lyme disease

Having Mindfulness In the Face Of Incurable Chronic Illness

ceac7de31d70506710c0770ee9315dba

Mindfulness– a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.

I realized from a young age that something about me was different from my friends. When we would play outside at recess or during gym class, I lagged behind, sat out, or went home crying and sick. Many days in school were spent in the nurse’s office, laying on the cot, shaking and covered with a blanket, waiting for my mom to come pick me up.

I knew I was different, I just didn’t understand what was happening. After being shuffled around from doctor to doctor for many years and almost not graduating from high school due to missing so many days of school, I knew life for me would be different. There were no plans for college, living on my own and working didn’t pan out, so I had to learn to adjust to a new life, different from all my peers. After 24 years of not having answers, I was finally diagnosed with late stage Lyme disease.

Along with that diagnosis came depression and anxiety. I didn’t realize how much my life would be changed by this disease and there are days where I’m still in denial, most likely because of my desire to live a “normal” life. Life became about going from one doctor to another, constantly finding things wrong with me and having a desire to try and control everything around me since I couldn’t control what was happening to me. I knew my body was under attack and there wasn’t much I could do about it.

 

As human beings, we like to have control. But when you’re living with something like an incurable illness or a disability, there’s a unique form of stress that arises when you realize a major part of who you are is out of your hands. That, with no justification as to why, the deck of cards you’ve been dealt is vastly different from those around you. People generally like to take bad things and make them better. We like to mend things when they’re broken. But when a fundamental element of your existence is unfixable, an array of emotions bubble up to the surface. Sometimes they break through, or sometimes, I’ve found, they can lay dormant for a really long time, bubbling like hot lava, but eventually they come to the surface.

The way I see it, there are three ways to look at the hand you’ve been dealt. One way is to disassociate from them and pretend it doesn’t exist. The second is to acknowledge them but with anger or sadness, living a life full of complaints, driven by worry, and fear. The last, and most difficult, is to acknowledge them with grace and gratitude for what good lies within.

I wouldn’t say I had a light bulb moment. Over time I began to recognize that I couldn’t control the things that were happening to me, but I could control how I responded to them. Maybe it was my husband constantly reminding me to be positive or all the self-help books I read, or maybe it’s the inevitable growth you go through when faced with a life-altering situation, but I came to accept that my condition wasn’t going anywhere. It wasn’t going to change, so I would have to change from within.

When I chose to start finding the good buried beneath the bad, I knew I had to figure out a way to see the beauty in life. This meant living in the moment, not in the fear of my future. For as long as I remembered, I’d been bad at being present. And it’s not surprising as to why. Living with a disease, there is constant worry: Will it ever go away? Will I lose the ability to walk entirely? Will I ever have children? Will I be able to pay all these medical bills? Will I ever be normal again? Will I die?

Even day-to-day things that are normal for everyone else, like breathing, walking or going to the store can remind me of how different I am and bring up the fear of how much worse things might get. As with any incurable or progressive condition, these thoughts can run rampant and take a paralyzing hold of our days and our lives.

Knowing that being in the moment was really difficult for me, I decided to get more serious about changing my mindset. I began to practice mindfulness. Mindfulness is generally regarded as the act of being in the present moment, without judgment. When we are more mindful, we are more insightful. We become more present in the here and now.

After a while, senses become more enriched. I began to taste my food more. I started really listening and hearing what people were saying. I took note of the feeling of the sun on my skin or cold air on my nose. I became more attuned to other people’s sufferings. It was like I began to see life more clearly. I realized how unimportant a lot of things are in life that we tend to put so much emphasis on, like what job you have, or how nice your house and cars are or if you can go on expensive vacations. I began to truly witness and connect with all of life’s precious fleeting moments knowing that our time here is very short, and for some of us, it’s much shorter.

Mindfulness has taught me to slow down and reflect before I react. Having lived for so long in a hyper-stressed state with mental and physical ailments feeding off one another, I can look back now and say that being more present is transforming my body, mind, and soul.

Today, I choose to see my deck of cards through a very different lens. What once looked like a dark curse has transformed into something light—a blessing, even. Without my disability, and the journey I embarked on because of it, I wouldn’t have never been able to find gratitude. Being an individual with an incurable illness is a fate that I’ve accepted. Doing this led me to my purpose of helping others, and that’s something I would never change.

 

20 thoughts on “Having Mindfulness In the Face Of Incurable Chronic Illness

  1. Thanks for the thoughtful post. I can relate to this completely, I have Marfan syndrome and though I’m not as badly affected as others there are still a lot of things I can’t do. I get so frustrated when I can’t do normal things like other people. I will have to try this mindfulness stuff. 🙂

    Liked by 1 person

    1. I’m not familiar with Marfan syndrome but I’m sorry you’re having to go through that! I know how you feel. It can be difficult to not be able to do all the things everyone else does. We just have to have peace with the fact that we all go through different journeys in this life 🙂 I’m glad my post could help!

      Like

  2. Powerful testimony. It’s an endurance race to a distant finish line. You have great depth in your reflections on your affliction. This could preach from any pulpit.

    Liked by 1 person

  3. Powerful testimony. It’s an endurance race to a distant finish line. You have great depth in your reflections on your affliction. This could preach from any pulpit.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s