ch..ch..ch...changes

living with ataxia means learning to live with loss...........the gradual loss of balance is probably the biggest adjustment. i noticed, maybe 10 years ago, that i stumbled when i attempted to find the bathroom in the dark. i had difficulty going for my walks, which i loved, at dusk. i didn't exactly trip but i wobbled. walking on patterned carpet (think hotel lobbies and airport terminals) required thought. on a holiday to colorado, while down in a silver mine on a tour, the lights were turned off and i was shrouded in total darkness. i immediately fell over. i knew then that it wasn't a 'deteriorating vision' issue...so i met with a neurologist. my sister, cheryl, had already been diagnosed with 'cerebellum degeneration' (spino-cerebellar ataxia) so i was familiar with the disease. but i was stunned to receive the same diagnosis.

i continued to work. i transferred to san antonio, lived in an apartment on the 2nd floor, drove my 'standard' truck through city traffic. for the next couple of years, while i knew i had ataxia, ataxia played a minor roll in my life. when i was tired, my balance was worse. and i used a cane when i meandered along the river walk or shopped in the old market area. but i had a couple of painful falls and i was increasingly exhausted by ten hour work days and, eventually i retired with a disability.

the balance deterioration seemed to pick up speed. the cane became crucial for any outside activity but i progressed to a rolling walker for shopping and walking outdoors. i can still travel, i flew from new england to alaska over the holidays, but i needed the walker to maneuver terminals and a few days to recover from the trip.  i notice now that walking indoors, i am more unstable.  i catch myself using the wall for balance. i blame the carpeting. the fit of my shoes. anything but what it really is...the progress of the disease.

i am happiest when doing things that ataxia has yet to invade. cooking (although my fumbling around the oven can result in some painful burns), gardening (i don't have complete freedom but i can still enjoy my time outdoors), painting (the loss of manual dexterity has altered my style but not my love of art) and writing (i have moments of 'brain freeze' but that could be age-related). i cope the best when i am allowed to forget that i have ataxia. the peace i feel when savoring those bits of normalcy in my life help me cope with all the changes. and i am blessed. i am surrounded by love and sustained by faith. life may be different but life is still good.