Accessibility · Adaptive Adventure · Adaptive Parenting (an adventure itself) · Through the Power of Sport

Christopher and Dana Reeve Blog: “Essential lifelines, pathways, people to people,” May 3, 2018

Here’s the thing: talking about certain spinal cord related issues like bodily fluids, poop, sexuality, and fertility does not come naturally to me. However, I’ve gotten better at it over time. Some people are incredibly private about such personal matters, but in listening to my husband over the years, I’ve learned not to be. It’s not to say, I seek out those conversations because I don’t. But once we finally had children after a long (although not as long as some), complicated (again, it could have been worse), and expensive (doesn’t seem fair that some insurance in some states covers in vitro fertilization but NH doesn’t and as a school teacher I’m grateful for good insurance), people started giving my phone number and email out as “someone to talk to.” We became someone who had gone through the process, endured, and ended up with a baby. People thought we could maybe help them too.

So, when someone emails or calls, I reply. I don’t pretend to have all the answers, and when I don’t, I reach out to other resources or people in the hopes that they might be better able to help a situation. This is the world we live in– one that is full of different avenues for discourse and communication if we choose to use it. However, in reading and rereading other people’s blogs on the Christopher & Dana Reeve Foundation website, I’m often surprised.

For example, it’s unconscionable to me after reading Will Reeve’s recent testimony to Congress that the Trump Administration would consider cutting funding for PRC’s (Paralysis Resource Centers) which is just one kind of informational hub to help people. PRC’s are lifelines for millions of people worldwide and not just for those living here in America.Michael Collin’s wrote a recent blog providing connections beyond the rehab hospital to share information and experience between newly paralyzed people with those who have lived longer with their situation. Learning from other’s experience is a lifeline Geoff depended on after he was paralyzed, and he becomes that now for others. This goes beyond “paying it forward”; building these pathways for people is a personal responsibility. I always learn something new when I read Nurse Linda and Allen Rucker’s point of view is an important one for me to remember when I’m frustrated by some day to day experience. There are many others whose regular blogs are important to read, and I read them knowing that I may one day, as a caregiver, be able to point someone else in the right direction. It’s a side effect, I suppose, of being a teacher.

However, in the last year or so, I can think of three people who have reached out to me for help, and I’ve put them in touch with a specific person who never even bothered to respond–whether it was through an email or phone call or a name on a website to address inquiries too. This has me fired up, primarily because we live in a world of problem solvers. These lifelines exist; pathways for people made of people, and we need to help.Whether we are discussing SCI, the opioid crisis, mental illness– the more we share the deeper we understand the challenges associated within our community.

We must follow through when people reach out.Life is hard enough, and when people are brave enough to reach out and then ignored, they don’t reach out again. When we were at Geoff and Emerson’s service dog graduation this past weekend at NEADS, one woman spoke poignantly about how her dog had literally become her lifetime in her care facility.Her pup had been trained to push a button when she needed help. If we suffer a medical crisis, we call first responders, dial 911, and help comes. This should be no different.Sometimes, we become the first responders in the everyday crises of life.Reading about other people’s lifelines on the Reeve Foundation blog helps me in my life as a caregiver; it also reminds us of our responsibilities to one another. The more we travel with one another down these pathways, the rocks and roots, barriers to our forward momentum, are smoothed down for others to pass. Friends may help us to move the boulders or the parked cars blocking travel, but in the end, we must journey forward or remain stuck. Answer the call; respond to the email or text message, even when you don’t know the answer. The fact that you were listening is sometimes everything as a first responder.

Heather Krill is a writer- wife- teacher-mom who lives in the White Mountains of NH with her husband, Geoff, a paraplegic and professional skier, and their two children, Carver and Greta who are 8 and 6.Please check out her novel True North, website www.heatherkrill.com, author FB page Heather Krill, @heatherkrill1 on Twitter, and, most recently added in the New Year, her Youtube channel “Writing from the Front.” 

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