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Brother and Sister: Lessons Learned From My Brother Living With MS

By Lori Rubin
April 10, 2023

“This is the deck of cards I was dealt, and I’m going to play it until I win.” 

Sisters and brothers are the truest, purest forms of love, family and friendship, knowing when to hold you and when to challenge you, but always being a part of you. 

I was only 18 months old when my brother Steven was born. I shared my babyhood with him. We walked to school together, played together and grew up by each other’s side. He had a remarkable and unstoppable way of making me laugh uncontrollably. Steven was diagnosed with MS at the age of 33. The first 10 years or so, his disease was invisible. He went from being unsteady on his feet and falling often to walking with a cane, then a walker and then to a motorized wheelchair. Each step of the way was painful to watch.

Because of his disease, Steven suffered a tough and challenging life. It pained me to see his disease progress as it did, but he never felt sorry or pity for himself. His seemingly calm and peaceful approach to the aspects of his life made others feel at ease and calm about his challenges – me included.

Unfortunately, my baby brother passed away unexpectedly in late 2022 at the age of 67. To say my family and I are heartbroken and devastated is an understatement. Steven left us much too soon, but he left us with an incredible model of how to live our lives – and some of these lessons I want to share with you.

Be an Unstoppable Parent

Steven was a great parent from day one, even with a 2-year-old daughter of his future wife, and at that point, his MS hadn’t progressed yet. As his kids grew older and his MS progressed, it was almost like a role reversal, and they were there for him to help with day-to-day tasks. But he showed me that parenting has so much more to do with what you can provide your kids emotionally than what you can do for them physically. He was an amazing father. He showered his kids with attention and care through constant love and devotion. He supported their dreams and made sure each of them felt valued and loved – these are things MS can’t prevent. MS didn’t stop him from being a parent, and a great one at that.

Face the World with Bravery

Steven was brave, courageous and never, ever complained about his challenging life. There were those terrifying times during each of his exacerbations when he was paralyzed and hospitalized. He held his head up high and took his life in stride always with a smile on his face and an attitude that was simply amazing. One time, as we were discussing his challenging life, he said to me: “This is the deck of cards I was dealt, and I’m going to play it until I win.” I was blown away and touched at hearing that from him. I try and adapt this attitude as much as I can in my own experiences.  It has helped me deal with my own negative thoughts toward life – if he can be so positive, then I can be too.

Live Life Beyond Yourself

Steven was a philosophical person – he dug deep and was conscious of the universe. He was really into saving the planet and was concerned about global climate change. He cared more for his family than himself. While an exacerbation left him in the hospital, our mother unfortunately passed away during that time. He still showed up in the way he could by watching the funeral from a laptop from his hospital bed.  It didn’t matter what was going on with his MS, Steven persevered and saw his life beyond his MS. He lived for his family and making the world a better place. When Steven passed away, he requested that his body be donated to MS research. It doesn’t get more selfless than that.

My brother was there to help me be confident when I was timid, to be strong when I was weak and to be fearless when I was scared. I thank Steven for showing me the way of life. I thank him for showing me the way of love. I will continue to shine his light forever.

Lori Rubin

Lori Rubin is retired from the healthcare industry and enjoys having time to do what she loves, like cooking, singing, travel and family. She has two adorable dogs that make her happy and friends that provide a great support system. Lori believes that the more positive vibes you put out there, the more the universe will give back in return.

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