The Long and Twisted Road

Editor's Note: This blog post originally was written (but not published) 6 October 2020. The above video last week reminded me of what I wrote back then. I thought perhaps it might be time to read about the experience again and perhaps dust off the memories a bit. After reading what I wrote when I was still depressed and grieving, I decided to let the post below stand as is. I cannot change how I felt back then. I have changed how I feel now. I hope by sharing this experience, others who face darkness will find whatever it takes to reach for the light. Never give up. Better days will come. I promise.

When I tumbled over the emotional edge last July, I really beat myself up over being such a wimp and for allowing the words of others to control my thoughts and actions. I stepped away from my online life for six or seven weeks and generally felt better for doing so. Yet I also repeatedly chewed myself to a pulp because I wasn't stronger.

Just as I began to stick my head out of my turtle shell again in mid-August, life whacked me out of the ballpark again in a way that so devastated me, I experienced a helplessness I haven't felt since I was a depressed teenager, way back before therapy was so easily and widely available.

I've been extremely hesitant to share the experience, even in my journal, for fear of someone misinterpretting it and intervening in a way that might make things worse. I've got a big, bad skeleton of a familial experience lurking in my closet. A closet I try to avoid at all costs to prevent that merciless monster from terrorizing me again.

That said, let us step gently into the snowflake-crystalized time travel machine...

Once, in literally another century, many light* years from here and now, young, unwrinkled and once-gymnast-wannnabe Snowcatcher had a crush on a totally unworthy and undeserving but sports-minded (particularly cycling) aficionado (insert desired alternate noun here if that one doesn't suffice). Said unappreciative, unresponsive and noncommittal male laid down the law from the beginning: "I cannot be what you need me to be."

*The term "light" in this circumstance represents knowledge and experience, not actual time travel.

Snowcatcher, who was raising two older adopted special needs ragamuffins as a single parent and did not want to provide them with revolving-door dads, thought she had complied with the law by emotionally committing to expect nothing other than friendship and an activity partner. Literally, as requested, no strings attached. Snowcatcher, who had vowed not to date while raising needy kids, naively believed she'd be okay playing chess in a nursing home three or four decades into the future with someone who possessed not even basic concern for her well-being nor her children's happiness.

After a couple of years of hiking and biking, all with social and emotional distancing amazingly prophetic of the new norm of 2020, Snowcatcher and her "friend" had a falling out after he made belittling comments to her children, as well as telling a mutual friend, "The only one who wants to spend time with me is my dog," which, of course, made Snowcatcher feel lower than a canine.

Many journal entries later, Snowcatcher decided the best way to move forward and recover from and thrive after termination of said "friendship" was to announce (prior to the invention of social media, which means said announcement was achieved the old-fashioned way, by writing letters and emails to interested parties she hoped would hold her accountable) that she was done pining over someone who would never care about her the way she cared about him. She went on to list all the painful experiences which had transpired while waiting for said boy to become a man, confessing she had broken the law and nurtured hope that one day the "friendship" could grow into something meaningful. She realized her mistake, and she was letting go for once and for all. She intended to hike and bike with her two kids because she was strong enough, brave enough and good enough. She didn't need the added baggage of someone incapable of feeling.

As often happens in the world of written words, recipients of said communication didn't get past "letting go for once and for all" and, in a desperate attempt to save Snowcatcher from herself, contacted authorities to perform a wellness check, fully expecting to find Snowcatcher had truly ended it all, but not in a productive way.

Three days after said letters were mailed, while preparing for the longest bike ride she and her children had ever pedaled, Snowcatcher answered a knock on the front door and found an entire squad of uniformed officials who needed proof she had no suicidal, or, worse, homicidal/suicidal plans before leaving. Such proof was effectively produced by allowing said investigators to read emails (and, um, please make sure to read beyond the second paragraph!!!) and personal journal while she sat red-faced on the couch, kids on either side clinging to her arms in fear of being forcibly removed.

Snowcatcher really had to work up courage to exit her front door to fulfill the morning's promised bicycle ride with the kids, knowing all the neighbors would be gazing out their windows in curiosity after such a dramatic blue and red light display.

She succeeded. She took the kids on a 50-miler, and not long after, she took those same kiddos to places better than Disneyland. Moab. Yellowstone. Seattle. Alaska. The Mormon Trail. Alone. She never asked another guy to accompany her on any of her parenting adventures while her kids were still kids. She learned her lesson and never forgot. Some scars remain to this very 2020 day. Hmmm... perhaps there is some Halloween snowflake inspiration in there somewhere...

I was depressed back then because I thought I'd be alone forever. Guys generally don't like someone else's kids. And my kids are genuinely someone else's kids.

Guys don't like indpendent girls, guys don't like spiritual girls, and guys don't like girls who can think for themselves.

I was depressed, but not suicidal. I was depressed because my kids were often in need of more than I was able to provide, plus, they had (and sometimes still have) emotional baggage of their own that I couldn't fix, no matter how hard I tried. I was depressed because I didn't get enough daylight, but I didn't know that then.

And then I was depressed because I had to open up my personal journal to let total strangers, who would be writing a detailed police report, read things I hadn't shared with anyone. I felt naked. I felt betrayed. It was truly one of Life's Most Embarassing Moments. More than a moment, actually. The journal-reading lasted about an hour, so 60 or so of Life's Most Embarassing Moments. Ugh. Still depressing to think about.

And now that I've revealed why I'm terrified of sharing how low I can go, I'm trying to work up the courage to keep going with this blog post instead of hitting the delete button.

Both Lizard and I hoped his most recent surgery might help him regain at least a degree of independence. We hoped his memory would improve. We hoped his balance and coordination would improve. We hoped he would be able to sleep at night. We both hoped like crazy we might be able to arrest what we thought was the rapid advance of Parkinson's and get him active again. Activity is the key to Parkinson's. If you can't walk, you can't really be active. There are activities you can do, but it's more difficult to maintain a positive attitude when all you can do is sit, and even that hurts.

Two days after Lizard's most recent surgery, he was able to do a couple of things he hadn't been able to do since April. He's still for several more weeks on a rigidly strict BLT diet - no Bending, no Lifting, no Twisting - but he's trying hard every day to do things he can do without violating his healing restrictions.

He was admitted into acute rehab three days after surgery. He didn't want to go. He wanted to go home. I talked him into trying the rehab because I thought he would benefit from the intense occupational, speech and physical therapy I could not afford to have provided at home. We had exhausted his outpatient therapy allowance for the year, and I wasn't sure I would be able to help him with the PT he needed to fully recover, mostly because I spent the last three months of his outpatient PT waiting (and sobbing because I wasn't allowed to go in) in the car, unable to watch what kinds of exercises and stretches he was being taught. I'd done some internet research and knew how to help him do leg and arm stretches without BLT, but I didn't have confidence I could get him back on his bike again, should the healing progress to that point.

I got him checked into accute rehab, then took a load of clothes out to the car. When I returned, I thought I would be kissing him goodbye and assuring him I'd be right back, driving home to shower and grab fresh clothing, then picking up Taco Bell for dinner because both of us had grown weary of hospital food. Instead, I found him in a bewildered state. I was gone only a few minutes! In that short time span, they had put him on his alarmed bed to demonstrate how it worked and had told him the alarm would sound if he got up, and they had seated him upon an alarmed chair, where he was instructed to stay. He could push a call button if he needed to get up, and someone would come to help him. He'd been getting up by himself five floors up. He'd been able to walk around his hospital room with a walker, then with a cane. Now he would be required to use the walker until he was passed off on the cane, and he was not allowed to move without permission.

He was still pretty heavily medicated at this point, and we didn't yet know if the trauma of surgery had ramped up the Parkinson's. (It did.) To him, his dyskinesia setting off the alarm made him think he was being punished for not being a good little boy and sitting still on his chair. He was so traumatized, all he could tell me is they had put an ankle monitor on him. I had no idea this was going to happen, or I never would have talked him into prolonging his stay. Live and learn...

I looked down at his leg and saw a wire that lead up to a box hanging from the IV pole. I assumed that was the alarm. It was very close to his head. I was horrified. They hadn't disclosed this little nugget of information prior to us signing his life away. Literally, he gave up all rights. All. Just so he could have therapy.

I know the hospital has to keep patients safe. I know everyone is trying to keep from being sued, especially now in this day and age of ambulance chasers beefing up their staff by 300% to handle all the wrongful death/loss of business/failure to protect from virus/wrongfully infected lawsuits. I briefly considered not going home because I wanted to argue with the staff about their choice of alarm on a patient who doesn't really understand what's happening. If I didn't go right away, I wouldn't be able to get back into the hospital, a blessing I cherish because not all hospitals are allowing visitors, much less overnight guests. And there was no way I could let Lizard be on that alarm all by himself all night long.

Lizard looked so horrified and scared. He had those, "please get me out of here" eyes. I felt so awful. I asked him if we could hang on until the next day. He directed me to go get clean clothes; we both needed them. We'd expected to be in the hospital only three days. We hadn't planned for longer.

I kissed him and cried all the way to the car. I ran all the way to the car. In upper 90s heat and thick forest fire smoke. I drove faster than normal to get home as quickly as I could, and I cried the entire way. At home, I didn't take time to shower. I just threw the dirty clothing on the bed and grabbed three more sets of clean clothing for each of us and a box of Count Chocula, his favorite breakfast, then ran back out to the car and drove as fast as I could to get back, praying the entire way.

When I got back, Lizard was still sitting on that same chair and looking more forlorn than I think I've ever seen him. This stabbed me in the heart because of all I felt and experienced on the way home. He was in his medication down time, and he was beyond miserable. Again, I saw the cord down at his ankles, and I thought he'd been tethered. I was going to throw a fit. Never had I seen such cruelty in a professional place. (He wasn't tethered, but I didn't know that until later.)

I told him to get up as often as he wanted. I told him, "We'll show them just what Parkinson's is and make them do all the running they must think they are so good at. You get up as much as you need, set off that alarm again and again and again."

He looked frightened and hesitant. I told him they needed to see just how bad this is.

He stood up, and the very loud, piercing alarm went off near his head. Now I understood. It wasn't an ankle monitor. It was worse.

His dyskinesia had set this motion alarm off six times while I was gone. The look in Lizard's eyes sent me over the edge. The nurse, of course, came to the room fairly quickly, and I unloaded. I told him their friggin' alarm is inhumane to use on someone with involuntary movement. I told him I was taking my husband home. He said I'd have to bear the financial responsibility for a minimum of five days, which probably would have cost us our home, if we left because the insurance wouldn't pay that portion if we left. I told him I don't care. I'll take that financial burden to protect him. I did not intend to put my husband in prison. He'd already been through enough. It is my job to preserve what dignity still remains. Certainly no one else is going to fight that battle for me!

I was offered a copy of hospital policy, which I did not need to see, and the director of nursing later apologized for the miscommunication in not informing us about restraints ahead of the game. After what felt like hours of arguing (but likely was only a few minutes, and I did try to be professional, except for the tears, which were beyond my control at this point), they said they would remove the alarm if I would stay right next to Lizard and if he would promise to hit the call button if I was not in the room if he needed to get up for any reason. Needless to say, I slept* in a chair right next to his bed for the next four days (except when Lizard wanted to switch positions with me because the bed was horribly uncomfortable to him).

*If you could call it sleep.

The therapy was wonderful. The staff was awesome. They didn't kick me out. They treated both of us as if we are valued customers. Yet I will NEVER agree to acute rehab for Lizard again. I plan to contact the Michael J. Fox Foundation and the Davis Phinney Foundation to try to enlist their help in lobbying for a more humane and compassionate form of restraint for patients with involuntary movement.

I hope there is a purpose to all this. I hope what we went through will help me help others avoid the suffering Lizard experienced. And I will always be grateful I got to stay with Lizard all 14 days.

But there is an untold portion of this story. The part I've been afraid to share because I don't want another visit from uniformed authorities trying to determine if my over-the-edge reaction warrants intervention. The secret that forced me to seek a way to ground myself so I can lift myself up when I'm so low, I am not sure I will ever see the light again.

During my drive home from Day One in acute rehab, I questioned - seriously questioned - what purpose all this suffering and turmoil serves. Surely it would be better to just catch the stupid virus and be done with 2020 altogether. I would have a long-awaited reunion with my grandmother, my sister and my brother. Lizard could have a wonderful reunion with his brother and his grandmother. All this suffering would be over. His suffering would be gone. Kaput. Finito. He would no longer have Parkinson's. He would no longer be getting worse every single day. We could both experience joy once again. We could bask in freedom again.

For 45 minutes, I saw no reason to keep going. This world sucks, and it's not going to get any better. I could see no purpose in what we were going through. And how would Lizard ever forgive me for putting him in "prison" while he was at his most helpless point. Why did I do this to him???

Many things have helped. First and most important is I prayed on the way back. I knew I needed to curb those thoughts, and I knew I needed to be strong for Lizard. If he saw me in the state I'd been in when I was driving home, it might send him over the edge, too. I had to pull myself together.

The next three days seemed to drag on forever as Lizard had to earn every molecule of independence he could muster. I had to prove over and over again that I could be trusted following Lizard to the restroom and helping him shower with a gait belt, all while being carefully scrutinized by total strangers. Yes, doctors and nurses are heroes, and for them, I am so grateful. But we are human, and there are things every single one of us do not care to share with strangers. Being forced to do so is humiliating and degrading. I had been Lizard's sole caregiver since December 2019. I know how to take care of him. I know how to help him. It's hard enough for him to let me help him with the most personal tasks. To be forced, more than once, into letting someone else do those things is demoralizing, both for the patient and the caregiver.

Sometimes Lizard would get discouraged because he felt like this torture, which is exactly how he described it, would never end. He thought they would keep finding reasons to keep him longer and that they would never let him go home again. I would try to find humorous ways to remind him how much he helped me after my back surgery in 2004, before BLT even existed. Before we could have 60 outpatient therapy visits per year just for asking.

Each time he grew frustrated at the lack of freedom, I'd remind him of how much he helped me. Soon, we'd both be giggling about something foolish I tried to do too soon after my surgery. Laughter truly is the best medicine.

When we finally got home, I realized how traumatized Lizard had been and that it wasn't going to go away just because we have our privacy now. This is going to haunt him for a while. (May 2021 Note: And in fact, it still haunts him today.) It has destroyed a portion of his trust. It devoured a huge chunk of his spirit. Sometimes he feels as if he was robbed of 11 days of his life. And, of course, healing isn't going as fast as he would like. I remember all too well my own "Oh, my aching back!" days that seemed neverending!

I realized how blessed I am that I didn't get stuck with that 1990s jerk guy. I realized how blessed I am to have earned the love and respect of a man who faithfully is my best friend and who even tries to be a dad to my grown kids and a grandpa to all 18 grandkids with whom we have contact. I realized how blessed I am to have a good job so I can continue paying the house payment. I realized how blessed I am to have insurance to cover a big portion of our medical expenses. It's tempting sometimes to complain because I did get stuck with quite a few bills. I have to remind myself there are people who have no health insurance. There are people who are not seeking the health care they need right now because of COVID. There are people with diagnoses that aren't going to allow a few more good years, or even months or days.

I realized how blessed I am to have friends who continually check up on me and know when I'm wearing my fake smile. I'm even blessed to have people who might report me if they think my thoughts have crossed into the danger zone. I'm blessed to have a chance at a renewed life with Lizard, even if it's going to be different than what we had before he was diagnosed with Parkinson's.

One of the things I've been doing since I was a depressed 16-year-old is to keep track of my blessings. Back when I was about 22, I started a physical list and fell asleep after listing number 84. I've added many more things to that list over the years. I try to add to it regularly, and daily when I'm down.

For the last few weeks, I've been trying to focus on Lizard's improvements and achievements. I'm trying to record at least one thing he does with his renewed body each day. Two weeks after he was released from acute rehab, he began sneaking up on me from behind to hug me, something that hadn't happened for nearly a year. I try to keep in mind he will be healing for a very long time. My back surgery was in 2004, and I still see tiny improvements every now and then. Things are going to get better. I know they will.

I signed up for an eight-week self-reliance workshop via Zoom (or via regular phone call sans video when I don't have adequate internet signal to connect to the class conference call). Imagine my reaction when the challenge last week was to record in my journal one thing for which I am grateful each day. That was a super easy box to check off!

I just read a recent blog post by Roger Allen, who not only performed the knot-tying between Lizard and me but whose blog also has lifted me numerous times throughout the last few years with relevant messages and suggestions for managing wayward emotions. His blog post motivated me to write this blog post. I'd been contemplating sharing my nightmare for a while, but I didn't know if I could share everything I wanted to share. (And it's still not written in stone until I hit the publish button!)

Fear motivated a lot of what I've been experiencing this year. Fear broke down what resilience I had and destroyed any lingering hope. Fear won a couple of rounds with me in 2020. But fear will not win the game. If I let it, fear will make me stronger. If I keep trying to improve my attitude, fear will find me a formidable enemy.

I'm going to make it through this. I'm going to help Lizard make it through this. I will find reasons to smile, even when it feels like smiles don't exist.

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