Peer & Family Support Spotlight: ​Nickala McNichols - Reeve Foundation

Nickala (Nikki) McNichols sees caregiving as a lifelong journey.

“It’s part of who you are,” says McNichols. “I see my role as part encouragement, part cheerleader and part raw knowledge.”

McNichols’ caregiving journey started 40 years ago, when her late husband, Gary, sustained a C6-7 complete spinal cord injury in a 1982 swimming accident.

“I remember the intensive care nurse in the hospital sharing a two-paragraph description with us about life as a quadriplegic. That’s all the information we got. Once we got to rehab, we learned quite a bit more, but we still had to figure out a lot on our own,” says McNichols, who was Gary’s sole caregiver. “There was a lot of trial and error.”

McNichols looked for opportunities to learn as much as she could to help her husband. With no internet in the 1980s, she would research at a couple of medical libraries and write letters to different medical supply companies to ask for samples of products to try.

“I did a lot of work myself to find ways to make life easier and more comfortable, and I made a couple of good discoveries along the way,” says McNichols, who ended up introducing a then new type of self-adhesive catheter to Gary’s rehab staff.

“Yet even with the advent of the internet and as new resources became available, there was always a wrinkle that needed to be ironed out,” says McNichols. “I was always learning and exploring to find a better way – always lots of problem-solving.”

Gary was a financial manager for an energy company, and the couple enjoyed a busy and full life, traveling to Germany, France, England, Bermuda and across the United States for his work. In 2019, Gray passed away after more than 50 years of marriage, but McNichols’ passion for caregiving continued.

“Two years ago, during a routine office visit, my primary care doctor said it was a shame to have all my knowledge from 38 years as a spinal cord injury caregiver go to waste. He told me that I am the best in the business,” says McNichols. “It was serendipitous.”

Shortly after, McNichols joined the Christopher & Dana Reeve Foundation Peer & Family Support Program. She has mentored three women caregivers to date.

“One of my motivations is to make it easier for others,” says McNichols. “When I initially reach out, I say, ‘you are going to need help, and when you do, give me a call.’ I try to help them take little bites because you can’t swallow the whale whole.”

One of the things that have delighted McNichols most is the incredible amount of resources the Reeve Foundation has available.

“I had no idea how much information they have. I can call the Reeve Foundation and say this person needs this area of information, and they will mail or email whatever they have on the topic. It is really amazing.”

The women that McNichols has worked with are usually new to caregiving. One of the biggest challenges she sees caregivers facing is the amount of time it takes for the healing process and to adapt to life as a new normal. Regaining function can take over a year after an injury.

“Sometimes our conversations start with a focus on how to do specific things, then evolve into me just trying to be there and be their cheerleader,” says McNichols. “I try to help them get answers and solve issues. We also share the heartache of living so long with one partner and how hard it is to see them struggle.”

McNichols knows how stressful day-to-day life can be, and she wants to get the word out to more people who may need the support.

“If I wished I could help more people, it would mean more people are injured, and I don’t wish for that,” says McNichols. “Caregivers do what they do…give care to those who need them. I have the knowledge, time and interest in helping others at the most traumatic time in their life, and it is well worth the effort to carry my caregiving skills forward in hopes of making someone else’s life a little easier.”

You can request a Peer & Family Support Program mentor here.