I’ve been on this ALS journey for nearly five years. That alone makes me one of the lucky ones as half of those diagnosed die within two years. And, thanks to the VA, I have access to the equipment and medical care I need to live the safest and most engaged life possible. I also have a caring family and supportive friends that love me–priceless.
I don’t want to complain or sound ungrateful, but holy moly it’s getting hard to make sense of it all. I don’t recognize my strange looking limbs and I feel betrayed by my body. I’m still able to talk, eat, and breathe; imagine the betrayal that lies ahead.
My Facebook page is full of grand kids, travel, ball games, concerts, and friends. All of it is true. I refer back to the blessings of my family and friends. What you don’t see is the two hour routine it takes to get me ready in the morning and the one hour routine to get me into bed at night. You don’t see Steve spending 30 minutes trying to make me comfortable or changing my catheter, or helping me in the bathroom. It’s never pretty. Steve is the hero in this story.
You probably haven’t seen me try to scratch my eyebrows. I drop my head and lift my shaking hand. Then I turn my head from side to side rubbing my eyebrow over my finger. No big deal really. It’s just an example of how deliberately I have to consider the simplest of tasks.
I’m no longer driving. I made the decision to stop before I got into an accident. I’m no longer teaching. I had to prioritize how I want to spend my limited energy. I simply cannot muster the energy I need to provide the quality of teaching the students deserve. Truth is I wanted to make the decision proactively rather than have someone tell me I have to quit. It’s a strategy I employ to give me the illusion I have some control over my life.
The biggest challenge remains between my ears. I have moments when feel sorry for myself and give up. I struggle with asking for help outside of my family. I know it’s my stubborn pride. It’s as if asking for help solidifies the fact I’ve lost my physical independence. Duh. Thank you Captain Obvious.
It’s a process. I’m learning it takes me some time to adjust to each loss and that eventually everything will be okay. Take feeding myself for example. In restaurants I adjusted what I ordered to eat based on what I could get in my pie hole. Chicken tenders and french fries were my only option. Hold the ranch dressing please. My social circle shrank because I was too stubborn to have someone feed me in public. Guess what? Steve fed me salad at Jack’s last week and not a single person cared. If anything, people probably thought it was sweet how compassionately Steve cares for me.
So where do I go from here? It’s the same story I’ve been telling myself for the last five years: grieve, accept, adjust and adapt. Return to gratitude ASAP. The less I focus on my limitations, the more I can focus on my abilities and who and what really matters.
- return to gratitude
it’s not always a linear process; Grief returns in unexpected ways and yet we persevere. I’ve been stuck in grief for too long so I’m moving on.
I don’t corner the market on struggles or grief. What’s been upsetting you lately? I encourage you to grieve and find a way to persevere.
Lyrics from my favorite artist, Nahko, help me keep my head on straight:
Don’t waste your hate, rather gather and create. Be of service, be a sensible person. Use your words and don’t be nervous. You can do this, you’ve got purpose. Find your medicine and use it.
You can do this, you’ve got purpose. Find your medicine and use it.
I’m forgiven and Free and typed this whole thing without using a finger!