After weeks of feeling optimistic about Christmas, I’ve hit a wall. It’s as if the weight of it all has caught up with me. Just a few days ago, I wrote a post on Facebook about hope and Christmas, but today, I find myself in a different place. This is grief, and it’s part of my journey.
As I began preparing for tomorrow, I noticed myself slipping into a state I can only describe as a funk. I’ve been trying to figure out what I’m feeling, but the truth is, I’m not sure I feel anything at all. It’s not sadness, but I do miss Tom and the life we shared. It’s not anger, but I despise ALS for shattering our lives and taking my husband. It’s not fear, but the uncertainty of the future fills me with dread—especially knowing the future I envisioned for us will never come to be.
So, maybe I do feel something. A lot of somethings. And that’s okay.
What breaks my heart is knowing that many others are facing similar emotions tonight. The loss of a loved one leaves a void that’s not just in the memories, but in their physical absence. For those of us who are grieving, this loss feels overwhelming, especially around the holidays. Yet, I try to stay hopeful, knowing these feelings are temporary. The question, though, is how long will this funk last? Will I feel better tomorrow? I never really know.
For me, there’s no magic fix. I can’t simply turn to one thing to make it better. I have to work through it. I need to understand my feelings, recognize what’s causing them, and learn from the experience. Sometimes, I grasp the lesson quickly; other times, it takes longer. But through it all, I know I will get through this. I’ll adjust to this new version of normal. I’ll find happiness again, and I’ll regain hope.
Until then, I will feel. I’ll feel the absence of Tom, and the grief that comes with it.
And you know what? It’s okay. I know I will be okay—and so will you, if you’re walking a similar path. This is something I want those who haven’t experienced this kind of loss to understand: We know we will be okay. We just need to work through our feelings, in our own time. There will be ups and downs, and sometimes they’ll come in the same day or week. But that’s the nature of grief. It’s the price we pay for loving deeply.
Can I tell you something? I would choose love every time, even knowing the pain of grief. That’s how powerful love is.
Hope will come. We’ll make it through Christmas in our own way, and when we look back, we’ll see how strong we really are. We’ll remember how we conquered this day, and yes, love will have carried us through it.
Today at HEB (the most amazing grocery store here in Texas for you who are not from the Great State of Texas), I found myself standing in the aisle looking for gallon size zip lock bags when memories of past Holidays came pouring in. I am not sure how long I stood there: three seconds, thirty seconds, or a minute plus. What I can tell you is that when I came back to the present, I was crying, and my heart was full of Guilt. I kinda believe this little visit from guilt has something to do with me actually feeling hope and happiness as I enter the holidays. Which is a complete 180 degree change from this time last year. Maybe there is guilt related to some advocacy I have been working on. We are close to seeing a piece of legislation become law, and I am terribly sad that Tom is not here to see this. It is something that meant a great deal to him. Maybe it has something to do with all my travels or maybe it is just that time of year when we reflect on the past.
Guilt is the little bastard of emotions, isn’t it? I will tell you that before the ALS journey in 2016, that little emotion controlled me. I let feelings of guilt related to me believing I needed to be more or do more. Of course, that was of my own doing right. People can’t make us feel guilty; only we can do that. I mean, people can try but it is an emotion that you alone control. So why today, in the middle of the aisle, looking at zip-locks? Maybe it had to do with my shopping. I was picking up some items for Thanksgiving. I have not planned or cooked a real, traditional Thanksgiving meal in a long time. We have been lucky enough to be the recipients of Thanksgiving meals thanks to our amazing neighbors while caregiving took all my time. The year that Tom died, our family had a Thanksgiving dinner and last year we pretty much skipped it.
As I finished my shopping and drove home, this post started to write itself in my head. That’s typically how my posts start, with me trying to figure out what I am feeling or why. When Tom died, I felt guilty for being alive. When I smiled again, I felt guilty for being happy. Taking these trips, yep, guilt for having adventures Tom would never have. Here is a big one: guilt when I started dating again. The guilt with that, HUGE. I mean I felt like I was cheating on my husband. With each of these, I felt the emotion and recognized that it was just that, an emotion. The reality was that yes, I was alive and he was not. I was finding happiness again even with my broken heart. I could and did enjoy my adventures, the ones he never went on and yes, happiness in dating a man that was not my husband, I mean that was not my late husband was real.
Our brain and heart plays tricks on us. Sometimes they refuse to work together to keep us in the now, in reality. I think this is why I have found it is so much easier to give in to the feelings and not fight them. It allows me to listen to what my body and mind are telling me which I believe is just to feel the sadness. Usually if I do allow myself to feel the feels, my brain kicks back in and grounds me in reality. Tom is gone, but I am alive. Tom’s wish for me was to live my life and find happiness and I am really trying hard to do that. It is when I can do this, that my emotion of guilt is replaced with gratitude.
When I feel gratitude, there is no room for that little bastard of guilt. Gratitude is an emotion that many find hard to find, but if you can, it will allow you to find the happiness that seems impossible when you experience loss. So as I stood in the HEB aisle today, I took the journey from guilt to gratitude. Sometimes, the journey is fast; sometimes, it takes a hot minute to figure things out.
As we approach the first holiday of the season, I wish nothing but a fast journey from guilt to gratitude for those that are struggling. Focus on gratitude as hard as it may be, just stay focused.
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.
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!
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!
