Disabled and Whole

When I began this blog, I didn’t not really have the intent for anyone else to read it. I figured it could be a safe place where I could process, in written form, the grief, pain, joy, and suffering of being a broken human. When I decided to make it accessible, I figured it could just be one woman’s honest take on being disabled in body while also whole. Since starting it, I promised myself that I’d document the honest, real life experience of a woman battling MS. This disease is painful. I couldn’t have imagined what the feeling of MS is like. It can greatly affect one’s quality of life, all while remaining virtually “invisible to the naked eye”. The learning curve for daily living has been extremely steep these past 3.5 years…Oh God, how do I do this? How do you learn to live in this battle day in and day out without any breaks, and still have the fight left in you to go just one more day…One more day. Then, one more day.

I cannot help but think of a person today who is being newly diagnosed with MS. Looking back, how I wish I knew the things that I have learned in just a few short years. This I plan to slowly open up and share in time. There’s an element to actually living through it, fighting through it, and trying to not only survive, but thrive. Is it possible to thrive in a body that is constantly experiencing physical pain and slow, microscopic neuro-degeneration? That has been one of many questions I have had for my God in this “War against MS”. I wouldn’t say I’m quite thriving just yet, but I’m on my way. Accepting yourself and your abilities right where you are at, while also putting in the work to strengthen and fuel your body well, is not an easy task. I wouldn’t say I have totally accepted myself as I am in this current moment, but acceptance is a process and I feel it’s labor pains. I have so much more to learn, but I am also gaining traction when it comes to living with this incurable chronic condition.

On this road, you’ve got to learn to laugh at things and celebrate the victories as they come. These days, doing simple squats, picking up Roman, or even carrying the laundry up feels akin to taking a shot at MS. Whether that sounds pathetic to you or not, to me, it’s everything. It’s the grit to keep going, when you’d rather lay down in the desert and die. Small daily steps of conscious, focused, painful effort are sometimes all one can do. In such situations, one naturally wants to safeguard the things that help fight the fight. I used to exercise a lot before MS and would crush a high intensity workout regularly throughout the week. Sports were my life. I was a Division 3 college cross country runner and javelin thrower. I was a black belt in martial arts after 10+ years of work, starting at age 5. In High School, I ran track, cross country, played basketball, threw javelin (with some of you reading this!) Movement is so important to me. As an emergency room nurse, being fit and strong was a big part of my job, as I often moved patients from stretchers or performed CPR.

All I can say is that how it feels in my body now to workout has changed immensely after MS. It’s hard to describe, but it’s not a such a great feeling, that much I can tell you. I’m so thankful that I went into this MS journey with some strength, because I have needed every ounce, and it’s taken years to get even a portion of that physical strength back. The physical effort alongside the mental hurdles of nerve pain and the constant judgments of others about the shifting nature of MS’s presentation kept me from regular activity for the first few years. Not anymore. So far, I’m in my fifth round of physical therapy in the last 3 years, and I’m only just beginning to see changes. One day, I need a walking stick for support due to muscle fatigue. The next day, I have the endurance for a short Peloton ride. MS is a shifty mistress. It likes to mess with you, making you think one day you are doing pretty ok, then the next try to crush your soul. (Thank you, Jesus, that it can never actually do that). So, when I said it’s important to laugh, I do chuckle to myself sometimes when I hop on the Peloton or go to ride the horses at my physical therapy (so excited to tell you about this one), because even with these less intense exercises and movements, I still feel a little bit like a badass, and MS doesn’t feel as scary. 😎

Being whole isn’t based on your physical or cognitive abilities. It is not based on how hard one can work out, or whether or not you need a walking stick today. It’s based on what my Maker says about me. Fearfully and wonderfully made. Imago Dei. Loved. Cherished. Accepted. Whole.

So, I still have many fears, but I’ve gotten more confident and much braver about being a disabled young woman in this world. Using accessibility resources available to me doesn’t strike as much of a chord in my soul. It feels like less of an affront to my identity. Rather, I feel thankfulness start to bloom in me for the resources, silently crying out to God for my fellow disabled humans around the globe who lack resources to help.

I care a lot less about the opinions of others. I can gladly say I am maxed out on the therapies and treatments I can fit into my schedule and our budget. I am thankful for modern medicine as well as naturopathic/alternative therapies.

For a while, I’ve had to “put the blinders on”, focus hard on the essential things of life, and depend desperately on Jesus in this fight. This meant that social media was on the chopping block and needed to go. Detoxing from socials for a whole year did my brain soo much good. 🧠 I don’t really think I’ll be going back to regularly scrolling socials (nothing personal to anyone, it just hurts my brain. I love snail mail though! And email!) Nature has helped too. Getting out in nature for some forest bathing with my family usually helps. Roman is learning how our family has different needs and I see him growing into such a compassionate young boy (amidst the normal toddler shenanigans 🫠❤️)

All that to say, I’ve decided to write here a bit more often. I promise to be honest about this road. Reading and listening to others people stories of persevering through adversity is one of the many coping mechanisms I have developed these past few years. So I’ll keep sharing mine in the hopes that it helps you keep going too.

Much love,

Chelsey