Working with Seattle based landscape architect Silvia Janicki: On how public spaces can better support people with invisible chronic illness such as Lyme disease

Sylvia contacted me through connections on Facebook, she wanted to know if I would be interested in doing an interview with her. She is a landscape architect who is investigating how the built environment, specifically public spaces, can better support people with invisible chronic illnesses like Lyme disease. She also hoped to understand how living with a chronic illness impacts the way we navigate places.

The interview was an informal and open-ended phone interview which was recorded by both of us. She wanted to hear my story; How living with chronic Lyme has impacted my experience of the built environment, and what kinds of places provide comfort and healing for me. Her goal is to use findings from the interview to inform a set of design guidelines for creating restorative/healing spaces for people with invisible disabilities like chronic Lyme. Attached are part 1 and part 2 of the interview we did last year. Please contact me if you would like to hear the entire interview or see my YouTube page.

https://www.youtube.com/channel/UCZZFHgwF_hoUvCr1Fe5nQNQ?view_as=subscriber

*The Good News* Silvia has since been working with a computer scientist to design an app that applies the findings from the previous project she interviewed me for, mentioned above. The app is designed to help people with chronic illness navigate public outdoor spaces. They developed a prototype and would like to see if it can be useful to people who live with complex chronic diseases like Lyme.

Sylvia reached out yet again to see if I would be interested in participating in a user study interview for the app, since my input in the previous study played an important role in its development!

More to follow on the app interview and the app itself!

The videos below were filmed February of 2019. Just two random in no order

You Tube Videos: Tracking treatment and symptoms since 2014

When I discovered I had late stage Lyme disease one of the first things I wanted to know was, how is treatment going to be?  I saw horrific videos all over YouTube of herx reactions that frightened any life I had left, out of me.  Once in treatment I began a YouTube channel dedicated to my Lyme disease treatment and progress.  I make an updated treatment video within a week of visiting my doctor.  In these videos I discuss my treatment plan, symptoms, and any thoughts I may be having at the moment.  Not the most entertaining videos, but I hope they answer questions for others beginning treatment or currently undergoing treatment.

Below is an example of my posts.

You can find all of my videos dating back to November of 2014 on the link below the video.

Source: https://www.youtube.com/channel/UCZZFHgwF_...

Public Service Announcment: My Lyme disease Story

I was recently able to join forces with two Seattle based film makers and enter the Genero: Shine A Light On...A Global Social Cause contest.  Our team decided to share my story and shed a light on Lyme disease. By clicking on the link below you can watch the 30 second PSA and if you would like to purchase the video for your foundation or event please click on the "buy this video" tab.  Enjoy.

Source: http://genero.tv/watch-video/39744

On the Radio: Raising awareness by sharing my story and discussing Lyme disease

I was given the opportunity to spread awareness by sharing my Lyme disease story on the radio.  The Lyme community should be proud and Bellingham should be more aware of what lurks in the backyard.  I was able to touch on all the important controversal topics and answer questions that I get asked from around the world. Please listen to the segment below, you will learn so much

Press play and wait about 1 minute!  It will start eventually and it's worth hearing ;)  There is a silent commercial mid-way through the segment, keep listening it will continue after about a minute!