Month: June 2013

Nitty Gritty Dirty Grief

My new hat

Hschichie
A couple weeks ago I found myself at the United Mitochondrial Conference. 
It just so happened to be in Newport Beach, CA so I thought I needed a little beach time. 

Kinda….
I had reservations about attending this conference.
I would learn about new discoveries in Mito research for why?
I would sit in sessions about children with mito issues for what?
I did not need to be in this world as a parent and if I couldn’t be there as a parent, I didn’t know how I could be there.  
But, alas some of my favorite people where going. I hate to miss anything, ever. And I really felt the need to figure out who I was in this Mitochondrial World. 
And so…..to California. 
Our MFM president, Maria was brave enough to share a room with me. On the way to our room, we passed through the exhibition hall. I viewed testing companies, supplements, hospitals, everything I didn’t need and ironically, missed so much. 
And so I cried in the exhibition hall.  
And Maria hugged me. 
She’s a good roommate. 
And so the weekend progressed, with sessions, with acronyms I didn’t understand and genome sequencing….yeah….try me with genome sequencing.

Here is the Mayo Clinic, collecting blood for the Mito Biobank….for that genome sequencing 
 This is Elvis (seriously) who took my blood for the mayo clinic



And something amazing happened that weekend…..
I found my new hat (no, not Elvis’ hat, although I was tempted).  

It is not a hat of a mito parent, it is not a hat of a bereaved parent, nor a hat of an advocate….it’s a combination of it all…..a fedora-sombrero-beret with a touch of cowboy. 
What I found is that what we are doing makes a difference. 
I noticed this when I ran into the founder and CEO of Oroboros Instruments, Erich Gnaiger. He was wearing the Oroboros logo on a t-shirt.

 
*This is the Dragon logo. Dr. Erich Gnaiger is on the left. 


“hey!” I said, after some wine. “We bought your machine!”  
“Ja?”  he said because he is Austrian….and so I, of course answered him in my not so fluent German.
“Naturlich!” (I know, you’re impressed, aren’t you?)
Anyway, to make a long story shorter, he knew who we were. He knew about our Dr., Dr. VanHove….who had gone to Austria and trained with Dr. Erich Gnaiger and our fabulous machine, named Sam.
As the conference went on, word spread about the work we had done and the money we had raised for our Mito cause. I spoke extensively with Johnston Grier, who is putting the database for Mitochondrial Research (NAMDC) together…yeah, our donations are sponsoring Children’s Colorado participation.
I went from crying because I didn’t know where I fit to crying because we fit in so many places.
Friday night, I sat with our Mito families over the fire pit. We talked about losing our children, the fear of losing our children, and the absolute magic of our children.
Me and the President

And I thought…..here we are….I represent what these families fear most and they represent what I miss most. And there were no sad faces, just an understanding of what we are all going through. So I took off my fedora-sombrero-beret with a touch of cowboy because I didn’t have to wear a hat, I could be me  in search of what is next.

When we left, founder and CEO of Oroboros Instruments, Dr. Erich Gnaiger gave me a kiss on both cheeks….yeah, because we bonded…because he’s Austrian and they kiss on both cheeks and because I can speak in my broken German. 

Naturlich! 

And I left feeling full….still unsure of my role on this path but knowing that this path is good, important, worthy and hatless. 

Nitty Gritty Dirty Grief

Words Better than Mine

Hschichie

54 year old Joel Westbrook lives with adult onset Mitochondrial Disease. I am grateful for his words and his willingness to be a Lodgepole Pine.

Here is Joel’s post from our MFM site.

Thank you Joel.

We have had the privilege of visiting Yellow Stone National Park twice. We went once in 1986 and once in 1990. The great geysers, wildlife, and incomparable panoramas amazed us. We saw the buffalo, deer, and got a close-up of a moose cow and her calf.  We took rolls of film and kept even more memories. The moose shot was likely a foolish one, we passed them while driving down a park road, and I stopped and got out as she stood on the road behind us, the calf off the edge in the woods that lined both sides.
Our travels to Yellowstone are not the only wondrous visits we have been able to enjoy. There could be very deep debates of what is the “best” place in America, (over the earth?). Even the geysers are not unique to that area of rugged beauty. Wolves, buffalo, birds and other scarce pieces of creation are seeing the park as a refuge from what might otherwise be extinction. It could be said that Yellowstone is one of the most diverse pieces of real estate we can so easily get to.
We saw the park twice, once before the fire, once after. Like most Americans, we sat by television news reports of the destruction. There were comments of how it might never recover. Supposed authorities cried this would be a tragedy from which there would never be full recovery.
Our second visit confirmed what some were very surprised to find. The burned areas had found new life. Small plants that had been shielded from the sun, now flourished. Diversity of life exploded after the fire. Even the animal life continued to go on and even multiply. The new life in the park would not have been except by the fire’s passage. We learned that the lodgepole pine tree cones don’t open except in forest fires.
There are things in life that do not come easy. Some great things only follow what others would define as hurtful. Expressions of love, depth of concern, level of compassion, and other big qualities of our humanity, are rarely seen or known by other means. People with Mito, Alzheimer’s, Multiple Sclerosis, and other silent thieves are the “Petri dish” of growth for those who must care for those who our society calls ill. These “ill” people (of which I count myself) are not the debris of life. These lives challenge our sense of normal, in love, in giving, in going beyond ourselves.
These lives are the foundries of greater being. Too many lives fill their length without doing anything memorable. Lives that breathed, ate, slept but never reached out beyond simple day-to-day that is called life (by some). It was my answer to such a call that led me to be a living liver donor. I saw a life that was nearing a sad end, potentially leaving a wife and three kids behind. The doctors were able to remove a part of my liver and completely replace the liver of a man I will call friend. I did not get paid for this (such is illegal), and it was not I who could gain that drove me. I gained being able to help. Now I am receiving from others having become one in the “Mito family”.
I believe in God. I know that when we have given to others, He knows and remembers. Maybe we should get T-shirts that say, “I am a lodgepole pine!” for the depth of challenges that care-givers experience.
—————————————————
More about Joel: 
“I am a 54 year old Son, Husband, Father, former cop/corrections officer, hiker, bicyclist, rock climber, preacher, teacher, and Mito patient of 5 1/2 years. Miriam and I live in Trinidad, Colorado, a small town that suits our living. I would like us to be closer to doctors, medical providers and support group, but for now we are comfortable in our community.
I was born to stoic Iowa farmers. Miriam had a dad that was a career Air Force officer, so she had many places to call home. We have three kids who are out on their own. The older daughter (32) is married (and divorced so has heart pain in addition to fibromyalgea), who does computer tech. Our son who in the middle (28) is teaching English in Korea for now. Our youngest, a daughter (24) is getting married this October, who is in social work (also fighting fibromyalgea).

I am putting some of my available energy into a “boys club” with some of the teens and pre-teens in our church. I like working with my hands on cars, electronics, and house repair.”
Nitty Gritty Dirty Grief

Pretty Sure it was Better than a Powder Day

Hschichie

I am a bit of an adrenaline junkie. 

Not super over the top but I tend to rush into things that make me feel good, make my heart beat fast, make me feel like I am alive. 

But the biggest rush I get? 

Raising money for our charity, Miracles for Mito. 

I KNOW……how super cheesy is that? 

Super, duper cheese with a side of cheddar. But I love it. I love it more than a crystal, clear, knee deep powder day….(for those non-skiers, this is a deep snow day. I wasn’t going to post that but if you  didn’t know ski jargon, that comment might seem odd….but I digress, as usual)

Nothing makes me feel more alive, nothing makes me feel like in this crazy world, with our craptastic circumstances, that some good can come from something. 

Last week, we had our Miles for Mito Run/Walk at my company. I am blessed to work at a great place with great people. 120 people came out to raise money for our non-profit. 

We ran, walked, raised money, ate ice cream and enjoyed a lovely spring day. 

At the start line: 


GO! 

This is for charity but we have quite a lot of competitors out there 🙂


Ice Cream Truck! Sweet Cow Ice Cream for all! 

Lovely Day


Samantha and Jacob’s favorite nurse came out to run…..and beat all the ladies! Thanks Whitney! 

This was the best…..at the end of the ride, four women showed up with horses to ride on the path. The kiddos loved the horses and went over to give them a pat. Next thing I know, these lovely women are taking our kiddos around on the horses! 

Now how cool is that? 

Later, people asked if I was happy with how much we raised, how many people turned out, etc. I was happy, I was very happy. But more than that, my heart was full. I felt surrounded by love and support and ate it up like Sweet Cow ice cream. 

It was better than a powder day.