written by Jeanie Bergen

Whenever someone asks if I have children, I want to say yes.

“Her name is Edna. She’s a year older than me, lives in a group home and I see her every weekend. Sometimes during the week, if she has a doctor’s appointment.”

I didn’t give birth to my sister – that would be weird – but I am her mother in many ways. Her single mother, in case any of you readers happen to know any emotionally available, hardworking, compassionate men out there. No worries if not – from my years of research, they appear to be as rare as jeans that actually fit.

I became my sister’s guardian when I was 20 years old. Our mom died of breast cancer when we were four and five and our dad skedaddled to who knows where until he died in 2006, according to Google. We were raised by our grandmother, but then she passed away too.

Growing up, there was never any discussion of what would happen to Edna after Grandma died. Who was going to take care of her? Where would she live? With me, I soon discovered. Surprise!

That was 13 years ago and we’ve been through hell and back, mostly because we lived in Arizona (do not live there unless you have a pool, central AC and a love of scorpions.) I had to fight for her guardianship in Arizona, and again, for conservatorship when I moved her to California after her caregiver of many years died of breast cancer. By the way, fuck breast cancer. I’m sorry if you don’t appreciate my language, but I don’t appreciate cancer killing the people that I loved.

When I was young, I was embarrassed of my sister. The way she walked, the way she talked, the way she would throw herself on the ground when we went to Walmart and my grandmother refused to buy her what she wanted. Admittedly, it was a good tactic – she had lots of toys. But people were always staring at us and it was humiliating. It made me angry and sad and then I felt bad for feeling that way. It made me wish I was invisible, and sometimes it felt like I was. To my grandma, especially. My sister required so much attention and care. I realize that now, now that I’m in my grandmother’s shoes. But I’m in my early 30s. My grandma was in her late 60s when she was suddenly in charge of a child with Lennox-Gastaut Syndrome, a rare form of epilepsy that caused up to 90 seizures a day and her younger sister, who rarely listened and once set the bed on fire with a curling iron she wasn’t supposed to be using.

These days, when people stare at Edna and I, I stare back. If I’m feeling particularly feisty, I’ll ask loudly, “Can I help you?” But when I’m feeling chill, I’ll assume it’s because we’re cute. Honestly, I don’t have the time to worry about it - Edna and I have places to go and things to do.

Doctors appointments, mostly. About six months ago, Edna’s neurologist suggested we adjust her seizure medications. She went two months without any seizures, and then, all hell broke loose. She became extremely agitated, and instead of lowering the seizure medication that caused the agitation, additional medications were added to combat the side effects. She lost her appetite and 34 pounds in four months. Her placement at her group home was suddenly in jeopardy, basically sending me into a nightmarish tailspin.

After one particularly frustrating appointment with her neurologist, in which Edna was repeatedly saying, “I crying, I crying,” he responded, “I know, Edna,” and swiftly walked out of the room. I decided to seek a second opinion.

In the first appointment with Edna’s new neurologist, she said she never treats patients with intellectual disabilities with as high of a dosage of the medication that Edna was on. We’ve since tapered the medication away into oblivion (sayonara, devil pills!) and we’ve seen a huge improvement. She’s not totally back to her baseline, but she is getting there. I think. I’m not totally sure.

​Every day is different.

I crave stability. God, I want it so badly.

“Are you in therapy?” people ask as soon as I tell them a smidge of what’s going on.

Hell yes. I feel no shame in that. Everyone should go to therapy. Therapy is the best. I also do yoga, which I truly believe is saving my life, while gradually chipping away at my muffin top. Then I became vegan. My friend Jay asked what this has to do with anything, and it doesn’t really, except I can no longer binge bricks of cheese when feeling particularly helpless, and I meditate.

But it’s still not enough. I wake up five to six times a night, worrying about Edna, worrying about money, worrying about the future. Every day I try and do something that will improve our situation. Some days I feel like a failure. Other days I feel like a success. But I will never stop trying. I will never give up on Edna or on me or on the life I believe we deserve to have. (In a Malibu mansion, with separate quarters, with common space perfect for entertaining. Duh.) I have surrounded myself with fierce warrior women who keep me afloat. Even though my pain is not their particular pain, it is pain just the same. We share with each other, we believe in each other, and we drink wine. Oh, do we drink wine.

When I was a kid, my grandmother use to tell me I had a lot of nerve. Because I was getting on hers, I think. I used to take it as an insult, but now that I am in her shoes, fighting for Edna, fighting for me, I’ve realized it’s a good thing. We will come out on top. So help me God. ​