Isolating and Other ING Words: A Link-up Post

Living with a chronic illness or disability can be extremely isolating. I spent a large portion of September in actual hospital isolation, but have been feeling disconnected under regular circumstances for quite some time now. Although I tend to stay active even while sheltering in place, recent medical issues required me to slow way down for several weeks. As a result, I have many thoughts running through my mind and feel the need to write again--to revive this blog and give it new direction. The October Writing Prompts, provided by A Chronic Voice, inspired me to get back at it. Each prompt is an ING word related to life with chronic illness/disability.  Here are my thoughts about each one. I look forward to reading yours!

Disabling

I try to ignore the fact that I have an invisible disability. I'm rather strong-willed and determined. I also love my family fiercely and for years pushed myself beyond my limits to make sure their lives were impacted as little as possible by my limitations. However, I have rules I live by to ensure I stay as healthy as possible. Occasionally, in my quest to be Super Wife/Mom, I ignore the rules and pay mightily for it. Case in point: the past few months.

I worked from home during the pandemic, only leaving my house when absolutely necessary. I was self-employed as an IC with a tutoring service. Brokering a work-from-home deal for two years was stressful and draining, and I decided to take a year off. That was in February. By August, I was stir crazy and wanted to conduct an experiment. I took a part-time job outside my home to find out what would happen if I left my bubble. Could I physically manage the demands of working and would I stay sick all the time out in a germ-filled world because I am immunosuppressed? 

The short answer: No, I can't handle the physical demands, and yes, I will indeed get sick. Very, very sick.

Before I had even received my first paycheck, I had spent it. I didn't go on a shopping spree or treat myself. Instead, I paid for an all-inclusive stay at a luxury resort: the hospital! I was placed in isolation (Covid room) for a week because it looked like I had TB. I also had two lesions in my lungs which required biopsy. 

2 ER visits + 1 week of hospitalization + numerous co-pays for office visits before and after = bye, bye any money I made on the job!

Thankfully, it turns out that I only had pneumonia. After a month of recovery, I am feeling better. However, I am having to face the fact that there are real limitations on what I can do with my life. The only way I will ever be able to hold a job again is to work remotely. 

I feel like Rapunzel and wonder if I will ever be able to leave my isolation tower. 

Enabling

"Enabling" has a negative connotation for me. For example, "They are codependent and enable each other." However, the prompt asked us to think about who or what enables us to live well. I have to use this space to thank my husband. He has kept his vows for 27 years and truly lived them well this past month. His kindness enables me to be my best, and his gracious disposition reminds me of how much God loves me. 

To visit me in the isolation room, he had to wear full PPE. This included a very uncomfortable N95 mask. It was tight and hot and made it hard for him to breathe. He didn't complain. (Well, not too much. He is human!) He served me and stayed by my side. While taking care of me and being worried sick about me, he also worked remotely. The demands of his job didn't stop just because his wife was in the hospital. He had to balance a lot that week, and by God's grace, he did.

He is supposed to love me as Christ loves the church, and (again) by God's grace, he does an imperfectly great job of it! I could write a book about the ways he has served and enabled me over the years. I am truly thankful for him.

Committing

At the moment, I am fully committed to a full recovery from pneumonia. I also want to take good care of myself and my husband. (The kids have all flown the coop. I'm committing to letting them take care of themselves, too. LOL!) 

I want to find something else that I can do from my tower home to be a contributing member of society and help me with my Rapunzel Syndrome. However, now is not the time to figure that out. It is my time to rest and take care of myself.

Communicating

I'm in a season of not wanting to try to explain my illnesses to others. I've been chronically ill for a long time and I'm frankly tired of wasting my breath. ;) ;)

I am, of course, referring to those annoying, fruitless IRL encounters. The people in my life who get it, get it and always have. I appreciate their support and kindness, and they don't need for me to explain a thing. However, those who don't get it...I don't think they ever will. And, perhaps they can't. I think it's like me trying to understand what it is like to live in the 3rd World. I can read about it, think about it, try to imagine what it is like. But can I really understand it? No. It's impossible. It's something I have never experienced. Truly, I wouldn't wish this life on my worst enemy, so I suppose that means I hope they never do fully understand. 

However, that doesn't mean I'm not in favor of trying to communicate to a broader audience, to try to raise awareness or to educate. While those who do not have chronic conditions may not ever fully understand the impact of living with one, they can broaden their perspective. They can be kind. They can be our allies. They can support us in myriad ways. I hope that as I revive this blog I can contribute to the efforts to make our world a kinder place for the chronically ill and disabled. I am a true advocate and friend.

Reinventing

Oh boy, am I being reinvented!

I am a veteran homeschool mom who graduated her youngest just before the pandemic. My nest emptied as we were going into lockdown. I lived in isolation during the pandemic for several months. My husband moved in with one of our sons to protect me from Covid until we had viable treatments. I've had a fruit-basket turnover this year professionally, followed by the failed work-outside-the-home experiment I mentioned earlier. Facing the reality that I must work from home killed a number of ideas I had about what I might do with my life post-kids. At this point in my chronic-illness journey, I am used to dreams dying. This isn't the first time illness has brought my plans to a slamming halt, and it probably will not be the last. 

I keep coming back to Psalm 46, particularly verse 10 that says (in the context of declaring that God is present, active, strong, and our defender--even when the world seems to be ripping apart at the seams), "Be still and know that I am God." I think that is what I am to do during this season of feeling like I can't do anything of any real consequence: stop trying to figure out what's next and just be content in God. 

Although I feel adrift at sea, I believe God is in control of the winds and the waves that make me feel tossed about. I believe he is my ever-present help and though I may be isolated, I am not alone. I'm doing my best not to worry about how to get to shore, but instead to lie back on my raft and rest, knowing he will keep me safely in his loving hands. While I may not have a plan, he does. His plan is perfect and is for my good. May he be praised!

Grace and Peace!

Dawn

Photo 1: https://www.pexels.com/photo/ambulance-architecture-building-business-263402/

Photo 2: https://www.pexels.com/photo/wood-love-writing-luck-6268699/

Photo 3: https://www.pexels.com/photo/photo-of-tower-under-cloudy-sky-2466822/

Photo 4: https://www.pexels.com/photo/woman-placing-her-finger-between-her-lips-568025/

Photo 5: https://www.pexels.com/photo/raft-in-the-sea-2967846/