02 January 2024

Better Than Therapy

My office work group Christmas dinner hit the evening of the day I had to rush Lizard to an emergency primary care visit. He was still in unfathomable pain, but he was sleeping. I had let my department head know I probably would not be able to make it, and so I wasn't really expected. I felt guilty because the event was at a very nice restaurant (as always), and my portion had already been paid. I had offered to pay for the food I wouldn't be eating, but the organizer had said just to take care of my husband. It would be all right.

I confess I was a bit relieved to not attend. I'd been stressing since I'd RSVP'd about how I would answer all the "How is he?" inquiries. One of the things I've learned since we began going back into the office is that I'm not comfortable answering that question in front of people who don't know us and don't understand what we are going through. I've learned I have not yet learned to lie: "Oh, we're fine. How are you?"

2009 team photo

Actually, I have now told my first little white Parkinson's lie. I've been calling my mom every week since my dad died. I called her the night of the onset of Lizard's emergency medical trauma. Because she would have worried if she didn't hear from me. She would have (rightly) assumed something was wrong, and she would have worked herself into more physical discomfort than she already shoulders worrying about everything she can do nothing about. My dad had asked all us kids at one point to not burden her with our problems because it was literally killing her from the inside out. She's going through her own difficult medical issues right now, and I didn't want to cause the ulcers to be more painful than they already are. "We're just fine, Mom. How are you doing?"

I'm still prone to tears when anyone asks about Lizard, and there are even friends don't get the full story when I respond. Sometimes, "We're doing the best we can" is the best I can do. I don't want to spoil someone else's cheerful or festive mood, and I don't want to share details that weren't really wanted.

One of my close friends from church recently commented, "You're not an asker, so I know I'm going to have to pry out of you if there is anything I can do to help."

I DO want a shoulder to lean on from time to time. And I do want to be able to ask for help when I need it. But sometimes, details aren't secrets I care to share. There are a couple of things we still haven't shared yet with the neurologist.

While we were experiencing one of this year's best Christmas gifts, a white Christmas Eve, I accidentally stumbled upon an online Parkinson's caregivers support group. I immediately applied and was notified of my acceptance on Christmas Day. Within a few minutes, I understood all too well I am NOT alone.

In fact, there are more than 18,000 members in this group. All going through various stages of what we are going through. I no longer felt alone and isolated. And yet, it broke my heart that more than 36,000 people are going through exactly what we are going through. It just doesn't seem fair.

I couldn't help but take a break from the snowflake photos I'd been editing since 2 a.m. (We have lots of sleepless nights these days, weeks, months... and the recent medical trauma really impacted both of us.) Within about half an hour, I'd read at least a dozen stories very similar to what we are going through right now. I'd read about women who'd lost their husbands days or hours prior. I'd read about fathers and mothers who no longer recognized their grown children caregivers. I'd read about a woman who had been invited to a neighbor's for Christmas Eve dinner and then felt uncomfortable (a) attending something fun alone, (b) "celebrating" with people living everyday lives, and (c) answering questions in a room of strangers who mostly don't really care and whom she probably wouldn't see again. Bingo!

This woman had posted about ninety minutes earlier, and she already had 145 supportive, understanding, helpful and loving comments. Obviously, I felt as if every single one of those responses was written directly to me. I learned SO much! I have known all along I have to take care of me so I can take care of Lizard. Sometimes, I'm not very good at remembering that key point.

First and I guess foremost, there are places I can turn that are free of snarky, mean, ignorant and heartless comments. Second, things may seem bad sometimes, but, as Lizard has been trying to keep saying for the past five years now, there are others who have it much worse than we. And then there's all the educational stuff.

It's normal to feel guilty going out without my spouse who can no longer tolerate social situations. It's okay to be tongue-tied when asked how Lizard is doing. It's okay to cry when asked. It's okay to say everything's okay. It's eye-opening to say, "It's a progressive thing, and it's progressing." Some bold caregivers even educate their unaware acquaintances: "Parkinson's never gets better. It gets worse. And it will keep getting worse." It's normal to want to avoid social situations. Everyone has unexpected and unpredictable stumbling blocks that pop up out of nowhere. All caregivers are exhausted. And it's very true that not only am I watching the person I love most die one day at a time, but pieces of me are dying, too. There have been many times when I feel as if my life as I knew it has ended, and I'm not sure how I got here. Now I understand there are too many others who feel exactly the same. We've each given up our lives to care for someone who means the whole world to us.

Probably something every caregiver takes a long time to learn, but it's okay to take care of me, too. It's okay to need a timeout. It's okay to cry. It's okay to mourn. It's okay to be afraid. And it's okay to pick myself back up, dust myself off, just keep right on powering through.

One thing some of the other caregivers seem to be missing, I wish I could share to help ease their burdens. I know there will be a day when Lizard is whole again, and he will once again be the guy I married so long ago. I know the day is coming when he will no longer suffer. I hope one day I might be able to feel confident enough to share with others who don't know this in a non-offensive way that there truly is light at the end of this seemingly endless, dark and opressive tunnel.

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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)

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