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When I Wanted to End My Life, a Friend Left Me Exactly the Message I Needed

I’d been curled in the fetal position holding my head for days. My third lumbar peritoneal shunt for intracranial hypertension was not working. The pressure of the weather was crushing my body and my brain. They stopped making words for this kind of pain. Everything I survived and fought through to stay alive faded to black. Everything I hoped for and still desperately wanted became a mirage. It was a second-by-second survival, hyper-focused on hurt so bad I was willing to lose everything to make it stop. I wrote a blog post about wanting to die. I hit publish.

Most of my honest but uplifting posts over long years detailing 21 surgeries and life with Ehlers-Danlos/Marfan syndrome, Chiari malformation, tethered spinal cord, cervical and spinal instability, dysautonomia/POTS, intracranial hypertension, mast cell activation disorder, endometriosis, autoimmune encephalitis/PANDAS/PANS and other comorbid conditions try to find gifts in the gauntlet of chronic pain and illness. People love to read about courage and hope. They love stories about overcomers. People are terrified to look on days when a poster child for strength and resilience wants to tap out. They didn’t know what to say, so they stayed quiet.

In the silence, one old friend picked up her phone to call me. She left me exactly the kind of message I needed. “I don’t understand, and I can’t imagine, but I know this pain is real, and it matters. You matter. I’m here for you. I love you.” Out of the hundreds of people in my inner and outer circles, one call came, and I stepped back from the ledge.

The following Tuesday night, I had longstanding plans on the calendar with her and two of my other girlfriends to have dinner at a new restaurant 20 minutes away. I’d been in bed for over a week drowning in suffering and sadness. but I dug deep to muster the energy and willpower it would take to push my broken body into the shower, shave my legs, dry and style my hair, apply makeup, and get dressed. By the time I was ready, I was utterly exhausted and thoroughly nauseous from the pressure and being upright. I dosed myself with pain and anti-nausea meds as one of the friends pulled up in her mini-van. We headed out to meet the other two girls and carpool together. Conversation began down the normal path. We discussed the continued grief of losing her grandmother, her work, our kids, our husbands, mutual friends and spring plans. Once all four of us were together, I fell quiet as they carried on about their jobs, people they know, local gossip, current events and vacations planned. I felt like I was on the outside looking in at a party I didn’t belong at.

A too-loud voice in my head shouted “You can’t bail now. Don’t throw up. Don’t cry. It’s OK. You can make it through this. This proves you are still trying to have a life. This proves you aren’t completely irrelevant. Think of something intelligent to say. Think of a book you’re reading that’s not about autoimmune disorders or neurosurgery. Think of something you are planning to do that doesn’t involve a trip to a hospital or a medical procedure.

I made it through dinner and back home to collapse. My husband shook his head, and asked me why I continue trying to prove I can do these things when they don’t really even make me happy anymore. Food, friends, good wine, and great conversation used to recharge my batteries. Now it takes more energy than I have to start with.  Even though my life is impossibly hard, I used to always find pleasure in hearing about the “normal” lives of my friends. For some reason, I was hurting too much to get there that night.

Several days later, a card came in the mail from the same friend who left the voice message. She didn’t mention my hurt at all when we were in the group, but her kind eyes and gentle hug let me know she saw my continued pain. Her note said this:

It was so nice seeing you for our dinner getaway. I love being able to hang out for a normal girls’ night. At the same time I know there is much extra preparation, endurance and “paying for it” that goes on for you that I will never fully be able to appreciate.  I know it takes so much out of you, and yet you still come. I appreciate your friendship every day and hope it is a light spot in all the heaviness. I just want you to know that does not mean I ever forget that the fun comes with a price. You continue to be one of the most amazing people I know…

Leslie Jamison writes in her brilliant book of essays, “The Empathy Exams”, “Empathy isn’t just something that happens to us — a meteor shower of synapses firing across the brain — it’s also a choice we make to pay attention, to extend ourselves.”

Engraved spoons

This same friend gave me the gift of three spoons stamped with the words, Faith, Hope and Love. They are a symbol  of the choice she’s made to pay attention and extend herself past her demanding full time job, marriage, two small children, small business, home and all other aspects of her own complicated life to acknowledge how always hard and painful it is over here. Her empathy rescued me and reminded me my life is amazing… I am amazing, and I should stay.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Mighty is asking for the following: Write a thank you note to someone who helped you through your disability, disease, or illness. What about that person makes him or her a good ally? What do you want them to know? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.