Tag: Disabled Veteran

The Highs and the Lows

On By tomstroopsIn Alpha Lima SierraLeave a comment

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.

In the Kitchen, there was love

On By tomstroopsIn Alpha Lima SierraLeave a comment

The quote I wanted to use but it just didn’t seem right is, The Kitchen is the heart of the home. In every home I have lived in from my childhood home to my current and every one in between, what a true statement. Today, my kitchen, what was once the heart of my home will begin a transformation. While not a full re-model, the kitchen is getting a facelift. Something that is needed now that the rest of the home has been taken from fully handicap friendly to one that is not. While, I kept components of the some of the changes we did to the home, you could say the house is now more perfectly suited for “aging in place” rather than one for someone that was wheelchair friendly. The kitchen now looks out of place with the changes to the rest of the home, which is why the facelift.

Like so many times before, I have overestimated how I would handle things. The excitement of the changes and anticipation of having the house feel calm and peaceful has not allowed me to think about what changing the kitchen truly means to me. That is until about 3:30 a.m. this morning. I tease that Captain Cortisol wakes me around 3-4 am many mornings, but this morning I think it had more to do with being anxious about the start of demolition. As I walked into the kitchen so very early this morning to grab a drink of water, I stood in the mostly empty, packed up kitchen and felt the waves of memories hit me.

We moved in to our home in 2008. Our neighborhood was very small at the time, maybe a dozen or so homes. There were families with kids around Trey’s age and so we began a new season of our lives together. Tom was working and moving through the ranks of TDCJ, I was consulting part-time and being the stay-at-home mom I wanted to be. There were school activities, after-school activities, weekend Bar-B-Q’s and outdoor movie nights. All of which started in the kitchen.

That’s where Tom and I hung out and planned our week. It’s where impromptu outdoor movie nights were decided. The kitchen table is where we helped Trey with homework or where Tom and I would just sit and talk after dinner while Trey was in his room playing legos. The kitchen is where Tom would sneak up behind me and give me big, amazing hugs or a kiss on the neck as I made dinner. The kitchen sink is where I would slap Tom’s butt as he did the dishes, you know, to give him a taste of his own medicine. The kitchen has kept secrets, heard laughter and felt the tears of hard times. The kitchen was witness to fellowship with friends and the love between two people. It was where Tom and I taught Trey how to cook and just off the kitchen in the backyard, Tom taught Trey how to grill. Tom and I were always a team, and the kitchen let us trade who was captain of the team. On weekends, he was, it was the grill master’s domain and I was the sous-chef. On the weekdays, I was the master of the kitchen and Tom was my sous-chef.

It was in the corner of the kitchen in January 2016, while Trey was being tutored in Math in our dining room, that Tom grabbed me , pulled me close and told me in a whisper about his appointment to the neurologist he had that afternoon. He told me, how the Doctor believed his left hand weakness was probably not carpal tunnel syndrome that it could be a something else. On that night, in a whisper, that corner of the kitchen was the beginning of our ALS journey.

The kitchen was where we learned to cook differently to accommodate Tom’s changing needs. It’s where I would make batches of different meals, blend and freeze them so we could use them with Tom’s feeding tube. It was the kitchen that instead of fellowship with friends, it was where nurses and caregivers went for Tom’s medication. It was that same corner of the kitchen that I would stand and cry as the disease progressed and it was in that kitchen, I stood alone after my husband died in shock and the heaviest of grief as I realized, he was gone. The love and laughter that once flowed in the kithen was replaced with anxiety, fear and lots of crying. The kitchen was just another room in the house.

The changes to the kitchen are cosmetic and I know they can’t erase the memories, but this morning, it was all I could do to not have that fear along with the emotions the memories stirred in me. Since Tom’s death, I have tried to find my way back to cooking and re-creating the heart of our home. It’s just not the same right now. I don’t really find the joy in cooking like I once did. I am working on that. Actually, tonight I am off to a Thai cooking class with my bestie. Maybe this will spark something in me. My hopes are that the updated kitchen will do the same. Help me find my way back to enjoying creating happy memories, like laughing and dancing, fellowship with friends and ultimately bringing the kitchen back to the heart of the home.

All my love,

Lara

Story Time-Our Wedding Day

On By tomstroopsIn Alpha Lima Sierra, Living Life to the Fullest2 Comments

The Big He and I get to celebrate our anniversary for two days. I know, you are asking yourself, how is that possible. Well, 31 years ago, we eloped on the island of Guam, which is a day ahead of the US. Guam was the Big He’s first Duty Station. We had planned for me to visit for the summer of 1990 and would marry later in the year. Well, as with any good love story between two very young kids, fate had us marry earlier than we thought.

A few days after my last college final in May 1990, I was on a plane to visit the Big He on the island of Guam. I had a return ticket for the first part of August. I would have two whole months, sixty consecutive days to be with him. By this point in our relationship we may have had a total of 45 days we were physically together and keep in mind they were not consecutive.  Let me just say, I had the best time with him on the island. I was, for the first time in my life, off on my own-okay I was with the Big He but it still counts. I was on a tropical island with the most gorgeous man AND he was in a uniform. Who knew I had a thing for smart-ass and uniforms. In mid-July, the Big He was preparing to go off island for an exercise. He would be gone for 30 days. We had only two choices for what I could do. I could go home early or stay. So, we got married July 30th, 1990 which was about one year after we went on our first date. I was twenty years old and he was twenty-one. I had no job and only 2 years of college under my belt. He was just an Airman First Class and on the day we married, he had negative $80 in the bank. He had bounced a check for a microwave of all things. Of course a bounced check could not stop love!

You would think finding out you were negative $80.00 would be the worst thing that could happen on your wedding day…it wasn’t. You ready? Here is the story…

We had arranged for two friends of the Big He to come with us to be witnesses and also because one of them had a vehicle to get us to the Justice of the Peace (JP). There was actually five people in the vehicle that went that day. At the JP’s office, we did have to wait a litte bit. In those minutes before our time to get hitched, my stomach was a ball of nerves. The Big He and I could barely look at each other. I knew I wanted to get married, but man was I scared. Standing in front of the JP and looking into the beautiful green eye’s of my future husband, the best I could mumble when asked if “I take him to be my…” was not “I do” but “Yea”. WTH??? Such a romantic and traditional way to express my desire to cheris this man for richer or poorer or in sickness and in health. The look on his face…he has yet to let me live that down.

After the ceremony, which there are zero pictures, we headed to McDonalds because everyone was hungry. Remember I said the Big He had bounced a check…yep no money to eat. After McDonalds we headed back to Base. On our way back, we were pulled over because the driver was speeding. After getting a ticket, we took off once again towards Base. About a mile down the road, we had blowout. Not a big deal until we realized there wasn’t a spare. The blowout occured on a back road to Base and in the middle of no-where. There was however a small house on the edge of the boonies or jungle line. I was voluntold to go knock on the door and ask to call the Law Enforcement Desk. Oh, hey, did I mention that all the people in the truck were cops but I was the one that was supposed to knock on a stranger’s door for help. One of our brave USAF LE’s did come with me and the LE Desk would be sending a patrol car to come get us and sending a tow truck as well.

As we waited in typical tropical island weather, we had on again, off again rain events. Y’all know I have naturally curly hair right? It does not do well in hot, rainy, humid weather. The tow truck was the first to arrive. My new husband and our friend Daryl, my man-of-honor, jumped in the truck and off they went to Base. Yes, if you are asking yourself, did she say new husband left with Daryl, that would be correct. I was left alone on the side of the road with two people, none of which were not my new husband! The two LE’s decided it was probably a good idea to start walking back to Base in hopes the patrol car would get to us soon. Yep, that didn’t work out very good. The patrol went out the wrong gate which took him around the island before he caught up with us…only a few miles from Base at this point.

Once back on Base, we were dropped off at the dorms, where my new husband was waiting for me, freshly showered and I swear he took a nap cause he look rested. Me on the other hand, had wild crazy curly hair, sweaty and my pretty white heals were worn flat from walking on the road which had a coral base to it. Once I freshened up, we went to have a wedding dinner at the NCO club…cause we had no money and he knew if he took me to the Mac T I would kill him. The only thing left that late in the evening was steak, potatoe and salad. They also had a few slices of cheesecake for dessert so that was our meal. One we have eaten every year since. Steak, potatoe, salad and cheesecake for dessert.

The day wasn’t picture perfect but that is not really what a marriage is about is it? It’s about the people. We actually laughed most of the day and night about what had transpired. The Big he and I have always found reason’s to laugh. We just love being with each other and truly enjoy each other’s company.

Since it is already July 30th in Guam, I am taking the opportunity to wish my beloved a Happy Anniversary. Love you more!

All my love,

The She

white and brown wooden tiles

Anxiety and Fear

On By tomstroopsIn Alpha Lima Sierra1 Comment
white and brown wooden tiles
Photo by Suzy Hazelwood on Pexels.com

After the Big He received his trache and went on a ventilator, severe anxiety and fear were two things that became a constant with him. It was something that I had not seen in our years of marriage. Yes, I had seen him anxious at times and when we lost the babies, there was fear but this is different. This level of anxiety and fear is all consuming and here is the hard part to admit…it has changed him. This is where trust and love play a huge role in our relationship now. The fear and anxiety are often seen as anger and rage. It has been hard to see and live with such intense emotions. I have never been on the receiving end of the Big He’s anger and now I have to constantly tell myself he is not angry or raging but it is the disease causing this. Some days I can easily see the difference and some days it all blurs and his words and actions break me. Rage is actually something that is new to me. It was only after talking with other caregivers that I began to understand that the emotion I was seeing from the Big He was anger on steroids, it was full on rage.

See, this is a side of the disease that I, like many of my caregiving brothers and sisters, only discuss between us and only with those that we see as safe. For me, when I do talk about this with my ALS and veteran caregiver friends, I do so knowing they do not judge. They understand how the person you married becomes someone else. This is actually pretty common with not only ALS caregivers but those that care for veterans. While my husband is considered a pre-911 veteran with a service connected disease, many of my post-911 caregiver friends have experienced the same. Maybe not from the place the Big He is coming from but from their veteran’s invisible wounds like TBI’s or PTSD.

This is the part of caregiving most people don’t even think about. Seriously, when you hear of caregiving do you think of the emotional aspect? You probably think of the making meals or helping with personal care. There are just so many facets to this life which is why I am opening myself up to help bring awareness to not just the caregiving to someone with ALS but those that help our nations wounded and ill.

I can tell you that when the Big He is angry with me, which happens more and more for all sorts of reasons, I find my mood changes. I don’t like my husband to be mad at me. I sometimes walk on egg shells and sometimes I just stay away and get lost in binge watching Netflix. Luckily his angry moods don’t last too long and before I know it he is back to the man I have grown up with, the man I love. Anxiety and fear fade away because of trust and love. So that is what I hold on too as we navigate this later stage of the disease, trust and love.

All my love,

The She

T is for Trust

On By tomstroopsIn Alpha Lima SierraLeave a comment

Trust and Love

There are so many layers to caregiving. These layers include the relationship we have to the care recipient, the physical aspect of the care, and the emotional and mental impact that caregiving takes. The base of all these layers needs to be strong to support the heavy load that caregiving can bring. While early on in my caregiving life I would say without question, love was where the strength to our foundation came from, but now I think it is trust and love. Can you love someone without first trusting them? After the Big He was put on the ventilator I would tease him that I was his Boppy. That was the term we used for the Little He’s security blanket when he was a baby. This was because when the Big He would get anxious or scared, he would want me close. I was becoming his security blanket. He trusts me and knew if I was there I would protect him with everything I can. Even on days when I am not his favorite person, he still trusts me. He trusts me to ensure every aspect of his life runs smoothly. Heck, sometimes he trusts me so much he thinks I can read his mind. For this post, I wanted to start with the foundation for our caregiving journey. As I post throughout this month you will understand that even when an ugly layer of this journey is exposed, you see it for what it is, just a layer and it is in those moments we rely on our strong foundation.

All my love,

The She