18 August 2020

My Turtle Shell

Readers who have visited more than just my snowflake patterns the last 11 years know I have battled depression most of my life. I think I've developed some great tools to manage it, and I felt as if I was ahead of the game.

Until April.

I'd spent most of January and February worrying if I should be leaving Lizard home alone five long days a week after total knee replacement in December that ramped up his Parkinson's. In March, I was one of the lucky ones who didn't lose my job and was able to work from home.

It took a bit of modification to make my dinosaur computer do everything it needed to do for me to be able to work from home. Meanwhile, I could see being at home to take care of my husband was exactly where I needed to be. I am blessed with bosses who want me to continue working from home because it works and because they want me to be able to take care of my husband.

Lizard and I took short little walks on the mornings he didn't have physical therapy throughout the dark and cold days of March. He was beginning to walk so well! He wasn't shuffling his feet, and he had very little knee pain! Regardless what was happening in the rest of the world, my Lizard was going to be able to walk with me again! Oh, man, was I on top of the world!

As April began to grow a couple of degrees warmer, we began taking tiny little bike rides after I got off work each day. I found a secluded trail hardly anyone knew about, and each day, we would try to build mileage. I could see Lizard was struggling; he was having balance and coordination issues all over again, and he seemed to be growing more disoriented each day. We had a dream and goal of being able to ride at least a portion of at least one of this summer's rides, not knowing all would eventually be canceled or postponed, if not virtual. Elephant Rock was the last ride standing, rescheduled to October, but now it's been cancelled, too.

On April 29, we went for a bike ride after I got off work and were able to pedal 12 miles! I was so excited!!! I thought our dreams were going to come true!

The next day, Lizard wasn't able to get his leg over the bike. From that point on, I felt as if he was slipping further and further away as he lost more and more ability and grew more and more disabled. Literally overnight. It sometimes seemed only his shell remained.

Initially, I suspected a change in his thyroid medication on April 26 week may have been the culprit. Our state was locked down, and no in-person visits with health specialists were allowed unless the patient had coronavirus symptoms. We had Zoom-like appointments with Lizard's endocrinologist, who was worried we might be exposed to the virus if we went for a blood test so she could see his numbers. We held out a few weeks, then finally decided it would be worth the risk to go get a blood test because Lizard could no longer walk or sleep.

One week later, we learned Lizard's thyroid was functioning properly and not the reason he was going downhill so fast. I think I had secretly hoped it would be thyroid because thyroid can be fixed. Parkinson's cannot.

We began communicating regularly with the neurologist. We did a few Zoom-like calls, and the doctor had me hold up the phone so he could see Lizard try to walk. The neurologist had me do knee taps so he could try to see Lizard's reflexes. He did the absolute best he could, but some things just can't be diagnosed over the phone.

When the neurologist finally was allowed to begin seeing patients in his office again - only two days a week - he personally called to ask if we could come right in. We did.

He said Lizard's gait did not look like Parkinson's. He said it looked like Lizard was having extreme back pain. Lizard was having so much trouble with communication and comprehension, he couldn't even tell me he had excruciating back pain. All he'd been able to communicate to me, other than he was miserable all the time, was that he couldn't move his legs.

The neurologist said severe back pain would prevent him from being able to sleep, and sleep deprivation could be causing confusion and balance issues. He scheduled us for a nerve test the following week. A week later, we learned Lizard had at least two pinched nerves. We were scheduled for MRIs the following week. Results took nearly 10 days to reach the neurologist. The MRIs showed Lizard has a congenital condition in his back, plus a slipped disc and severe arthritic narrowing of the spinal cord.

We were referred to a neurosurgeon who specializes in minimally invasive procedures, and we were able to get in the following week. We hoped and prayed our solution could be achieved via injection and continued physical therapy. Unfortunately, that was not the case. The neurosurgeon went over the MRI with us, explaining why things had gone so far south so quickly and even taking the time to demonstrate for us which parts of Lizard's mobility were due to Parkinson's and which were due to a nearly severed nerve bundle.

We had only two choices: do nothing and allow Lizard's back and Parkinson's to grow worse, which would eventually lead to Lizard being paraplegic, or surgery, which likely will make the Parkinson's worse but should enable Lizard to walk again within a few days and possibly even get back on his bike one day, although it may be only a trainer from now on.

The key to Parkinson's is to stay active. Lizard has limited mobility. We have to get him active again. We decided to go through with the surgery, even though doing that during this dark time is terrifying. I initially thought I would not be able visit Lizard in the hospital, after being his sole caregiver for 12 weeks. Lizard will be in the hospital for up to five days, and I thought I wouldn't be involved in his care at all during that time. Learning to trust him into someone else's hands right now is such a huge effort for me.

I've always thought I'm not that fragile. But I guess, when it comes right down to it, I'm only human.

I pulled my turtle head inside my shell and turned off all social media. In just three days after stepping away, my mood and outlook improved. I probably needed to do this a long time ago, but I was lonely. I hung on as long as I could, but eventually, I had to focus on Lizard. Nothing else mattered.

Lizard's surgery was yesterday. Waiting for so long meant some restrictions have begun to lift, and I get to visit him in the hospital For the first time in months, we have a reason to hope. He should be able to walk today. I am beyond grateful.

I stepped away from my electronic life for a while. I needed time for a few wounds to heal. I didn't go away. I just wasn't in plain sight. I was behind a chain link fence while damage was being repaired.


  1. Oh dear! I'm sorry to hear that you are going through so much trouble. All the best!


  2. Hugs to you both! Step away whenever you need to. We'll be here when you come back.

    Praying for Lizard's recovery.

  3. I've recently gotten to 'know' you through your amazing snowflake patterns. I appreciate that you share your talent with the world, and that you're also sharing your heart. I wish I had the words to magically make it all well and right for you and Lizard, but I don't. I do know that living this chronic couple life is not for the feint of heart. When my husband was diagnosed with Fibromyalgia, I just didn't even know what to do. We went from a happy, active, touchy feel-y couple, to a homebound caregiver/patient partnership. It tears away at the strongest of spirits when dealing with the day to day, but when major things hit, it accelerates the fear and worry and uncertainty. But when there's good days, it makes them all the more precious. Sending prayers of healing to both you and Lizard - for bodies, minds, hearts and spirits. Know that there are many of us who understand and are here for . Do whatever you need to do to give you rest so you can be there for yourself and Lizard.
    Huge hugs!!

    1. Thank you, Stephanie, for taking the time to comment. I’m so sorry you are going through this, too, but inspired by your cheerful outlook. I hope both of us can continue to take care of our husbands and grow stronger and closer because of it. Hugs right back at you!


Dusty words lying under carpets,
seldom heard, well must you keep your secrets
locked inside, hidden deep from view?
You can talk to me... (Stevie Nicks)

All spam is promptly and cheerfully deleted without ever appearing in print.

If you are unable to leave a comment and need to contact me, please use the email address in the sidebar. Thank you!

Related Posts with Thumbnails