Tag: ALS

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

brown wooden blocks on white surface

A NEW AUTHENTIC BEGINNING

On By tomstroopsIn Alpha Lima SierraLeave a comment

When I first started to think about this post, I had a completely different thought, but as I stare at the screen, I decided to take a different approach. What I had planned on talking about was the end of grief therapy for me. The end of therapy is actually due to the fact my therapist is retiring. She is someone I first went to see in 2010 to finally process the loss of the babies. Then it was to help me through the stress of a business divorce and most recently, the ALS journey and beyond. She has been there off and on for me for awhile.

However, during our session last week, we stumbled on a topic that I was aware of, but one I haven’t put a ton of thought in to. That topic was the new version of someone that develops after a traumatic event and in this case, the loss of my husband of 32 years. I was talking to her in terms of “this new me” and the changes I am making in my life. She countered with the idea of, is it a new version of myself, or the most authentic version of myself. That’s hard to wrap my brain around. How am I more authentic today then before Tom died? While I am still exploring this, I do see the changes in myself. I am most definitely not the same person as I was before ALS, I mean how could I be? I am not the same person I was during the ALS journey nor am I the same person I was just after Tom died. This version of me, while still somewhat broken from his loss, is putting herself back together in a way that feels right.

Pre-ALS, I was someone that was more of a people pleaser, always wanting to make everything okay, make everyone happy. The old version of myself, would feel guilty for things outside of my control. The old version of myself, didn’t want to upset anyone and I was most definitely not confrontational. That may come as a shock to many. Without a doubt, Tom was my protector. He was confrontational. He gladly stepped in for me when things were tough and yes, was happy to fight my battles for me which I let him. He gave no f*cks about guilt or being a people pleaser, of course Trey and I were the exception. He was an absolute marshmallow with us. During ALS our roles changed. As he turned inward to absorb the diagnosis and later spent his energy fighting the disease, it was I that stepped in and became his protector. When left with the choices of fight or lay down, I chose to fight. Fight for him, our son and our family. I fought ALS for him, the State of Texas with regards to his retirement and the Veterans Health Administration all for him and our family. Love and fear are powerful motivators aren’t they? Since Tom’s passing, I have had to step in and again, do the uncomfortable. Life without my husband. Be a solo parent. Be a solo person. For 32 years, I was part of a “we” and now I am learning to live as “me”.

How am I different than the old version of myself. Well, for starters, I am learning to set boundaries and for seeing those that can’t respect them as trespassers. I am learning that boundaries are important and necessary for your mental health. I have learned to be unapologetic about how I was grieving which in turn, has helped me to be better at not always going for the quick, “I’m sorry” as a reaction. Now, I am okay with the silence or break in a conversation where I would say those words. Post Tom, or Tom A.D., I am learning to be protective of my time, my space and my peace. This form of self care means that I don’t let guilt have a say when it comes to things that make me happy or that is fulfilling to me. I have more patience with others and for myself. I am leaning into things that are outside my comfort zones and finding new avenues of joy and happiness. Where Tom was my sounding board and provided me with guidance, I listen more to my inner voice and I am guided by experience and wisdom with a hint of “oh shit, I hope this works out” attitude. The version of me today is learning to quiet the chaos in my head using tools in my toolbox like mindfulness and meditation, and that is a powerful thing. The version of me today is placing more value on peace probably because peace has been something I have been hunting for some time and now that I have felt it, I want more and will do what I can to protect it.

I am still getting to know this new authentic version of myself, but so far I like her. I scare myself sometimes with the things that I do or say, but it is a fleeting fear as I know it is coming from a place where I had to do hard things and I know, I can do this Tom A.D version of life. Honestly, I think Tom would really like this version. I like to think he is smiling that smile of his and saying, “she finally got it, she now sees in herself, what I saw in her my whole life.”

All my love,

Me!

Widow Truth-Lost

On By tomstroopsIn Alpha Lima Sierra, LossLeave a comment
gray wooden maze

The past few months have been busy for Trey and I. In March we went on our first big road trip since losing Tom. Was I nervous? Yes, nervous and scared is more like it. Would I be able to drive 8 to 10 hours a day? Would I get lost? Would I be able to keep the boy and I safe during our travels? All the fears and big feelings followed me as we visited Mobile, Alabama, Savannah, Georgia, Holden Beach, North Carolina, and Vicksburg, Mississippi. The feeling of accomplishment was huge after that trip. Just a few weeks ago we were in Washington, DC where both Trey and I took part in the Elizabeth Dole Foundation Convening. Again, we went out of our comfort zones, feeling lost and again the feeling of accomplishment we gained by pushing forward was huge. We ultimately found our way through, but the fear of being lost and placing ourselves in uncomfortable situations is so very real.

That is how the past 10 months have been for me, that is how I feel about my grief-everything seems so far out of my comfort zone and I feel lost most of the time. Today as I start my week, that feeling of being lost is very strong. It is a big, big, BIG feeling day. Lots of tears. Tom has been front and center of my thoughts these days. I know part of it has to do with my DC trip where I needed to go back to when he passed and work through those memories as I prepared for my speech. It was hard, but it was also therapeutic to open the ole trauma closet where I stuffed a lot of those feelings. I know probably a bigger part of it has to do with the fact that July is right around the corner. I am having a hard time wrapping my brain around the idea that Tom has been gone almost a year. It feels like a lifetime ago that I last kissed him or held his hand but in the same breath it feels like it was only yesterday.

When we cross the one year mark, what then? I have unapologetically been grieving, saying it is my grief, my time, but at a year will there be a miraculous shift in my grief? Will day 366 be different than the ones before it or is this just another milestone? Will I not feel so lost in this world without my husband? Will the path I am supposed to be on somehow illuminate to light my way? Today with the big feels, I can’t see anything but a maze ahead and yes, I feel incredibly lost.

This is grief my friends. The struggle to interact with the world with a smile is hard. Behind the smile is a very lost and sad soul and the struggle to interact is uncomfortable. I know as I find my way through this maze of life I will look back at what I accomplished which will be to live a life Tom would want for me, and one that I can be proud of.

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

Struggle Bus

On By tomstroopsIn Alpha Lima SierraLeave a comment
Riding the Struggle Bus
Photo by João Jesus on Pexels.com

This morning, it was the whining of one of the dogs that woke me. It was time to wake up and start the day, at least for them. Before I could let the puppers out, the Big He needed to be suctioned. Once the Big He was taken care of, the dogs were let out and a big cup of coffee in one of my favorite mugs, my Red Hidden Heroes, was made. Walking back to the bedroom my eyes are immediately fixed on the Big He to ensure he wasn’t in any distress, which thankfully he wasn’t. He was just reading the morning news and checking on his investments. This is how our first 15 minutes of our morning starts, hopefully. As I wait for caregiver B to arrive, my mind starts spinning with the things that need to happen today which started with a call to our VA nurse case manager to follow up on a concern I have regarding obtaining physical therapy. Once B arrives, we remove pillows that support the Big He, switch ventilators, remove the feeding tube, move the communication device, grab the motorized ceiling Hoyer and move him to the shower chair so he can use the bathroom. Once done, we reverse what we just did to get him back to bed and in a comfortable position.

At this point, B starts the rest of the morning routine like breathing treatments, crushing meds, getting food and water loaded into the feeding pump, and trache care. I will typically go check on the Little He, grab another cup of coffee and stand in the middle of the kitchen and try to figure out what is next. This is where I struggle. There is NEVER a lack of things to do but still most days I cannot do what needs to be done. The Big He is physically paralyzed and I am mentally paralyzed. Fear. Anxiety. Depression. They all play a part. It’s worse if I have had little sleep or if the Big He is having a hard time. My mental and emotional health is on a never-ending roller coaster ride. I try and hold it together for the Big He and the Little He but there are days. Days that I am only functional enough to do caregiving duties, but I am of little real use to them or myself. There are days that I choose to just sit on the couch over taking a shower. There are days I can’t find the energy to call or text someone back. Some days I look around the house and see the mess but I honestly don’t care. Then my mind races to the fact I should care or the thought of how I should have the house clean just in case…just in case we need EMS to come in or what if he dies and a host of people will be flooding the house. Of course, those thoughts are quickly replaced with “Fuck it”. So I go back to staring at the blank TV, watching the dogs just be dogs, or mindlessly watching TikTok until I am called to help the Big He out. My energy is reserved for the Big He. That is what being a caregiver to someone that needs total care is your life melts from one crisis to another, one breathing treatment to another, one load of laundry to another until you realize that there are days that you live your life on the struggle bus and you come to accept it because that is what being a caregiver to someone that needs total care is about.