An Early Thanksgiving

The morning after the recent lunar eclipse, I had planned to get up early, shoot the sunrise, then take a bicycle ride in search of wildlife to photograph. The eclipse was past what I've been trying to keep as a steady bedtime. Meaning, I got to bed LATE. After seven years of mostly sleepless nights (and even before Parkinson's), attempting to regulate my sleep patterns this last few months has been a bit of a challenge. I decided not to take my sleep aid the night of the eclipse so I might still be able to get up on time for the sunrise.

I woke ten minutes before the alarm went off, and I read scriptures until my daily devotional chimed. I had a 529-day streak of doing it every single morning before Lizard went into the hospital. I tried to keep up with it that week but apparently floundered a little. My streak as of this writing now stands at 130 days, which goes back to the day after he died.

Every once in a while, the daily devotional, which is centered on the Old Testament this year, really gets me. So many of the devotionals are so applicable to what I'm going through at that very moment. I often feel as if God Himself has plucked that particular verse that very day to prove to me He is still istening and still loving.

The devotional always links to another applicable and related scripture, as well as another article or General Conference talk that delves deeper into the principle being taught. I used to read both every single day. I was extremely spotty the last six weeks of Lizard's life because the Parkinson's had become so severe and sleep for both of us had become so fleeting. In the very wee hours of the morning, I set the goal to read and truly study both again each and every day while I waited for hours for the coroner to arrive and pronounce Lizard's passing official.

The morning after the most recent lunar eclipse, the verse of the day was Psalm 69:16. "Turn unto me according to the multitude of thy tender mercies." The linked scripture was 2 Samuel 22:2-3. "And he said, The LORD is my rock, and my deliverer; The God of my rock; in him will I trust, he is my shield, and the horn of my salvation, my high tower, and my refuge, my saviour; thou savest me from violence."

The linked article broke me. I erupted into a fountain of tears to rival Episode 54 at Kilauea a couple of days earlier.

I've been writing a letter to Lizard every day since about ten days after he died. I don't know if he can hear me when I talk to him. I don't know if he stands over my shoulder as I write to him. I don't know if he will ever be able to read what I write. But my pretended continued communication helps me feel connected to him, especially when I am missing him more than normal. I'm sharing a few excerpts I wrote to him the day after the most recent lunar eclipse because I think it best expresses what I wanted to share with you today.

Today's devotional broke me. Again. I think I'm doing better and healing, then something comes out of nowhere and topples me again. The devotional featured a short video message from a woman whose husband confiscated all their money and left the country. I thought of my first husband, who hurt me so deeply, I almost didn't trust you when we first met. But then I thought of you. I am so blessed to have you as my eternal companion. You are so kind and so sensitive, and you would never knowingly do anything to hurt me. Ever. That was such a tender mercy for me to realize.

The devotional also linked to a 10-year-old article by a woman with MS. I know a lot about MS because of all our efforts to fight the disease for those who couldn't before you were diagnosed with something equally as bad. If not worse.

I wondered as she disclosed her diagnosis if she is even still alive now. Her symptoms were severe when she was first diagnosed. As we both may recall, being diagnosed with MS is not always easy or fast. Hers seemed to come on like gangbusters, just like your Parkinson's, and I continually thought of you as I read on.

She received a priesthood blessing assuring her God would not give her any trial that would not be for her benefit. That absolutely broke me. At first, all I could think about was your final week, and how in the world could that possibly have been for my good? I cried and cried. Then, my thoughts went to you. Even before I was able to pick up my phone to finish reading her story, I thought about how much you suffered. Initially, I questioned God. How could that have been for your good?

I pretty quickly turned it around to being thankful you are no longer suffering and are whole now. That you were able to do so much in your life before it was prematurely taken from you. Almost like a thief in the night.

I remembered how you were always so good-natured and filled with loving kindness (which I've been studying a lot this week in Psalms), even when things got really bad. There were moments when you were not you, and there were too many times when you didn't recognize me. But just like the kindness you continually tried to show the homeless people you thought had commandeered our house, you tried to be kind to me, and you were almost always considerate of my needs. Because that's who you are. Even in extreme duress.

It helped me love you more. Sometimes, I don't think that's even possible. My heart is so full of you, there's no way my love for you could grow any bigger. But it does. All the time. Just like it did this morning.

I still haven't finished reading the article yet, and I've got so many things I need to get done this morning before it gets too hot. But I couldn't go any further without letting you know how grateful I am for you, how much my love for you keeps growing, and that even though I still have moments of intense pain, I know it's because we have such intense love. I wouldn't trade that for anything.

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Wordless Wednesday

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Too Real

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Lizard sometimes has horrific nightmares. Thankfully, he more recently is unable to remember most of his bad dreams when I wake him to calm him from blood-curdling screams. I consider his inability to remember his night terrors as one of the most gigantic tender mercies we receive these days.

We both had gone sleepless several nights the week I scheduled to drop off snowflakes in person to a pair of Operation Ornaments coordinators. Carol and Carolyn (the founder) were conducting workshops for disaster preparedness and to assemble ornament packages for families affected by the 2023 fires in Lahaina, Hawaii. Lizard accompanied me to deliver ornaments handmade by me, Sisters of the Snowflake founder Autumn, and a pair of sister missionaries from my church. We had a delightful visit with the two women, whom we were so excited to meet, and I even got interviewed as an "Ornament Angel."

Both Lizard and I fell fast sleep upon returning home... in the middle of the day. We have been working diligently since March to flip our sleep schedule. We had gone 35 consecutive days of sleeping only at night until near the end of June, when suddenly and without explanation we were struggling again. I hear it's very common for people with Parkinson's (and as a result, their caregivers) to sleep all day and be up all night. Just like the old song from high school, only not from partying...

Our palliative care nurse had recommended we nap not longer than 30 minutes during the day (up to three times per day) to make sleep at night more needful. That's how we'd finally built more than a month of back-to-back success. I let him sleep an hour if he's had a difficult night, and he'd definitely had a difficult night. I told Lizard we could sleep only until the alarm signaling his next medication dose, which would be just a bit more than an hour.

Now it was my turn for nightmares. I dreamed, so vividly I thought it was real, that I had forgotten a box of snowflakes and instructed Lizard to sleep on while I delivered the final box. I planned to be back well before his next dose of medication.

In the dream, I quickly delivered the snowflakes, then returned to the parking lot, only to discover my car was gone! Sheer panic set in as I tried to figure out how to get Lizard his pills without transportation to get me there on time. I wandered the neighborhood in a high state of anxiety, pushing the alarm button on my key FOB, earnestly listening for the beep of my car's alarm. Crickets.

I wandered beneath an overpass where the eyes of gangs of unkempt men much larger than me riveted upon me. I was even more terrified. I tried to briskly make my way back into the daylight when suddenly I heard my car beep. I had continued pushing the button on the FOB as I walked. My eyes followed the sound of the beeps from my car, but instead of my car, my vision landed upon a vehicle filled with even more men, and they were driving straight toward me. I began to run toward the daylight as fast as I could.

My phone rang, and I was shocked to see Lizard was calling. I speedily answered and tried to keep my calm while explaining to him why I wasn't home yet while marveling at his renewed ability to use the phone. In real life, he has not been able to operate his phone for more than a year, but just the day before, he had succeeded in calling me while I was in the garden. He didn't know where I'd gone and was trying to find me. I asked him how he figured out how to call me, and he couldn't remember. But, back to the nightmare, Lizard expressed his anxiety over not being able to find his pills.

I tried to explain how to open the Saturday compartment of the pill box and how to retrieve just three pills when his alarm, on his phone, on which he was trying to speak, began blaring again. In real life, he often accidentally hits the snooze button instead of the stop button. He began panicking, and I told him I would call for an Uber ride so I could get home and help him with his pills. I was still running for daylight, and a monster car was still gaining on me.

Just then, his real alarm in real life began blaring, jarring us both. The dream seemed so real to me, I thought our car was still missing. My heart was up in my throat, and my blood pressure likely was off the charts. I ran to the front window and stared in shock at the car properly parked right where I'd left it. All was safe and sound. Lizard got his pills, and his reaction to my trepidation was enough to thoroughly wake both of us. For HOURS!

Not the most user-friendly method of enforcing shorter naps, but I can't deny its effectiveness. On the very bright side, we didn't fall back asleep until after 10 that night. Even more importantly, we slept through the night!!!

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Just Ride

2024

I was trying to finish up a snowflake while Lizard loaded the bikes onto the car. We had been around the block on our bikes a couple of times last month, but hadn't really gone for a good ride in months. Since winter weather set in. I hate taking breaks that long because I know Lizard will have to start all over again from scratch when he gets back on his bike. And the tiniest bit of stress will make him feel like he can't ride.

I should have known something was wrong. It normally doesn't take snowflake-finishing long for him to put the bikes on the rack. When Lizard came back in the house, he was completely stressed out and ready to give up. I told him to sit down and rest for a bit, and I'd finish loading the bikes, not knowing what a mess I was getting myself into. He sat down, and I could tell I was going to have to go into cheerleader mode to get him to go once the bikes were loaded.

The first bike was backwards and completely caught in the rack. In four short months, Lizard had forgotten how to load the bikes. I should have offered to help when he couldn't remember the code to open the garage door. I should have known Parkinson's had stolen more than just the code he set up 15 years ago. The brace for the front wheel was completely tangled in the spokes of the back wheel. I didn't know if I'd be able to safely extract the bike, and I didn't know if the wheel would still be true.

A little more than half an hour later, I had the bikes loaded, and I went back into the house to tell Lizard we could go. He was asleep on the floor. He often lays on the floor to stretch, but he typically puts his exercise mat down first. Weather was expected to move in within the next three hours. We'd vowed to ride every day for the past two weeks, but Lizard has been having great difficulty sleeping at night again, and he's too tired every single day. This was the first day he'd been awake. Until he wasn't...

With another storm expected in a couple of days, I thought we'd better ride while we could; we might not get another chance until the following week. I woke Lizard and told him the bikes were ready.

2024

Nearly an hour later, he was in the car and ready to go. We got to the trailhead, and I took the bikes off the rack. He typically does that, but I didn't want him to stress again. Good thing, too, because he soon was stressed out and ready to give up again because once again, just like each time we've tried to get back into the routine, he couldn't get his leg over his bike.

2023

I tried holding his bike for him and guiding his foot, which was super Parkinson's rigid, over the back tire and onto the pedal. The entire time, he kept saying he was done and wanted to go home. This had happened multiple times last year, and each time, I was able to cheer him into not giving up. It was SO much harder this time. But I finally got him back on his bike, and he was able to pedal upright, with better balance than he has when walking. That also is normal. His bike has been like his wheelchair for the past five years. He often can ride immediately once he's able to get on the bike, as if he'd never been off it. It's just a matter of getting back on the bike.

2024

I suggested we ride around the parking lot first, to make sure he was going to be able to ride, as well as turn around, which he'd have to do if we made it onto the trail. He was extremely slow, but he was riding. Until it came time to turn around. We'd gone barely a mile when he said his legs were gone. Sometimes he can get a second wind, if I can keep him on the bike. But I wasn't able to keep him on his bike. He struggled getting off while I dismounted as quickly as I could to help him. He sat on the ground and said he was done. He said he'd walk his bike back to the car. He didn't want to try getting back on the bike. He already knew he couldn't do it.

2024

A couple of times last year, he was able to get back on his bike by standing on a curb, so he was just a bit higher than the bike, enabling him to get his leg over the bike. I walked both bikes to the closest curb, about a quarter mile away, while he slowly followed behind, the standard Parkinson's gait. Shuffling his feet, arms not moving at all, extremely hunched over. Beaten. Defeated.

"I can't speak anymore," he said when he finally reached me. "I can't read anymore. I can't wrench on my bike anymore. I walk at a snail's pace. And now I can't ride anymore. I can't even get on my bike. My life is over."

It was the most he'd said in weeks, perhaps months, and I could understand every word. He tends to be loud enough for me to hear when he's angry. I told him to turn that fire into determination and get back on that bike. He coughed up all kinds of excuses for the next ten or so minutes. Meanwhile, other cyclists rode by, each pausing and asking if we were okay. I would explain he has Parkinson's and is trying to get back on his bike. Each passing cyclist would compliment Lizard on his determination and progress, but then ride off. I suppose it's uncomfortable to try to help someone when you perhaps don't have the slightest clue how to help and are afraid you might help cause an injury.

I tried the entire afternoon to stay cheerful, loving, patient and believing. I kept telling him I knew he could do it. I would remind him of the times he wouldn't let me give up. Trying to get up the Grand Mesa during Ride the Rockies, when he came up behind me and gently pushed my back, cheering me to "Push! Push! Push!!" The time he had to encourage me across a stream deeper than I was comfortable crossing while descending a 14er... while lightning was chasing us back to our car. The time he coached me up an arch in Rattlesnake Canyon when I had never, ever rock-climbed.

"You can do this!" I kept telling him. "You've got this! I believe in you!"

I silently prayed. Oh, how I prayed. I begged God to please not let this be the end of his cycling. It's his only remaining passion. Please don't let him give up yet. Please help me to get him back on his bike. I know he can do this.

Meanwhile, the temperature had dropped about 15 degrees, and the wind had become pretty furious. Such conditions do NOT help anyone get back on a bike. Lizard finally asked if he could have a hot chocolate with almond milk if he was able to get back on his bike.

2023

"Of course! The perfect reward!!! Now let's try to get back on the bike. I think you can do it if you stand on the curb."

It took a while, but Lizard got back on his bike. And he rode all the way back to the car. And around the parking lot three times before announcing his legs were beginning to come back to life. His legs weren't the only thing that came back to life. He remembered, finally, how much he loves riding his bike. Now it's my job not to let him forget. No matter the weather.

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