It's been a hectic few weeks. I meant to post this here when I wrote it on Facebook on September 2nd but didn't find the chance to. We were on vacation in Kauai for a week and it was wonderful. I plan to do a video of our trip and post some pictures here but if you want to see what I was up to I was more active on my Instagram @kamredlawsk and have a few pictures there.

While I was gone Huffington Post and Healthline released a story about me. 

Huffington Post / Artist Creates Eye-Opening Illustrations About Her Rare Disease

"My art was originally meant to spread awareness for GNEM but I’ve realized the viewer may see his or her own life in them, which is really nice,” she said. “I’ve had many strangers from around the world confess their own struggles and share how one of my drawings helped them to either see it differently or feel heard.”

Healthline / This Artist Is Facing Total Paralysis in the Future and It Keeps Her Going

"And that’s the powerful theme behind Redlawsk’s art. Through her personal experience, she captures the essence of being human. She can draw a monster on her ankle and refer to her leg braces, but it’s the movement toward light, the kicking off of a struggle that trips us up, that we can all connect to."

 I'm going to cheat and copy/paste what I wrote on my art page while in Kauai. I think I wrote this after two days we were there:

"Besides our typical exploratory local road trips we haven't taken a long distance trip in awhile. Due to life and lack of vacation time our last big trip was to Australia 5 years ago. We visit Michigan annually and I traveled to Washington DC last year as an advocate but other than that I don't get to fly as much as I'd like to. I had limitations during my Australia trip but could handle travel just fine. But I can sense this time around it's much more difficult for me. I can still do it but for the past few years chronic pain and chronic fatigue has crept in addition to the chronic weakness from GNE, so I'm required to deal out that much more will in order to travel at the same pace.

I've been in a lot of pain and much weaker this trip so things are much harder. For example, eating on the plane by myself was almost unmanageable and I required some assistance. My shoulders and neck are so weakened that eating has now become a challenge. I can still eat on my own but I need some sort of surface beneath me like a table so I can prop my arms up. If I don't have this set-up then I have to engage in some acrobatic act just to take a drink or eat a sandwich. 

When my living quarters like the bathroom bedroom, bed, or shower change this becomes a major roadblock. When something minor changes my routine is thrown off and we are forced to creatively problem solve every minor move we make, which can be both frustrating and satisfying. Figuring out how to get in the bathtub garners a round of applause, it's the little things. If people saw some of the situations we get into they would either laugh or be horrified.

When I went in to a wheelchair in 2011 I started documenting trips in my chair as a way to catalogue my travels but also because I wanted people to see despite the chair and limitations they could still do things even if it wasn't in the way they imagined.

It breaks my heart to know people don't live life because of their limitations, even when when they're self imposed. Those who don't want to because they don't want to face the stigma, ridicule, stares or insensitivity or even because everything is difficult can be reasons to further limit ourselves.

I started photographing my back to the camera in landscape shots because I wanted the viewer to pay attention to the beautiful scenery and not me, but also as a message of looking forward. This pose has kind of become my thing.

Sure, today I have more weakness, chronic pain and fatigue but I just refuse to let GNEM (aka HIBM) take everything from me without some kind of a fight. GNE has already taken so much. If I can fight through it to see beautiful scenes like this then I will continue to as long as I can. Sometimes, I mentally calculate how many years I have left for traveling which sparks a certain urgency. I don't travel anywhere near as much as I'd like due to lack of work vacation time but I hate knowing that one day all this may not be possible. When I think like this I think of patients who are far more progressed and still travel the world like my friend Yuriko who is constantly traveling the world to further her advocacy. It makes me believe I too will be able to do the same.

I'm lucky Jason follows me as I seek out my dreams and silly adventure ideas, all the traveling I've done would otherwise be near impossible. In a week and a half we will have been married for 8 years, I can't believe he's put up with me that long 😉.

Today, we are going on an ATv tour through the rainforest so let's see how my body holds up 🙃. You can follow my Kauai travels on Instagram @kamredlawsk"