4 Articles on 1 Theme: Thriving while living with debilitating, chronically difficult health

As 2019 comes to a close, I thought I’d share some articles that I’ve found particularly valuable recently.  I hope you do, too.  I’ve included my own thoughts about each piece with a few morsels to give you a taste so you might want to read the article in full.

 

The Healing Gift of Cats, Rachel Naomi Remin, MD.   In this beautiful piece, Remin, who lives with Crohn’s disease, shed a new light on what my animals bring to our relationship.  I work in my home but I’m never alone.  My dog, Charlotte, and cat, Bodhi, are my daily companions.  We hear a lot about the healing power of human/animal relationships but I hadn’t thought about what they can teach us.  Remin closes with this quote from Gurdjieff, the philosopher and mystic: “A pet is a little tuft of consciousness that circles a person like a moon around a planet and completes their energy field. In a more daily language, our pets heal us and make us whole.”

 

My husband wasn’t my savior.  I am.  Brenda Arrendo.   This personal account of love, loss and mastery could make you weep or punch the air.  Almost 40 years ago, when a friend with whom I’d bonded around living with multiple sclerosis told me her husband had left because, “he didn’t want this life”, I was deeply sad for her.  But I could see how this could happen.  Marriage is tough enough.  And when you’re young and not expecting to be limited by your partner’s bad health, it’s easy to see why some would flee.  “For a long time, I viewed my ex-husband as my savior. Even though the illness was no one’s fault, I allowed the all-consuming guilt to make me a shadow of my former self.”.  Arrendo takes us on her journey from deep shame to the profound recognition that she didn’t need someone else to save her.  She could do it for herself.

 

What I learned when I stabbed myself 52 times, Frank Bruni.   I experience a visceral negative reaction when I hear someone glorify those who live with chronically debilitating health.  Don’t get me wrong.  I firmly support the idea that, like any difficult challenge, chronic illness offers opportunities to grow in ways you might not otherwise have done.  New York Times Opinion writer, Frank Bruni, (I love his blog) has written about the onset and living with degenerative vision in one eye.  Although this is a huge loss, he can still do many of the things that he once did with two good eyes.  He recognizes the unlike some with illness, he’s not facing unpredictable pain or severe fatigue.  But this increasingly significant loss is undeniably shifting his landscape.  He’s noticed how his resentment of the painful, daily injections of a trial medication shifted in time into a new found appreciation for his strengths. “It turns out that I’m tougher — more durable — than I knew.”   He also recognizes, “I don’t just see differently now. I listen differently. I hear more. It’s as if I possess this new, extra sense in compensation for the imperiled one. It grew with each injection. It grows still.”  These are lessons each of us has the capacity to learn.

 

Should You Disclose Your Illness to Your Employer?   Brianne Benness,   Although the article was published in Brain and Life magazine, the topic is relevant to anyone living with debilitating, invisible and chronic disease.  It includes:  Transparency, Timing, Issues to research and Steps to Take.  One point I’d make regards the American Disability Act, the ADA.  Although the ADA offers some levels of protection and it can be useful and necessary, I’ve been told by legal experts that it should be used with caution.  It’s important to do your research regarding whether your situation is applicable.  Additionally, my own personal experience with my clients is that few managers and too many HR professionals don’t really understand what the ADA covers.  As Benness suggests, do your research before invoking your ‘rights’.   

 

And here’s my ‘bonus’ read. It does not focus on living with chronic illness but, hey, don’t many of our best life lessons come from unexpected sources?  Malcolm Gladwell’s book, Talking to Strangers,  What we should know about the people we don’t know  captivated me from the first word to the last.  Throughout the seemingly unrelated anecdotes, Gladwell makes the case that human beings are by nature trusting and they will inevitably “default to truth”.   “Something is very wrong,” Gladwell argues, “with the tools and strategies we use to make sense of people we don’t know. And because we don’t know how to talk to strangers, we are inviting conflict and misunderstanding in ways that have a profound effect on our lives and our world.”   For those of us living with visible and/or invisible health challenges, misunderstandings with strangers can be traumatic.  Many reviewers cite this as Gladwell’s bleakest book yet but I found it uplifting (I know – that sounds odd!)  For me this valuable insight into human behavior reminds me again that life is full of surprises, if we allow it.   Note:  The title link is to the audio book which is how I read it.  You can also read it hardcover or download pdf