Well, here I am, with a shiny new title: widow. A widow at 44-years-old. In earlier American society, I might have otherwise been considered a delicate, fragile being…hah! This being said, I’ve had a lot of “titles” in my day – some unflattering – but I’ll wear the “Young Widow” title with pride. I ordered a crown on Amazon, but that hasn’t come yet. BTW, I’m sarcastic, but I’m also forever changed.

I’m Laurie, (Lau) a Beantown-based public relations and marketing professional living in picturesque Essex County, Massachusetts. For the record, the clams are okay, (for the tourists) but truth be told, I don’t like them. Never did. Who likes eating sand? That’s what you bite into when you eat a clam belly, in case you didn’t know. Nah, no thanks. I’ll have some fried Haddock, though…yum!

A vibrant, loving, handsome and kind man with the warmest smile EVER died a few weeks ago due to a weird mutant gene that went banana balls somewhere in his maternal history.

To recap, I’m 44, lover of the written word, hate clams, and…I’m a widow. I’m still adjusting and repeat this over and over to myself in an effort to actually believe it. I won’t bore you with too many sad details, but my 44-year-old amazing husband was a brave and tough man. He had a disease called Adrenomyeloneuropathy (AMN) — say that three times fast — which was nice enough to take his mobility, his brain, and then his life June 18, 2019. 

Thanks for the throat punch, genetics. A vibrant, loving, handsome and kind man with the warmest smile ever died four weeks ago due to some weird mutant gene that went banana balls somewhere in his maternal history. And while the world is a darker place now, we’re all brighter people for having known him.

But yeah, I’m grieving. I’ve been grieving since December 14, 2017…the day not one, but three neurologists told Mark he had life-ending lesions on his brain. Just three short months after we got married, too. “Oh, congratulations, newlyweds! Also, Mark, you’re dying, soooo make the most of it!” No pressure…thanks docs. I remember thinking “I’ve got this.” But I didn’t and I remember wanting to cry all night and punch everyone I came into contact with after figuring that out.

But I couldn’t. I had to be strong for Mark. He look so deflated and defeated and started to cry as soon as they left the room. I’ve faced some challenges, believe me. I raised three kids by myself and put myself through seven years of school all while working retail, restaurant, whatever…full-time. I’ve been homeless and I’ve gone hungry. I’ve been manipulated by my closest family and friends. But watching the strong, determined and brave man I had just married break down I couldn’t handle. I left the room and found the doctors, asking them to REALLY be blunt so I could figure out what I’d need to do to manage the upcoming challenges of taking care of him.

We had a long conversation about life and how things had changed in the last few months. We talked about family, friends, the best parts of life, what was yet to come.

I quickly realized I needed help. Serious help. I reached out to a few people but didn’t get much support. Some people just couldn’t “handle watching him decline,” which I quickly learned was code for “I have better things to do, you figure it out.” But hey, we all have lives. So I mentally cut those losses. I also quit my job, where I was building upon the trust of my superiors to manage projects and teams, so I also put myself in massive debt.

But that didn’t matter, because I would NEVER have chosen assisted living or any other type of facility like that for the love of my life, which was an option suggested to me by his family. We pressed on, and I became an expert in finding the best medical care, mobility aids and services I could our family would need to take care of him. It literally was a full-time job.

And by the way, the state of Massachusetts won’t pay for a spouse to take care of their completely dependent spouse if necessary, because evidently too many spouses have taken advantage of that in the past. They’ll pay for the married couple’s minor child to care for the parent, but not the spouse. It’s actually cheaper for the state to pay for Assisted Living, or Nursing Homes, and what super care you get there, right? Bullshit. THAT needs to change and it’s a personal mission of mine to do so.

While I knew we’d struggle financially going from a comfortable income to depending on Mark’s social security and my contract/1099 income, we made do. We appreciated the comfort and serenity of our home. It’s a blessing that we lived in affordable housing at the time, despite being at the rental cap because if we didn’t, we wouldn’t have survived the costs of Mark’s care.

Armed with our trusty new mobility equipment and aids installed in our home, solid med care and FREE care resources, I thought we were in the clear.  And then Sepsis came…over and over again, in relentless wave after wave, which resulted in the weakening of every cell, muscle and organ in his body until they all finally gave up, and death took him.

No, Mark’s death was unexpected. Even though he was on a Hospice program to get care and treatment at home because going to the hospital was physically hard to do, he was “fine” less than two days before he died. In fact, we had a long conversation about our life together and how things had changed in the last year.

We talked about how getting married was the best day of his life, how much we loved our little family, our friends, how great our dog was, and what was yet to come in life. That night, we had a super hot make-out session, too. That one was ON FIRE, which was very rare because mentally, Mark really struggled in the last 12 months of his life. He didn’t always know who I was, which sadly halted all intimacy, but that night, I went to bed reminded of just how lucky I was. 

“I’m sorry, Laurie…I think we’re approaching the end. It could be a day or two.”

Our Tremendous (and very Brave) Hospice Nurse

And the next day, everything went to Hell. His temp was up, vitals were way off and his catheter was clogged. Our nurse came and managed the issues, his temp immediately decreased and then he slept, so very soundly. I thought: “Phew, in the clear!” Nope. The next day she came back and asked if he had woke and I said no, and she told me: “I’m sorry, Laurie…I think we’re approaching the end. It could be a day or two.” Uhhh, come again?

Nothing prepares you for the emotions that come with losing your person. NOTHING. Even when it’s “expected.” And by the way, this grief isn’t the same as losing your sister or your parent. It’s losing everything, all in one big swoop. It’s a personal tornado, is what it is. You lose your lover, your best friend, your confidant, your ally, your emotional stability, your laughter, your joy. I could go on, but you get it by now. 

I’m angry. I’m sad. I’m confused. I’m easily agitated. I’m (sorta) relieved, and I know that sounds horrible, but our hospice nurse told me to expect that. So naturally, I also feel guilty. That’s a lot of emotions to toss together in one big pot. I need to share my thoughts on exactly what grief feels like and hope you’ll share your experiences and tips to help me cope (and not take up stock in a good Riesling. Although, yum.) 

For now,
Lau