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.

Tom, how is it even possible that our last moments together were one year ago? I remember talking to you after Big Benton died and telling you that you could not die before me because living without you would be the death of me. You told me you couldn’t promise me that, and I knew you would never because promises meant something to you. The words, “I miss you,” just don’t seem adequate, not powerful enough, the same as the words, “I love you.”

After you were diagnosed and several times after, you told me you didn’t want me to spend the rest of my life grieving you. You wanted me to live. To find happiness, to find adventure and even love. I told you, “no promises.” I couldn’t promise those things when the idea of losing and living without you seemed like it would kill me.

A year ago, I promised you that Trey and I would be okay. We would make you proud. We would live life and have adventures. I did that, but not 100% sure I could. As the minutes, hours, and days have turned into months and now one year, I have worked hard to keep those promises. It has been hard. I still have days I can not get out of bed or a panic attack will drop me to my knees, but eventually I get up, and I move on and work on keeping those promises I made to you.

We have had adventures this past year, and Trey and I are making it, probably more surviving than anything, but hopefully, this coming year, we will find our rhythm and begin to thrive.

Sweetheart, I love you and miss you terribly. Today, as we remember you, we also honor the promise of adventures. Trey and I are on one now, not wanting to be home for this weekend. I know you are loving this one as it feeds Trey’s love of military history and piggybacks off one you and Trey once did.

You gave me so many things during our 33 years together, like what it feels like to be fully and wholly loved. You gave me a life of joy and laughter. In the last years of your life, you showed me what it looks like to do hard things. Without realizing it, you gave me the strength to go on living. I now repeat the words, I can do hard things, when the grief becomes too much. 

I love you and miss you. I am keeping those promises because I can do hard things.

Love you, Me.

I have two rooms in my home that have been the “dump it and forget about it” rooms since Tom died. If I come across something like old medical documents, pictures or even just cards between the two of us, it goes in one of the two room. Don’t get me wrong there is other stuff that I drop in there that I have no clue what to do with. Those things that I would always ask Tom, if we really need the object. You know what I am talking about, old electronic components, owner’s manuals, old computers that no longer work. There were some things he couldn’t part with so we kept them. There are things I can’t part with like pictures Trey colored when he was in elementary or birthday cards that Tom wrote loving things in. I think we all have these rooms or at least a corner of a room where we put those items we just are not sure what to do with. I am tip-toeing around the idea of actually calling myself a hoarder, but let’s be honest, do I really need to keep owner’s manuals when I can pull them up on-line?

This afternoon, I started pulling all the crap out of my front room. It use to be my office when I had my own environmental consulting company. It was a great office too, but that part of my life is over. Then during the ALS years, I put in some exercise equipment. I always seemed to over-estimate my time and abilities. As I look through all the paperwork, trashing old work papers and yes the owner’s manuals, I am finding little treasures. The cards from Tom that I put in there because I just couldn’t handle looking at them, today are sweet finds. While they still make my heart hurt, seeing his handwriting, knowing he touched THAT card does bring me, but for a moment, back to him. Just as I am drawn back to him with sweet memories, not so sweet ones come at me too. The medical binder I kept in the early day’s with the Doctor’s notes that identified his diagnosis was ALS. The first handicap placard he received because he was having problems with foot-drop. I found an old planner with all the doctor’s appointments and little notes I wrote to myself, like a daily journal. Such raw emotions in the beginning. The prayers I would write, praying he had anything but ALS.

There are so many memories and emotions living in these two rooms. I am actually surprised I found the energy to even attempt to tackle my front room. If it tells you anything, the room I should have started with is my guest room, but the memories and emotions living in that room, well, that is just too much for me right now. Not sure there is a meditation I can use to prepare to tackle that beast of a room. What do I hope to gain from cleaning up the front room, besides a clean front room? I think I hope to figure out how to mesh the old memories and emotions with new ones. I am hoping to claim that room back, much like I am trying to claim my life back. This has been such a hard journey both the ALS life and now life without Tom. I know Tom would want me to move on, to figure out who I am and forge ahead, but I am just having a hard time with letting go. Can you say lot’s and lot’s of feelings of guilt come to me when I think of moving forward. I have even had those close to me tell me I should not have those feelings, but saying it and feeling it are two very different things.

So, I take baby steps. Baby steps in moving forward. Baby steps in giving myself permission to live a new and different version of a beautiful life. Today I am taking that baby step by tackling one of the two rooms that hold so many memories. I am cleaning up, making it my own and trying really hard not to feel guilty about it.