Moving into an Adult Home

May 2nd, 2021. It was time...

"For a year I've been staring into the burnt out eyes of the people I love the most, wanting what I just found. Im all moved in, and I can tell you that like so many other times in my life, I've stumbled upon something special. This is for my Family, Remi, and most importantly this is for me. Im going to get care that doesn't make me or anyone else feel less than human."

For someone with ALS fretting the decision to move into an adult family home, I think the question to ask is 'how much worse can it get?' Your heart soars as loved ones hold the line against an inevitable progression. But as your support system and motor nuerons slowly wink out, it might be best to fall back and stage a new battlefront. That doesn't mean waiving a white flag.

Of course I was scared on the first day. Before my dad left my room I remember choking up and telling him I was afraid that I would never leave this place. But the key to my journey moving forward was my past. I was showering once a week, brushing my teeth once a week, and feeling so guilty about toileting that I held it for days. After my previous situation, I was so sad and afraid that by the first time I woke up at my new 'home' I was already looking forward to a new day.

Like so many other things in life, it is what you make it. I've been through numerous caregivers and found that generally, if you appreciate someone, you can tap in to their natural instinct to care for those in need. That's just the start. I love everyone that touches my broken body, and my reward is seeing a sign that they know. People come and go but it hasn't stopped me from making meaningful connections with them.

The staff had never seen someone type with their eyes, and I had never heard swahili. The owner is a Maasai from Kenya, a semi-nomadic people known for their generosity, cattle herds, and impressive jumping ability. We connected instantly on curiosity about each other's background. On top of that, the sweet people had a genuine concern for me. I could

see the sadness in their eyes as they wondered how such a young man wound up in my position.

It didn't take long before I knew I was in the right place. When bathroom time came the staff could see my reluctance and said 'it's ok this is what we do'. When I wake up I see a smile and it makes me smile back. Little things like a hand on my wrist while we speak give me something that I need as a human. It wasn't long before someone caught me crying and then hugged me and kissed my forehead. The way they care for me is humbling and makes me wish I could have a chance to be that kind of difference in somebody's life.

From day one they wanted to wipe my face with a warm wet towel when I woke up.

At first I felt like that was such an over the top pampering. I was used to having waxy flakey skin building up in my eyebrows and falling onto the front of my shirt. So when they asked "Daniel, can I wipe your face?" I thought "uhh... Yes please!?! " To this day I can't help but smile when they wipe my face. There are some things that just feel different when somebody else does it for you.

Because of my past I know how lucky I am. The words thank you, I appreciate you, and Nawependa (I love you all) simply fall short no matter how much I type them. In fact I've learned that real key to a Kenyan's heart is food. I'll tell you that one for free. It's a perfect situation because my mom and I say I love you with food.

I'm extremely fond of my care team. We love music, Premier League, laughter and panganga (gossip). Remi comes on Monday and Friday, and Cliff is always waiting around a different corner to jump out and scare her. The way she laughs and looks at him while he scoops her up feels almost as good as if I could do it.

I've picked up enough swahili to understand some and have fun. The team usually stretches me in the afternoon, and if I accidentally toot, I deadpan and use my speech device to say "Usi cheka" (don't laugh). I've had rubber snakes planted by the back storm door, midnight alarms just to test agility and sprint speed, and I've orchestrated a scavenger hunt to find car keys. Remi has had silly string wars with staff, and made them everything from waffles to milkshakes. Her specialty is ritz with a mountain of spray cheese.

My parents get me out of the house once a week to drink beer and tinker with projects, but I'm always glad to get back home. There are still bad days mixed in with the good ones. A few years back I started losing choices one by one until I was all out. Then I found this place. That was life teaching me not to fight immovable objects, inevitable change. The more I did the faster my options disappeared. Now I'm part of an ecosystem, where everything works together. I still have little challenges reminding me to take what comes and be patient. But I always have dignity, love, and gratitude.