Sunday Scribbling - "Goodbyes"
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.
27 comments:
Oh, sweetie - may that cure come soon! Meanwhile, keep on holding that sword up high as you can and soldiering on - my brave warrior friend. We're all cheering you on. Sending many ((((HUGS))))) to a favorite hero of mine - You.
Tammy, I love the way you say hello to life everyday. I think you have some very important work left to do, and so much to give. I hoping we all get the chance to say hello to a cure along with you!
This was beautiful, inspirational and difficult all at the same time. As you know, I lost the abilitly to drive and the independence that goes with it a year and a half into ALS. It is true that with ALS as in life, for everything you loose something is gained. The goodbys are heartbreaking, but with strength and patience, new doors open.
By the way, I usually throw after the third drop. =)
You are my inspiration, always.
Love,
Spike
I join my wishes with yours, Tammy. You have done so well, in no small part due to your optimism. Let's hope the cure somes soon.
I'm sorry to hear you will not be able to drive soon. But you are so right that when Dave retires and you are in your beautiful new home, you will have the world at your fingertips.
You write with such strength and insight; you're an inspiration to me. Can't wait to hear about your new home!
Tammy,
Your positive attitude is incredible. You are delightful to get to know.
rel
Your words are so powerful ... and they make me appreciate the goodbyes I've expereienced, because that means we're still here, still experiencing, and some goodbyes lead to hellos.
Praying for a cure and your continued strength, compassion and patience. Much peace & love, JP
Your journey and your communication about this journey have done a lot for ALS. I am now one more person who can begin to try to understand what happens in this disease. Your writing talent and your attitude are priceless.
signed Tabor
You have such important work still to do. That is why God gave you such an amazing spirit! An dI feel blessed blessed blessed to know you, and call you friend.
You are my favorite kind of person. Point blank.
((love to you!!))
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Powerful post Tammy
Thanks for sharing
you are the strongest most inspiring woman i 'know'. xo
Tammy, you are lucky to have the kind of attitude and courage you do. But your blog readers, your friends and family, everyone who has been touched by you are so lucky, too! I just know you will contribute amazing knowledge, compassion and understanding -- more than you already have. No matter what happens you have made a huge difference in the world. I hope you can say hello to a cure very soon.
love ((((((((((((you)))))))))
tammy, you are something else. this post is so damn inspiring and true that it stops me cold, reminding me with both gratitude and sadness about the yings and yangs of our lives.
fortunately, it's all about love, as you know. and in that department you are full-up.
i really admire you. i know quite abit about disabilities and have been witness to courage and perseverance so many times. so i know what i'm talking about: you, my friend, are one remarkable woman. i'm glad to be your blog friend!!!
It is awful that ALS has caused you to lose the ability to do things that you have been able to do. Fortunately, you are a warrior, and it has not been able to take away from us meeting! My friends live in my computer too--because I have you!:)
Novel
I don't know what lies in my future by any means, but should I fall into the hands of disease, I hope that I could face mine with the courage and grace that you do everyday. Even if you're not "doing something" at the moment, your words show your character. The Warrior is also a hero.
I'm here because of a very kind comment you left on my blog friend, Regina's, post. (I also saw your name on Sunday Scribblings, which I joined 2 wks ago.)
I haven't written in blogland about health-related goodbyes. Having also lost independence in areas (but not due to ALS), I vigorously shake my head, wishing that "no, no, no!) could reverse the latest driving one for you. However, you embrace your life with "yes, yes, yes!" That's beyond survival, it's admirable and strong.
Tammy, you did so not only with excellent and open writing, but with courage and optimism that definitely shows you're a warrior.
Count me in, for saying "hello" to you and wishing for a cure so you and so many others with ALS can say goodbye to. Meanwhile, your attitude about life every single day, one day at a time, is one we all can learn from.
Tammy, you continually amaze me! You accept life, the difficulties and changes with such grace. I stand with you and wanting to say hello for a cure!
Thank you for such an encouraging and inspirational post!
Bonnie
Visiting your blog is always a bright point in my day. With all the goodbyes you have said, it seems you have become more and more ready to welcome and say hello to all us strangers who meet here, who witness and wish you well. You are one of my great heros! Blessings to you.
I like what you write here. I will be back for more. Thanks for visiting me. You are welcome anytime. Instead of goodbye I say hello to you..:D
{{{{{Tammy}}}}} You are an inspiration to so many people. I hope you realize what a shining light you are in the world.
Tammy - your outlook is so positive. Always waiting for the new door, the new hello is inspiring. I hope that one day there will be a cure for ALS. Hugs to you.
Tammy!!!! I cannot wait until you get up here to this neck of the woods!!!!!! I really am excited!!!! :-)
Hi monkey, wouldnt a cure be fantastic? I cannot believe how brave and honest you are. I am so excited for you new life with Dave. Big love to you my warrior.
Great post babe, I loved every word of it and I think it makes us all think of the goodbyes we will all face one day.Your spirit and perserverence are a inspiration to all who know you.Love Dave
I think it's all been said. You are a light in all our lives!
I love you.
Nikki
I like the hello in this statement of goodbyes. Thank you for sharing your story.
~GoGo
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