No, I couldn’t come up with a better title for this post. Once you read it, you’ll know why.

I haven’t written in a while and that means both personally and professionally. 2019 introduced a series of unfortunate events into my life worthy of Lemony Snicket. If you’ll indulge my whinging for a moment or two, I’ll tell you why.

January 2019. Life is good. I’m working on edits for Book 2 of my series which I’m absolutely certain will be coming out in May. I’m looking into attending two writing conferences, Avon’s Kiss Con in Chicago and Book Lovers Con in New Orleans.

And then, one day my oldest son stops by for supper and announces that he’s getting a divorce and moving back home. Like a cheap GPS my brain goes into “recalculating” mode.

February 2019. My husband hasn’t been feeling well and I finally convince him to book a doctor’s appointment. It isn’t until the end of the month, after x-rays, CT scans, and multiple lab tests that we are (sort of) told that he has cancer. What I mean by that is that we saw a word we didn’t understand on the online results for one of his labs, googled it, and realized he had cancer.

March 2019. Without an “official” diagnosis my husband is referred to an oncologist who schedules another CT scan, an MRI, a stress test, and a PET scan. While sitting at home one night, shell-shocked and trying to pretend everything was normal in front of the children, my husband’s doctor called and asked him to report to the hospital the next day. He was going to be admitted.

April 2019. We finally have a diagnosis and it isn’t good. My husband has diffuse large B-cell lymphoma. The cancerous mass is wrapped around his descending aorta, invading the pleura of the lungs, and reaching back, finger-like, into his spine. There is a “hot spot” of cancer in one of his shoulder bones. His lungs are full of fluid and will need to be drained. He is stage IV. He spends almost 2 weeks inpatient and receives his first chemo treatment on a Saturday.

May 2019. My husband’s lungs have had to be drained six times just so he can breathe. The chemo exhausts him and the drugs give him insomnia. He’s crabby because his beautiful red hair is falling out. Half-way through the month my 93-year-old father in law falls at home, breaks four ribs and punctures his lung. Due to his dementia, the only person he behaves for is my husband. We rush to the hospital where my husband doesn’t dare leave him alone too long.

June 2019. My husband visits his father every day and comes home mentally and physically exhausted. We think his lungs need to be drained again. I get a random email telling me that I will no longer be working with my amazeballs editor at my publisher. Book two will not be coming out until 2020, a year and a half after book one. I have no idea if my editor left the company or if it was decided in a meeting that my book was absolute crap.

Not impressed with 2019 so far.

Several years ago, during a random Wednesday lunch meet-up, a friend of mine who worked as a home hospice nurse slid a book across the table and asked me to take it. She’d gotten it from a patient but never got around to reading it before the woman passed away. Looking at it now just made her sad, but she knew how much I loved books, so she asked me to take it. When I got home that day, the book somehow slid down behind my bookcase and I forgot about it. Two years later, when rearranging furniture, I emptied the bookcase and pulled it from the wall to discover the book waiting there for me.

I read it cover to cover that night and it grabbed me by the FEELS and shook me. I can’t explain the sense of awe I had, the eagerness to turn the pages, and the warmth of feeling seen and understood when I finished it. I walked around with peace and equanimity for days because of that book.

The now long-dead hospice patient left margin notes and underlined passages that I read and re-read for days. I even convinced myself that it was destiny that this book should come into my hands the way it did and disappear and reappear just when I needed it most. I decided it was my duty to pass the book along just as my friend’s dying patient had and just as my friend had. I considered leaving it on a table at a restaurant, at a bus stop, or even handing it to a stranger on the street.

And then I happened upon the Amazon reviews.

Other readers found it “vain,” “precious,” and “self-indulgent.” They complained the book was nothing but navel-gazing without any AHA moment at the end. Reviewers called it a disjointed manifesto about the fear of aging by a rich, spoiled, author. I felt physically attacked by these reviews.

Doubting myself, I was now embarrassed that I’d loved it so much. Gone was the notion of passing this golden nugget around, I put it on the top shelf of my closet next to my old college textbooks. Slowly, I forgot the excitement, the peace, and the book.

This week, while doing some major housecleaning as we make room for one of our baby chicks to return to the nest, I found the book. Pages yellowed, a little dusty, but I recognized it right away. I’m tempted to read it, trying to catch lightning in a bottle once again. But the book and I are both older now, and I fear neither of us has aged well.

Have you ever loved something deeply, truly, down to your bones LOVED something, only to be stunned to find out not everyone felt the same way?

I love spinach, my husband hates it but that doesn’t bother me half as much as other people’s reactions to this book. What once felt like a gift, now feels like a curse – I can’t bring myself to throw the book away, yet I can’t pass it on for fear of the reaction and judgment.

Whoever that woman was (I never knew her name), I thank her for passing the book along so it came into my hands. Perhaps, like the original owner, I’ll wait until I’m on my deathbed to give it away and just hope for the best.

What an odd sentiment. It’s vague, unhelpful with a dash of shame, and a stark reminder that no one wants to hear your problems. Which is, of course, exactly why I’m going to tell you mine.
I suffer from “F” disease. Female. Fat. Fifty. The “F” disease is fatal. Eventually. My physical problems are made more challenging by extra pounds while each of them in their own unique way makes it difficult to lose the extra pounds. When mobility is an issue, even simple exercise can be a challenge. I’ve spent most of 2018 with a cast on my right leg.
I’ve been advised to take naproxen or ibuprofen and drink plenty of water. Prescription pain meds might as well be Bit Coin. I’d like to know where the hell the doctors are who abuse pain med privileges, because my doctors are always sure I can just “tough” it out with aspirin and ice packs. You know, because what I really have is “F” disease.
I was delighted when my cast was finally removed and I was upgraded to “walking” cast. And it was with that ugly, bulky appliance that I made my way to the hospital for an MRI image of the offending leg. I purposely chose a hospital satellite location that had plenty of good parking and 24-hour service for this procedure.
I arrived on time, sans any metal objects, and ready to get to the root of the problem. As I was called back for the MRI, I was informed of two unsettling facts. The building was under construction (rendering the behind-scenes area a dusty maze of plastic draped corridors), and that the MRI machine had experienced what my escort characterized as a “hiccup” that morning. I was led to a small (teeny-tiny) room with two changing closets and a row of lockers, told to remove ALL my clothing and my walking cast, put on a hospital gown, have seat and wait to be called. All of which I did because I’m nothing if not obedient.
Waiting in that very small room, feeling as vulnerable as one can feel while wearing an ill-fitting hospital gown, I was surprised when another patient was led into the room. A male patient, already in hospital gown, took the seat directly across from me while his escort scampered off without a word. Did I mention it was a small room? We were sitting knee to knee. He did the thing. The man s-p-r-e-a-d thing with knees about as far apart as he could get them to make room for what must have been a gigantic ball sack.
I had zero desire to see his dusty old scrotum so I averted my eyes as far as I could without physically snatching them out of my head. I was so relieved when my name was called I jumped up, completely forgetting that I couldn’t bear weight on my leg, and I lurched from the room. I limped down the hallway, through and around the construction zone, never once being offered any assistance. At the end of the trail I discovered that the MRI that would be used was actually located in the back of a semi-tractor trailer out in the parking lot. I wish I was kidding.
Aha, the “hiccup” explained. We had to use the mobile unit. Did I forget to mention it was freezing cold that day? Grabbing the walls for support I made my way over the gap between building and truck, over the metal gangway and into the cargo area for my MRI. I was shivering with cold, everything smelled of diesel and exhaust fumes, and I just wanted to get it over with.
Thirty-eight torturous minutes later, I shimmied off the table, limped back over the gangway into the building and was confronted by an angry old man. I know he was angry because he was yelling that his appointment was “TEN MINUTES AGO” and how dare they keep him waiting. He was wearing a hospital gown but there was no escort with him, he was just there. And angry. And yelling.
Thank goodness I was sufficiently although somewhat immodestly covered. This man (not the same dusty scrotum guy) DEMANDED attention and he got it. Not only did my escort abandon me, his escort came running down the hall. Still without my walking cast, still not offered any mobility assistance at all, I was directed to return to clothes closet, get dressed, and show myself out.
That’s what it’s like to have the “F” disease.