It’s a Simple Life with Scleroderma and Me

It’s a Simple Life with Scleroderma and Me

Scleroderma and the Ordinary Girl

Life certainly is complicated, isn’t it? Over countless cups of tea with friends, I get to hear all about tricky mega-deals tangling big corporations, complex staffing issues, and legal wrangles with contracts. My friends have full and intricate working days and deal with perplexing problems at the office or the need to meet deadlines for the dispatch of goods and services. They also cram their personal lives into the mix, complete with managing relationships and negotiating the care of children.

Then there’s me sitting in my recliner, writing the odd column or two or sometimes dozing if I’m especially fatigued. It’s a fantastic day if I’ve managed to cook dinner, make the bed, and do some exercise. The rest of the time, everything is quiet and simple … very, very simple.

I had a therapy career once, complete with a caseload of 20 to 30 clients each week, complicated psych reports to write, meetings with general practitioners and social workers, and supervision sessions to participate in. I also needed to stay on top of developments in the counseling and therapy world by participating in conference training and networking.

But that’s all gone now. It’s just me, myself, and I in my recliner for the most part each day. Frankly, if I cannot manage to shower in the morning without a struggle, its a pretty big ask to accurately assess an emotionally distraught person. Then there is liaising with the local psychiatric hospital and writing the associated reports while remaining totally focused on the person’s needs. In the end, I had to give it all up.

Initially, I was bitter that scleroderma stole my career. I didn’t feel comfortable with such a simple existence. I felt I had been forced to veer off the brightly lit highway of life I traveled on, and down a plain, narrow track through the middle of a barren countryside somewhere. I really struggled with the apparent meaninglessness of it all.

One day, I scrolled through Facebook (where I had begun to live my life vicariously through other people’s posts) and saw this:

Wow! How totally amazing is that? But more to the point, the magnificent beauty of common sand remains unseen and underfoot, trampled in our excited rush to get to the ocean and jump on a Jet Ski or surfboard. However, we remain caught up in these attractive distractions and therefore blinded to the ordinary, uncomplicated splendor the universe offers in front of our very noses (or under our feet).

My quiet little road offers more than meets the eye, despite its apparent stark contrast to the bustling highway I once frequented. The trick is to learn to see again.

From the comfort of my recliner, I have begun to learn the art of finding beauty and meaning in all things, from the birds eating the seeds I place on a fence outside my window, to watching the plants sprout and grow in my patio pots.

Life does its own thing, offering meaning and purpose that is totally apart from the man-made hustle and bustle of the world. I just didn’t realize it at first. It is almost like being in a parallel universe at times. I’m so lucky to be a part of the simple and slow rhythm of it, and although poorer financially, I’m certainly richer in my appreciation and quiet coexistence with nature.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

2 comments

  1. Janet Hitchcock says:

    And that is the greatest blessing of scleroderma. Thank you for the greater work you do now of providing hope and meaning for those of us who have had to learn a new way to live. In many ways it is a better way.

  2. Jan Blomeke says:

    Thank you for sharing your world with us. I enjoy reading your articles and pray that it will get better for all afflicted with this. This totally explains my exhaustion.

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