Meet MS Support Hero Lisa Pinder
written by Lisa Pinder
I have always been calm in a crisis. When I was 7, my baby brother stopped breathing. As my mom frantically worked to get him to breathe again, I rushed out the back screen door and sprinted through the vegetable garden and the unmown grassy lot and down yet another street to fetch my father from the distant >eld where he was working. When I was 12, my youngest sister was riding her bike on our rural country road when she was struck by a car. As soon as my other sister ran up to the house breathlessly shouting the news, I jogged across the yard and vaulted the fence, determined to see what I could do to help. When I was 16, I started to climb out of a van and grabbed hold of the metal support between the doors just as a friend slammed the passenger door shut and walked away. With only a deep breath, I reached down with my other hand and opened the door to release my trapped >ngers.
At the age of 25 when my husband Gary was diagnosed with probable multiple sclerosis (MS), the same sense of calm and practicality descended. What could I do to help? I became the primary driver, the second set of listening ears at appointments, the willing provisioner and provider of diet and nutrition changes, the determined encourager – all in an effort to be a bulwark against the steady series of changes that MS wrought as it morphed from probable to de>nite to constant.
The role of a caregiver involves a measure of self-sacrifice. It’s a behind-the-scenes effort that usually only the direct recipient is aware of. It’s a support that is poured out with love. When the crisis never passes or returns again and again, though, being a caregiver can become exhausting.
In many ways, I’ve been lucky. The course of Gary’s MS has been relatively mild with long periods of near-stability. We have weathered the relapses and dealt with each crisis as it has arisen. Even with MS as a thread in our lives, Gary and I have raised a family and traveled the world together. But over the years in the dark of night, I have reached out to gently touch my sleeping husband’s head and quietly prayed for healing, that his immune system would reset, would recognize that the myelin sheath surrounding his nerves was not an invader to be destroyed, and that MS would leave our lives as inexplicably as it arrived. That prayer has never been answered with ‘yes’.
However, those periods of near-stability have given me breathing room to prepare for the next MS crisis, small or large, and I’ve been able to pull on that sense of calm and action each time. Sometimes it’s not with as much patience as I would like, but in time Gary and I always reach the necessary tempo and rhythm of working together to navigate that iteration of MS in our lives.
Over the course of 25 years, I’ve come to see my role as that of a bridge. I bridge the gaps that MS has created. This might be a physical bridge, such as holding Gary’s hand as we walk along a particularly uneven hiking path to help him maintain his balance, or a cognitive bridge like helping Gary interpret whether 8:00 a.m. is early or late in the day.
For the caregivers who serve as bridges for loved ones with MS, you know the endurance that’s needed and the cost of that endurance. Even with a mild course for the disease, the uncertainty of what is coming next can leave you both off balance.
There have been many admonitions that the caregiver should practice self-care in order to be most effective. And they’re all true. Potentially the best advice I’ve ever received has been to reach out to share your stories of triumph and frustration, to know that you’re not the first or the only person who has been in this position of bridging the gaps.
It has taken me a long time to heed that advice, though. I’ve always thought of myself as strong and independent. I’m not the one with the disease. I’m supposed to be the helper, the supporter, the cheerleader, and these roles pre-suppose endless supplies of good cheer, patience and solutions. There’s no room for doubt or annoyance or frustration.
Yet those feelings are natural, and the good news is that they are easier to process and bear when they are shared. You and I don’t have to have all the answers. We don’t have to bridge the gaps alone.
Being able to be calm in a crisis has served me well, but having the support of a community bolsters my spirit. Reach out to your fellow MS Heroes and share your stories. We can support each other and actively listen. We can bridge the gaps together and keep ourselves and our MS Warriors strong.