Appreciating IS in the Midst of Chronic Disease

What an absolute delight to learn that Dr. Carlo V Caballero shared my writing on his Rheumatology 2.0 journal.  Dr. Caballero is president of PANLAR (Panamerican League of Assoc. of Remautology).  Thrilling to see greater communication between the physicians who treat us and patients who live chronic conditions.
There is a soft breeze drifting through morning light, a dove fluttering by, the industry of traffic humming in the distance, and an insistent woodpecker hammers out his intent.  There is the man of smiling brown eyes I found so long ago, and his gently hilarious approach to life.  There is the good cheer and by necessity, calm industry of my tall son who has learned to live with what could be perceived as a limiting condition.  There is the friendship of my son and his bride across the way, who share creative pursuits and forward goals, while contending with the onset of disease. There is the love of my daughter and her bridegroom, a few mountain ranges away, living creatively in different sunshine.  There is the knowledge that this daughter is stepping down from tall mountains today, choosing to live fully in the face of what could be only debilitating disease.  There is the story of the friend who helped her reach the second mountain peak. There is the story of old friends who remind me of who I have been, and new friends living similar conditions, who remind me who I can be.  There are unspoken words of wonder, and the shifting mystery I find in studying Tibetan Buddhism. There is the wonder of gazing skyward at night, of looking forward to winter evening walks under a sparkling velvet canopy. There is the at once cautious and bold doe who steps out of our woods, watching us watching her, glancing back for her fawn.
Sleepless nights and difficult mornings followed by trying hours can easily dictate the chronic condition.  I prefer to appreciate the IS.
There is the simple act of kindness that touches another soul. There is laughter shared, truths exchanged.  There is the possibility of possibility. Always.  There is IS.

Feelin’ Near as Faded as my Genes

Feelin’ good was good enough for me.
There was a time when feeling good wasn’t even a thought for our little family.  A little daughter with honey colored hair and eyes as blue as the Texas sunshine, and two adorable little boys with black hair who were often mistaken for twins.  Looking back at old family photos is poignant for anyone, but all the more so when your children are later stricken with chronic illness.  I am a strong, strong girl, and rarely dissolve into tears over the state of my children’s current health, but those photos.  That makes me break down.  To think of the could have, would have, should haves.  Yet I hold on to continued possibilities in life and the beauty of each new day.  We live in joy and laughter, and fresh air.
 
B was one year in the rheum.
 
My daughter grew up with Ankylosing Spondylitis from the age of seven, and years later my youngest son would be diagnosed first with Crohn’s Disease.  A long, emotional journey, and a string of specialists led us to a more firm and complete diagnosis of Ehlers-Danlos Type 1, Dysautonomia (POTS) and Dilated Cardiomyopathy. He is disabled at twenty-four and has had to redefine dreams, yet has shaped a beautiful life of value.  My middle son is also diagnosed with Ehlers-Danlos Type 1, but it is much milder with him.  I pray that this remains the case.
 
Fast forward a few years from the photo booth, and my common expression is:  busted flat in Baton Rouge, feelin’ near as faded as my genes.  What I would give for the genetics of health to be different, but the same genetics gave me the beautiful, generous, creative souls who form my family.
 
Janis Joplin sums up the raw emotion of Chronic Life:  

 
 
Each day we deal with the harsh realities and limitations of chronic illness, but still prefer to see it as chronic life.  Perception is everything.  I spend my days at home with my son, and we study, laugh uproariously, play cards and chess, watch movies, act goofy, meditate, straighten out world affairs, discuss history, and spend time in the fresh air.  On his lowest days, he tells me his his heart is tired, or that it feels like a “child’s heart.”  He writes and plays incredible acoustic guitar music and in the time he has been ill, has taught himself a fine command of the German language.  A new goal is to do remote work as a translator.  This is life, redefined.  
 
Still, chronic illness is a thief.  
 
Based on those early family photos, I’d trade all of my tomorrows for one single yesterday.