Finding Peace in the midst of ALS

This month, I had the opportunity to visit my brother Jon's family twice. The first visit was at the impetus of my brother, Gerry, who lives in London and wanted to visit. Six of the seven Neu siblings were able to gather at Jon's house, working on home improvement projects, visiting, and eating yummy food. I went up yet again two weekends after to help with more home improvement projects and just try to be of service.

With each passing week and every visit, I think about this diagnosis. I try to understand it. How should I help? How should I feel? How DO I feel? Should I be doing this differently? Should I be understanding this differently?

When Jon was first diagnosed with ALS, it was very difficult to come to terms with. I read books about the disease, and the odds he faces.My family members and I started a frenzy of fasting, praying, pleading for healing, for beating those odds. I grappled with images and stories of others with ALS, like the Team Gleason commercial above, and  the documentary "Indestructible". Putting Jon's face into these stories causes me such anguish, even if the stories are infused with hope.

We don't know what the future holds.  But we must acknowledge our reality, including the fact the disease is progressing. While coming to terms with this reality is still difficult, I find peace in these thoughts:

We all still have a lot of hope for that better future. Miracles and cures are always possible.

I repeatedly remind myself that I have not actually lost my brother. In fact, I'm lucky he's still here. Some people lose their loved ones in an instant -- wonderful people who are treasured, just as much as my brother.

Despite my good fortune, I repeatedly experience feelings of devastation and loss. This will likely not stop. And it's OK. Obviously Jon is not gone, but the invincible Jon, and my expectations of a future invincible Jon -- they have been diminished. That is something to grieve.

As much as I feel overwhelmed to process this, I struggle even more to imagine how it would feel to be Jon in this situation. As I consider how to manage emotions in this uncertainty, I try to remember to be most mindful of his.

We, his extended family, fumble with how to anticipate and accommodate Jon's family's needs. But it's a kind, loving thing to fumble with.

My sister is picking up her whole family and moving to Minnesota, just to be there in case that would be helpful. She's awesome. My whole family is awesome.

It doesn't matter to me whether they "really need something" or if something could be put off till later. If there is something to do and I'm able,  I will seize the opportunity. We may not be able to move heaven and earth, or cure my brother, but we can do everything within our capacity to help-- if for no other purpose, just to prove that if we could, we would. And we do.

I am unwilling, despite my good fortune that his disease is not taking him from us more quickly, to give Jon up to ALS. Even if losing Jon to ALS was inevitable (which it's not). I won't give him up till I have to.