When someone you love is diagnosed with a terminal illness

Let me say this first: as of this writing, my mother is still alive. I’m writing this at a very hard time in my life, and after proofreading this at least once, it reads like an obituary. I’m not going to change what I wrote (although I will get her permission before I share it with anyone), but writing has always been a mental respite for me, and this was the absolute best thing that I could think of to do at the time.

So.

There is no easy way to segue into these things, but my mother was recently diagnosed with amyotrophic lateral sclerosis — more commonly referred to as ALS.

If you’re familiar with ALS, it’s most likely because (a) you know someone with it, (b) you heard about it through the “ice bucket challenge” a few years ago, or (c) you’re familiar with baseball player Lou Gehrig, whom the disease was first associated with due to his widespread fame — in fact, it’s still called “Lou Gehrig’s disease” in most parts of North America.

If you’re not familiar with it, you know about as much about the disease as someone who IS familiar with it because of this scary fact: The cause of ALS is not known in 90 to 95% of cases.

90 to 95 percent of cases.

The other 5 to 10 percent of cases are inherited. But that is a huge chunk of people being affected by a disease that seemingly comes out of nowhere. We sure didn’t see it coming.

At least not at first.

The early signs, or “something’s not right”

In February, 2018, I had my first book published (I promise this is relevant). This was the highlight of my life, and by far my proudest accomplishment to date. I was so proud of it that I took the first copy of the book with me everywhere. I decided to use it like a yearbook, and have my friends and family sign it. Being stationed in Cannon Air Force Base, New Mexico, at the time, I didn’t have a lot of opportunities to go up and see my mom in Erie, PA. It’s about a 22 hour drive (I’ve since made it twice), or a 12+ hour plane ride (there are no direct flights for me into Erie — it’s a 2-stop minimum).

But the first time I saw her (June 2018) after it had been published, you bet your ass that I brought my book with me. I’d saved her a place at the very front.

I made sure that her signature would be prominent inside the one (inanimate) thing that now meant the most to me in this world. I won’t share what she wrote, but suffice it to say that I cried when I read it.

She was also in the acknowledgements because (a) she’s my mom and (b) she read me the stories that inspired me to become a writer later in life. I can still vividly recall the first time she read my brother and me The Lion, the Witch, and the Wardrobe. 

Fantasy would be my preferred genre for my entire life thanks to her.

But when I got to her house to see her, I noticed her moving slower than usual. It looked like she was having trouble getting her right leg off the ground, almost like she was developing a limp or something. I had seen her before in September of 2017, and she had seemed relatively healthy for a *cough*60-something*cough* woman. (Don’t worry, Mom. I won’t give away your …  exact age ;))

But, hang on. Let me back up here and really emphasize this. She was moving noticeably slower than usual.

Have you ever reconnected with a friend you haven’t seen in years? Maybe they’ve grown a beard, or gained or lost a lot of weight, or changed their hair color. You know that moment where the last image you had of them is all of a sudden reconciled with the image you’re faced with, and it’s just jarring? That’s how it felt to see her moving around.

Like something wasn’t right.

She had noticed it herself, and had gotten a cane to walk with. That’s fine, I thought, people her age sometimes have trouble walking. It’s no big deal.

Here’s the other thing, though: my mom has always been strong.

Let me tell you how.

Proud to Serve

This is a picture from when Jeanne Jennings (née Froehlich) enlisted in the U.S. Air Force in 1977. (If it’s a little beat up, I apologize. I carry it with me everywhere in my wallet). Despite having a bachelor’s degree from Penn State University when she volunteered to serve her country, my mom’s recruiter said that they weren’t commissioning officers with her degree at the time. So do you know what my mom did? She asked, “Well how else can I serve?” and she signed on the dotted line to enlist as a maintainer that day.

Before I enlisted myself, I had no idea what a maintainer was; now I know too well (and too many). Hell, I even shared a house with one (Hi Connor!). Two things I know for sure about maintainers: the hours are long, and the work sucks. This is another reason I know that my mother is strong.

When I was a kid, she used to tell me, “if anyone ever tries to make fun of you and says that your momma wears combat boots, you tell them ‘you’re damn right she does.'” She’s just that kind of person. She was the first one to teach me how to do “hospital corners” on a bed (this would later come in handy in Basic Training when I enlisted), and was also the first one to teach me how to salute. Even almost 40 years later, her muscle memory was still that good.

Well, lucky enough for my mom, after making E-3 (you enlist at E-1 and work your way up), she met someone who gave her some really great advice: “Take that degree of yours and get a commission.” That someone was the man she later went on to marry: my dad.

Now I’ve already told you that my mom is strong, but guess what: she’s smart, too. And what do smart people do when they get good advice? They listen.

Mustang

Mom is what they in the armed forces refer to as a “Mustang,” which is someone who went from enlisted to officer. As for why they call it that, I can’t do it justice so I’ll just paste the wikipedia entry right here:

[the term] refers to the mustang horse, a feral animal and therefore not a thoroughbred. A mustang, after being captured, can be tamed and saddle broken but it always has a bit of wild streak, and can periodically revert to its old ways unexpectedly and therefore the owner needs to keep an eye on it at all times. However, since a mustang was formerly a feral and free animal, it may very well be smarter, more capable and have a better survival instinct than thoroughbreds.

-Wikipedia

Almost everyone you ask (especially enlisted bubbas) will tell you that they have favorites — you’re not supposed to say you have favorites (you know what I mean, parents), but deep down, everyone has favorites. And to enlisted guys (and gals), the mustang officers are their favorites.

When she went through Officer Training School (my dad, an Air Force Academy grad, used to joke that “we’d call them ‘9 week wonders'”), my mom immediately distinguished herself. She was named Squadron Leader, and ended up as a Distinguished Graduate — something that only 10% of cadets are awarded.

So believe me when I tell you: my mother is strong.

I very purposely put that in the present tense, because it is accurate. She might have to use a cane to get around, but make no mistake: she is strong.

From “Something’s not right” to “Something’s wrong”

We Jennings children (Me, my younger brother, Matt, and our younger sister, Sara) live about as far apart as any siblings can while still being in America. My sister is based out of San Diego, and my brother lives in Philadelphia, so it takes an act of God to get us in one place at the same time. Well it just so happens that, in July of 1983, there was an act of God: my little brother being born. Yay! So we decided to celebrate this year by all meeting up in Erie to see Mom.

We took her to some of her favorite spots: Lake Erie (where we all talked about the time when we were kids that we got attacked by “biting flies” so badly that at least one of us ran crying into a stranger’s car to escape it), the Greek festival downtown, and finally the package store. (Note: for those of you living outside the Commonwealth of Pennsylvania, “package store” means “the place where you buy the booze”).

I didn’t know it at the time, but my mom needed the cane to walk for more than just old age. I thought it was just something that happened; you know: you get old, and eventually your body starts to wear down. So she needed a cane? So what?

I snapped this picture (above) of Matt and Sara helping my mom walk around during the Greek festival. It made me tear up a little because it was so sweet at the time. Now, when I look back on it, it almost hurts.

Now I know why she needed the cane.

We all had a really great time hanging out together and agreed that we should do it more often. It was great to see my mom, and, after 14 years in the Air Force and 11 deployments, it was a rare treat for me.

But there was something in the back of our minds that told us that something was wrong.

On the last day of hanging out together, my mom sat us down on her back patio in her Erie, PA, house and broke the news to us.

“Kids,” she said, “I’ve been to the VA clinic and they’ve run some tests. They can’t officially diagnose anything yet because there’s really no testing for it, but they’re pretty sure I have ALS.”

I’ll be honest: it didn’t hit me hard then. I had my suspicions (see: everything above), and I think part of me was bracing for it. Deep down, I already knew. It didn’t surprise me, and therefore I wasn’t emotionally vulnerable.

We kids talked with her about it a little, about all of her treatment options and how her life (and ours) would change.

Then we got to the hard part.

The words “terminal disease.”

This, of course, means that there is no cure. I won’t depress you with the outlook of ALS, but I will say this: it is bleak. And it is not long.

Every cloud has a silver lining

Most of you who know me, know that I got out of the military after 14 years of service. What most of you saw was me getting out to pursue my writing career. What few of you know is that I knew I would be getting out the moment that my mom got her diagnosis — no matter what.

I haven’t shared it publicly until now (my mom only did so about two weeks ago), because I just couldn’t find the right words. I found myself talking around it with friends because I didn’t want them to feel bad for me. I still don’t. But my friends deserve to know so that THEY can tell my mom how much they love her. And I know you guys will.

In August, my family had a conference call. We do these roughly once a month, just to catch up on life (like I said, we’re geographically disparate), so this one wasn’t out of the ordinary — or so we thought.

It was during this call that we got the official word: they had diagnosed my mom with ALS.

This time, I cried.

It was real now. I knew the outlook, and I knew that it was terminal. There was no getting out of it. There was no cure. It just was.

“But,” my mom had said on the phone, “now we know that I have an expiration date. You’re not going to lose me suddenly and wish that you’d gotten to spend more time with me.”

And she’s exactly right. That’s the way I look at it: like time to be treasured.

Home for the holidays

It’s no coincidence that my family is all getting together for Christmas. We Jennings usually spend Christmas together no matter what (one year we spent it in Mexico. You guys know what happened on the way home).

This year, though, things are going to be a little different.

My mom is selling her house in Erie and moving in with her brother and his wife where she will be getting a generous grant from the VA to make her house handicap accessible. This is welcome news for us (and my aunt and uncle are amazing for helping her out) because she’s starting to have more trouble getting around these days.

This very night, in fact, I had called to say hi and she sounded dazed or in pain — the way you sound after smashing your toes against a coffee table (first analogy I came up with because I’ve done it so many times). She told me that she had fallen and hit her head. She swore up and down that she was okay, but it’s more than a little scary to hear your strong mother say “my legs just gave out.”

Needless to say I’m going to see her tomorrow.

The kids are getting together once again, and we’re going to help her move out of the house she’s called “home” for almost a decade. It’s not going to be easy, mentally or physically.

I went to see her again this past October, and she and I went out to dinner at a Quaker Steak & Lube (they have this wing sauce called Buckeye BBQ and if you think you know one that tastes better I will fight you) where we took this picture. Here she is, beaming with pride and happiness. Doesn’t she look like a proud mom there?

I’ll tell you why: because she is.

She takes every opportunity that she can to tell us kids how much she loves us, and that we were the best thing to happen to her. With all the crap that we pulled over the years I tend to object, but never out loud. I let her have it.

You know why?

Because she’s strong.

And she’d probably kick my ass if I told her.

-D.L.