The Challenge Before the Challenge

Hello and welcome! I have talked a lot about challenging myself on the big hill since I started my stem cell therapy. It’s become something I “like” to do that gives me a renewed sense of hope when I successfully reach the top. The thing with the big hill is that it’s quite a little hike for me to even get to the start of the hill. The challenge before the challenge. It’s probably a 5-6 min walk to get there. Mostly flat ground, but still. It’s not easy. My legs are already tired before the challenge even begins. 

The path to the big hill

Growing up, like I’ve mentioned before, I had to have several surgeries to deal with my ankle contractures and instability, which are common things with Bethlem Myopathy. As I got older, I started to realize that the surgery was just the challenge before the big challenge. After, was when the pain came along with months of rehab, learning to try to walk again with the new function of my feet, or ankles. I can't even count how many times I have had to learn to walk again. A lot, but I’m so grateful for the ability.

The truth is, living with a disability, the challenges never really end. It’s a constant continuation of physical challenges, which affects one’s mental well being too. And, it’s not as if those living with disabilities only deal with challenges specific to just their disability. On top of that, we deal with all the things those without disabilities do too. Illness, mental illness, financial stress, broken bones or other injuries, friends and family members who need our help, and our aging bodies just to name a few. I think a lot of times, with the disability being the focus because that’s often the first thing noticed, people forget that we deal with lots of other things too. 

I don’t say this for pity. Anyone who knows me or has been around here probably knows that is the LAST emotion I ever want others to feel when they think of me, and how I live my life with a disability. Having compassion for what someone is living with is a lot different than having pity in my opinion. Though the two are closely related, I think pity is often seen as a negative word. I think we are all worthy of compassion vs pity. I see this a lot in regard to those with disabilities. The compassion just isn’t there. Often, people expect people with disabilities to be just as functional in society as they are, but they aren’t willing to help us get there. That is what we do desire, but our world isn’t built for those with disabilities. It’s just not. There are many roadblocks. There have been many improvements, but if I can still go to a restaurant and be told the only bathroom they have is upstairs and there is no elevator, or go to a public place that doesn’t have wheelchair access to get inside a building, then we are FAR from where we need to be. Below are several beautiful moments of compassion that I’ve been on the receiving end of.

Compassion is Powerful 

Another thing I’ve noticed through the years in observing other’s reactions towards those with disabilities, is the thinking that we are seeking special attention, or using our disabilities to get ahead of the game. That is just not true. We are just seeking changes for basic human rights.  Sometimes, those requests for accommodations seem dramatic to some, but may be how the person with a disability needs to handle a situation to be able to adapt to it in the way they need to, to be able to function. Not because we think we are “special” or we are trying to be catered to. I have myself been on the receiving end of this kind of thinking, as well as have read about and witnessed it happening many times to others. It has also affected my children when people have said things to me in front of my family along these lines. So, yes this is very real. 

The revolving door of challenges never ends. We don’t get breaks from our disability. When you live with an incurable disease, there are no "seasons" of getting away from it. So, it’s important to learn to go with that flow, or the challenges are absolutely going to eat you alive and spit you out. How do we do this? Extreme diligence and perseverance. Constantly brainstorming and adapting. Staying focused can help us stay out of the deep pit of despair, where I used to be a frequent flyer. I still visit from time to time as most humans do, but I’m no longer a frequent flyer. I hope to never be again, but I know the mental work it takes to stay out, and it’s daunting. 

Probably, the most important thing, is to give yourself some grace! Take time for guilt free rest. That is actually one of my top priorities this year. To take the time, to just rest my body, and honor all that it does for me. I think that will actually benefit me in the long run. Of course, all of these things are easier said than done, but working towards these things has made a big difference for me. 

Guilt free rest and stretching  ✅

My hope in writing these weekly blog posts is, that in some small way, I can help raise awareness around issues that, quite frankly, are too often overlooked. It takes humble courage to put myself out there like this, knowing well that some will see it as nothing more than essays of complaints. That’s ok. I hope most of you don’t see it that way. I am a person with a disability sharing my view on how this world works for me and many others. My hope is that it falls mostly on compassionate ears. When we take time to listen to others, we can learn a lot. Thanks for being here. 💚