Molly mentioned her song “Beginning Here” tonight. I don’t remember the song but I remember thinking about those words and how I get to begin again here.
A lot has changed for me recently. No longer at Scripps, don’t have Bing’s, different role at DBSA, Randy’s death. Also the major process of thinking I was dying and everything that went with it. I saw an ophthalmologist today who says I do NOT have Kayser-Fleisher rings. I hope that satisfies Dr. L that I do not in fact have Wilson’s. I think I’m experiencing seizures. But aside from that, everything has changed. The people I once leaned on for support are not there and the structure I’m used to is gone.
What do you do? I found out about Randy on Monday and I’m very aware that the other people going through it are not really people I can lean on. Bonnie was right when she said I’m a caregiver and I need to take care of myself. My homework from Jim this week was to do something for me instead of doing something for someone else. To stop for awhile. So I did that tonight. When the reminder popped up on my phone for the concert that I had put there in December I really wanted to go but thought that I shouldn’t. Then I remembered the homework and decided to go. I felt really agitated. Didn’t want to go alone. But I refused to let my aloneness ruin the opportunity. I had a good time. And I thought Randy would be proud of me, and probably enjoyed the show. But it’s my time to enjoy and I had better enjoy it.
One of the hardest things I’ve ever had to do is call my friends and tell them their friend has died and then listen to 45 minutes or so of the initial response… What do you say? Hang up and then do it again. There are people I take care of, people I rescue, people I listen to. But very few people actually listen back without giving me shit. And it’s not their job. At the group I am somewhat of a mother hen. I’m a caretaker and a leader, the one who gets shit done. And that’s fine. I’m good at it and I need that. But beginning here, I need to take care of myself.
I did a self-assessment this weekend I wasn’t happy with. I don’t like my level of functioning. I feel like I’m living a lie. I’m proud to be where I am, but people don’t know what that looks like. Most people assume because I can handle a health fair or plan a speaker or run a meeting that my day-to-day functioning must be okay. Well, it’s not. And I’m ashamed. (pause) I don’t even like saying that.
When I’m not at choir or group, I’m sleeping or online or writing. Or writing online wishing I was sleeping or somewhere else. Or at a doctor that I will write about online later. Or texting the internet to remind me. Unscheduled time and staying home are poison to me. I didn’t order a pizza yesterday because I wanted one. I ordered it because I can’t handle cooking. Using the toaster oven to warm it up today was a huge feat. So was grating cheese tonight to put hot sauce on and eat. I don’t brush my teeth, almost ever. I don’t do laundry. I don’t drive. I shower about once a week. I have great ideas but major difficulty following through.
I hear music 24/7. I have trouble thinking and reading. I’m not always here. I can’t get rid of things. And I can’t stop remembering, and not being able to remember. I don’t have insomnia, for the 1,000th time. I stay up all night because it’s quiet and it’s what my body likes, which is good because I can’t handle much day. I’m not okay. I’m pretty messed up as of late. I discussed this with my therapist last week. He said, “How would you rate your level of messed-upness?” (deep breath) Pretty high.
Beginning here I have to take care of me. There simply is no other option. I am so lonely, but I have to choose people to hang out with who don’t bring me down, people to chat with on FB who don’t make me upset, choose not to answer texts from some people. Also on my to-do list, realizing that although I need so much from certain people, they just can’t give it. To learn to stop trying, to stop wanting.
I have seen in the past few months all my years of therapy and groups coming together to form a new identity, someone much different than the girl who started this journey. Professionally, I am getting recognition from many sources. I am respected and my work is appreciated. People I don’t know know who I am. That’s awesome.
In some respects I have a lot. In others I have nothing. But I begin again here.
I’m scared. I have nothing to lose. Except for choir and that ends in 3 weeks. After that there is nothing but group. I can’t do nothing. What do you do when you find yourself on the edge of everything and of nothing? When you’re not sure what you want but it’s not what you’ve got? When it’s just you and the blog and Melissa Etheridge at 3am? I need some guidance and a hug.
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HUGE HUG today and everyday!
No one does “everything” you’re “supposed to do”. No one knows it all . . . Find comfort in what you do . . . you are unique and do so many amazing things – very well – that no one else could do. More people know and believe that than you’ll probably ever realize.
Always remember to seek out help from others – whether for large things or small.
When I look at my life, it seems like I was a different person at different stages. The “person” I was at some stages I barely recognize. But, it’s all part of what’s become me – at this stage – an interesting mosiac with ups and downs.
Just found your blog. Thanks for your courage in sharing what grief looks like. May you be comforted in knowing your words touched me where shit is true.