Of Mice and Mom... and Managing MS. The summer of 2020...

I have heard several people say to me recently, “We haven’t heard much from you on Facebook this summer. I guess you were busy.”  When I’m quiet that long, never assume I’m busy. I may not want to talk about it, but extended silence from me is never a good thing. I’d like to say it’s the old “if you don’t have something good to say” adage, but if I’m honest, it was so much more. Here is what happened in the silence.

Let’s begin with some annoying, but potentially comedic relief. At some point over the summer, I left open the camper door one too many times during the day. Before I moved back into the camper, I had many projects to complete, including a cabinet door that needed fixing and was left open. After it was fixed, it stayed securely shut. Apparently, it now also securely contained tiny stowaways. Not much later, my waking nights were shared with tiny feet running in the crawl space between the ceiling and the cabinets. Not loving traditional mouse traps, I opted for the more humane kind. I spent each morning for several days making trips to the area above the brook down the road to free my interloping camper mates. I knew there was one left. It was my hope that the long trip to PA to see Kari in the August heat would result in a nasty smell that would eventually dissipate, and I would be done with it.
 
I thought it worked. Not a peep. Not a trace. Not even a smell. I should have known. Suddenly, while reaching for a spice bottle there was the tiniest of tell “tail” signs. NOOOOOOO! The trap was rebated, and off to the brook I went. Its prey was bigger than I expected. “Well, aren’t you the big Mama,” I said, as it scurried off. As the words still floated in the air after speaking them, I took in the weight of their meaning. I was not wrong. As if on cue, the next release was a tiny little thing that hardly knew what to do on actual ground. Flash forward I don’t even remember how many days. I have lost count of how many trips I have made to the brook. After three trips in one day, I started just taking them to the top of the driveway. I seriously doubted these tiny things that didn’t know what to do on land, would know how to get back in. I think Meg ate one after a middle of the night release when I couldn’t take the scratching and gnawing on the trap any longer. Meg had disappeared in the darkness away from my flashlight’s glare, and came back licking her lips with the same guilty look she had on her face after she ate one of the butterflies I released last year. I don’t even want to know.
 
I lost count after 12. They often have to be shaken out of the trap, sometimes alone, sometimes in pairs, and twice with a threesome. All I know is that I’m over it. I bet there have been at least 20. My camper had been my only sanctuary from the madness that was inside the house. Now, this too, held the same level of insanity. It’s either the biggest litter on record, or there are two moms. I can’t even go there….. FYI, I just stopped writing to shake out another capture I heard chewing on the trap. I had released one before I started writing. I’m pretty sure if Mickey Mouse walked up to me right now, I’d punch him. They have until I take Pemberely back to OH to her winter home before I close the damn thing up with a mouse bomb (if there is such a thing) and hope it airs out before spring. 

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​That was the light part of the summer. The rest has been a more difficult opponent, and that’s saying something. Besides the whole Covid is scary and we are all housebound thing, rest of life has pushed me to the edge of my “I got this” brink. At the very end of March, I made what was supposed to be a quick trip to PA to see Kari and Pat’s new house and pick up my camper in OH, when the world imploded with Covid. My one week quick trip quickly spiraled into several weeks, as I waited for Kari’s covid test when scary symptoms emerged after I left her house.  I quarantined and 10 days later, her test came back negative, but even the hospital staff thought it might be a false negative given her symptoms. I waited to see if things would ease in the world, (they didn’t). I waited for the melting road in NH to harden, so I could at least safely drive the camper on it (it finally did). The first of May, I made my daring escape to return to NH. I had been here a week, when my 88 year old mom passed out in the living room and fell. There were thankfully no broken bones, but many questions, and several days in 2 different hospitals trying to find answers. Dehydration. UTI. Blood pressure meds were all initial concerns. Those morphed into seriously low sodium levels and issues with her kidneys. It’s now mid September, her primary care doctor has disappeared from the area, and I’m still waiting for answers, though I at least now know why he never returned my messages.
 
For the first few weeks, I ran on adrenaline. Great stuff, but when it leaves (which it always does), it leaves you lifeless. It was like last year with my dad all over again, but now there was only me. Only me, with TM and MS, and without the treatment I should have had in March because it wipes out my immune system (it didn’t seem like a good idea at the time). At first, I took charge! I have since learned from Brene’ Brown that this is a classic first born coping strategy…a not so necessarily good one. It was all I had. Mom was more of a pro at the helpless reaction. Brene’ taught me about that too. Here’s the thing, Mom and I each had our polar opposite reactions because, well, we are totally opposite. 

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​That can make caregiving complicated. Complicated can be stressful. Stressful is rarely fun. You know what doesn’t respond well to stress? MS. I waited for my legs to shut down on me as they had in the past. Amazingly, their decline didn’t come until just recently after a med I have used for 2 years suddenly got lost in the mire of insurance recertification, causing it to be missing from my med box for the last month. It only works while I’m taking it. When it stops, so does its benefits. And my legs. Ugh.
 
Instead, I spent this summer fighting doctors for answers to brand new symptoms, like the spasms that were happening in my chest (diaphragm) that would wake me up in the middle of the night gasping for air, or the fact I could no longer swallow pills, and the fact that after every meal I would have such horrible indigestion, that I stopped eating solid foods. The 15 pound weight loss over a period of 3 weeks as I was forced into a liquid only diet was appreciated, since I’d gained that much at the beginning of the quarantine period, but it was a hell of a way to lose it. I have my own theories. One doesn’t live with rare and chronic illnesses without learning how to do deeper searches into medical journals when looking for answers. Tests confirmed only my hiatal hernia, which I already knew was there. There still aren’t real answers, just more theories, many pointing back to MS as the diagnostic catch-all, this time from the medical staff, and the growing list of doctors whose names are attached to my records at Dartmouth. So far, they tell me it is nothing life threatening, just more life altering.
 
Like learning to sleep bolstered by pillows to keep my body from sliding in the positions that trigger the spasms. Learning to breath in such a way as to calm the spasms when I wake up with them throughout the night. Learning to manage my days, when my nights are spent more awake than sleeping. Learning to structure meals to lessen symptoms.

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​The biggest learning has been managing my days fighting the anger and resentment that now refuse to be pushed down, as I was forced to admit I was not putting my needs first, and that I wasn’t sure I was even physically, or emotionally capable of doing so. It is a somber realization when you realize that you are not only alone in caring for another person, but that when push comes to shove, you are alone to care for yourself, as well. There was one sleepless night when I actually got out paper and made notes for anyone, if something were to happen to me. What I was doing for mom. What I did for the dogs. Dear God, who could care for the dogs if I was unable?! With covid, even local boarding businesses were closed.
 
Each day became a different variation of this dance. Without being too harsh, let me just say that it is one thing to care for someone who knows that they need help, and trusts others to do the caring. Some folks have a hard time doing that. Especially if they are developing memory issues, but refuse to acknowledge (or remember) that possibility. Or when they are facing other natural aging body issues, but are quite sure those issues should, and do not apply to them, despite symptoms and test results stating otherwise. Or my favorite, are 50’s role raised, where men make decisions and women do the leaning. I’m trying to share this politely, but there is a limit to how much one person can take. When told one day that I might not be so tired if I didn’t insist on being outside and doing man’s work like caring for the pool and working in the yard….., well, it’s a wonder my head is still attached.
 
That has been my busy. That has been my quiet. That has been my silence. Sometimes silence screams.
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Have I handled my summer well? Um, no. Does fall or winter look any better. Hardly. Don’t even ask. I can’t. But there is one thing I accomplished that I do feel good about. Yes, mom and I are still both alive and usually speaking to each other. Yes, the mouse battle continues and emptying naïve, annoying, baby mice feels better than would be the same, probably more trips, of dead ones in traditional traps. But I actually found something important in the last 3 weeks. My voice.
 
Ok, to be honest, it’s really Purple Moose’s voice. No, don’t reach for the straight jacket. I haven’t seen Purple Moose crawl out of the camera bag and have a conversation with me. Yet. But I have heard his voice, at least the way it is supposed to be in his books. When I began the Purple Moose books, they were for my kindergarten students. I wrote them to engage the kids. To teach them and to make them laugh. When they morphed into a more polished version, I became insecure. I sent drafts far from finished seeking encouragement or approval or something that said what I was trying to do was worthwhile. Problem was, I used the word proofread. That is a word that should never be used until you have a completed manuscript you are confident with. It should never be used when you mean….what do you think? Truthfully, I have to ask myself did I really want to know what anyone thought?  I mean, of course I did, but enough to listen to all the comments and change the way the books are written to match the typed replies, instead of the story told in my head? Apparently, the answer was yes, because that is exactly what I did. The stories I ended up with now met with someone else’s approval, but they were not written by me as I had intended.

Before I left PA/OH on my one week late August escape, I started on Purple Moose Learns About Apple and Makes Apple Cider. I’d had the pictures since last fall. I was supposed to be writing it and Fall Leaves so they were ready to go for Autumn tourists this year. But there were no spring tourists and no Maple Festival. There was no release for Purple Moose Goes Camping in May, and it sucked away the motivation to create more. But fall was coming. Life was a smidge more normal. Clay and Paula would be making more cider. It was one thing to let myself down, quite another to let down friends.
 
So, I began to write in earnest. And this time, I wrote the way the stories were told in my head. The way Purple Moose whispered it to me on our adventures. When Apples was done, the mania extended to Fall Leaves, a book I’ve been trying to write for almost 5 years. I finished them both. And when I read them aloud, they both finally sounded right. I’m still not sure I’m in love with all the pictures, but that’s ok. I’ve learned my next investment will be a large, separate monitor I can use to better work with the pictures at their full size. Until then, I’ll do the best I can. I’ve now gone back and completely rewritten Purple Moose Goes Camping, and Maple Syrup is open on my desktop with edits beginning. That will need a major overhaul. I must have been REALLY insecure on that one. Good grief. For now, I’ll sell the copies of what exists and hope kids can see past the style differences to the basic message Purple Moose is trying to share. Eventually, they will all be reprinted as a second edition, and marketed in a sharp looking basket with the stuffed moose by their sides. It feels like a new beginning.
 

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The take away for me, is that in listening to Purple Moose and following the vision of how I want the books to be, I have begun a journey I hope will someday cross over into even bigger areas of my life. I have hope that one day I can face the “guilt demon” that I battle regularly that controls me with fear. Real life is a tad more complicated than writing a book. Caring for loved ones can be a burden and a blessing. Sometimes one more than another. Sometimes, both at the same time. But caring for yourself should be a requirement. It should not come as an afterthought using whatever is left over. If I can listen to Purple Moose’s voice and help make him all he’s supposed to be, perhaps I can begin to do the same for myself. It’s a very long road that I’m just starting down, but hopefully I am at least on the right path.

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Epilogue

​The day after I wrote this, I awoke to find three tiny littermates crammed into the mouse trap. I still find it hard to believe they were finding their way back in, but I was not taking any chances. I got in the car and drove down the road to release these siblings near the brook. Knock on tons of wood, I have not caught any since. Whether they were getting back in or not, I will never know. Not without painting their tails to be sure (Just a thought…). I hope this is the end of what I’m sure was at least 2 dozen babies. The cabinet has been quiet. I pray it will stay that way.
 
Mom has an appointment with a new doctor at the end of the month. Hopes of more help are my deepest wish. Time will tell.
 
I’ve actually seen my neurologist in person and his tests and the blood work say I can no longer afford to delay treatment. My progressive MS is not social distancing. The time for self care is now. My desire is strong, but the follow though is weak. Making choices to save your body from long term damage, knowing it could cause life threatening complications, if I got sick, is a hell of a choice. So is knowing that caring for yourself means you can’t care for a loved one (i.e. the guilt monster). If I am quiet, you now know why. I’m searching for answers, but the answers aren’t multiple choice. They are going to require a written essay, and I’m pretty sure I don’t even have all the facts I need to complete it. But the pencil is in my hand, and I’m trying to put together the answers I have to begin to write. That is a start.
 

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