Perspective

Years before my blog turned into Kelly's Sustainable Life, it started as a blog to capture my summer as an intern for the Muscular Dystrophy Association (fitting, right?!) in Pleasanton, California.

The other day I was reading old posts while on a trip down memory lane and I came across one that I wrote toward the end of my internship that I want to share. 

The post is about the experience I had at MDA's Summer Camp. Summer Camp is a way for kids who have muscular dystrophy to be "real" kids for a week. 

When I was a kid I refused to go to MDA summer camp. I don't know if it was because I was scared, or just didn't want to be labeled as "disabled" but I was adamant about not going, and my parents never pressured me to. Sometimes I wish I had, but I'm at least grateful that I was able to finally experience it, even if it was in my 20's.

My life with CMS

Talking about my condition can be hard because it's incredibly personal. Having CMS affects every aspect of my life and can make many situations difficult, and I don't always like to share those details. However, I pushed aside my discomfort when one of Josh's colleagues at Linfield's Good Samaritan School of Nursing asked me to present to a group of second semester students who are studying chronic conditions.

I was asked to spend 90 minutes talking about what it is like to live with CMS and talk about my experiences interacting with the health care system, focusing on what these future nurses need to know to provide the best care. I was able to present however I wanted.

This was an exceptional opportunity because I have had my fair share of experiences with the healthcare system, both for prevention, testing and unfortunately, emergencies, and I really wanted to give these new nurses some insight into what it's like to be a patient in these situations.

Even though my presentation was informal, I was extremely nervous. Luckily, the students were gracious, curious and extremely polite and my nervousness quickly disappeared once I started talking.

What really amazed me was how genuinely interested they were. They asked thoughtful questions I could tell they really cared about me and my struggles with CMS.

One thing

Over the years I've had to learn to ask for help when I need it. I have no problem asking to take someone's arm to steady myself, or asked someone to come pick me up when I can't walk any more.

But one thing I can't ever do is get up the courage to do is ask a stranger for a seat on the bus.

First, I'm not sure what to say. But I think my biggest fear is that they will ignore me, or judge me doesn't look like I need to sit.

Of course it's more likely that they would say yes without thinking twice.

I really shouldn't care what other people think, but that's easier said than done. But sometimes it's really hard to have a disability that isn't obvious. Don't get me wrong - I am thankful my form of CMS is undetectable for the most part, but sometimes I think it would be easier if everyone just "knew."

I suppose the best way to get over my fear is to just ask. What do you think? 

I'm back

After being silent for more than a year, I've decided to start contributing to this blog again. I am finding that as I get older and encounter new challenges associated with having CMS, I need to continue writing about it outside of my goal to walk a mile.

Until a few years ago I never thought that talking or writing about my CMS would be of interest to anyone. But now that I am in a new city encountering new people in new situations, I find that I'm having to explain my disability to a whole new group of people. And that has proven to be tricky at times.

When I encounter a situation where I need to explain my CMS, it's always a challenge to decide how much to share. Sometimes I want to talk about it, and other times I don't want to go into much detail so this blog is my way of providing the opportunity for others to learn as much as they want to on their own terms.

My goal for this blog is not only that it be therapeutic for me, but to also help others who might be living with a chronic disorder, as well as anyone who knows someone with a chronic disorder.

I plan to update this blog only as I need to. And I don't plan on promoting it on social media, so if you'd like to get regular updates please bookmark it or subscribe as a follower.

I hope you enjoy reading.

-Kelly