when you have a chronic illness, you are enough

When you have a chronic illness you are enough

Guest post by Megan Clark Neville:

Megan Clark Neville worked as a children’s librarian at a public library for three years. She  published a chapter on Summer Reading Club Programs for Elementary Children through the Texas State Library in 2011. She has been chronically ill for the past sixteen years. She currently lives in the New York City area with her husband Mike, and her two kitties Mao and Mia.

 

When I fell chronically ill in 2012 I struggled with many aspects of my new life.  One of the most difficult was the sudden change in my activity level. I went from working full time at a busy and demanding job as a children’s librarian, to being semi-functional, to being bedridden.

Dealing with feelings of shame

This change hit me hard. All my life I had been taught that in order find happiness I needed to work hard, accomplish things, and help other people. And now my ability to “do” things was gone. I couldn’t lift a finger for anyone else, in fact I was the one being taken care of, and I felt ashamed and unworthy. Who was I? I reasoned, if I couldn’t be productive? If I couldn’t help others?

Feelings of disgust, shame, and despair filled every pore of my being. These feelings more than anything else threatened to send me into a deep nosedive of depression.

Furthermore, having just moved to Washington state from Texas I didn’t have any friends. For about 6 months I was completely isolated, the only person I saw was my husband when he returned from work each day.

The smallest acts of compassion can prove important to the shape and color of a person's life. For aren't our lives made up of all the small acts of kindness or cruelty?

Realizing that you are enough

Then an acquaintance from my church congregation started to come visit me. We barely knew each other, but she started stopping by to see me 15 to 20 minutes at a time, once or twice a week.  She was a very busy mom with four demanding and difficult children, as well as chronic pain of her own. Because of this she and I felt an immediate kinship.

Her cheerful conversation and sympathetic ear became a lifeline for me. Looking back, I don’t think I could have survived that period of time without her companionship. But more than that, it was she who would teach me a lesson I will never forget.

One night she came to visit me quite late. I was in my pajamas and in bed, but when I heard her voice at the front door I eagerly called out for her to stay. My friend charged down the hall, back to our bedroom, and threw herself onto the bed next to me. Surprised yet amused, my husband perched on a chair next to the window and busied himself on his phone.

For the next few minutes my friend and I chatted amiably and then we fell into a companionable silence. I reflected again on how fortunate I was to have her company. The fact that she would give up her precious time in my behalf brought tears to my eyes.

The smallest acts of compassion can prove important to the shape and color of a person’s life. For aren’t our lives made up of all the small acts of kindness or cruelty we experience? Click To Tweet

Then, once again feelings of shame overcame me as I sadly contemplated that it was absolutely impossible for me to help her in return. “I’m no use to anybody,” I thought to myself. “I’m a blob that merely sucks energy out of everyone.” I worked up quite the pity party for myself.

My thoughts were interrupted by my friend’s voice. “Bliss,” she said. “This is just utter bliss. It’s so quiet here. I’ve had 20 whole minutes of adult conversation with no screaming, whining, banging, or little people hanging on me and demanding things from me. No “Mom! Mom! Mom! Mom!” every 5 seconds. “These visits with you—they just rock!”

Her voice rose in pure pleasure, she spread her arms wide out over the bed’s blankets, closed her eyes, and gave a huge, contented sigh.

My mouth hit the floor. I couldn’t have been more astonished if she had turned into an elephant right there on my comforter. What? Was I hearing her clearly? Her visits to me…helped her? I had never thought of things from her perspective, but now that the words had been said her perspective make sense. I marveled that me, sick little me, had actually helped someone. Just by allowing her to help me, I had helped her almost equally in return.

Warmth creeped into my thin cheeks and into my frail body, the warmth that comes after you feel the first whiff of spring air after a long, bitterly cold winter. I had made a major breakthrough. I had discovered that just being me—was enough.

Concentrating on “being” rather than “doing”

Over the next few months I continued to discover that not having to rush around with the busy doings of life actually put me in a unique position to help others. As I concentrated more on “being” rather than “doing,” I found myself able to let my light shine into other people’s lives. I found myself caring  more about other people. I started figuring out little ways that I could help support the weak, the overlooked, and the people who were also caring heavy burdens. As I did so, the feelings of shame and unworthiness began to lift.

I discovered that the smallest acts of compassion can prove important to the shape and color of a person’s life. For aren’t our lives made up of all the small acts of kindness or cruelty we experience?

Concentrating more on “being” rather than “doing,” helped me to be able to let my light shine into other people’s lives Click To Tweet

To this day I am grateful to my friend for teaching me such an important lesson. And every time I start feeling like a useless blob, I remember that look on her face and her saying that one word—“Bliss…”

When you have a chronic illness you are enough

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4 thoughts on “When you have a chronic illness you are enough

  1. this is awesome. Shame. This is the word exactly. Shame is the missing word in my pain vocabulary file. And when I find the right words, the mental birds picking at my brain fly away. I don’t need to be ashamed that I am in pain. I don’t need to be ashamed how many pills I take and doctors i see to function. I don’t need to feel shame for laying on the floor in the middle of the day with a hotpack. I have bursts of low pain when I get to be the mom I want to be. But the shame doesn’t need to be part of my burden when I’m in a flair up and so many balls drop.
    Thank you for this. For dragging words out of your foggy, pain drenched brain. For the memory. For a moment of recapturing bliss.

  2. O this was so beautiful to read. Reminds me of the time when I was bedridden and my brother took a 16 hour flight to give me company and then realised I needed him more and rescheduled his return. And then a few months later came again. In that time, I learnt it’s okay to need and receive but I also realised, he needed to see me too – it helped him as well.

    I will share this post to everyone I know who I believe could do with reading this.

    I’m so glad Megan has done this guest post. 🙂

  3. Such a wonderful story with such an important message. I too remember that moment I realised that I could still help others. It’s given me back my self-esteem and a sense of my role in my new world of chronic illness/pain.

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