Name: Pati Milewski

City, State: Olympia, Washington

Age: I am 51. and counting!

Family:
Mardi is my life partner and best friend.  We have wonderful and supportive family members in our life.  Our family is actively in our life anytime we need them, making new memories, consoling and consulting, guiding and listening.  They are unbelievable and we cherish them.

Hobbies/Interests: Painting ceramics has taken a backseat to charcoal sketching now.  I take care of Coco our pet cat, keep in touch with my family, friends and support group members.  I continue the race of flossing my teeth and finishing before all of my fingers are in spasms, it’s a game.

Date of ALS diagnosis: 1999

Life before ALS: I was healthy.  I lived with love in my life, I worked at a job I enjoyed, had passion for travel and new experiences.  I volunteered in public service to the community and dreamed of a long life and the possibilities it promised.  I planned for us to pay off our home in 30 years when I retired.  Life was lived well.

Life with ALS: I live washed over in love and every day awake to discover what is the same and what is lost.  The bar of expectations continuously changes, we adjust to where we are led, I fight to remain where I was but eventually adapt mind to my body.  I don’t consider myself “sick” I am actually quite healthy but I have ALS and all that comes with it is what intrudes on us so rudely.  My job now is to live with quality and spread awareness.  My passion is family, friends and keeping the best possible state of mind I can.  Some days are lost to the affects of the disease others are the “new normal” and purposeful.  We plan to live our life with ALS as part of a journey but continue to support each other in growing as strong independent individuals in our remaining time together.

How has ALS brought new significance to your life: The success I have had in my life, those exceptional proud moments of accomplishment now pale to the realization that the next great accomplishment is to boldly walk the remaining life we have and plan for the inevitable.  We take care to plan for the pain of the survivor of our life by making all final arraignments for us both, from cremation to the cutting and placement of our headstone.  We continue to make new memories and we are not afraid to talk, just talk……about everyday life, death, but most often about our wonderful journey of 18 years…………and counting!