Living in Darkness Without Losing Hope

On, December 21st, the earth tilts farthest from the sun in the Northern Hemisphere. Ah, the gloomy gray Winter Solstice, the longest night of the year. No one knows as much about enduring dark days as my Norwegian relatives living on fjords by Narvik, near the North Pole. I, too, have learned how to live with limited light. For the past three years I have lived in darkness as I endure a medical treatment for a multi system, auto immune, inflammatory disease in which my body produces too much Vitamin D. I live in a house with lights off, my skin covered head to toe and hide behind thick black glasses. I lurk in the shadows, coming out at night like Boo Radley in To Kill A Mockingbird.

In one of my greatest moments of despair, I came to terms with the idea that we are all dying. Get over it, girl. As soon as we are born, our cells begin to decay. When I lament that I cannot ski the Alps, run marathons, travel the world as I so hoped after I “retired” from basketball, I focus on what I can do. I can write letters, give pep talks, edit English papers, encourage students, and offer support to family, friends and newcomers to Switzerland.

Right now as I write this, I am flat on my back, listening to my iPod, and typing on a laptop while resting the spine. This is not the life I envisioned. Oh no, I was going to conquer the world straight up. Even though I am often limited to my four dark walls, in a house shuttered closed like Fort Knox, I am amazed at how far the mind can wander. I can brush up on my German or French, strum my guitar, watch Macbeth, (ugh) take an on-line course, and write a blog.

Like a rapper without the bling, I walk to school in my hoody, shades and tennis shoes. Sometimes I lose my footing. But if Stevie Wonder could compose, “ You Are the Sunshine of My Life” and insisted “Don’t You Worry ‘bout a Thing,” in total darkness, I can make it through another day teaching with the lights turned low.

Everyday I gaze at the painting my dad made me of a lighthouse signaling safety from the stormy black sea. I focus on the pale reflection and pray for those struggling in the darkness; for my colleague suffering from depression, for my dad regaining use of his leg, for my buddy recovering from foot surgery, for a friend battling cancer, for all those people who are facing the loss of a limb, a life dream, a loved one, in moments of doubt and darkness.

Even though the blackness of longest night of the year seems interminable, I still have sunshine in my soul. And miraculously, the more I spread my light to others, the greater the hope, glows within me.

Posted in inspiration.

5 Comments

  1. What a very difficult thing to have to live with that must be! I never heard of such a thing before…

  2. Yes, I am actually a guinea pig in clinical trial with this strange treatment actually being used for a wide range of autoimmune inflammatory diseases. No fun, but it is amazing what one can endure.

  3. Oh,Pat,

    Your writing is beautiful~exquisitely raw and honest, touching a cord of authenticity. You bring me right into your experience and I am feeling your pain,as well as your profound sense of hope. It leaves me feeling empowered as you share the gratitude you feel for the life you have.Talk about the power of positive thinking! “Hope” is my brand~ how about doing a guest post on my blog? I’d love it!Just email me 300-500 word story similar to this post-how you found hope in the midst of your despair and send in an attachment to my email kpooler63@gmail.com.
    Think about it- this is really great writing!
    I’m a nurse practitioner and I must admit , I have never seen or heard of your condition- what a challenge. Your story and the way you write is so compelling 🙂

    Write On!
    Kathy

  4. Hi Pat
    I came across your blog whilst searching for vitamin D and living in darkness. My wife is suffering from electro magnetic and light sensitivity and has has to live in total darkness for the past 4 months. It is very difficult getting used to this as she is also a quadriplegic and is dependant on others for physical help. She would love to get out of the darkness but so far no one has offered much medical help.

    • John,
      I am so sorry to hear that your wife not only has to avoid the light but also is so confined in her body. On my darkest days, I listen to music or to books on tape to try to escape. I tried so many different treatments including one by my neighbor that has developed a treatment combating electro magnetic energy fields. Alas it did not work for me, but I would be happy to pass on his name if you wanted to pursue that avenue. I wish for your wife the courage to face another day in darkness and for you the strength to continue supporting her.

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