The old phrase was “phoning it in” but now days, it seems appropriate to say “zooming it in”. I am going to shake things up a bit and instead of writing a post, I am going to share with you the latest episode of a podcast I do through Zoom with my friend and ALS sister, Mary Hahn Ward. Our podcast, ALS Caregivers & Beyond, is something that started out of long conversations Mary and I have over the phone. We just get each other. For us we get to allow each other to see the real good, bad and ugly of our lives and what we are doing to move forward. That’s what I like about Mary, she is someone that is always looking to have gratitude, to be present and to find a way to make this world a bit better. When we talk, we don’t allow ourselves to get bogged down in the muck of the hard part of the journey, there is always a discussion of how do we move forward. She really introduced me to the idea of mindfulness and meditation and I have watched her for several years as she practices these things. I came to them after Tom died. In fact, my practice of mindfulness is only a few months in the making, but the changes I am seeing are incredible. So much so, that those closest to me can even see the transition I am making from heavy grief to healing.

In this episode, we discuss our own mindfulness and meditation journeys and how they have helped us find some peace in the destructive world of ALS.

Please follow the link to Episode 13, Meditation Mindfulness. Enjoy!

https://rss.com/podcasts/als-caregivers-and-beyond/1303241/

Not a day goes by that I don’t think of Tom. I think of him when I wake and he is on my mind as I lay my head down for the night. My grief, while a constant in my life, doesn’t control me throughout the day like it once did. Yes, there are still moments that I am stopped in my tracks and sometimes brought to me knees but I recover from the anxiety and heartbreak faster now than a year ago, because I have been working through the grief as it comes. I have acknowledged it, sat and listened to it, all in order to understand and be present in it so I could just process it.

I wanted to process Tom’s death differently than I processed the 2nd trimester loss of our twin girls and our son so many years ago because let’s face it, I didn’t process their loss. I ignored it. I stayed busy. I drove Tom crazy trying to have another baby and when that baby came so very early, I was able to again, ignore my grief and concentrate on my tiny, 24 weeker. I had the twins in 2000. Our son came in 2001 and Trey was born in 2002. It was in 2010, I couldn’t take the incredible sadness any longer so I found help in grief counseling. I learned I had been stuck in my grief and for a long time it is where I though I belonged. Frankly, it was a comfortable place, until it wasn’t. After being in therapy for awhile, I started to come out of the darkness to a whole new world of amazing experiences. I let my stuck grief control me for years.

So with the reality of Tom’s diagnosis, I knew early on, that I could not lose another 10 years to grief. Tom knew it as well, and we talked about a time when he would not be here. Since his death, I have been in counseling working on understanding my grief and the trauma that caregiving left me with. Even with the hard work, sometimes I feel like I am spinning my wheels. The second year has been hard, in fact, from mid October through early December, I have struggled big time with anxiety and this restlessness that is hard to describe. A week ago, I posted about my new found love/love relationship with Tom’s hot tub. I have been in that hot tub every morning since just before Christmas. In the early hours of the morning, I feel nothing but peace as I wait to greet the day. Not every morning have I been able to have some amazing meditation experience, but when that’s hard to do, I sit quietly and just sit in mindfulness.

In the last few days, I have had two primary thoughts that I am working through. A few days ago, as I gazed at a star, my mind was quiet in the sense that I didn’t care what star that was, or what constellation it was in. I didn’t care or want to grab my phone with my constellation tracker app. I just sat there and admired it for what it is, a star. That thought had me thinking of other aspects of my life. That some things are just what they are-nothing more, nothing less, they just are. In therapy, I was enlightened to the idea that when we wonder about something and we don’t have the answers, we fill in the blanks. This mostly happens with the people around us. Ever thought to yourself, “why would they say this or do that”, we reason why by filling in the blanks, but not really knowing the real reason. Seeing that star for what is was, just a star reinforced the practice of mindfulness and has brought me to the thinking that I want to live this new journey of healing not filling in the blanks, just being present, accepting and wanting things for exactly what they are.

The other thought happened this morning. Since I was again having a hard time with meditation (they call it practice for a reason), I decided to do a guided meditation. In this one, it is a series on resiliency with the first meditation on acceptance. First, that is a big, hard word for me. When we lost our babies, I vowed I would never accept what had happened, that acceptance meant I was okay with their loss. In my pain and at the age of 30 that is where I was. I have never said the words, acceptance and pregnancy loss together. This morning’s guided meditation actually had me thinking about how do I fit acceptance into my grief journey with Tom. What does that mean to me? I can tell you I am more willing to sit in acceptance of this new life because honestly, the only choices are to accept the new life or keep fighting it and living in grief. I decided I would work on it as part of my healing journey.

I now see that possibly the anxiety and restlessness I have been feeling just may be the fear of transitioning from grieving to healing. Am I ready to leave my grief? I know there will always be a part of me that continues to grieve for Tom just as I do for our twin girls and our son. I can’t even begin to tell you how I am really ready to feel something more than sadness and the incredible weight of losing my husband. In the quiet this morning, I had a talk with Tom, don’t worry he did not answer back, but he did listen to me as I discussed all the feelings I was having. I told him that I love him but I am going to really buckle down and start the healing process. I don’t want to lose another 10 years. I want to live a vibrant, happy, peaceful life. I want laughter and excitement again. But they won’t come until I am ready to let them in. My morning hot tub time is helping me to quiet the noise in my head to understand what I want and what I need to do to achieve those things so I can let them in. I know because of conversations Tom and I had, this is what he wanted for me and so in the quiet this morning, I imagined him smiling that smile of his that reached those beautiful green eyes.

So, as I head into 2024, I am grateful for the journey in 2023. Every tear, every fear I had, and all the hard work has led me to today. A place that instead of looking at another year, as just another year, I am open to what may be waiting for me. I am grateful for listening to a friend that said, try the hot tub in the morning and for being open to getting up early to experience peace just outside my front door. I will continue to put the hard work in to ensure I continue to process my grief. I will work to find those things in my life I need to continue to heal because all I want is to be present for a future with peace, excitement, hope, love and some amazing adventures!

Well, it’s that time of year, Christmas is upon us. For many people, it means white-knuckling your way through because the festive, family Christmas everyone on social media is posting about seems out of our reach. We see it, we long for the time we wanted it, but the shiny, sparkle of it is no longer there. For some in the survivor lane, they are still in the “year of firsts”. For some, like me, it’s the second Christmas that feels tarnished. For others, they are three years and beyond and hopefully have found a rhythm to getting through the holidays and for the very lucky, they have allowed themselves to have authentic joy during this season.

For those close to me, they know the struggle I have had the past several months. I personally have found year two to be very difficult. Not in the shock and numbness of year one, but in the reality of feeling the pain and sorrow of losing the love of your life. This is the year I have been forced to really take a good look at where I have been, where I stand today and what I envision my future to look like. That is part of the difficulty. Envisioning MY future and not OUR future. I spent 32 years dreaming and planning of a future with Tom. So it makes perfect sense that thinking of my future without him is so difficult. Even planning for this second Christmas without Tom has been hard. I went in to this month with the motto fake it till I make it. I put up the Christmas tree, pulled out the decorations, had lights put up outside but I just don’t feel it yet and I am okay if I don’t. Not one Christmas song has played in our home or in the car. I use to love listening to Christmas music, especially on Christmas Eve when Tom and I would drive around with it on the radio as we looked at Christmas lights. I miss that tradition. Trey doesn’t enjoy stuff like that, so getting him in the car is a hard no. I don’t want to do it by myself, I would just ugly cry the whole time. This is what I mean by a White-Knuckled Christmas, just getting by the best you can. Doing or not doing traditions.

So how am I doing is the question I have been asking myself every morning this month. Some mornings I just tell myself to put one foot in front of the other, other mornings I flip on all lights, pull up a playlist (not Christmas music of course) and listen to music loud! Some days I can sing and dance, some I just listen. Is it still hard. Yes. Am I getting through? Also yes. Maybe not in the cheerful way of pre ALS, but I am getting through. I have discovered and re-discovered things that help me get by. I have two very close friends, who oddly enough both have the same middle nickname, “fucking”. I know you are like, WHAT???? Think of it like Lara “fucking” Garey…maybe not a middle name, more like an amazing description of these two women. One I have known for 22 years, the other only since the ALS journey. Both have helped me tremendously by listening and offering love and guidance. They both inspire me and help me to look at what I have and not what I don’t. I have discovered I am a storyteller. This blog and a podcast I do now have helped me along this journey in ways I would have never dreamed. I have connected with an online group of people that have all loved and lost spouses from ALS. I have found listening to the journey of others and how they handle situations has been helpful. Being able to talk to other widows/widowers has allowed me to process the little things that come up, some of which would be hard for those that have never experienced the loss of spouse to understand, but they do. Even things I am slightly embarrassed to talk about (and at this point I am sure you are like, seriously Lara, you embarrassed, but yes) I can ask without feeling judged. In fact, they are usually very quick about saying, yes, I feel the same way. Honestly, it helps me to be hopeful and to see I am not as crazy as I feel these strange feelings or work through finding a safe space for my past as I look to my future.

It is because of all these people, and so many more in my ALS and veteran caregiver community that I can say while I am white-knuckling my way through Christmas, they have all helped me ease into it this year and little easier than last year. I hope that if you are in your first year of grieving your love, or even acutely aware that you will be in the not-so-distant future, you know there is hope. Setting your expectations in reality helps. Knowing the first year may be hard, but the following may be slightly less hard and so on. I also hope you find people that can help you along your path, be they long time friends, newer friends or social media friends. Find your tribe.

Merry White-Knuckled Christmas everyone!

When Tom first died, I read that year 2 was harder. I thought to myself, no way it could be harder than it is right now. I am here to say that I was wrong-ish. Is it harder then when he first died? I say it’s different but the feelings are still strong. which makes year 2 of grieving still sucks diddily ucks! [Simpsons reference and one that my Tom just laughed at] Grief is such a hard thing and let me just say right now, I don’t recommend, absolute -100 out of 100! Here is the thing, we can’t get out of it. No one leaves this place alive. We all die at some point. So why is this so hard-because as a society death and dying are something we don’t talk about and the journey for the survivors, forget about it!

When Tom was sick, I did so much grieving. Grieving for him because he was diagnosed with ALS. Grieving for us as a family because we were losing the head of our family. Grieving for Trey because he had an amazing Dad that he only would get limited memories with and grieving as a couple that our forever love was his and not mine. Lot’s more but you get the idea. Then he died and the anticipatory grieving ended and a new grief began. When he was here and I would grieve a particular loss, I could go to him and hold his hand, lay my head next to his or give him a hug and kiss for my comfort as much as his. You would think that with all the grieving you do during a terminal disease, you would be grieved out. Nope, at least not in my case and I suspect not for many people that are survivors of a terminal journey. Now when the sadness comes, I cannot physically touch Tom for comfort.

Looking back, the first year of grieving was filled with shock, yes shock. Even for those of us that knew it was inevitable, it was still a shock he was gone. That shock contributes to a numbness as you move through the days, weeks and months that follow in the first year. There are the administrative tasks you must tend to after your loved one passes. There were days spent in bed crying allowing myself to feel the pain and grief. I held tight to the idea that I just needed to get through the year of firsts. Somewhere I imagined that if I could get through that first year, I would be okay. The shit you tell yourself to get through right? Who hasn’t heard people say, “don’t make any major decisions during the first year of loss”? How about, time heals. How much time does it take? It is different for everyone, but if you are in your second year and still thinking this hurts so much, you my friend are not alone. If you have not had to deal with this type of loss but you know its coming, know that the one year timeframe is an old way of thinking. Grieving is like climbing a mountain, slow and steady up that mountain you go, but one pebble, one limb and you lose your balance and you slide back a little.

My pebbles or limbs are the triggers that make me backslide in my grief, and yes my mental health. The numbness of Tom’s death is fading and the very real pain of his loss is what I am feeling. Backsliding makes me mad. My head says I should be doing better, but my heart and soul react differently to the triggers. The one difference between then and now is that I have learned in the past year to give myself grace. To be gentle with myself and realize grieving is in my time, not where other’s believe I should be 16 months after losing my husband. The truth is, I put the timeline on myself based on years of hearing about the one year decision making statement. It is me that has put pressure on myself as I move through my grief. Sometimes, my internal voice tells me that others expect me to be further along or that I must be weak to not have moved farther than I have. I spoke at an event last week and in my talk said that ALS shattered my world, but it was Tom’s death that broke those remaining pieces of myself. That is such a big statement and how sad, but in year 2 that is exactly how I feel. Picking up the pieces is very hard when you do it alone, but I am the only person that can do it, because I have to be able to put the pieces back myself in the best way I can.

I recognize the place I sit at 16 months will be different at 24 months. I need to continue to be gentle with myself as I put the pieces of my shattered life back together which admittedly is hard because of the pressure on myself at times. Getting to the top will happen I know. I know this because somewhere in me, I know I am not weak but incredible strong. I will make it up my mountain, slip-sliding down many times before I eventually reach the top, but I will do it at my own pace. So if you are reading this and didn’t realize that grieving in year 2 is hard, please know it is, but also know you are strong, you will make it up the mountain. The trigger(s) that makes you slide back is just a pause in your grief journey, you will stop sliding and regain your footing. It is a lonely journey up the mountain, but it’s lonely because only you can find the right path up it. Give yourself the time it takes and when you reach the top, know the strength it took to get there was yours.