Fighting ALS, Fueled by Faith

This weekend was really great for all of us. As a reminder we were able to travel to Newport, California with my youngest daughter and meet my oldest daughter, husband and their beast of a dog! He’s a great dog and adds a goofy energy, perfect for a group of true animal lovers. We were able to take this trip through the amazing generosity of a family my daughter knows, who we haven’t had the pleasure of meeting. A three bedroom place that accommodated us all well, overlooking Balboa Island and the Ocean – someone please try to tell me God wasn’t involved in all of this!

We did what we coined a “Johnson” trip, meaning food and the beach were the main focus. We went to Crystal cove Beach two days and the other day went to a beach a stones throw from the condo. All were great! Crystal Cove reminded me of going back in time – what going to the beach 40 years ago would have looked like, Yes – there were crowds but the vibe was relaxed and there were kids playing everywhere. This was good for the soul. On Saturday morning we went to the Laguna Beach Farmers Market. California farmers markets excite the souls of my girls. This one has become one of our favorites because it has amazing yogurt, coconut milk, pastries, fruits and veggies and flowers. This time we found great pies as well. And of course about every tenth person has a dog, which seems to be a magnet for my girls, regardless of how cute they really are. We always buy more than we can eat at the market, it’s kind of the whole rush of energy to get all the goodies before they run out. Can’t let that happen!

At my stage of dealing with this disease, energy management and walking amounts are the main factors. On average, according to literature and discussions, a person with ALS burns about 3 times the energy just sitting in one location than they would have without the disease. So imagine how quickly you get tired in actually doing things. It’s real. Also for me, this all started with weakness in my legs so I have to be thoughtful of my legs abilities. With each activity we experimented a bit. We are “dialing it in” and through the understanding and grace of my family I am able to be involved in all of it.

As we pack up to return to Las Vegas, a few things come to mind. The first is that God is good all the time. This can be hard to embrace in the storm but if you look around just a bit, you can totally see Him with you and at work. The second is that there are no coincidences. The longer I live the less I believe in coincidence. God is always working and many times there are things happening that we just can’t see or don’t know about. The third, and particularly important for me right now is that I have a choice – a can or can’t choice. Our brains are powerful and can convince us that we can’t do things that we really can. True, I cant run a marathon right now but I can be active and make memories. I can fight ALS and win. I can love people and point them to Christ even when I am exhausted.

Go to the beach – done. Go to the Farmers Market – done. Eat more than a human should – done. Love on the family and make memories – done. Trust God – done. Embrace this part (ALS) of His plan for me – still working on it.