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This is my ALS: A Love Story. It’s about my wife, Cara.
Cara and I met in 2002. Before we had kids, I dragged her on all sorts of crazy trips. Regular jaunts to Mexico, Nicaragua, Argentina, Europe… Small towns, hostels, huts on the beach, chicken buses, the works.
We got married in 2006 and knew we would have a lifetime of adventures ahead of us. I finally finished grad school and we moved to Columbia, SC to start our family. Mary Adair and James were born and a new chapter began. Then I somehow managed to get diagnosed with ALS in 2013. Cara was with me in the doctor’s office when we got the news. The diagnosis is hers as much as it is mine.
She pushes our family forward in spite of everything that ALS entails. We find new ways for the four of us to have adventures. For now, it means finding ones that are wheelchair accessible. Even that will change in the near future. We moved to Atlanta so we were somewhere where she would always have career options. We got season tickets to Atlanta United so the four of us had something else special to share. She found us a Disney cruise on to go on, and then jumped at the chance to tack on a US national team game on one end. One of the unexpected pleasures of these adventures is us for staying in the same room. Even if it means lights out at eight, waking up altogether is a special piece of the experience.
But in many ways, these discrete adventures are the easy part. You do your best to plan ahead and then roll the dice hoping that things work out. The hard part is the day-to-day. The physical workload that comes with one spouse being physically incapacitated. The mental stress of plotting a career and planning for your family’s future when you know how difficult the coming years will be. Knowing what the four of us will go through. Whether my progression continues to be steady but slow, or if it changes, the next five or 10 years will be impossibly difficult for each of us. She is no superhero. Nothing about this is easy or is something she is naturally programmed to do. She just does it. That is what’s required for our family. That is what it takes for us to still be focused on our little adventures.
When we were dating and she was in Boston and I was in North Carolina, we relished the idea of finally being in the same place and having simple moments on the couch. ALS is not easy on any of us. It is not fair. It only gets harder from here. But I still cherish those times. The moments to ourselves. I cherish our partnership. I cherish our relationship.
And through it all, through trips, through kids, through moves, through ALS, through adventures, she is my wife. I love her more and more each day.
This is my ALS: A Love Story. It’s about my mom, Lynda Warren.
The hardest part of my mom having ALS was knowing that she had planned to spend her retirement chasing her grandkids. She was diagnosed two weeks before her oldest two graduated from high school. She was able to see that, be a part of that celebration, but then it all seemed to progress so quickly.
Within two months she was confined to her bed or her (uncomfortable) wheelchair.
I was sad and felt cheated — for her and her grandkids, her greatest joy.
But then, we all decided we wouldn’t give our final days to ALS. We would LOVE every day. By doing so, our family would WIN.
If love alone could cure ALS, no one else would ever have to suffer its cruelty. But if we love deeply and freely, we take away the power of ALS and instead let it empower us.
This is our ALS: A Love Story. It’s about us, my husband, O.J. And, it’s about my wife, Chanda.
From Chanda:
O.J. and I met in 1989; we married five years later. We love to laugh and have our inside jokes as husband and wife.
When I first went to visit him in Canada, he was playing for the BC Lions. To this day, that song — (I’ve Had) The Time of My Life – still plays in my mind when I think of that trip, and it continues to be “our song!” Canada was so beautiful. Never mind that he picked me up at the airport with the gas tank on “E” – we were literally on fumes. It was snowing and cold, but he was determined to get back across the Canadian border to get gas for the car. We had no money, we did nothing exciting on that trip, but it was still one of the very best trips together we have ever taken.
To this day, O.J. puts up with me. He lets me be me, whether he agrees with me or not. And he’s OK with that. He always has my back.
O.J. bought me a stuffed monkey last year that dances and it is my absolute favorite Valentine’s gift – it’s my favorite gift ever. It plays Bruno Mars’ Locked Out of Heaven and I’m going to get it out for every Valentine’s Day because I love it that much.
ALS has not stopped the love for us. Love is still love. It doesn’t stop our marriage, from honoring our vows, it also doesn’t stop us from disagreeing! It doesn’t stop us from being married, ALS or not, we are husband and wife.
From O.J.:
Knowing that our love is … being committed to each other regardless of whether we feel like it, helps me out immensely! To know that Chanda has my back gives me the courage to fight to make the most out of every day. Her strength is incredible.
There are always those little moments when we notice something at the same time, look at each other and just bust out laughing! The little inside jokes bring levity to daily life.
Though ALS has taken so much from us physically, the bond between Chanda and me is still strong because God is in the center of our marriage. That is what keeps us going day to day.
O.J. and Chanda Brigance are Co-Founders of the Brigance Brigade Foundation. Their mission is to equip, encourage, and empower people living with ALS and their families. Brigance Brigade Foundation compliments what other ALS organizations are doing, providing funding for medical equipment and respite care not covered by other resources. Its 5th Annual 5.7K Championship Event is Sunday, April 29th and there are virtual participation options – If you’re reading this, they challenge YOU to participate in the 5.7K Championship Event and support the Brigance Brigade Foundation’s fight against ALS.
www.brigancebrigade.org
www.facebook.com/brigancebrigade
Like a lot of busy moms, I was never much of a “plopper.” There was always something I needed to do, somewhere to go, somebody who needed something. What I needed was more hours in the day!
In 2015, I was diagnosed with ALS. Among many emotions and fears that surfaced, one of the most difficult for me involved our family’s annual one-week trip to a rustic camp in California’s beautiful Trinity Alps. I have 35 years of memories of my sons swimming in the river, rafting, playing horseshoes, cards, and ping pong, riding bikes and sitting around the campfire, performing in the “talent” show, and all the special bonds that come from a week in the woods with family and dear friends.
At first, I wondered if I could go at all. I hated the thought of being a burden, or getting in the way of the fun. My husband, Paul, and my boys Marc, Luc, and Dan immediately responded: not going is not an option. They figured out what I might need. Paul arranged for me to have an ATV so I could move around camp with confidence. We brought some special grab bars for our cabin and simple ramps so I wouldn’t have to worry about stairs. They then all did that thing that cannot be easily described: They paid attention, and they made anything that was difficult for me easier by just lending a kind hand.
But last year one cherished Trinity activity looked like it was heading for my “unlikely” list: There is a wonderful swimming hole where several families who come every year for the same week, bring the largest flotation crafts they can find (last year’s biggest was 16’ X 10’ with built-in loungers and ice chest). When the sun starts to dip every afternoon, a group of us moms launch a floating cocktail party. We call it “party island.” It’s an hour or two of sun, friends, laughs, and no worries. It’s the definition of a simple pleasure. But it involves, for a person with ALS, a not-so-simple climb down a steep gravel path and then rocky walk to the water, and then boarding the giant raft with some degree of . . . well, I’m not sure “grace” describes even the most able-bodied person’s boarding style. And last summer, that was not me, and did I mention there were at least a couple of dozen people lounging on the shore watching all this?
Undeterred, my husband and sons decided I was not going to miss out. I swallowed all pride and let the boys carry me down the rocky hill and across the beach, and then they plopped me on the inflatable island. Post-plop, I was exactly where I wanted to be: floating with cherished girlfriends, remembering and laughing at all the memories of chasing toddlers around the shallows, worrying about sunscreen and naps and poison oak.
Now, my grown young men are taking care of me. It’s not easy. But what a circle. What a life. What a lucky mom I am to have my three sons, my husband, and an army of loving, supportive friends and family who make sure I continue to enjoy the life I so love, even with ALS.
As Mothers Day approaches, I feel so much gratitude for my sons, my family, and my life. I have learned that sometimes the secret to a special burst of happiness can be to just give in . . . and plop.
– Nancy Sallaberry
Dear Friends,
This month I am honored to write you this email on behalf of the Augie’s Quest Leadership Council. I am a husband, a veteran, a father of three small boys, and in April of 2014 I was diagnosed with ALS. I was only 30 years old.
I mentioned in my introduction that I am a veteran because it is extremely relevant in the battle against ALS. Numerous studies have indicated that military veterans are at least two times more likely to develop ALS, than their civilian counterparts. While we still don’t understand the reason for the higher prevalence among service members and veterans, the cost and toll ALS takes — especially among this community — is devastating. For example,
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Since 2001, more veterans have been casualties of ALS, diagnosed with the disease, than overall casualties from the wars in Iraq and Afghanistan combined.
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The cost in ALS care to the U.S. taxpayers reaches nearly $450 million annually. The cost to the children, spouses and friends of those affected by ALS cannot be quantified in dollars and cents.
