Before Chris passed away I did try to learn a little about what to expect for me. Hoping so desperately that it was something still many years in the future. However it was hard because often the stories shared by others were in the myeloma support groups. Those who did share focused a lot of the right before and right after and then usually they either left the group or didn't post as much. Now I've found myself in the same position, not wanting to burden people who already have so much on their plate, not sure what to share that would be helpful as each of our journey's is different. For me it was the details of the final moments that were too much. The act of dying with myeloma that I read (and I'm sure others cancers and other diseases) were often not pleasant and rather gruesome. I'll spare you the details, they still haunt me.
I feel blessed as well as conflicted, that I wasn't there for his final moments. I vividly recall looking him in the eyes shortly before they wheeled him away, reassuring him that things were going to be OK and that I loved him. I'm fairly certain that I also reached up and kissed him on the cheek and held his hand as long as I could. Trying to push back the worry in my mind about what would happen when he returned from being intubated. We'd been there before five years before and it was tough. The rest is a bit of a haze, and I've blocked out most of what they said happened in the short time we were apart to when he was gone. Grateful that it was sudden and quick, and that he didn't suffer for a long time, yet wishing I could have been there to comfort him. But yet not, being there with him in his final moments would have been even more traumatizing for me. I much prefer the tender moment we shared.
A manila envelope from decedent affairs sits on my desk, filled with more details than I probably ever would want of his final moments. His autopsy. I don't know what to do with it. I'm afraid to put it someplace "safe". Much like chemo brain, widow brain is a struggle. It can cause you to lose things, and I worry I won't remember where that safe place is. Knowing what went wrong seemed more important to me in the hours after he died, but now I don't know that I ever want to read it. Just thinking about what they had to do to get those answers breaks my heart. Eventually my plan is to meet with his doctor one last time and ask him if there are details he thinks I should know, but visiting the hospital has just felt too much. So for now it sits just out of my normal line of sight, but in an obvious place.
I remember however in those online support groups, stories from other caregivers and their journey with grief. They would talk about how sometimes there were things that they just didn't want touched and left just as they were. I remember for one it was a glass in the bathroom because it was the last thing they touched before they collapsed, another it was their mother's purse in the car, and yet another it was their slippers or dirty clothes. Now here I am, finding that I have the very same illogical thoughts.
The towel he last used still hanging on the the hook of the shower, a reminder of the sheer and utter bliss of being strong enough to take a shower for the first time in months just a couple weeks after w e had finally returned home. In a shower that was built so lovingly by his brother. A shower that allowed him to feel safe despite his neuropathy pained feet, with rails to help give him strength and confidence when he was still so weak. His lift recliner still sits in the same position that he left it in. That chair was a gift from my late grandfather when my sweetheart was diagnosed with myeloma. It was such a treasure to him and helped ease his burden. It also was a helpful tool that helped him build up the strength to walk again. Perhaps one day I'll curl up in a blanket with it one day, but it will always be a sacred place for me because it was such a special place for him.
But those to me are at least somewhat logical to me, and there are other many other less logical things. When I saw this quote, I felt so connected this unknown person and their journey with grief. My left toe nail has a small chipped piece remaining. When I see it, I think of going with my aunts a couple weeks before his birthday to get them done. It was a big deal and not something we decided to do lightly. I also think of looking at my pretty pink toes while taking a shower at the hospital. Then they were a reminder of an easier time and of family who loves me. Now I look at that small chip and think of how much I've been through since. All of the difficult days that I've somehow survived. It's been over seven months since they were painted. That little piece of nail polish is hanging on, and somehow so am I.
As I sit here and write this however, I'm struck with a profound sense of gratitude. I may not have the brain power to read, but I at least have been blessed with the strength to write. It seems counterintuitive and that writing would also take brain power that I don't have, but somehow it doesn't. While some days I may lack the emotional fortitude to write, the days when I do I often feel better. It's a great opportunity for me pause, reflect, acknowledge and express the changes that have happened and are happening. Tears typically stream down my cheeks, but they at least feel productive instead of just sad. I'm grateful that along the difficult journey of the past years that I've gained a different hobby without even planning on it. I've been given the gift of writing to help me through my pain.
