Chronic Life Reality Show: An Amazing Journey

 
Chronic Life has all of the drama of reality TV. 
 
Inspired by my daughter’s Chronic Life live-tweet experiment for Health Central, I decided to have a little fun.  And perhaps illustrate what it’s like for those who are both patient and caregiver.  Just as anyone dealing with chronic illness, each day may take an unexpected direction.  

 

 

 

 

 

 

 

 

 

 

 

Next up on the Chronic Life Reality Show?
Win the Autoimmunity Idol.

Yogagraphy – The Art of Meditative Photography

I crept about the flowers and prairie grasses, seeking the beauty of morning light and sun angles, and had a realization.  Not only is nature photography utterly meditative for me, it requires careful, measured movements, stretches and positions that I wouldn’t normally attempt.  From this day forward, I shall practice the art of Yogagraphy.  

 

Sipping a cup of French Roast, I hear the morning song of Cardinals, Chickadees, and Doves.  Sunlight tops the towering oaks, so I trade slippers for a scrappy pair of Birkenstocks and wrap my crooked hands around my Canon camera.   Adjust the tripod, and step into the butterfly garden beneath the Crepe Myrtle, which is raining tiny, sparkling dew drops.  Maneuver just so to catch the magnificent backlight illuminating oranges, purples, and greens.   Adjust the tripod legs higher, no lower, then let the front leg dip.  Fussy ankles and toes forget to protest.   Crane the neck and dip the shoulders to find a bit of magic in the lens.  

 

As I meander, capturing the texture and structure of nature, I feel very little pain.  Creativity does that for me.  Since the onset of Rheumatoid Arthritis over two years ago, I find that complete absorption in a project nearly erases pain.  As soon as I stop the creative project, I am fully aware of the pain that is present.  Quite a powerful lesson.  Live in creativity, or train the mind to function in this way.

 

Creativity is different for each of us, as are physical abilities in the face of Rheumatoid Disease.  Each of us has some form of creative spirit, and I do not mean artistic ability.  What activity captivates you and makes you lose track of time?  Or lose track of pain levels?  
 
Yogagraphy provides my greatest moments of peace and pain relief.  I am distracted by Nature.

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.