I just got back from therapy. I started going back to therapy shortly after Tom died. At first it was weekly, then every two weeks, and now it is monthly. I don’t want to be stuck in the grief or have the trauma of caregiving complicate things. I know me, sitting in grief is a comfortable place. I did it after Tom and I lost our twin daughters and again after our son. Tom knew me too. During the ALS years, Tom and I would talk about what life would be like after he passed. He was adamant that his wish was to have me learn to live and be happy again and not get stuck in grief. Today the conversation of working through the trauma of caregiving and losing my husband with the therapist expanded on a conversation I had with my friend Mary during one of our podcasts. We spoke about being broken and how do you come back after such an incredible loss. Can you come back and be happy or do you understand that happy may not happen and you become content with your new life? My discussions with Mary for our podcast has been very helpful as I move through this side of ALS. In the moment, I don’t know if I will ever be truly happy again. The kind of happy you are when you are in your love bubble and the world’s problems seem so far away, because it takes a lot to penetrate that bubble. I was the kind of happy that while I knew and had experienced bad things, my love bubble was intact. I had my amazing husband and my amazing son. Until I didn’t. Tom’s ALS was the one thing that popped that bubble and my perception of things.

When we lost the twins, it happened to us, and we had each other to lean on. When ALS entered, it happened to us and we had each other to lean on. When Tom died, it happened to us, and I was alone. My happy was gone. My soul, like our love bubble had been pierced. How do you come back from that? How do you find that kind of happy again? Do you become content with life or do you learn to be happy again? To be honest, being content doesn’t seem like a good way to honor my husband. Especially when we had those conversations about learning to live again. Am I letting him down or myself? At 13 months post loss, the incredible emptiness of his absence is still so intense. I am talking about the happiness you have in life in general. Happiness that you find in being alone or in a crowd. The idea of being able to honestly say, I am a happy person. I used to be that kind of person, but these days that is not exactly how I would describe myself. I wonder if I had my happy and I should be content with just being content.

As you can see, there is a lot to work through. I didn’t just lose my wonderful husband and best friend. I am the product of what intense caregiving leaves behind. It’s called trauma. As a society, we don’t talk about this. The narrative is that family caregivers give of themselves, they are selfless for caring for their loved one. Do we think about the unintended consequence of what that caregiving does to the caregiver? Do we even speak of it? I think the answer is yes, we talk about it. If we tell our story, the good, bad and ugly maybe we can normalize these big feelings. We will all be touched by death and some of those deaths will be so monumental they will change you to your core. When that happens, know it is okay to tell your story. It will be how we work through the trauma and grief. Maybe we will find that working through these things will show us that while contentment is perfectly acceptable, maybe we will find we want to find a new happiness. I look forward to that day.

Working on finding my happy again,

Lara

NOTE: While it is only the person that is diagnosed with ALS, and they alone must battle the actual disease, ALS is still a family disease. There are two sides to that terminal illness coin. The person with the disease, and the family that steps in, steps up and experiences every second of the disease with them, and it is the family that is left to pick up the pieces after the loved one has passed.