On the Journey Together

What started as back pain that became so severe that Bill had multiple visits to the ER, where he was told by health professionals that he is simply too heavy, which turned out to be a mass near his spine that resulted in T9 and T10 incomplete paralysis. The couple had already journeyed through cancer since 2021, but the challenges of an SCI were a brand new territory that they were not prepared for.

Sharon describes the journey as an emotional roller coaster, where one doctor even deemed Bill terminal and advised him to go home and get his affairs in order. “We fired that doctor and asked for a new one. We simply refused to take his advice. My husband is now in remission,” recalls Sharon. A fierce advocate for her husband, Sharon was experiencing mounting anger and often wonders if Bill would have had an SCI had he been seen just a little bit earlier. “I have now managed the anger and I am in the acceptance stage,” she says.

Having retired just months before Bill’s SCI, Sharon stepped into the role of his caregiver. “I can’t imagine anyone else in this role,” she shares. “When he came home, it was a real eye-opener because I didn’t understand the intensity of it all and how much preparation and care is needed. It was overwhelming and exhausting. But I knew we would figure it out.”

“All of my self-care has stemmed from Family Connections. It has helped me accept my role as a caregiver and find new ways to manage the physical stress of it like shoulder pain.”

– Sharon Russell

During Bill’s time at Parkwood Rehab, he was visited by SCIO Peer Program Coordinator Julie Watson. Sharon recalls that the tremendous help and guidance received from Julie was fantastic and helped paved the way forward, not just for Bill, but for Sharon as well. Julie told her about Family Connections at SCIO and Sharon eventually took part in the program, which would prove to be healing and cathartic in its unique way.

“That’s the one program I would highly recommend to anybody when they’re in the first month into a caregiver role,” she shares. “They have a monthly check-in after the program and they know that things get better. I love that the group is small, so you participate. In all other programs, you’re just put on mute and you’re forced to listen, but here, it’s the participation that makes it so impactful. You get to explain your story and listen to others.”

Sharon touches on the spinal cord injury expertise. “It’s specific to SCI, so the people participating are going through the same things you are. Bowel and bladder care for instance; you speak the same language and it makes such a difference. For the first time, I didn’t feel so alone. You never really hear about SCI. I was in fight or flight mode. I’ve never experienced anything like this – I never realized how heavy a paralyzed leg is for example. But the program helped me immensely.”

Sharon recalls that although committing to eight classes can feel like a challenge, it was the best decision she made. “It’s easy to skip a session if your camera is off and you’re muted, but because this program is designed differently, you gain a lot out of it. It trained me for future courses like mindfulness and meditation. All of my self-care has stemmed from Family Connections. It has helped me accept my role as a caregiver and find new ways to manage the physical stress of it like shoulder pain and strain.”

For Sharon, the Family Connections program has been vital both to helping her cope with her husband’s SCI and in managing her role as caregiver, while taking care of her mental health as well.

“I schedule my self-care and take it very seriously. There are specific meditations I plan to do ahead of time along with light exercises,” she shares.

Sharon is grateful for the services that SCIO offers and credits Family Connections for helping her move forward and continue to support her husband. “We are a great team. There are so many resources out there and for us, it’s a new world. But if you open yourself up to it, it’s a better world that is more inclusive, compassionate and forgiving. We are better people because we’ve opened up to what’s out there. Our passion is making a difference now and every day gets better.”

Sharon smiles “Bill’s strength helps me every day. If he sees the light at the end of the tunnel, I’m there with him all the way.”