The Silence is Deafening

The silence is a constant reminder Mark is gone…and I’m alone.

They should tell you…

About the silence. The silence you’ll experience both in your house and your heart when you lose your person. The Hospice nurses, the social workers, the Chaplains provided, your grandmother, (or grandfather!) even shrinks. Even the FedEx guy you spill your heart to…for no reason. You know…anyone.

Many people reading this post probably don’t get “the silence”…yet. And I hope you don’t have to, because it sucks. Yes, the people we love get out on our nerves, and maybe we think about duct taping their mouth shut. But that’s companionship and marriage. Not for me though…because my guy is gone gone. As I write this, I’m tearing up uncontrollably and want to turn to denial instead. This can’t be real. He was just here..and then I remember a month has passed. A month. The days have flown, but every damn moment has dragged. Because…the silence.

Back to the month. A month without hearing “I love you!” or “What’s for breakfast?” And then of course, his asking about lunch or dinner. Plus the snacks, and then more snacks. That man could eat! Although I don’t know where he put it, since he lost 40 pounds in under eight months. Was he stashing it somewhere? I dunno. Maybe he fed it to the dog as he porked up a bit…okay, a lot.

Mark and I used to talk for hours and hours…about nothing really. We knew from the third date we’d probably never run out of things to say. There would always be chatter about our days, family, work, even the jerk who cut us off in traffic earlier that day (RUDE!)

Mark reminded me to appreciate the things that really matter: spending time with family, enjoying laughter, and sharing the most truest of love. The “little” things, otherwise known as the best things.

I recall we had a long talk the Friday before he died. He must have known he wasn’t right as he talked about how disappointed he was that he hadn’t seen his friends and family in a while. This isn’t a personal attack either, so calm down snowflakes. I realize some people could handle his decline and some couldn’t. Still, he was sad…so we talked through it, like we did everything.

This unique discussion gave me the opportunity to tell him how much of a positive effect he had on my life. He changed me, and how I look at life, as he did for so many people. He was humbled by his disease, and always forgiving about a person’s flaws. I used to care a lot about money, things, and getting ahead in the world. Maybe that was because I struggled so much when I was younger, I’m not sure. Mark reminded me to appreciate the things that really matter: spending time with family, enjoying laughter, and sharing the most truest of love. The “little” things, otherwise known as the best things.

Mark wasn’t just my husband, he was my very best friend, my ally in life, my confidant. And I was his. I could tell him anything and he’d listen to me. And vice-versa. Now that I think about it…maybe he was deaf? HA, I hope not. That said, I do tend to talk.. a lot. But he loved that about me. He loved that I carried the convo and he’d just listen, occasionally throwing me “the smolder” or a snide comment about being so cantankerous.

But now there’s just silence. A whole lot of silence. Without him here, there’s no daily visits from nurses. No extra cleaning to keep germs at bay. No yelling to my youngest son to help me clean him up or feed him one of his meals. No…now it’s just quiet. So now I talk to myself (I’m not crazy) or to his parakeet, Lou. Lou doesn’t talk back though — he just tells me to shut up in his bird way. When I finally give up on Lou (and Mark) answering me, I kiss Mark’s urn and flop frustrated and sad into bed. God I miss him.

Nothing screws with your brain more than knowing the one person who provided you so much emotional security is never coming back.

Laurie Moon-Schmorrow

I close my eyes tightly when I talk to his ashes (he’s right next to me on his nightstand) and I imagine what he’d say in response to my talking. Especially about the current heat. It’s so hot, ugh. He loved the heat and humidity (clearly he was borderline wacko) and he was in his personal “hotter-than-hell” Heaven when we were in Haiti, sweating in places we didn’t know we had. I can definitely hear him laughing at me complaining about it right now.

But now it’s silence. All. The. Time.

I used to appreciate silence and now I dread it. It’s a constant reminder Mark is gone…and I’m alone. Yes I have the kids here, but it’s not the same. Nothing screws with your brain more than knowing the one person who provided you so much emotional security is never coming back. It’s overwhelmingly sad. Maybe it gets easier…but I don’t see how. For now, I just have to learn to live with it…no matter how deafening.

For now,
Lau

…And now I’m a widow.

Nothing prepares you for the emotions that come with losing your person.

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

The Life of Mark Schmorrow

It is with immense sadness that I report Mark has lost his battle with Adrenomyeloneuropathy. While he fought this disease passionately with every breath he took, he passed away at home with myself, his children and his pooch at his bedside on June 18, 2019.

So now, it’s time to introduce you to me, and my name is Laurie Moon-Schmorrow. I am Mark’s wife, and I helped him conceptualize Schmorrow Strides a long time ago. In his memory, I intend to continue his commitment to help create awareness of Adrenomyeloneuropathy (AMN) and Adrenoleukodystrophy (ALD) in efforts to help end this horrible disease.


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As many of you know, Mark competed recreationally in many 10K marathons and half-marathons in his customized racing wheelchair when his health was “good” (whatever that means.) He was such a devoted man to this cause, and he really wanted to compete in the Boston Marathon. He trained and trained but life – and his disease – had other plans for him. After a series of broken bones in 2015, taking a new job in 2016, (while racing!) burying both of his parents, and getting married to me (wahoo!) in 2017, he was certainly busy.

Then, we got the news. After discovering Mark had Sepsis in Dec. 2017, the hospital wanted to do a series of MRI scans, which is when we learned his AMN had impacted his brain too. This was devastating, as the prognosis for AMN patients with cerebral involvement is very grim, indeed. We not only learned Mark would lose the ability to walk and move his body all-together, but he’d also severely struggle with loss of sight, memory, speech, motor control, the ability to provide all care for himself, increased infection risk, and much more.


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We had only been married for three months when we learned this, but once again, Mark took it in stride. He cried and told me how sorry he was. That he knew things were going to deteriorate and he’d need care, but I took his hand, held it tight, and told him I was with him until the end of the line. I opted to leave my job to care for him, and while we struggled financially, we also had 14 months together.

We thought about our options, and decided to choose palliative-hospice care. We installed a ramp to help with transitions out of the house, obtained necessary mobility equipment and brought in a hospital bed. I enrolled Mark in an adult care program where he did lots of bowling, enjoying Gloucester seafood, and met others with symptoms such as his. We took a few mini-vacations and spent time together in theBahamas and Florida.


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And while he did decline quickly in all the areas I mentioned, we also laughed…so much everyday. We cried too, but mostly laughed. While he jumbled his words a lot and did silly things, (and we all giggled of course) his “I love you” was NEVER jumbled. We always knew how much he loved us.

Mark brought IMMENSE joy to me and to our children, and he had a profound impact on anyone he came into contact with. He was so very brave, and battled this disease with a permanent smile on his face. While I will continue his efforts to raise funds to bring attention to ALD/AMN, our scholarship plans are going to change.

In addition to Schmorrow Strides Initiatives, which seek to provide advocacy assistance to those to obtain recreational and competitive sporting equipment, my family and I are in the process of developing a memorial scholarship to launch Spring of 2020. Please stay tuned for more information.


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I’ll be sharing updates, details and criteria for the scholarship funds in the coming months. If you’re interested in making a donation to the Mark Schmorrow Memorial Scholarship, please email me and I’ll be in touch. I want to thank everyone who supported Mark throughout his journey to make a difference, and look forward to continuing that tradition in his memory.

Making the Transition to Hospice Care

While hospice care can feel like a death wish, it also provides many more services and supports that patients and their caregivers desperately need.

One year ago Mark and I learned his AMN had compromised his cerebrum and things would drastically change for him mentally (and physically.)

In this last year since finding his cerebral AMN complications, Mark has had three Sepsis infections (which have only accelerated his disease) caused from repetitive urinary tract infections. AMN/ALD has also quickly taken his ability to work, drive and read. He can no longer create furniture or work with his hands. He can only walk but a few feet and needs a minimum of a two-person assist to do even that.

He also requires supervision to eat and drink and can no longer control his physical movements. For example, he randomly opened the car door while I was driving the other night, so into the back seat he must go moving forward, because we have child locks back there. He also inexplicably snagged an ice cube out of his drink and shoved it into his mouth a few weeks ago. He spit it out before something awful happened, but he can’t explain why he did it — it was completely involuntary.

Normal sequence movements continue to be an issue but we’re using simple instructions and familiar cues to help his brain remember how to do them. (Putting his arm in a sleeve, for example.) Unfortunately we can no longer sleep together because muscle spasms cause his legs to move and shake and he has fallen out of bed. He now needs a secure hospital bed with rails to keep him safe, but that must remain on the first floor, so nights are lonely for both of us.

Mark and Hershey, Christmas-time, 2018

It’s been a long, trying and exhausting year. I’d like to say I’m looking forward to 2019 but I’m not. I know things will get even harder as Mark’s brain continues to swell and his body deteriorates. I have exhausted my FMLA options and had to leave my job at EBSCO to care for him. This has been a fiscally challenging and emotionally difficult transition for me as I’m a very creative person and I need to be productive to feel fulfilled. One day I’ll return to the marketing and PR world, but I know what the cost will be, and that’s foresight no one wants (trust me.)

With all this said, Mark has decided to begin hospice care. His physician and palliative care team assured me he has mental capacity to make the decision, but it doesn’t ease my pain. It will ease how much work is involved with his care because hospice provides so many more services and supports for him that he desperately needs. Our nurse keeps reminding me this transition is not a death wish, but since we can’t combat the disease progression anymore, we must focus the quality of Mark’s life, rather than the longevity.

I want to reiterate how much we appreciate those of you who make conscious, unsolicited efforts to continue supporting Mark and visiting with our family. We all thank you. Happy holidays, everyone. ❤️