all trusting my journey.  There are so many people out there that find joy in much worse circumstances, and feeling sorry for myself would be an insult the to blessings I still have intact.

Where this brings us to is the changes in my material world.  First off I sold my half of the R-evolutions Gardens farm.  I needed the money to survive, and can no longer meet my responsibilities to the property.  It is in good hands with Ginger and her new husband Brigham.  The Off Grid Airstream that I worked so hard on last summer has proven to be exactly the beautiful, simple place I need to rest and heal.  I will continue to slowly work on it throughout the year. Cape Falcon Kayak will be closed this year. That's a tough one. I am energized and inspired by teaching but there is simply no way I can physically do my job with my current limitations. I will still be able to build commissions, which makes this a great opportunity for anyone who ever wanted to buy a kayak from me but didn't want to wait the usual 6 months or more it used to take to get one out the door. I also plan to use the time to work on development of a couple other boat and video projects that have been impossible to get to with my normal schedule.

I feel like it is important to view this as a year of celebration rather than a year of loss, a year of gratitude, healing, and breathing into the promise of future possibilities. To that effect, I thought it would be awesome to have a giant party and gear swap here at the Red Barn, the third weekend in July, so mark your calender.  As many of you know I live in one of the most beautiful places in America, and the shop has abundant camping space.  Together we've built over 800 kayaks in the last 12 years and I would love to see just how many we can get out on the water for a group paddle.  Both former students and non-students are invited.

I think that's about it for now.  Enjoy the blessings of the new year in whatever form they come to you.  I'm going to be here working on healing, catching up on my reading, and spending some quality time with my cat.  

Be well.
-Brian

13 Comments
Sarah McGilly
1/7/2015 12:20:04 am

Its good to hear you have support.
Something you planted in your past that is bringing much needed help to you.
I know a few of my friends who have worked with you and have nothing but good things to say about you.
I hope to comission a boat from you this year.
After my partner is done with her cancer and bills are under control.
Your how to pack a skin boat is very helpfull in getting me ready for this summer.
My 2 skin boats are aircraft style since that is my trade and comfortable with the methods.
Kind regards.
Sarah

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David Corr
1/7/2015 02:28:49 am

Awesome to hear from you and how you made your goal of $25,000. It just reflects the impact you have had on peoples lives. That is an incredible idea of having a gathering in July and I definitely plan to attend. I assume we can pitch a tent on your property? A group paddle to show our support and love is going to be one hell of an event and hopefully, you will have great news to report by then.
Blessings to you Brother and I will see you in July.
David

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Leila Snow
1/7/2015 03:10:46 am

My boat has always had a lot of emotional significance for me. My brother and I saw you speak at the Manzanita Community Hall one Christmas, and knew we were looking at a work of art. I built my boat the next year in honor of my brother after he died in a small plane crash. My sweetheart and I got together after paddling together and admiring each others hand built boats. Paddling continues to be an adventure and a joy. Brian, you've made so much possible for so many of us, by sharing your passion and coaxing us along with your compassionate teaching. You may not be teaching boat building in 2015, but you are teaching nonetheless, and quite ably. See you in July.

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Shelly Reinstein
1/8/2015 04:00:19 pm

Lots of love to you, Brian. You continue to amaze me. You have a rosy glow in this photo I haven't seen for a while...may your health and happiness grow and re-grow.

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Fred Bahnson, MD
1/9/2015 08:10:11 am

Brian, I am delighted to hear your update about the outpouring of support. You have many people who appreciate you.
I would continue to recommend seeking an evaluation at the Mayo Clinic, because of the expertise and multidisciplined approach Mayo offers. You are in my prayers for healing. I sure do love my F1!

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Michael Burwell
1/9/2015 10:39:51 am

Thank you for the update, with that kind of support and a good cat you're two steps ahead

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Jack Pope
1/9/2015 11:44:59 pm

Hi Brian: I only came across your website in the last couple of months but since then I have become a big fan. I was hoping to attend one of your classes this year and build an F1 so from a purely selfish standpoint I am disappointed you won't be doing that this year. Having said that Its good you are taking the time to try to get to the bottom of the health issues. In my experience one of the most difficult things is to let go of the world as you want it to be and embrace and confront the world as it is. It sounds as though you have done that. Perhaps I will commision an F1 but to me there is so much enjoyment in the building process that its hard for me to buy things ready made. I may try to build a boat from your F1 info but it would be a facsimile, not the real thing.

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Beth
1/24/2015 12:58:50 pm

Brian,

Hi , Just today I watched your video about tiny house on an Oregon farm and truly inspired by your knowledge , skill and ability to build things with your hand. I grew up with a dad who was so smart in every avenue knowledge about building, native medicine , herbs and he was a engineer by profession. And then I got married to a guy who can't put a nail in the wall (happily married for almost 20 yrs and best friends for 25 yrs) ; ).

You are going to and will find the root cause of your issues soon . This is coming from a mom who spend hrs researching how to help my little guy who regressed into the ASD world after his 18th month vaccination. Last year has been very challenging with so many new issues cropping but I was blessed to find friends/moms who are like 100 specialists in 1 body kind of knowledge compared to main stream dr.

I saw the list of test /root cause you are trying to find out. I am suspecting lyme since you spend so much time outdoors also mito issue. Any change bacterial/viral infection can bring out mito disorders . That's exactly happened to my son. So I am sure you will find the root cause. Just want to throw in some names of Drs (specialist in the country who gets ASD and its comorbid conditions well thru their research). Dr. Richard Frye, MD PhD, Director of Autism Research and Associate Professor of Pediatrics at Arkansas Children's Hospital has done extensive research on mito/metabolic disorders on ASD kids and you can read all his research papers at nih.gov.

I would like to recommend testing basic mineral/vitamin deficiency test especially for Magnesium along with thyroid. Most labs for mag and thyroid comes as normal so need to do the antibody testing for thyroid. Recommended lab work for thyroid http://www.stopthethyroidmadness.com/recommended-labwork/

Also do a simple genetic testing from 23andme which costs only 90.00 dollars . 23andme no longer gives medical predictions, but you can key in the raw data and get good info on mutation. For eg most ASD kids have methylation issues and gene mutation in MTFHR is key to find out so proper methylation support can in order . My son was that 1 in 29 kids whose body can't get rid of the toxins in the vaccine.

But thru my own research and with help of big community of ASD moms, I connected all the dots , the observation I noted carefully all these years with a medical issue. So I am really confident that you will find an answer to your health issue.

If you need a room to crash when to come to Portland for dr visits , our house is open. We live in a concrete jungle in a cookie cutter house with awful aesthetics in a planned community but you will be have lot of loving people to talk to . Ok two people to talk since my son is nonverbal kid but he can give you the best hugs in the world.

I am praying and hoping that 2015 will be a year of hope and wellness for you.

-From a women in 40's who became an instant admirer after seeing your video and wishing I had a brother like you : ).

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john siler
3/6/2015 07:10:24 am

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Ben
4/1/2015 11:27:00 pm

I suggest as a search has not brought up any references. Ask your doc to look into transverse myelitis (and similar) if not done already.
being around water (especially fresh water) can be a risk of amoebas and I have a friend that suffered from it.
http://en.wikipedia.org/wiki/Transverse_myelitis

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Curt Brown
4/9/2015 01:49:36 pm

Life to live.
Rest. Get better Dammit.
Don't screw this up.

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Ed
4/28/2015 08:12:06 am

Where are you brother? Where are you at?

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Rachael link
5/6/2015 08:48:30 pm

Hi Brian


Sorry to hear your tale. Keep on with the floating it will make a difference. I had a tank centre in London back in 1992/3, I spent a lot of time both in it and researching. You're a smart guy so why not build your own. Believe me there's not much to them, pretty lo tech really but do need a quiet location though! I had no end of trouble with the London trains rumbling 300 feet below. 1992 was way too early to be setting up a float tank centre in London, it was just seen as more New Age West Coast American shizzel. But, I was breaking even cost wise after just 4 months, but the recession came and I lost the business and my house, and my parttime job.Then my Dad died! I figured, having lost everything it was the perfect time to go to art school and paint. I had had a great art teacher from my secondary school, Maggie, she'd been on at me to go when I was a kid after leaving school , but others told me to be sensible and get an education that would give me a job. I did that instead. A mistake. Eventually, 20 years later I found myself in the very same art school Maggie had been to. It was a good choice.

I never made a living from art, because I never really wanted to, but I have something more precious that it gives to me. I think you're beginning to figure out for yourself what is precious to you Brian, and that's good. Lovely cat you have there! Don't they just know when we need looking after?

Blessings to you Brian, keep having faith. You're right when you say there is more to this life than we realise.




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    Brian Schulz

    An avid paddler, builder, and teacher, I'm passionate about sharing the strength, lightweight, and beauty of skin-on-frame boat building.

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