Author: tomstroops

The Highs and the Lows

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This week I experienced both ends of the spectrum: a soaring high and a gut-punch low.

Close-up of a car fuel gauge showing the needle at 'E' (empty), indicating low fuel level.

The Low

The day before an important two-hour drive for a meeting, my car battery died. A dead battery. Something so ordinary, so fixable, and yet I completely unraveled. I lost it in a way that surprised me, and honestly embarrassed me. To say I may have lost my shit is an understatement and I am glad no one was here to see this!

I ended up calling Grant, not because he’s “supposed” to fix my problems, but because I didn’t know what else to do. He dropped everything, showed up with lunch, figured out the issue, and followed me to the store so I could get a new battery. He was steady, kind, and selfless and it overwhelmed me.

I didn’t know what to do with that. Because in my head, that was Tom’s job. Tom was the fixer, the one who handled things like dead batteries and broken appliances and all the little hiccups of life. But Tom died, thanks to ALS. And now I’m here, three years later, still trying to figure out how to carry the weight of all the things.

It’s not that I can’t solve problems. I can. I do. But I’m depleted. My imaginary reserve tank still hasn’t refilled, and it is clearly on EMPTY. The truth is, sometimes even the little things break me wide open, because they remind me of all I’ve lost, and of all the ways my life is different now.

What Grant did that day wasn’t just about the car battery. It was about showing up when I felt small, overwhelmed, and fragile. It was about being seen and helped without judgment. That kindness reached a part of me that’s still grieving, still healing, still learning what it means not to carry everything alone.

The High

The high was meaningful. I achieved an advocacy goal I’ve been working toward for years. It is a win on the ALS veteran and caregiver front that, as it comes to fruition, I will share. It felt like proof that the long nights of research and learning VA Directives, the countless calls and emails were worth it. It wasn’t just achieving an advocacy goal; it was solving veteran/caregiver issues in the moment, knowing that caregivers and veterans don’t have to be scared or afraid of what will happen if their needs can’t be met. I can easily put myself in their shoes, I can instantly remember the fear of going it alone. During my caregiver journey, I just wished that someone would or could help me, but at the time, there was very little help for our ALS veteran community. It is an all-consuming fear. One that you feel for yourself and for your veteran. To think Tom’s livelihood and even his life were balancing on me getting services from the VA, well, it’s one of the reasons I advocate.  During that meeting, I felt like I was exactly where I was supposed to be. And you know what, I was.

The Reflection

Grief isn’t linear, and the impact of caregiving doesn’t end when the caregiving ends. The exhaustion, the emptiness, the muscle memory of always being “on”—they linger. Sometimes, a dead battery is more than just a dead battery. It’s a reminder of everything that’s missing in my life, and an opportunity for someone else to step in and show me I am not alone.

The lesson I’m trying to take away is this: it’s okay to celebrate the big wins and still fall apart over the little things. It’s okay to ask for help, even when I wish I didn’t need to. And maybe the hardest truth of all—it’s okay to let someone else show up for me, even though no one will ever replace Tom.

Because maybe, just maybe, part of resilience isn’t about always being strong. Perhaps it’s about letting people love you through the moments when you’re at a low in your life.

Aha or gut-punch Moment? Maybe both.

On By tomstroopsIn Alpha Lima Sierra1 Comment

Here I was, minding my own business when Grant, called to chat. I was working through some thought processes with him prior to a meeting I was having later in the day when he asked me a simple question. Which was, “in your own words, why is this important”? I thought about it and started in with a statement I have said many times but stopped and resaid it in a different way. The question was related to why is important for caregivers, in this case, military/veteran caregivers, to get help in the home which the VA allows access to but many VA’s don’t approve. The answer I have given many times includes the idea that having help allows spouses to be spouses. I have always said it that way and it was something I had to grieve before I was a widow-the loss of being Tom’s wife. The version I corrected with Grant went something like this, “When I didn’t have help, I had to be everything Tom needed me to be and could no longer be who I wanted to be”.

I know, right?! That statement hit me hard. I had to stop and repeat it. Wow, when I got off the phone with Grant, I sat down and thought about what I said and why. Something I should tell you is that while I tried hard to move through Tom’s disease and do everything I could for him, so that when it was over, I would not live with regrets, there are still a few. At times, some of Tom’s care required me to turn all the power off to the wife-brain and feelings so the caregiver brain had more juice to do what was needed to be done. When emergencies occurred in the home, I disengaged the caring, loving wife part of me so I could do hard stuff to ensure Tom was okay. I had to perform tasks that, while I am glad I could do them for him, pushed me further away from what a wife would typically do for her husband to what a nurse would do for a patient.

That change in how I emotionally tackled caregiving also changed the way I saw Tom. When we had help and I could slip back into my wife brain, I always saw Tom as this healthy man. In my eyes, he looked as he did before ALS was an everyday word for us. But, when I was the caregiver/nurse to Tom, I could see the changes ALS had made on Tom’s body. He was thinner and towards the end more frail. His eyes no longer twinkled like the once did. These two drastic versions of this man I saw could often happen within the same day or even hour. I was able to switch my emotions off and on like a light switch, and I hated that!

Tom needed me to be strong emotionally for him and that required me to disengage my wife instincts. Tom needed me to fight for him and be his advocate but that required me to step out of my comfort zone and be something I didn’t want to be. I wanted to remain his wife. To stay in this relationship of ours we had created and nurtured for 25+ years. ALS forced me to become someone else for the remaining six years we had with each other. So yes, there are regrets. I have tried to work through so much, but this one area has been hard. I loved being Tom’s wife. I was a great wife. I was made for that role in life as he was made to be my husband. Unfortunately, my role of wife had to change so I could become everything Tom needed me to be. Would I do it all over again? I would because that is what was what he needed and I loved him so much that being who he needed me to be was the most loving thing I could have done for him. Now, I need to love myself in that same way and be who I need to be to ensure I live and love this new version that I am becoming.

All my love,

Lara

Just a Feeling

On By tomstroopsIn Alpha Lima Sierra1 Comment

Typically, when I write, it is the title that pops into my head, and the words flow from that. Tonight, there was no title to start me off, just a feeling. It’s familiar to me, but something I have not felt in a long time. So, why is this feeling so strong now? I don’t recall it being like this last year, but deep down, I know the reason. As much as I post about healing, living again, and finding my happiness, just below the surface, there is still pain, sadness, and grief.

July is not a great month for me. It used to be a month that brought so much excitement. Typically, at the beginning of July, Tom and I would start thinking about how we would celebrate our anniversary at the end of the month. But that changed when Tom died.

Tom’s death and the days leading up to it are marked by such sadness. I know some will read this and will completely understand. They are the loved ones who knew death was coming. For our family, we knew that Tom was locking in. It was confirmed at the beginning of July. That was the line Tom had drawn when he was first diagnosed. He made his wishes known not only by telling me but also by ensuring that those wishes were specifically stated in his medical directives. On July 4, 2022, with me calling out dates and watching his response (one blink for yes, two for no), Tom picked the day he wanted to be removed from life support.

From July 4, 2022, until his death on July 15, 2022, we knew the end was near. Can I tell you how tough it was to wake up every morning for those 11 days and act as if it was just a typical day? Harder than you can imagine. How did Trey and I do it? I can only say it was divine intervention that got us through. We did it for Tom. We did it out of love. We knew we had two choices. Live each day already grieving him, or live each day loving him and enjoying him. Did it stop the thoughts? No. Every morning, I would think, ‘This is the last Monday I will have with my husband, or I only have seven more days to tell him how much I love him.’

This feeling, I can name it now, is grief, and the anxiety that comes with it is the physical manifestation of loss. It is afraid to go to sleep for fear of remembering the hardest parts of the ALS journey. This feeling was my bed fellow. It was with me every night in that first year. Why now? Is it the approaching anniversary of his death? Most likely. What I think might also be going on is that this feeling is here because, as I am approaching the 3rd anniversary of his passing, I am also working to let go of some of the negative feelings surrounding the ALS journey, which are things like guilt and anger. Grief is such a funny thing. We hate it, but at the same time, it becomes a safe space. I no longer want grief to be my safe space. I want to let go of some of this further.

How do I let go of the guilt and anger? I’m not sure; it’s just a feeling that the next part of the journey will require a bit more effort to process

How is this my life?

On By tomstroopsIn Alpha Lima Sierra1 Comment

One phrase I’ve found myself repeating—again and again—is: “How is this my life?” And I know I’m not alone. I’ve heard it from so many other caregivers and survivors too. It’s a question that can come from the deepest moments of pain, and surprisingly, from the most beautiful ones as well.

I remember saying those words months before Tom passed. It was one of the lowest points in our journey with ALS. I was overwhelmed by sadness, grief, exhaustion, and a deep despair that felt unshakable. I wasn’t just watching my husband slowly slip away—I was being pulled under by the emotional weight of it all, made heavier by the later realization that we were also dealing with FTD.

Back then, I carried shame and embarrassment for even thinking those words. I’ve since processed those feelings. That moment was real. That pain was real. And yes, that was my life.

When Tom passed, the question returned: “How is this my life?” How did we go from a marriage full of laughter to me sitting alone in a quiet house, trying to comprehend a world without him? I remember hiding in bed, pleading with God to take the pain away. I wrote posts wondering if I’d ever feel joy again. I waited for it, hoped for it—but in the quiet moments, the heartbreak was louder than anything else. And still, it was my life.

But here’s what I’ve come to realize: that question—“How is this my life?”—isn’t just for the painful moments. It shows up in the joyful ones, too.

I said it on a Mediterranean cruise with Cy, as we watched breathtaking sunsets and explored new cities. I said it while swimming with sharks in Belize and watching monkeys play outside our rental in Costa Rica. I said it on a freezing day in New York City, standing at the top of the Empire State Building with Grant, facing my fear of heights and feeling nothing but awe.

Just this morning, I sat in the hot tub in my backyard, wrapped in quiet and reflection. Nearly three years have passed since Tom’s death. I’ve worked through layers of grief and guilt that ALS left behind. And I asked myself again: “How is this my life?” Not in disbelief anymore—but in wonder.

I’ve learned that to find happiness again, I had to meet it halfway. That meant letting go. Letting go of what I imagined growing old with Tom would look like. Letting go of the anger that he died. Letting go of the fear of being a widow. Letting go of my old life, so I could see the beauty in the life I have now.

I’m still healing, still learning, still growing. But I say yes to more adventures now. I embrace discomfort. I have no time for anything that isn’t authentic. And while I can see how far I’ve come, I know the journey isn’t over.

This is my life. I wouldn’t trade it—not even the heartbreak. Because that pain means I loved deeply. And to love that deeply is a gift.

How is this my life? It just is. And for all of it—the joy, the sorrow, the healing—I am grateful.

All my love,

Lara

The Best Laid Plans…

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Loss, WidowLeave a comment

For about a month now, I have been making a plan. That plan was to clean-out and clean-up my guest room. Well, I loosely call it a guestroom, more like the, I am not ready to deal with this so I throw it in this room, guestroom. Last year or so, I did a post about two rooms in my home that needed work. My office and my “guestroom”. The office got an overhaul but all that stuff I wasn’t sure of, it went into the “guestroom”. Same for those things in my bedroom that I wasn’t really ready to get rid of, but was testing myself to see if I could live with out, went into that room too.

A close-up view of a box containing folded letters and envelopes with handwritten messages such as 'I love you' and 'I miss you'.

I woke up this morning, with the plan to spend 1 hour. That’s it. Enough time to get started but not enough to get me tied up in that room all day. It took 15 minutes. 15 minutes to totally shit can my plans. I quickly got rid of unused supplements that Tom purchased and thought I would start in the closest. BAM!!!! I was met with a blue box. Newspapers from when the first Gulf War started and love letters. Love letters from Tom from Basic Training and love letters from his time in the desert. How quickly I went from standing tall (figure of speech) and strong (I think I can, I think I can) to laying on my bed unable to stop the freight train of memories that had left the station and was picking up speed fast! Oh and did I mention, I had to move a bag of his very, inappropriate t-shirts he wore after the ALS diagnosis? Give you one guess what I did with the t-shirt I grabbed from the bag…come on, what did I do? If you are a widow and your first thought was, “I bet she smelled it”, you would be correct!!!

A collection of letters and newspapers stored in two boxes, with one box being blue and polka-dotted, containing love letters and memories.

That’s how my day has gone. Started off great and now, I am sitting here, telling you how hard some days can get. I try to wake up every day and every night before I go to bed, and say out loud what I am grateful for. It begins and ends with my family. I try to live my life in a “glass half full” kind of way. To find the lesson in the hard times, to see that the sun does come up after the darkness. I forget that sometimes, I must still struggle to get through the dark but deep down, I do know, I will find my way to the light again.

There is no quick fix for this unfortunately. It is not something someone can take away or do something to make better. This is grief. This is a process and sometimes you can get derailed. I could try to self analyze what is going on, It’s the room, it’s the letters, it’s all the things that have happened this month, like a few trips where I was able to support my ALS and disabled veteran community. I was sick with the flu or maybe the AC unit that took a crap or a wind and hailstorm we had two nights ago that has left me vulnerable, scared, tired and feeling alone. I have found on this side of the ALS journey, I don’t like asking for help, and when I do, it is me really stepping out of my comfort zone. I think I should be able to handle what comes my way. The reality is, I can’t sometimes. Tom and I were a team for 33 years. Even towards the end, I could look to him for guidance, now I am on my own. I do have a few close people in my life I rely on, but at the end of the day, this is my journey and I have to figure out how to navigate it. That’s why I make plans. Unfortunately, “the best-laid plan of mice and men often go awry.”

So how do I come out of this? Well, I will probably continue to read some of these love letters to remember and remind myself of the life I had with Tom. I will allow myself to feel the feels and will probably go to bed early. In the morning, I will box the letters up and place them on the shelf in my closet and spend an hour in the “guestroom” hoping not to get derailed again.

All my love,

Lara