The big climb

When I first started working toward my goal to walk a mile, four (!) years ago, I didn’t really make a plan for what I'd do after met my goal because I was so focused on meeting it. But once I made it, I thought, "I can do this again!" and continued to walk and keep up my stamina so I could maintain my progress.

Four years later, I am happy to report that I am stronger than ever, and I even accomplished another goal: hiking down to Crater Lake.

And it was the best thing EVER. And the hardest.

CMS can’t be “cured” by diet and exercise, but I think I am a shining example of how a lifestyle that includes a healthy diet and regular exercise can help alleviate symptoms from a chronic condition. I am very careful to eat a diet full of good fat and protein and not a lot of processed food. And early last year I started walking stairs in my building to build muscle and get into better shape.

Because I was working so hard to keep up my stamina and maintain a good diet, I wanted to pick a new challenge. So, when Josh and I decided to visit Crater Lake earlier this summer after a friend's wedding in Sunriver, I suggested we hike from the rim to the base of the lake and back up. The Cleetwood Cove Trail is known by many able-bodied people as an extremely challenging hike. It is only 1.1 miles long, but the elevation (almost 7,000 feet) is extremely challenging, and so is the steepness of the trail. In fact, the official description says that it should not be attempted by anyone with heart, breathing or walking problems. Josh had also done the hike before and knew it was hard, but he also knew that I could do it, so when I suggested it, he was on board.

The night before the hike, I made sure I got a good night sleep and the morning of we ate a good breakfast. We also made sure to pack lots of snacks and water. Given how prepared we were, you’d think that I was getting ready to climb Mt. Hood! The hike down was hard and I was pretty unsteady for the second half, but I was able to walk the entire distance without having to sit down and rest, which surprised us both.

When we got down to the water, the view was breathtaking, literally and figuratively. We sat for at least an hour to rest, eat lunch and take in the beautiful scenery. And then, to our delight, two friends of ours, Cam and Julia, walked down the trail! They had been at the same wedding and also decided to take a trip to Crater Lake, unbeknownst to us. We chatted for a while about the funny coincidence and then said goodbye as we made our way up the hill.

A little while later, Cam and Julia caught up with us. They walked with us for a while and were polite when I had to stop to rest, but unaware of the reason. Eventually, when I was so tired I was about to fall over, I told them.

When I was finished, they were shocked. Julia exclaimed “But you look so fit. I totally thought you did CrossFit!” I laughed (and thanked her). They insisted they continue walking with us, which was really nice of them. And when we got to the top, they cheered for me, and we took some photos.

And I cried. Not a lot, but a little. 

Every time I accomplish a physical challenge I never thought I could do, I feel so thankful. Thankful that I have a husband, family and friends to support me. Thankful that I've figured out how important of a role diet and exercise play in helping me manage my CMS. And thankful that I have a disability doesn't stop me from hiking a trail noted as "not accessible for people with mobility impairments" down to the base of a dormant volcano.

First comes love, then comes marriage, then comes...baby?

Right now it feels like everyone I know is either trying to get pregnant, is pregnant or has a new baby. And because babies are such a hot topic, I am often asked when Josh and I will start our family.

For many people this is a normal question that elicits a normal response. But for us, it's a little more complicated.

When I was growing up I assumed that I would get married and start a family the "natural way." But once Josh and I started talking about marriage, we also started discussing our plans to have a family, and based on the risks to my health because of my CMS, we decided that we would not have our own biological children. Instead, we decided that we would adopt.

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?