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
