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.
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!!!
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.
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!
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!
Peace. Hope. Happiness. All feelings that have seemed incredibly foreign to me for a long time. I have spent the time since Tom’s passing searching for them. I know there have been quite a few blog posts and definitely some episodes in mine and Mary’s podcast ALS Caregivers and Beyond about this topic. This morning, I caught a glimpse and felt peace, hope and happiness. It was in the most unexpected place, in my backyard just outside my bedroom door.
I need to give you a little back story for you to fully get the epiphany I had. Tom has always wanted a hot tub, but it was always in the conversation that began with, “One day…” When Tom was diagnosed with ALS our “one day” statements stopped and we began to make them happen. So, one day, we bought a hot tub. I saw it as Tom’s hot tub. He loved it. He climbed into it any chance he could and would spend time just soaking in it listening to his music. Then he became paralyzed, trached and vented. His hot tub days were over and for the most part, so were mine. Instead of ensuring the chemicals were good or the temperature was just right to use, I checked these things periodically because I had to. When Tom died, I hated that hot tub. I have told Trey so many times, that we just needed to drain it and get rid of it.
So now that you are caught up on my hate/hate relationship with the hot tub we can proceed with the story. So, I was chatting with a friend who really likes their hot tub. Like, in it most mornings and sometimes early enough to see the sunrise. They said it was relaxing. So, since I am on a quest to find relaxing things to do in hopes that the elusive peace and happiness I have been searching for will find me, I got in the hot tub Christmas morning. While it was warm and felt nice, and possibly helped me do something that was not my normal on such a traditional day, I didn’t really find peace and happiness. But, this morning I awoke at the ungodly hour of 4:45 am. I know, I have no idea why either probably has something to do with the sick joke the universe plays on people that are getting older. While I did lay in bed just wishing to go back to sleep, I pondered if I should jump in the hot tub. I of course talked myself out of it a few more minutes because it was too dark…creepy critters hang out in the dark. It was also too cold. I mean who wants to go run outside in a bathing suite at that time of the morning and with the temperature around 33 F. Too early and too damn cold. So, I got up, put my bathing suit on, grabbed my portable speaker and phone and headed to the hot tub. I found that before I could get in, I needed to add water because the tub was making a weird sloshing/sucking sound which meant, add some water. So as I grumbled to myself that this was bullshit, it was cold and too early I went and grabbed the water hose to add some water. After what seemed like I was standing in the cold forever, I had enough water. As I ever so gracefully climbed in, so those that know me should have probably laughed a bit, because I am far from graceful, the warmth of the water started to settle the frustration I had been dealing with regarding the early hour, the cold, the not enough water, etc.
In the dark, quiet of the early morning combined with the warmth of the water, my mind started to settle. I could feel myself relax. Something I never really stopped to really pay attention to was the feeling of sitting in a hot tub in the cold. I get it now. I listened to some soothing piano music, and not just watched but felt the day begin. The tree’s that earlier had just seemed like flat silhouettes on a painting came to life as the sun came up. The quiet of the early morning changed as I heard the birds starting to sing to greet the new day. My friend Mary would say that I was being mindful. That I was living in the moment. I was. I also found that while I was aware of the day beginning I was also aware of thoughts floating in and out of my head. I was, what I now understand, had been doing my own morning meditation. Which is completely strange as I have only been ever able to do guided meditation, but this was not that. This was something altogether different. Today, in the wee hours of the morning and for the first time in a very, very long time, I felt peace and gratitude. Not just peace about losing Tom, but it was this overarching peace about my life-my past, my present and my future. I felt gratitude for being able to experience the beauty that happens when the day begins. For so long, I have felt the need to be on-guard. To be ready for anything. To handle any situation. To. Be. In. Control. The feeling of needing to be “on guard” didn’t seem to have as much power this morning. I felt like I could be me, the old Lara, the Lara that didn’t know ALS and the often unbearable heartache of losing the love of your life. I know I share a great deal with you in this blog, but keep in mind, I share what I want. I have never shared the really raw, hard stuff the things that often take me to my knees and would probably compel you to call in a welfare check on me.
This morning, I remembered it was okay to be vulnerable. Not in a powerless way, but in a way that allows me to feel and be in the moment. In a way that I see I need to be in order to heal. The version of me that is the person Tom loved. Someone who felt safe enough to be honest and vulnerable with him. In my healing, I am working on creating that same space for myself. This morning was truly transformative for me. I learned I needed to meet peace in the middle. I have to do the hard work for peace and happiness to find me. Who knew, that the real journey to finding them would be just outside my door should I choose to wake up at the butt crack of dawn and brave the cold to find them. The reality is that today is a good day. Tomorrow, I may not open that door and let the morning come without me witnessing it, but that is okay. It’s my journey!
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.
