My life has been full of goodbyes. Friendships have gone wrong, lovers have left and people and animals I've loved have died. Those goodbyes are very final and can impact our lives in unexpected ways. New friendships are made, hearts can heal and time can turn grief into a dull ache with loving memories. My hardest goodbye has been to my health and it has altered who I am in many ways.
Many people with ALS lose an ability every few months. Imagine going from holding a glass of water one month and not being able to lift that glass a few months later. You have no time to adjust as the next ability begins to leave. ALS is an "orphan disease" because most ALS patients don't live long enough to go out and spread awareness or fund raise for research. One in one thousand will get ALS, but only 30,000 will be living with it at one time. There is little time for goodbyes.
I am in the 1% of people with ALS and that has given me time to adjust to my loss of abilities. My goodbye's are bittersweet but have filled me with appreciation for being given the gift of time to adjust. ALS has taken away one ability but with time has replaced it with another. I've developed strength, compassion and patience. I can reach for an object and drop it five times before I throw it ;) It's a balancing act I've learned over time but It never makes the goodbyes easy. I'm currently saying a farewell to driving. It is a big goodbye because it represents my independence, but I saw it coming and I'm interested in what new ability will replace it. Life as already set the timing in motion for good things to happen. Dave's retirement, our move and my blog will definitely make life more interesting.
I know how lucky I am in being able to grieve the loss of my health. "The ALS Advocacy Community" and "Patients Like Me" websites make my goodbye's less scary and help me become more prepared. I have learned enough in sixteen years to actually be able to contribute to ALS awareness in small ways and I hope to do much more. I just may have enough goodbyes to say hello to a cure.