The dance


So there I was, reading one of my old lady magazines, when I saw a great article about grief. Please take away from this piece that I have some thoughts about coping with grief, not that I read old lady magazines.


We usually associate grief with death, but there are many reasons for grief. The reason for my grief: my AE (although Coronavirus isn’t helping). Over the past two years, my life has become the classic five stages: denial, anger, bargaining, depression, and acceptance. It’s not the death of a loved one I grieve, it’s the “death of me.” Grief is common for AE survivors, and necessary for us to process our story and cope with our lives. I’m no exception.

I read this article after the second anniversary of my grand mal seizure. It’s an awful anniversary to celebrate, but as long as I’m in remission, it’s also an important anniversary to celebrate. It’s a juxtaposition that I’m supposed to make sense of, with a lot of time on my hands, while I’m still isolated. Grief is complicated.


1. Grief arises when you least expect it. I attended my aunt’s retirement party last summer and had a lot of fun. When I got home, I started crying. My family didn’t think it was weird, they actually anticipated it. What seemed like an enjoyable event of celebrating my aunt’s long and wonderful career, made me sad, because I realized that I lost my career. Don’t be embarrassed if grief creeps up on you.


2. You may feel physical effects. Early on in my recovery, I felt many physical manifestations of my grief. My sorrow and agony literally caused me pain. I still feel some pain, but it’s much less. I think this one subsides more quickly.


3. Everyone is different. I don’t believe these stages are linear, and I don’t believe everyone follows the same path. I’ve been through the five stages and back a few times now. I know which stage is beneficial for me (acceptance) and which stage is harmful for me (anger). Being able to recognize what stage I’m in and why, is helpful for me to get out and move forward.


4. Worry. I wish I could live up to one of my favorite sayings: “Worrying is like a rocking chair, it gives you something to do, but doesn’t get you anywhere.” But, I’m a worrier. We all have worries in life, and I know most of it is perfectly natural. But it’s imperative for me to try to control my worries and focus on the present. I’m trying to make it a matter of routine to define what I’m worried about and then decide whether I have any control over it. If I don’t have any control, I try not to waste a worry.


5. People’s response to my grief. The answer seems easy enough: You can’t control others, just yourself. But how people react to me can set me up for serious emotions. I’ve felt others’ expectations, and I’ve worried about what I’m living up to. My illness instantly changed my identity through my job and my social circle. I grapple with what those changes have meant for me, but also how other people treat me because of those changes. It’s a constant battle of wanting to cling to the old and move on with the new. I’ve learned that people are going to say and do things to hurt you, and they’re going to treat you differently, whether they mean to or not. You can only do your best with this one. It’s tough.


6. Rituals. I like having rituals. I like to remember the bad along with the good. Why else would I celebrate May 26th? That violent seizure could have killed me. But each year away from it, is a reason to celebrate that it didn’t. There is nothing weird about celebrating mile markers in your journey, even when it’s a grief stricken journey.


7. Triggers suck. My journey with AE has been filled with trauma, so I often feel triggers. Various benign things take me back to 2018. Smells are big for me and mostly bad. Music is good and bad. I feel dreams and nightmares, as if they really happened. I’ve learned that it helps me to put on my rose colored glasses. When I smell my mom’s perfume and it takes me back to her living with us during the worst of times, instead of feeling scared, I remind myself that I’m lucky to have her with me. I’m prepared for these to stay around a long time.


8. You need a support system. This one is crucial for me. If not for my mom, my husband, and a few close girlfriends, I would be up a creek every day. I know I need them and luckily, they don’t give up on me. Find these people in your life and cling to them. If anyone makes you feel bad about yourself or lacks empathy for your situation, don’t spend much time on them. Even if they were important in your old life, it’s OK to let them go in your new life.


9. Tomorrow is a latter day. If I had a dollar for every time I said this or someone said this to me, my jet would be as nice as Jeff Bezos’. But it’s true, tomorrow is a latter day. The sun will come up tomorrow. With enough rest, and possibly a few stiff cups of coffee, tomorrow can be a better day.


10. Be patient with yourself. My friend made a pin that said, “Be patient with me, I’m grieving.” I love her idea and cherish my pin. I use it to remind myself that not only do I need others to be patient with me, I need to be patient with myself. Recovery and grief are long and sometimes bumpy roads. Patience and kindness are key.


Best wishes to you,

jackie


#autoimmune #encephalitis

#StebbinsStrong

“And now I'm glad I didn't know The way it all would end the way it all would go Our lives are better left to chance I could have missed the pain But I'd have to miss the dance


For a moment wasn't I the king But if I'd only known how the king would fall Hey who's to say you know I might have changed it all” ~ The Dance by Garth Brooks

  • LinkedIn
  • Instagram
  • Grey Twitter Icon
  • Grey Facebook Icon

© 2020 by JM Stebbins, LLC