Subtitle: It’s not what you think.
It’s been a long and hard week at the casa. I saw a neurologist, my regular doc, had a sleep-deprived EEG so I went almost 40 hours with no sleep, saw my grief therapist, the polar freeze is just absolutely unbearable on my swollen joints, some painful relationship stuff with my daughter, and last night I just has a breakdown of epic proportions. The biggest one I think I’ve ever had. I just absolutely lost control, could not calm myself down, and had to reach out to a safety-net person to talk me off the ledge – or rather, to listen to me without trying to fix anything, until I talked myself down. I passed out from pure exhaustion before 8pm and slept for 11 hours. Woke up today in a fog. Head throbbing, nausea, swollen eyes. I feel like I’m hungover.
Let me back up. I’ll start with the neurologist. I like her very much. She has a great bedside manner and she is very attentive. She isn’t willing to say I have MS and she isn’t willing to say I don’t. She ordered a sleep-deprived EEG and an MRI of my thoracic spine. That’s the only thing they haven’t imaged yet. Ugh. She said my symptoms could also possibly relate to something damaged in my mid-spine or a number of other auto-immune conditions, not just MS. The MRI isn’t until mid-February, but I already had the EEG done. The results of that combined with my soon-to-come MRI will dictate next steps. In the meantime, I’m still putting any spinal fusion on hold until we can figure this out.
Therapist: She’s providing me with some really useful tools for working through the moments that feel unbearable, how to get myself unstuck if I feel stuck. We talked about cumulative grief and secondary grief. And then, there’s also complicated grief which seems to be more about the DEPTH of your sorrow and your ability to manage it.
- Cumulative grief is experienced when someone experiences multiple losses. especially in a short period of time.
- Secondary grief relates directly to the loss of the person who passed away; but it’s grief for the LIFE you had, not the person himself. It’s grieving the loss of a partner, the loss of someone to plan things with, the loss of your lifestyle, the loss of your memories and inside jokes, the loss of your identity, the loss of your faith, in my case the loss of my health…I think you get the picture.
- Complicated grief is basically grief x 10. It’s more about the griever’s process and how it affects them.
We discussed my very newfound extreme sensitivity to anything Michael-related and my uncontrollable sadness. I’m having a hard time even seeing his photos right now. And then she said something that hit me like a 2×4. She told me to brace myself, because I haven’t even begun to grieve Michael.
Huh? Are you fucking kidding me, lady? That’s all I do. ALL. I. DO. And then she reminded me, nope. I was supposed to take 2 months leave, but I was working/ connected the entire time. I moved my daughter in amidst a lot of drama. I learned I have a painful disease that’s impacting my quality of life dramatically. I also learned my spine is a hot mess and I need surgery. I dealt with floormageddon. I pulled off standing in front of 130 people at a Gala 2 months after I lost him. I’m sure I’m forgetting stuff but again, I think you get the picture.
She talked and I believed her. I think the real pain is yet to come. When I came home and looked up complicated grief (the article linked above), the description fits me to a tee. And while I KNOW it’s still fresh and I KNOW this process will take a lifetime, and I’m not looking for or desiring shortcuts, I also know I feel stuck/ like I’m moving backwards. This is literally the hardest, most painful experience I could ever imagine. There’s no textbook. There’s no escaping that the core of your being is just gone. There are no instruction books for starting your life all over again, against your wishes.
My loneliness is pretty intense. My sister will be arriving soon and that will help a lot. Nights alone are dangerous for me sometimes. I let my mind go to really dark places and have nothing to distract me from it all. I’m not really comfortable going out in this cold – it REALLY fucking hurts. I’m also super stressed about my health insurance. Long story but it’s very stressful. I’m headed towards some trouble if I don’t find some solutions soon. But the flip side is, I AM trying to find those solutions. I haven’t given up.
In happy news, I’m looking forward to Sunday. It’s our annual GK holiday party and I have some super fun stuff planned for the volunteers. It will be a double-edged sword: I’m really looking forward to it because I love love love my volunteers, but I’m anxious because I KNOW it will call so many memories to mind. Last year, we held our holiday party in our new office space that was still under construction. We surprised our volunteers that this would be our new home, and Michael was SO proud. When he got diagnosed, he said he was going to beat this because he couldn’t wait to see what Good Karma was going to accomplish. Last year was a huge celebratory time in our lives. If only we’d known. 😥 But I will do my best to face the day and enjoy the company of these wonderful people, and be grateful to be surrounded by my tribe for a short period of time.
So, the recent mantra: “I will get through this.” I no longer say I’m okay, or I’ll be okay. Because NOTHING is okay. But I WILL get through this. Even if I can’t take a step, I will hold my ground and stand on both feet. Most of the time. ❤