It steals moments, your ability to move and breathe, it steals your future, and it steals your loved one. When your person with ALS passes, ALS continues to steal from you. Not as often, but when you least expect it.
Many of you know I have been transitioning from the deep grief that comes when losing a part of your soul to a healing journey. Tom wasn’t just my soul mate, but our souls over 32 years had become bound together for our time on Earth. His death broke me, but not the connection that kept us together.
As part of the healing journey, I have been working very hard to find a safe place in my heart where Tom will always live but also allow myself to move forward in a way that he and I had talked about. Living fully. Not allowing his loss to prevent me from finding my path forward. My healing has also allowed me to better transition from the depths of grief that still come to accepting them and not allowing them to drag me down.
But I forgot what a thief ALS continues to be for those in the beyond part of the journey. Yesterday was a good day for me. Like really good until I saw the date. We are in the timeframe of ER visits. ICU stays and in two days, it will be the anniversary of Tom’s trache. In seven days, which is actually my birthday, it will be the anniversary of Tom’s unofficial ALS diagnosis. This year I will also turn 54, the age ALS stole from Tom. For thirty-three birthday’s, Tom was older than me or we were the same age. In one week, I will be older than him.
ALS continues to steal joy. Last night I was restless. This morning during hot tub time, it wasn’t mindfulness or meditation I was able to achieve but an almost manic obsession with finding pictures or text messages from this time in 2019. Again, ALS steals joy and peace.
Today,I will dig a little harder for the tools to push the thief out of my head. This is the journey of the survivor.
Lara
[Note: I quickly scribbled this out on my phone while in the hot tub. Which means I won’t make corrections for awhile so no editing comments! This is how I release the big emotions. It is when I am most vulnerable about this journey. It is the reality of my life. My hope is that others facing the beyond will not be afraid but see it as a process. Grief is the valley we walk through, but we don’t stay. There are very dark steps and peaceful, beautiful ones too. We are survivors, we do survive this part]