A few weeks ago, I visited my friend Laura up in Wichita, Kansas. Those of you who are long-time readers of this blog have heard of Laura several times before in these missives. She’s the one of the gals who saved me from utter friendlessness when I was a glasses-wearing, chubby, awkward smart kid in elementary school. She’s the one who drove six hours to give me a much-needed hug and a stunning quilt she’d made for me after The Fire destroyed everything we owned. It’s called “Roses bloom again.” Laura’s been a raving fan of my books since the beginning of my 3rd career as a writer.
Just this past year, she popped down to see two plays I’d directed here in the Dallas area, making that same 6-hour drive each time. It’s always so nice to see and be with Laura. We are near-opposites on plenty of ideological things, but our friendship has always come first, and the other stuff never seems to matter, or we have an interesting, respectful conversation about our differences. Her husband Ken is a great guy, too. I’ve known him since high school.
When Laura was here the last two times, just this past summer, she was using a cane to walk. A couple of pesky falls had knocked her around a bit. We laughed and talked for hours and hours and walked slowly wherever we needed to go. I really didn’t think anything of the cane. Just part of getting dinged up and not bouncing back the way we used to.
We have occasional phone calls, too. A month or so after her visit, I noticed her speech was a bit garbled. Now I know for sure that Laura isn’t a drinker, but it was like that, how you talk after one too many on a girl’s night out. A bit slurred, nothing remarkable. I remembered the time I accidentally bit a bee when on a picnic, and how my tongue swelled up, it was that kind of thickness of speech. She was concerned enough to see a speech therapist. She also had another fall in her garage and couldn’t get up from it. She had to call Ken to come help her.
Small alarm bells were going on for both of us. Like a distant fire alarm in a big building, when maybe you should leave, but maybe not, and you hem and haw without getting up. That level of alarm.
Laura went for testing. And then more testing. The therapy she was getting for speech and swallowing wasn’t helping. I recommended on a call we had together in October that she not postpone anything (the insurance was saying the first available specialist opening was something ridiculous, like January), and get in to see a specialist. The prayers of friends and the planets aligned, and she got in within a week to see a top medical professional. He did more, quite unpleasant, tests.
I didn’t hear from Laura for a week.
We finally talked when she was ready. It was a worst-case situation. My dear friend was diagnosed with ALS. If you are lucky enough not to know what that is, in a nutshell it’s a nervous system disease where the cells break down and the muscles they serve don’t get the message to move. It’s rare. They don’t know what causes it, really. Baseball great Lou Gehrig and astrophysicist Stephen Hawking had it. It’s no respecter of physical stamina or brains. If it was, my friend Dr. Laura (yes, she has a PhD) would have been free and clear of it.
It’s incurable. People can live with it for a sturdy amount of years, or not. No telling. It’s horrifically unfair.
So, I went up and visited my friend. I got to do the six-hour trip this time. We had fun. I got a hotel room about three minutes from her beautiful home. We hung out, ate some food, watched TV, talked the way we do. The way we always have. I had some prickly situations with my parents that I needed to get her always-excellent and thoughtful advice about. It was wonderful being with her for a couple of days. Everything has surely changed, but in another, more important way, nothing has changed. Laura is Laura. Laura is my lifelong friend.
Not quite three months after her diagnosis of ALS, Laura is in a zippy purple electric wheelchair. They’ve bought a van that accommodates it, and her church built an amazing ramp she can use to get down into the garage. Laura can’t hold her head up very well. She uses a neck brace. She can’t lay down to sleep anymore, and instead uses a recliner. Her speech is okay, if you know her, but you can tell it’s a strain for her to talk after a while. She’s planning on getting one of those boxes where you can input words and phrases to make that easier. Eating has become difficult. In typical Laura fashion, she quipped, “I’m finally down to my ideal weight!” The latest thing she went through was to get a feeding tube implanted in her belly. Getting sick is not for sissies.
Both Laura and Ken seem to be pragmatic about everything, facing it head-on, with a lot of grace. She’s honest about the difficulties of this new reality. I’m going to let her tell you about it, with her permission. The first section is from mid-January, a few days before my visit.
ALS is a beast. This is a totally transparent and long post about the current state of my daily life.
I usually don’t feel well in the morning. Either I’m groggy from lack of sleep, sore from sleeping in a recliner, or fighting an upset stomach from my medicine. I don’t get much done and I sometimes nap mid-morning. Some mornings I feel pretty good. Ken makes me a protein smoothie with yogurt and fruit because it seems to sit better than anything else and I don’t usually choke on it.
I try to be productive for a couple of hours in the afternoon, writing or reading or whatever I need to do. I kind of poop out around 3:00 and nap again. I feel like I’m sleeping my life away.
I have my tv routine and watch the same shows every day. I try to read but it’s hard to concentrate.
I’m pretty fortunate right now. I can still walk enough to transfer from recliner to wheelchair to toilet. I can walk with my rollator, but I can’t hold my head up even with a neck brace. That’s what keeps me from sewing or doing most things around the house. If I’m sitting in a chair with back support, I seem to be able to hold it up. I run out of air and have difficulty breathing, so I use my ventilator several times a day and I feel better.
By evening I feel pretty good, especially if I’ve forced myself to eat during the day. I sit here and for a few minutes feel normal. I can almost forget something is wrong with me. That is until I need to get up and do something. Then it all comes crashing back.
Twice a day I choke down my pills with applesauce, so they don’t get stuck. Around 10:30 I kiss Ken goodnight and slide my ventilator harness on and cover up. I lay back in my recliner because I can’t sleep in bed and most of the time drift off to sleep for an hour or two, three if I’m lucky. 5:00 am arrives, and it all starts over.
Where will I be in a couple of months? In 6 months? In a year? I thank God every time I stand or walk. I thank God I can still talk-sort of anyway. I thank God for my wonderful caretaker husband. For my friends who come to visit or send a message or a card with a handwritten note. That makes my day.
February Update: I spent a terrifying 24 hours in the hospital last week. Everyone online and my doctor assured me that getting a feeding tube was “a piece of cake”. Well since my current mode of operation is if it can go wrong, it will, I had breathing complications. I spent the night in my purple chair in a hospital room because I was terrified to get in a bed where I couldn’t move. The night nurse had no understanding of ALS and harassed Ken several times for spending the night in my room. This has been one of the roughest weeks of my life and there have been many tears and fears of what the future holds. I don’t have any choices. My dear husband and I continually tell each other not to give up. I don’t have any choice. With God by my side, I’ll keep going.
I’m so lucky to have a friend like Laura, to have had her for over fifty years. And I’m pissed as hell that this happened to her.
Here’s the ALS foundation if you’d like to know more: https://www.als.org/
And the link for Laura’s Go Fund Me, which is helping to bridge the crazy expense gap: https://www.gofundme.com/f/laura-mclemore-fight-als