How long?

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!

This is just another part of the grief journey.

All my love,

Lara

Good for the soul

Last week I had the opportunity to attend the Indianapolis Hidden Heros/Today Show event. The Elizabeth Dole Foundation (EDF) and its Hidden Heros Campaign were featured on the Today Morning Show. The show dedicated a whole hour to military caregivers. Caregivers for veterans of all eras were brought together for what they had in common. They were brought together because they love and care for wounded, ill or disabled veterans. I mentioned to another Dole Fellow that I was having a hard time putting into words exactly what being with these people meant and she hit the nail on the head when she said, “it has been good for the soul.”  She was so right and as I reflect on last weeks trip (and talk it over with my  therapist) I realize that I was actually unaware of how that part that makes me, me, had been drained. The stress of this disease, the fear of my future alone without the love of my life and the realization I need something of my own and not just be seen as the Big He’s caregiver had drained me. Who knew a crazy, busy two days would actually fill my soul.

The first full day in Indy was a busy one. There was a luncheon at one location followed by art therapy and dinner at another location. This was my first event as a Fellow and my first real trip since the diagnosis that I have done without the Big He. For this trip, I had two goals I had set for myself. I wanted to meet and connect with as many people as possible and step out of my comfort zone and just be…alone. I think if I was to follow my old habits I would have stayed close to the few caregivers that I knew through Facebook (and I did a few times) but I also ventured out and struck up conversations with other folks as well. Guess what, I survived and I met some amazing people who have been through their own extremely stressful time. Some still are, some are finding comfort in rehabilitation and a new normal and some know that their life will continue to be guided by the visible and invisible wounds their warrior suffers from. Everyone’s journey is different but we all share the same feelings of fear, anxiety, being overwhelmed and a since of loss for ourselves and for those we care for. As I spoke to folks I found that it wasn’t really like talking with strangers it was more like talking with family I just hadn’t met yet and trust me, I come from a big Italian family and there are cousins I have never met. I am sure if I did run into them, it would be the same, the sharing of a bond that cannot be broken.  We are caregivers of disabled veterans. 

While there were plenty of smiles, I did have a few moments where the sadness crept in and over came me. I saw families. Husbands and wives, fathers and sons and daughters. It seemed as if everyone had their veteran with them and I did not. So, like the problem solver that I am, I video chatted with him and let him just watch and take the excitement in. The evening was made more special sharing this with him. While I was showing him the room I was able to point out the amazing Senator Dole along with Savannah Guthrie and Tom Hanks. It just so happened that while I was sharing the excitement of the day with the Big He, a Today Show camera and producer caught me and soon Tom Hanks was video chatting with my veteran. How cool is that. While the Big He could not physically be there, he was there and could be a part of the festivities. Technology can be a headache sometimes but in this case it was a blessing. 

Meeting and connecting with other caregivers and experiencing the event with the Big He had my mind on over drive by the evening. Once we got back to the hotel, I couldn’t sleep so I figured I would accomplish my second goal which was to do something that included a party of one. I went to the hotel bar, something I would have never, ever done before. I needed to prove to myself I could sit by myself, at a bar, and survive. I know that may sound silly to some but I have never really done anything alone. I am the youngest of four, I went from my parents home to married to the Big He. Being alone is something I have never had to do. Knowing the end game for this disease, I know I will be alone. Yes, I will have family and friends and of course the Little He, but after some time, everyone will fade into the shadows and go back to their own lives, and I will be alone. Doing something simple like having a drink by myself was practice for when the Big He passes. I think of it as I am a widow in training. 

The trip concluded with the filming of the Today Show. Even with thunderstorms outside the excitement in the room as we took part in the show was as energetic as the lightening from the storms. You could feel it. It made my heart full, my soul full to be surrounded by strong advocates willing to be open and honest about their journeys. There are so many stories out there each one filled with sadness, happiness, yes comedy but most of all each story is one about love. The Today Show helped to get the conversation started about Hidden Heros and the love we have for our veterans. 

All of this has energized me, to step up my advocacy game. If I can be half as amazing as the women and men I met then I am on the right track. This is something I can do that is mine. I can be an advocate in addition to a caregiver. 

So yes, the trip filled my soul in unexpected ways. It made me get out of my comfort zone, it allowed me to take baby steps as a widow in training and it gave me a purpose.  I have a voice and can use it to advocate for veterans and caregivers. 

Thank you Senator Dole. Thank you Dole Foundation team. Thank you Hidden Hero’s. Thank you all for showing me…me. 

 

All my love,

The She.

 

So, the Big He did get to video chat with Tom Hanks twice. In the picture of Tom Hanks holding a phone, that was the Big He. So many people were encouraging and helped to keep the Big He involved. His spirits have been lifted. He is doing much better these days. He is really finding his photography to be therapeutic. Oh, and by the way, seeing Sheryl Crow did not suck.