So, what does it mean to care for those with rare neuroimmune disorders?
Care is complicated. It’s the choice to set aside some of what you want and choosing to dedicate your time, efforts, or even your life toward something you love.
Rod Corpuz’ article, to me, represents a striking effort to care. The love he has for his wife and the pain he feels on her behalf regarding her transverse myelitis translates to the pain he feels running the race. There are these strenuous lengths he’s willing to go to represent and champion her. He succinctly summarizes his experience caring for her and those like her in the following quote:
“As her husband, it’s so difficult to see her go through pain every single day. I would do anything to take that pain away. But like I said earlier, Erin is a WARRIOR. She inspires me, and as her husband, I will continue to do whatever it takes to support her in any way possible. Ultimately, that is why I continue to support the SRNA and all their work towards helping people with neuroimmune conditions.”
Caring is like running a race in the rain. There are pitfalls, there are churning waves, there are winding roads, and the road often belongs to someone else. As a caregiver, your role is to run that race beside the one you care for, and sometimes the pace can be slow. A slow pace can be just as frustrating at times. Everyone with these rare conditions asks the same question: when will I get better? And sometimes the road just carries on, and there isn’t a better, but there is an okay. There is a manageable, and there is still the possibility of a good life, albeit a different one.
But what about those who themselves walk the road? Becca Salky wrote of her experiences, and her choice to care for those with similar rare neuroimmune disorders by volunteering with organizations like SRNA and the MOG Project:
“After I sought support online, I found a group run by The MOG Project that had about 500 members at the time. I started getting more involved, and hosted a weekly support group for young adults with MOG antibody disease and NMOSD. Since then, I have met hundreds of people with MOG and NMOSD and I am so grateful to have found people who truly understand what it’s like to live with chronic illness.
I later started listening to SRNA’s Ask the Experts podcasts, learned more about SRNA’s mission, and decided I wanted to get involved. I had my first SRNA volunteer experience in July 2023 at the Quality of Life Family Camp in San Antonio, Texas. I also recently became a Peer Connect Leader, and I am excited to continue meeting and supporting these amazing patients with MOGAD and related diseases. I am so thankful for SRNA and the community they’ve created. Whether you’re a patient, supporting a patient, or a healthcare professional, I encourage everyone to contribute to advocacy organizations like SRNA. These non-profit organizations need all the help they can get, whether through financial contributions or volunteering. If you volunteer, I promise you’ll meet so many caring, supportive individuals focused on improving care for people with rare neuroimmune diseases.”
Becca has lived with and grown up alongside this illness, and yet she has chosen to dedicate so much of her time and effort toward the community. In turn, she feels seen and heard and is integrated into a community of her peers. To care takes effort, but is always worthwhile. No one is alone in this, and people like Becca help ensure no one feels that way.
Additionally, there’s Jim Lubin, who I had the pleasure of interviewing. I felt changed after talking to him—he’s a very pure-hearted man. When I asked what drives him to work so hard, despite all the hardship that would likely have discouraged others in his same position, despite not holding out hope for a cure within his lifetime, he said the following:
“I just enjoy helping people. When I first set up my disability website, I just went and looked for information and collected it. And when people would reach out to me, even if they didn’t have TM, I’d look for a solution. I’d get thank you cards from people, like a guy who needed a prosthetic ear and I found a maker for him. There was a need for disability resources to be translated, so I found a translator. There was a need for support groups in other countries, I helped sort that out. And I was never waiting for a cure—I got sick, there’s nothing I did, there’s nothing I could do to stop it. I moved on with my life, I asked “What am I able to do?” and did that.”
Jim has been caring for us all for 35 years, putting in time and effort to help us build our organization. He chooses to care for all those like him because it’s something he can do, and because it feels good to help.
People who walk this same road and still choose to expend energy toward others’ similar paths are equally amazing. Caring for your own self after having a rare neuroimmune disorder can already be difficult, but to have an open heart to others in your situation takes dedication and empathy that not everyone can always foster.
To care for someone with a rare neuroimmune disorder to me, as someone who has a rare disorder, means to set aside major portions of your life for the sake of others’ wellbeing. It’s the decision to be there for people even when it’s hard and especially when it’s hard. It’s through thick and thin, and it’s the pure motivation of loving others that drives it.
