By Lorene Lee
Living with ALS since 2010
This is the fifth in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Lorene composed this message using assistive communication technology with a visual-tracking system. She typed the words, one letter at a time, using her eyes.
In my first attempt to write this letter to you, I had written a few paragraphs on my marriage and life. But later, I got to thinking it sounded just like any other couple, going through the usual everyday problems. The next morning, I was going to change everything. When I got to my device, it was erased. What happened is beyond me. This is a problem I sometimes face with this computer. So I will begin again with what I really want to express.
When I first met Tony in 1982, he really helped me to blossom (he does not acknowledge it- but it is the truth)! My husband Tony and I have been married for 32 years and raised our two children, Andrea and Brian, together. Our home is my sanctuary and I am happy that we have had so many happy memories here. Like when my daughter came tearing down the sidewalk in her Big Wheel, at age 5. And when our son got in serious trouble around age 6, with tears flowing, he sobbed and said, “Don’t kick me out! I need a place to live, too!”.
Fast forward to getting them ready for prom nights and having so many family and friend gatherings. There is a lot of heart around my house.
When I was first diagnosed with ALS in 2010, I knew it was going to be serious because of all the different tests I took. So, in a sense, I was prepared for bad news. It was Tony that took it so hard. He had lost both his sister and his father earlier that same year, and we were also caring for his 16 year-old niece. It was an unbelievable time in our story.
By 2012, I had lost my ability to speak and now rely on a speech-generating device with an eye-tracking system to communicate.
I used to say that I am from Venus, and Tony says he isn’t from Mars, he is from Pluto (hahaha)! But after many years of disagreements, misunderstandings, and stupid fights, our bond is stronger than ever. I won’t let ALS come between us. No way!
This disease is not for the faint of heart. It’s like we just got past the honeymoon stage and have to start all over, and you are on a roller coaster, with a cliff up ahead.
I am one of the “lucky” ones living with ALS, who has surpassed the usual five-year survival rate. ALS is a terrible, awful, deadly disease. Tough, sad, ugly, heartbreaking- yes. A learning experience- YES.
I have personally learned – big time – that hate, despair, loneliness, misunderstanding, and sorrow can be changed by opening your heart through love. Even with acceptance of this illness and all of its challenges, I am STILL learning. With all the challenges of living with ALS, giving my loved ones their due is often fallen by the wayside, especially saying how much deep gratitude and appreciation I feel.
With all the love that I have received, from my family, friends, and caregivers, I am in my (almost )10th year with the disease. And Tony has been by me from day one. That speaks volumes. My hope for the future is to continue fighting ALS for me and others, the best I can, and to continue making more happy memories with my family, my friends, and my beautiful children, who are now adults.
I truly know now that love can change everything. With that said, please accept my love, especially for those with ALS, I understand what your facing. You are not alone. No, you are NOT! You can find hope and endless support from your dedicated medical team at your ALS clinic, your family and friends, and even from strangers.
You will also find it from The ALS Association, through their support groups, their lending closet, and through their dedicated, compassionate, and tireless staff. Since 2012, my family and I have been very active in our Chapter’s Walk to Defeat ALS events. Working together, as just everyday people, we have raised nearly $150,000 in support of their mission and vision!
So, please – let LOVE IN. The people you will meet will be extraordinary, caring, and awesome.
In closing, I want to thank and express my deepest love to each person that I have met along the way in my ALS journey. And I send my love today to YOU and EVERYONE in our ALS community.
Love always…. Always love, XXX- Lorene
As part of a new nationwide campaign, The ALS Association challenges you to “Voice Your Love” and help us raise awareness about ALS and one of its most devastating impacts: the loss of a person’s ability to speak. Learn more at voiceyourlove.org.