Such a broad demographic of careers, experiences and the beauty of each soul and personality here. We are all connected by ALS, or via caregivers looking after PALS. From all corners of the world. I read each posting feeling sad how ALS has robbed so many of us of our planned futures. It forces us to reorganize our futures, with what ever time we have remaining. I hope triumphant times will trump out bleakness and adversity.
We each have our own story, interconnected with our family, friends, loved ones and acquaintances. I hope that I can continue to live my life with hope, grow further in love, and meet the increasing challenges I face with dignity.
I am very fortunate for the love of my wife and son who endear each hour of each day and their unwavering love and devotion sustain me.
I thank each and everyone of you for sharing your story. I am among so many amazing people in my life. Each and every one of you here is a beautiful soul. May each and every person here be blessed with love, passion and if possible, look at the future with hope. Perhaps tomorrow a breakthrough in treating this disease will be found.
Our challenges are many. I always remember a saying from the lead member of the Irish Rovers a few decades ago, it was something like "May you be in heaven a half hour before the devil knows your dead." I do hope that perhaps should heaven be real, that it will be that way for you and I.
I have written many times and struggled with what it means to "fight" this disease. I think it is completely different then "fighting" most other diseases. With those diseases you can "push through" with the hope of improvement or even cure. With ALS we have no such hope. I have always been a fighter and always thought I could beat anything, I was wrong, ALS cannot be beat.
So after living with this for as long as I have, I am at the place today, where I believe "fighting" ALS means to love and support those in your life with all that you have, put them first, work with whatever you have to make them as "happy" and content with what is going on with you as possible.
To that end I began this thread. We need to be reminded of who we are, that we are not defined by what happened and is happening to us with this disease. We are the people we have grown to be over the years of our experiences, challenges and successes.
I am not a person to be pitied because of ALS. I am instead a person who has achieved many thing in the years I have existed and who loves his wife and kids. I will try with whatever my life allows me to to continue to love them and use my life and its experiences to encourage them.
What a wonderful thread. You are absolutely right in that we need to spend more energy focusing on who we all are, rather than what this disease is doing. To that end I've been taking a break from social media and trying to refocus a bit. What a delight to peek in and find my friends without the Uncle Al mask.
I joined the Air Force after high school because I wanted to see the world and could not figure out how else to do it. My first job was as an aircraft mechanic working on F4s, then T37s and T38s. I was sent first to Spain, where I wandered the streets of Madrid and Toledo and should have seen more. I was sent to Italy where I visited Venice but never road a gondola. I was then sent to Mississippi, where I experienced my worst culture shock , but still cherish the memories.
I retrained into radio and TV broadcasting, a job which sent me to Alaska, Turkey, Japan, The Azores, San Antonio, Texas, and Virginia (Hampton Roads).
It was while running the radio and TV station in the Azores that I met my husband, my PALS. He likes to tell people that I was one of only two single women with enough rank who didn't work in his unit, and I won the coin toss. He battled to get out of an assignment to the White House so that we could explore our relationship.
Matt was a wild child, and several of his childhood buddies are either dead or in prison. He joined the AF after high school where he found the structure and clear path to achievement that allowed him to thrive, rather than get into trouble. He was selected for Chief Master Sergeant, the highest enlisted rank, in 10 years. It can't be done faster. He saved my boys and turned them into wonderful men. He shared his girls with me, giving me the daughters that I never bore.
Upon my retirement I went back to school, started at the local community college. I LOVED it. Matt encouraged me to apply to William & Mary to finish my undergrad. I did, and loved the experience. He finished his undergrad during his last few years in the AF, even taking online classes while recovering from multiple shoulder surgeries. After retirement he finished his MBA and started in on a long line of certifications in auditing and computer management (he studied at night long after I was asleep) that, combined with a long career managing computer centers landed him jobs that teenage boy could never have dreamed of. Me, I went into teaching high school English--a job that was more demanding than anything I'd ever done before. After five years of that I stopped to become fulltime caretaker for my mom who broke her hip, has the use of only one arm, and, as we discovered once we got her home with us. has Parkinson's.
Then came ALS. A year in my sister swooped in and took mom back to California to care for her. We had moved into our lake house to accomodate mom, and have modified it for my darling who continued to work from home until last week when he finally went out on disability for ALS. We are in our retirement home early and have just received a pool lift to install on the dock so that hubby can get back into the water.
I saw much of the world and found the love of my life in the middle of the Atlantic Ocean. We've worked hard and been fortunate and made good decisions. Right now we are planning his next annual trip to Colorado (this will be the second year for me--ALS got me that much I've told him that I'll take him as long as he can go. I just try to treat it like everything else I've done--jump into the deep end and paddle. Research just enough to be prepared but not enough to be discouraged. Now I'll stop because we're out of the "before" part...