On Monday, we went to see Dr. H, my neurologist who first diagnosed my ALS. He sees me every three months. My progression has now reached the point that he is encouraging us to begin thinking about hospice care. It’s not urgent, but it would be good to begin considering our choices.
This was not really unexpected. I mean, we knew that at some point, hospice would be our next big decision. What I did not expect was my internal reaction. There was a momentary feeling of panic. “I’ve got lists to make, things to do, stuff to deal with!”
Yes. I am a list-maker. There used to be slips of paper everywhere with various lists in my messy handwriting. My purse and pockets were crammed with tiny pieces of paper. Things to do, things to buy, books to read, stuff to take along wherever I was headed…
So, yes. There is a list in my head of the things I would like to finish before I am unable to do so. Okay, it is a short list. And I have every confidence I will get to the most important stuff.
After the brief (but mild) panic, the reality set in. Hospice. This really is happening. All of my “I am not afraid of dying” speeches hightailed it out of the room, down the hall, jumped the railing down to the ground floor, and took off out the door. Just like that. Dang.
I’m still okay. No meltdowns. No tears. I’m just processing this. And we will be just fine.
At this point in my journey, we find ourselves cresting a hill and peering down into the valley. The journey itself is far from over, but it has taken a decided turn. I have no doubt there are still adventures to be had! And through it all, we are never alone.
I know that I share often here about my faith. But I don’t want to give anyone the impression that I have it all together. That I never get rattled or frightened. Yes, I believe. I believe that there is a God, and that He is the creator of the universe and everything in it. And I believe in His Son, Jesus Christ, and in the Holy Spirit. But as a human – and recovering control freak – I want to know exactly what I will experience at the moment of my death. Yes, there are books on this subject and I have read them. But, of course, doubt always creeps in with questions like, “What if they are just trying to sell books?” As much as I try to keep a positive attitude, this world just invites cynicism, doesn’t it?
So I return to the one source I know I can trust: the Bible. The Word of God. There I find comfort, promises and reassurance.
The 23rd Psalm offers so much comfort. It paints a beautiful picture of the Lord as a protective loving Shepherd, guiding me to my eventual destination: home with Him. Though I walk through the valley of the shadow of death, there is no fear because He is with me.
ALS is a terminal disease. So, yes, I am dying. Aren’t we all? Unless there is some significant change in my progression rate it is unlikely I will make it to my 60th birthday in 2016. But I look forward to a beautiful birthday in heaven.
In December of this year, if the Lord wills it, Alan and I will celebrate our 37th wedding anniversary. It bothers me that I can no longer wear my wedding and engagement rings, so I asked Alan to put them on one of my favorite necklaces.
My 40th high school reunion is coming up in August. I am really looking forward to this! Barring any medical emergencies I should be okay that day. I just may not be able to talk. Maybe I will have something typed up and printed out.
2 Corinthians 4:18 says, “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” I need to remember this. What I see is a body that doesn’t work very well anymore. But there is a power at work within me. God is guiding me each step of the way. I will move with confidence into this valley because He is right there beside me.