Author: tomstroops

Land of the Lost

On By tomstroopsIn Alpha Lima SierraLeave a comment

I am not talking about a strange world occupied by dinosaurs and sleestak, but the strange world of widowhood. It has its own obstacles and dangers to get through to survive. Only now that I have moved forward in this journey can I look back and see how far I have come. I can also look back with awe and a sense of pride at how I have fought through the obstacles that being a widow has thrown at me. I can’t say I have found my way back to a land I once knew, and I am not sure that is a possibility, but I am finding my way in this strange world I now occupy.

I recently completed a DIY project that I am super happy with. I started the project back in March of this year and had such an epic fail when it first started that I pushed it off to the side of the garage, thinking I would most likely not finish it. I didn’t beat myself up for not finishing it; I just resigned myself that it was a project not in my wheelhouse. I didn’t have the skill set it took to complete it. In my pre-ALS world, I would have asked Tom to help, and he would have. Okay, so really, I would have asked him and just let him finish it for me. That is what really would have happened. This time, there wasn’t anyone to ask. I let that half-finished project sit and collect dust for months. In August, I decided I could figure it out because I had to if I wanted to get things done. That’s the hard part in widowhood: you don’t have a partner you can rely on. Someone that you know when you ask for help will be there. That was not always the case during the ALS journey. There were times during the ALS journey when I reached out and asked for help, but the help didn’t come. I get it. People have their own lives to live. They are doing their own thing, and sometimes, your need for help does not fit into their schedule or even their wheelhouse. So, I stopped asking for help as much as possible. It was easier to get through than deal with the disappointment of asking and no one there to provide the help. And, of course, there were times I didn’t have the energy to ask; I just struggled, hoping someone would see and offer.

Well, yesterday, I completed the project. All said and done, it was not hard, just overwhelming. That is an excellent way to describe widowhood, which is overwhelming. Tasks that you may see and go, “What’s the big deal?” are HUGE to those navigating the world of widowhood. When Tom died, I had to step out of the world I knew and act as if I had been living in this new widow world forever. It is hard. I doubted every step I took. I was often given lots of advice by people who could only imagine my world, all well-meaning, but advice that meant nothing to me. I knew from the beginning, because of the journey I had after I lost the twins and our son, that I had to do widowhood my way. It has meant I have done things that make people question my sanity. Heck, I question it, too, but I have taken every step cautiously. I looked at each situation and, most importantly, gauged how I felt about it. What was I feeling? Was it fear, or maybe it was anxiety? I sat with it to try and understand it before moving forward.

As I enjoyed the fruits of my labor, I reflected on other steps I have taken in the past few weeks and could see how working through the problem of the project allowed me to take another big step in this land of the lost. I am becoming way more productive, and that feels really good. I was not productive because of work or due to an advocacy commitment, but I was productive in my own life. Doing the things I did before ALS was hard. Reminders that a world with Tom was over. I can also see that many of the trips I have taken recently, while all amazing and I don’t regret one second, were my way of running from the reality of my life. If I am off having a good time, the project could sit and collect dust without me feeling bad about it. If I was jetting off to Europe, it didn’t matter if the kitchen wasn’t clean; I wasn’t there to see it. Completing the project was one more building block I needed to continue to find my way through this land of the lost. I know I still have a long journey, but I am happy I have developed the skills to look back and see how far I have come. I am happy I have the confidence to tackle projects I once would have left to Tom to save me from. I am learning; I have to save myself sometimes, and each time I do, I build confidence that I can navigate this land of the lost. I could also handle any sleestak that came my way too. You know I will report back to you if I see any but it will have to wait until my next big trip is over. I am heading to Belize at the end of the month. This time, I am not running away from my reality but will be doing so mindfully in this land of the lost.

All my love,

Lara

How long?

On By tomstroopsIn Alpha Lima SierraLeave a comment

Working through the grief journey is hard and at times exhausting. There are also the parts of the grief journey that you have to sit, be mindful and try to understand the “why” behind feelings you are having. So many things I have learned while on this journey, mostly things about myself. Like, I am stronger than I feel most days because after all, here it is, two years since Tom died and I am still standing. I have also learned how to tune in to the “big feels”. To dissect them in a way that helps me to understand why I do what I do. For example, when I am in my feels, I shut down. I find it impossible to do anything but binge watch some show on television. I don’t have energy to even respond to text messages or emails. I can get consumed by feelings and don’t want to engage with anyone. Sometimes it takes me several days and possible a week or so to recognize the spiral down, and sometimes, it just takes a moment to recognize what is happening to me.

This morning I woke up and laid in bed trying to figure out what is going on with me. It hit me as I pondered why I was a useless person this weekend…tomorrow is July 30th.

Picture taken a few months after we married.

July 30th is…scratch that…was our wedding anniversary. In fact, if Tom was alive, this would be our 34th wedding anniversary but sadly we were only married 32 years. I say “only” because we were supposed to be married forever. But the reality is that I am no longer married. However, the tradition surrounding our wedding has lived on, but I have been wondering all day if I should continue it. See, Tom and I eloped on the island of Guam. We went to the JP, no wedding dress, no pictures, really nothing except our dinner that night. We went to the NCO Club on Base and it was so late they only had one choice for dinner. That was steak, potatoe, salad and cheesecake. So that meal we made into a tradition. Having it every year. Even when Tom could no longer eat, we grilled the steak, baked the potato, made the salad and blended it so it could be given through his PEG tube. Last year we had the same meal, but it just wasn’t the same. This morning I went to the store to buy that meal but today it didn’t bring me joy or happiness. It was sad to buy this meal. This special meal that Tom and I would eat and remember that day, July 30, 1990. Before I went into the store I was talking with Grant and asked him, how long do you continue a tradition like this? His response, for as long as I need to. I feel like I need to but maybe changing it up just a bit.

During the ALS years we chose to do transitional Christmas traditions. It worked to help us ease into a Christmas without Tom. Now it seems like that is the answer to my question regarding the anniversary tradition. Keep parts, change parts and make it more of a transitional anniversary tradition. For me, it is incredibly hard to maintain traditions Tom and I created. It is hard on my heart, my soul and my mental health. Let’s be honest, if I think about what might have been, it’s all hard!

This is just another part of the grief journey.

All my love,

Lara

Two Years.

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow, Widow and Dating2 Comments

How has he been gone two years? It is something I have been asking myself alot as today has approached. It feels like I just gave him the last kiss I would ever give him while alive and it feels as if our lips have not touched in such a long time. The pain from his loss at two years feels different. My life in the two years since losing Tom looks different.

When Tom was first diagnosed, I thought, “how will I live without him?”  When Tom died, I had the same thought, but it was not so much a question but a fear of mine. Honestly, how would I? I had been with Tom since I was 19 years old. When he died, I was 52. My adult life only knew him. My adult life was shaped by our relationship. After the shock of his death, and yes, even knowing he would die from a terminal disease, I was still shocked. I think it had to do with how hard he fought to be with us. How even in respiratory failure or sepsis he bounced back, as if he willed himself to stay with us. So, when the disease got to the point he was riding the edge of locking-in, no longer able to communicate in a way that provided him with his definition of quality of life, and we knew it was time to follow his wishes, and remove life support, it was still a shock. Even now, two years later, I catch myself thinking, “how are you not here Tom?”

Does that question occupy my thoughts all the time? I will always grieve the loss of Tom. I now see that as time moves forward, my grief is not as intense. The thought of him doesn’t always bring me to my knees. Don’t get me wrong, there are moments when I can’t breathe, or I can’t see beyond the pain of his loss but those moments are not all consuming as they once were.  So how am I doing at two years? Well, I can tell you that the sharp edges of grief have softened. In fact, about 6 months  ago or so I noticed that I was transitioning from deep grief to healing. I consciously gave myself two years to grieve Tom. I know, I know, you can’t put a time frame on grieving, but I did put a time frame on me to try and work through not just the grief, but the trauma caregiving left me with. I hate to break it to you, but caring for a loved one is hard. Watching someone you love lose their physical and mental abilities is torture. I would be his caregiver all over again, because that is how much I loved him, but by no means did I always do it with a joyful heart. With a sad heart, yes. With an exhausted heart, absolutely. It has taken two years to work through some of those feelings. I know I am not done healing, but I am on the right track. I think that is the other thing I can say about being here at the two-year anniversary of Tom’s death, I am on my own path, and I am now at peace with it. It has not been easy to get here. I sat with my grief. I talked to it and worked through the fears and uncertainty grief can bring.

One of my fears was related to who I was without Tom in my life. I was always Tom’s wife, but who am I as just Lara. Well, I can tell you I am not the same person before ALS or even during ALS. I have found that I like being quiet and sitting with myself. I find if I don’t find time for mindfulness I have more anxiety. I kind of think this is due to the chaos that was ALS. The daily visits from clinicians, the anxiety of needing to be all things to Tom. Like when he needed to be suctioned. If he was still in distress after suctioning, trying every little step from breathing treatment, deep suction, using straight saline to work a mucus plug out to even giving him oxygen through his ventilator. These things may have only taken a few minutes to work through, but I felt as if they took years off my life and further broke my soul. Knowing I was the person he was counting on to breathe is an extraordinary responsibility. When you are in the middle of that, you just do it, it’s what is needed, but now I can look back and see the true cost caregiving took on me as I cared for someone with ALS that was paralyzed, trached and vented. That is what I mean by trauma. That is what I when mean when I say, I crave peace and quiet and allowing myself to be mindful.

At two years since Tom has died, I have completely remodeled the house. Our bedroom no longer looks like a hospital room, it no longer feels that way either. All the common living areas have been repainted. In my living room I have added a built-in unit and my kitchen, well it is completely different. I have been working to change the vibe of the house. I need peace and calm and that is what I have been working towards with the remodel. The house, while still our house, has slowly started to feel more like my house. The “we” mentality is giving way to more of a “me” mentality. I know it will take more than two years to really understand who I am without Tom, but I am learning and part of that meant changing the house to suit my needs.

At two years since Tom has died, I have added adventure to my life. Since March, I have been on the go. Some of the things I have done include a road trip to El Paso from Austin where I got to see the McDonald Observatory, spend time in Fort Davis, Marfa and even stay in a bubble tent in Terlingua. I have done a weekend in Wimberley, spent lazy days walking in Fredricksburg and heading to Waco with Trey to see the Dr. Pepper Museum and the Texas Ranger Museum. I have been camping at a city park and did Boonedocking on the beach in Port Aransas. I got to use my passport this year when I spent 3 weeks in Spain and Italy and had an amazing adventure in Washington D.C. for a trip that was supposed to be just 5 days that turned to 11 days. Upcoming adventures include a trip to Belize in September, possibly a cruise to Mexico in October as well as weeklong adventure to Costa Rica in November. I have even made hotel reservations for a quick visit to D.C. again in early December. Who knows what little adventures await the rest of the time.  I am taking the approach that I want to live a life of adventure, to make Tom proud of me. To show him that I am living life again, something he expressed to me many times.

At two years since Tom has died, I have found a special someone to spend my time with. Someone who understand my journey as it is his journey too. He understands not only losing a spouse but losing a spouse to ALS. He understands the toll caregiving can take. He too understands the desire to live life fully, to live the life your spouse was cheated out of.  He also understands and has experienced becoming a different, more authentic version of yourself after such a hard journey. Finding yourself connecting to someone other than your spouse is strange. Lots of open and honest conversations regarding the feeling of “cheating” have taken place. We help each other understand and navigate this new, strange world we must live in. We laugh and cry, we have adventures and are also happy just sitting quietly. He makes me happy, which is something I wasn’t sure would happen again as it related to a having a relationship. This is what Tom wanted for me. It is part of what he meant by wanting me to live life fully. We had the difficult conversation about me finding someone, either as a companion or something more. I would also shake my head and say, “no, not sure I can do that”, but he would counter with,” it’s okay if you do. I want you to be happy.”

At two years since Tom has died, life looks different. I am surviving and each day I get better at living as a “me”. When Tom first died, I didn’t know how I would live without him or if I wanted to, but two years after his death, I am learning how to live without him physically. I carry Tom in my heart now and his words do ring out occasionally to guide me. I have found not only will I survive this new, strange chapter of my life, I want this chapter to be a life lived fully!

All my love,

Lara

Living the Life I Promised: Adventures After ALS

On By tomstroopsIn Alpha Lima Sierra2 Comments

I have said or thought, two things can be true at the same time, so much in the month of May. May was an incredible month for me. While typically, my May is spent advocating for ALS and Caregivers, because after all May is the Month of … I did my part in the advocacy lane, I also took a giant step towards living the life I promised Tom I would. I have said over and over that ALS did not always take, it did give. It gave us the opportunity to say the things we needed to say. Tom throughout his ALS journey, especially in the early years of the disease, made sure to tell me he wanted me to live my life after ALS took his. He wanted me to experience adventures, the ones that we put off until retirement. He wanted me to find people to enjoy the adventures with. He wanted me to just continue to live. That is something that during the ALS years and since his passing, seemed would never happen. Until it did.

5 COUNTRIES, 11 CITIES

On May 5, I set off on a three week adventure with not just my sister from another mister, but Tom’s too, Cyrus. Cyrus and I met in such an unexpected way that we often give each other “that” look when people ask the question how long have we been friends and how did we meet. The quick answer and one I can expand in another blog is that we met at a pregnancy loss support group in 2001.

Cy and I had planned a European Vacation last July. The trip would take us to Spain where we would board a cruise ship with stops in Italy, Sicily, Greece, Montenegro, and Croatia. In total we went to 5 countries, and 11 cities. We called our adventure-CyNLara. Italy was an adventure Tom and I were to do together and so I carried Tom with me during that amazing trip. There were such happy moments and those are the ones that I share, but there were tears too. In Madrid, our first stop, I broke down in a way I have not done in a long time. Cyrus was there to hold space for me. To let me sit with my loss, to sit with the sheer enormity of me missing Tom. There were moments by myself as I would watch the beautiful scenery and think, I should be sharing this with Tom. The idea that I could be so happy and grateful for my life and at the same time be so sad and wonder how is this (losing Tom) my life is strange. It is something I am becoming more understanding of. Two things can be true at the same time.

1 CITY, SO MANY ADVENTURES

When Cy and I came home from Europe, I had five days at home before I was to head to Washington, D.C. to take part in an ALS advocacy event hosted by I AM ALS. This next adventure was one that I would experience with a new person in my life. This person came into my life, much like Cyrus. Unexpected and through a support group. Specifically a support group for widows/widowers that lost their spouse to ALS. He lost his wife to ALS just four months before Tom passed. We have been seeing each other since late January, and those around me have known about my new special friend for a while and if you watch my postings on FB you may have picked up on my special someone. When I left for D.C. we did it officially as a dating couple. Which just so you know is still super weird, since both of us still refer to our late spouses as our husband and wife. It works in the widow world, trust me.

D.C. is my most favorite place to visit. I was excited to share such a special place with this new person, whose name is Grant. I have shared D.C. with my sister and another sister friend of mine, Jamie. Tom and I have been to D.C. together 4 times and Trey has been several times as well. There is just so much to do. If you have never been, go. Like I mentioned the purpose of the visit was to give a talk to the ALS Community, but while there I was able to take part in some other amazing opportunities like sitting in on a Congressional Hearing listening to testimony that told of mine and Tom’s struggle to obtain skilled care while he was alive. We toured not just the White House but the House of Representatives. The two of us, thanks to Representative John Carter’s office, were able to stand and sit in the House of Representatives. We even experienced a concert on the Mall recognizing the 80th Anniversary of D-Day thanks to the Elizabeth Dole Foundation. Grant and I even found time to spend a morning at Arlington Cemetery. While that day was hard, the thought that two things can be true at the same time was also front and center on my mind. As we we watched the changing of the guard at the Tomb of the Unknown Soldier, tears quietly feel down my face. In that moment I was both happy and sad. Happy to be able to share this with Grant, the man next to me holding my hand and sad for losing my husband, the man I have loved for 35 years. Two things can be true at once and those two things can be polar opposites of each other.

The month of May was busy for me. I am exhausted. In fact, that exhaustion has probably played a huge roll in me getting sick. The day after I arrived home, I started running a fever. The doctor says it’s a cold, I say by the way my throat feels like I have been swallowing broken glass, it may be strep throat! Either way, I am on a zpack and resting. I have been home 5 days now. My suitcase is mostly unpacked and my laundry is mostly done. I would not change a single thing about my May adventures. I lived the month of May like Tom wanted and what I promised him I would. I had amazing adventures and I am finding companionship with a man that makes me happy. Which is a promise I made to Tom that I was not sure I could keep. I will say Grant came in to my life after I had done the hard work of grieving. He came into my life unexpected, much like Tom did 35 years ago and Cy did 23 years ago. Isn’t that cool how He puts the people we need in our lives when we least expect it??

I don’t know what my future holds but I do feel that there will be more adventures to come that I will take you along for so you can see that grieving and living whatever life comes my way can co-exist and absolutely, two things can be true at the same time.

All my love,

Lara

Remodel or Teardown?

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow, Widow and DatingLeave a comment
house renovation
Photo by Rene Asmussen on Pexels.com

This past year I have been remodeling the house to take it from fully accessible to more aging in place with my style added. Well, not really style but vibe. That is how I have styled my home, with a peaceful, calm vibe. It was needed after years of living in the chaos that ALS brought to our lives and home. 

Like the house, I have been under construction but my changes required a full tear down approach. That is because there is nothing to remodel when you are shattered and broken. That is what Tom’s death did to me. My foundation was so shaken that I crumbled under the weight of the grief his death brought me. It took me months to realize that the repairs to my heart and soul would take a tear down and full rebuild to repair the damage the ALS journey and his death caused. This is what a terminal disease looks like for the family on the other side, the beyond. 

Building myself back up has taken time, but brick by brick it is happening. I credit all the things I have done to date to get me to this point. Taking time and allowing myself to feel every emotion, to fully grieve my husband was necessary. It was hard, man, was it hard, but I did it and continue to do it. Feeling all the emotions allowed me to fully tap into who I was as scary as that is and who I wanted to be.  The hot-tub mindfulness, meditation and yoga have allowed me to sit with myself, learn to love myself and be comfortable in the pain and in doing so I found my version of peace and happiness. I found talking with other widows/widowers helped as well in not just normalizing the crazy things I was feeling and thinking but confirming that these feelings and thoughts were not just mine but that others felt the same. It removed the isolation and loneliness that grieving can cause. All of the things I was doing  allowed me to see the world in a different way. To see that I could continue to build myself up so I can have a future I could possibly look forward to living.  That’s a big statement right there folks. When Tom first died, I couldn’t see a happy future for myself and to be honest, didn’t even want to think about being happy again. How could I find happiness when Tom was gone? As the intense grief subsided and I started to see myself healing, being happy again was something I thought was actually possible and yes, I did want it. 

I am finding in this grief journey, the more I let go, the more abundant my life becomes.  Letting go of the intense grief or the guilt surrounding me moving forward with my life and Tom dying. I am reconnecting with friends, making new friends, finding hobbies and activities I like and shocker, I have even begun dating. I wasn’t looking to date just yet, but what started out as connecting with an ALS widower to get through the 2nd year holidays has transitioned into a friendship and now companionship or as I have been saying, my special friend/friendship.  There is a deep level of understanding and mutual respect for what we went through and what we are going through as we navigate life moving forward. I don’t think I would even be able to allow myself to feel happy if I had not done the work and taken the time to rebuild myself into the person I am today. Am I fully restored? Nah, but my foundation is solid as is the framework of this new me. Just like the house remodel,  I am different. There is no way around that but like I talked about in a previous post, this version of me is more authentic. I am more confident in myself and what I want for my future and like the remodel, my vibe is so different than it was before Tom died. 

As the home remodel is coming to a close, I have wondered what Tom would think. Would he like the new look and new vibe of the house? The same goes for me, what would he think of this version of me? I think he would most definitely be proud of who I have become and the path I am on with my healing. He would be happy that I can now honestly say that I am finding happiness in this beyond life of mine. What would he think of the remodel, well he would most definitely tell me there are too many girly touches, but if it makes me happy, he is happy. 

So whether you are a teardown or a remodel, take the time to do the work, understand the journey and the effort and cost in rebuilding is worth every minute and every dime!

All my love,

Lara