I’m fighting a wicked battle of blogger’s block, so forgive me for slacking off recently. Can I claim procrastination as an MS symptom?! Life has been full to the brim; full of awesome things…and a few not so awesome things. The awesomest of all, Meg left her job at mywedding.com! It’s been a long time coming, but she can now focus on her photography full time. Since then this house has been so full of laughter and creativity. Just the way we like it.
On the other end of the awesome scale, there was a septic backup *and* my first root canal on the same day. Yeah, real fun. Those weren’t so bad as when the gravity of my first Tysabri infusion finally sank in. The infusion itself wasn’t that bad, but the allergic reaction I had made for a pretty stressful experience. Mixing my allergic reaction with the risk of getting an incurable brain infection made me reconsider whether this is something I truly want to do. And for now at least, it’s not. I have decided not to continue treatment. After digging into the research, I’m not satisfied with the numbers; so I’m not accepting the risk for big pharma. This means that for the first time since my diagnosis I will be off all disease modifying therapies for MS. Not to worry though, because I live a healthier life than ever before. Plus, I have all I need: the support of my best friend.
When I step back and look at the big picture, I love where I’m at. So many things that once started out shitty ended up leading to pretty awesome things. So for now we are letting go of the norm and learning to fly. Life is good.
With summer coming to an end what better way to celebrate than with the county fair. As of late my hands are not cooperating so we are going to have a photo adventure today. Check out our day at the Kitsap County Fair.
I am working on a new way to keep you all updated on the adventures of Wheels & Red. Don’t forget to subscribe so you don’t miss the first video blog on This will probably get interesting…
“Some researchers theorize that MS develops because a person is born with a genetic predisposition to react to some environmental agent that, upon exposure, triggers an immune-mediated response.” – National MS Society
William (Bill) Kalbach Jones was my great grandfather and he had Multiple Sclerosis. He was a civilian working in the Puget Sound Navel Shipyard as an Aeronautics Allowance Specialist. After my grandmother passed away we found a folder of letters he had written. The letters were years of personal correspondence from Bill to his colleague Elwood. Elwood was a Captain in the United States Navy stationed on the East coast. The letters start in 1953 and continue through 1959. They wrote as often as they could although there are plenty of gaps.
Bill spent most of his time talking shop. He loved his job and he was really good at it. There was plenty of drama in the 1950’s. Scattered through the letters are paragraphs about his waining health and his chatty teenage daughter(my grandmother). It’s hard to believe I can read through his account of MS. His case was very progressive. He used a wheelchair and typed every letter with the index finger on his left hand. That is some serious hunting and pecking.
He tried every treatment that offered any hope of slowing the progression. Starting with the standard treatments then moved to experimental ones and finally ending with religion. He didn’t talk about MS all that often, he never wanted to complain. He was a tough S.O.B. that did what he could to live a happy life with his family.
It’s hard to describe what these letters mean to me. One day I hope to put together a book of these letters to share with others.
But I am not going to rest in any such possibilities now in respect to my own effort to lick this health problem of mine. To slack off now would mean a measure of defeat in fighting my way. I guide my everyday action not by what I think I can do but what must be done. Just going up the stairs to bed every night is a tough bit of work, yet I do it. Sure it’s difficult , but if you do it because it must be done and forget how hard it is, it usually gets done. It is like working each day. I could develop a genuine aversion to it and get a medical retirement easily — but who would pay the grocery bill? I work every day not because i can force myself to overcome the obstacles of ill health — what’s that anyway? — but because I must work so I can eat.
If I cannot physically do what society deems “MANLY” does that make me less of a man?
It was Fathers Day and Solstice; Meg and I were getting out of the shower and the sun was pouring in through the skylight. I saw that creative spark in her eyes when she asked if she could take some photos of me. With her help I have come to love myself for who I am, so I didn’t even hesitate to say yes. Getting to see my body through Meg’s creative eye is very special to me.
I have struggled with body image for a long time but I think it’s time to finally let it go. Just because I can’t drink beer and lift heavy things does not make me less than. Empowerment projects do a wonderful job of helping people from all walks of life learn to love themselves; but I feel like there needs to be a bigger emphasis on helping disabled people learn to love the parts that are so often seen as “broken”. I don’t want people to look at these photos and see me; I want them to look at these photos and see them. To see that this body image struggle is the same, no matter if you’re disabled, healthy, or anywhere in between. We are the same. And we have nothing to be ashamed of.
The entire set of photos includes nudity, so if you’re not into it please do not click through.
When the tide is out at Illahee State Park you can head south down the beach and find a hidden gem called Sandy Beach. Sandy Like the name says it’s sandy, very sandy. Stuff like this being 5 minutes from our house is exactly why I love the PNW.
This was the spot to jump off the pier back in the day. I could’ve sworn it was a 40′ drop…
At 7 years old Tucker is all about climbing trees. This place has a bunch of rad fallen trees to climb. Perfect spot to watch the Ferry chug by.
This was a perfect way to spend the evening. The wind was whipping the warm air off the water.
The trip was awesome even though I had Tucker jump from one log to another and he slipped and got some barnacle bun on his shin. You don’t have to travel far to find adventure, it’s in your back yard.
In 2006 I was working as a sous chef in a local fish house. The Chef and I were really good friends, we spent most of our time drinking and playing video games. I started to see less of him when he started dating a Chiropractor. I didn’t mind so much since I was the boss when he was gone.
The Chef came up to me one day and said “I found the girl you’re in a marry”, I was definitely curious. She was the office manager at the Chiropractors. He couldn’t wait, so we hatched a recon mission right then. On our break we would hit the store to pick up a card and chocolate and then stop in at the office to see his lady. While we were there I would just nonchalantly check out this hottie office manager.
I wasn’t nervous until we pulled in, I had no idea what we were walking into. the first thing I saw when I walked into the office was a gorgeous redhead. She was obviously annoyed to have another guy in distracting the doctor. With her being so busy and her glasses on her head she hardly even noticed I was there. But I noticed her. After we left I found out she didn’t see me, I was huddled in the corner a bit. I later found out she wasn’t looking to see anyone but with a little convincing the Chiropractor was able to give me her number.
We met the first time for coffee. I was so nervous I went to the bar across the street and pounded a couple Irish Car Bombs first. Our coffee date was great, she choked on whip cream and nearly slipped and I was drunk. Meg thought I wasn’t into her but the truth is I was trying to hold my sloppy ass together. We both had enough fun to go out again and within 2 weeks we were dating.
We were married a little over a year later, May 19th 2007. We just celebrated our 8 year wedding anniversary and couldn’t be happier. We have been through a lot together but it has always been together.
Our close friend offered to do our dorky matching anniversary tattoos. We will always be Wheels & Red… Kel & Meg… You & Me. Happy Anniversary, you’re my favorite.
We had our friend Sammy stay with us for just over a week. Sammy is an amazing dude living the #vanlife. While he was here he jumped at every opportunity to help out, the guy even mowed my yard with a broken foot. He stays in his ’78 Econoline Camper with Silas the cat, traveling around creating and helping people. He is an all around badass.
We all learned from Sammy while he was here. Tucker even scored his first big kid skateboard. Having rad creative people coming through the house is what makes unschooling so special.
Sammy gave Tucker his phone and told him to get a pic from up in the apple tree. Instant cool points.
Sammy was kind enough to make us breakfast in the van one morning. Check out Meg’s 5 minute project to see our breakfast adventure.