Changing My Perspective Gave Me My Life Back
Columnist Lisa Weber is living life to the fullest, thanks to scleroderma
There’s always a dark cloud following me around. It’s the reminder that scleroderma has my life clock ticking a little faster.
Most of the healthy people I know don’t quite understand this internal struggle. I can’t even count how many times I’ve heard, “Nobody knows how long they have to live. We could all die tomorrow!”
But it’s not the same for me anymore.
The odds are not in my favor
Imagine we’re each given a bowl with 99 white marbles and one red marble. Every year, we have to reach in blindfolded and grab a marble. If we choose white, we live another year. But if we choose red, that’s the end of the line for us on earth.
The odds may or may not be better for healthy people, but living with scleroderma is like swapping out 20 to 40 white marbles for red ones. Those are just the risks I know about. Imagine reaching into my bowl!
For example, having scarred lungs increases my chances of experiencing complications from things like the flu or pneumonia. And as I get older, the damage increases, along with those risks. It’s unlikely I can reach my goal of living past 80, but I’m praying I get lucky and keep pulling out those white marbles!
Worrying doesn’t give me extra time
With each damaged organ, life gets a bit more delicate. It’s hard for me not to think about this. When my husband and I discuss our retirement plans, I have to pause and control my negative thoughts. I typically say a quick prayer and repeat this sentence quietly in my head: “I’m OK today. I am here. I have time.”
I refuse to waste moments worrying about how much time I have left. That’s a dark place to live. And it only robs me of the life I have today.
Whether I believe it or not, replacing those thoughts with positive ones helps me focus on living. And the longer I practice, the easier and more believable it gets. I’m coming up on my ninth year of living with scleroderma, and that dark storm cloud has finally moved into the distance. I have to look extremely hard to find it now, but it took a lot of effort to push it so far away.
My life is full and beautiful again
I’ve worked hard to turn my diagnosis into a gift. I no longer push things off for the future. My plans now zero in on what will make me happy today. There’s no more waiting for vacations to have fun or saying no to an ice cream dinner with my kids. I may have physical limitations, but I’m living more now than when I was healthy.
It’s true that none of us knows when our time will be up. But we all know it’s not this very moment. Don’t let that dark cloud take over the days you have left. Do what makes you happy and live while you can.
And if you’re having a hard time explaining this fear, try using the bowl-with-marbles metaphor. Sometimes people just need concrete examples.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
Hi Lisa...I enjoy your columns. Do you have pain with your scleroderma ? If so, how do you do so much? Also, I have a lot of fatigue and have a hard time with it. I'm also 73 years old, so maybe that has something to do with it. I hope you can respond. I admire you so much. Thanks!
This is a great column and an excellent way to explain our situation. Thank you!
"The day after Thanksgiving" always marks a new year of being "past" my expiration date. I was diagnosed in 2000 and given 12 years. Now when I see my dermatologist; who is married to my (then) rheumatologist; I say "BooYah---tell Dr. Kazi that I am STILL here!!" Then I laugh and Dr. Costner (Kazi's dermatologist wife) laughs with me because we have known each other that long. 22 years. I can honestly say, "things can always be worse" bc they can. My lungs are now affected. I got breast cancer, after that I got Covid and after than my 88-year old father died who was living with me bc I was his care-giver in addition to being the daughter. I was living the "sandwich generation" life. Dad's been gone now for 4 months and boy, it's quiet here at home. It's time for me to jump back into the "game of Ssc". I was President of the TX Chapter and Executive Director back in the day. I remember loving NPO work and growing the TX Chapter from 4 strong support groups to 12; then it's in prime, hosting the 2014 Texas SF National Conference at the Gaylord Texas Hotel (where our beloved Dallas Cowboys stay overnight before the game). The day after the conference, I was let go. No more anything. That was a shock but "it is what it is" was what I was told by the national office. It was truly a blessing in disguise bc Bob Saget (Full House/Funnniest Home Videos) found me and with his help, I flew into Ssc gala work. His "Cool Comedy, Hot Cuisine" brought me to the forefront of not just fundraising and awareness, but F/R with celebrities! Bob wanted me to invite fellow Ssc patients to share a "table" with me. Why? Because he wanted the benefactors to meet and SEE what a patient looked like. As you know, there are many faces of scleroderma. Bob's sister, Gay had died young and he was hell-bent on finding a cure. Sadly, Bob died earlier this year but his legacy lives on and his wife has picked up the cause to carry on. As did his "Full House" cast/crew. I relished in being able to invite fellow patients from all over the country who were able to fly in a have a "seat at the table". Remember, it cost $1k a plate to come to the charity event; you do the math. Bob is and was the most generous man I ever met in Ssc world. Until this past October when Bob's friend, Saville Kellner invited me to his Scleroderma Sprint event. That one first time F/R charity netted $1.4M with proceeds still coming in....Unbelieveable!! All this is say, when God closes a door; He has a bigger and yes, better one waiting. Through Bob Saget, I met very good celebrity people like: Queen Latifah (her mother died a few years ago from Ssc/ILD. Queen did an excellent documentary on ILD after her death.); Bill Bellamy (his MinL also passed from Ssc about the same time Queen's mother did. Both Bill and wife, Kristen are very good, good celebrity people. I had the pleasure of seeing them at Bob and Saville's events; Susan Feniger (Hot Tamale Top Chef), she has the biggest heart ever; most recently, at Saville's Ssc Sprint & Gala, I met several of the Top Chefs and I promise you, I was ready to die and go to heaven! Please go to my FB page and look at all the pics---I'm SO very proud of this event and want to take it national!! If we as patients have the will and want to; WE CAN do it! Maybe we will have a cure in our lifetime or make great strides for someone else!
The moral of this story; you never ever know what's in your future. Keep the "stinkin' thinking" from changing your attitude and the essence of who you are deep inside; bc everyone is essentially good. In Cindi world, anyway. Open yourself up to going, doing whatever even on those weak days when all you can do is "sit" and smile. Smiling doesn't expel much energy. So SMILE. It truly turns the world upside down. The sun will shine again tomorrow so you are entitled to a "bad" day. But not too many, bc then you know where that leads...the rabbit hole is not a very good place to go. Please think "happy thoughts" and know you are blessed every morning that you wake up and take one breath. God is good. All the time. Take care of you. Much aloha Ssc world!