“I really love being alive.” A Boise mother tells the story of how Medicaid Expansion saved her life

The following was posted on NextDoor yesterday by a Boise resident:

I don’t even know his name, but I’m alive because of him and his friends.

I was working in my yard a couple weeks ago when a man approached with a clipboard asking for signatures for Idaho education funding. He asked did I know about Medicaid expansion and what “they” had done to get Idahoans covered in 2018. I looked him in the eye and said, “Yes. I am alive today because of it.”

I have a rare condition known as Idiopathic Subglottic Stenosis. The cause is unknown, and there is no cure. It is terminal: without frequent ongoing surgeries scar tissue cuts off my airway and I suffocate to death slowly. Beginning in 2013, I began to suffer from lack of air. I was a single mom of 4 without health insurance because of divorce to escape abuse.

I went to Terry Reilly doctors over the years as the condition worsened and was shamed and ignored until 2017, when with my last ounce of fight I demanded someone listen to me. Finally someone did: I had less than 4% of an airway. Emergency surgery almost killed me. I was in ICU for 3 days fighting to live. The one and only surgeon in south Idaho who can treat me refused to do so anymore after 4 surgeries in a year, saying I must either pay the full amount I owed from four major surgeries (over 6k) or they’d never see me again.

I was near despair. I was still fighting my way out of poverty induced by divorcing with no job skills and being unable to work more than 35 hrs a week at the only low wage jobs available to me because I was suffocating, among a host of other still untreated conditions (celiac, fibromyalgia, PCOS, endometriosis, severe PTSD, depression…) which I’d never even been able to start dealing with because dying of not breathing was so paramount and again, no insurance. I’d always managed to keep a roof over my kids heads and food on the table and they all had medical insurance. But I couldn’t afford to stay alive.

I got a job with Albertson’s security, which provided decent pay and insurance. But by the time I’d paid the $180 a month for insurance, I had nothing left for copays. I was working nights and it was destroying me physically. My kids were home alone all night every night… and I still couldn’t pay off the surgeon who wouldn’t help anymore. I’d been through it all with social workers: ISS isn’t recognized as a disability in Idaho. I wasn’t homeless. There was no help for me. I was dying, again. I had months, maybe a year or two at best.

And then… Idaho passed Medicaid Expansion. The day my best friend told me I called. Surely, it was too good to be true. The woman on the other end joyfully informed me 5 mins into the call that yes I was now enrolled and had free health care. Free. Health care. I could do anything I needed to do, to live. I wept. I found an amazing doctor here and she helped me get seen in Salt Lake City by an amazing surgeon. I’ve had 4 more surgeries and 2 procedures since, the last, in April, was experimental (I was the 25th person in the world to receive it) and I am still breathing well 7 months later.

I’ve actually been able to address a few of my other health conditions like Celiac and gallstones and depression because I can breathe!!! And I have insurance. I explained this story briefly to this man with his clipboard. He told me he and his friend, Luke, were the ones who fought for it. I stood there dumbfounded. What is the protocol for suddenly finding that the human in front of you, a stranger, saved your life? I stammered thanks, I told him I wouldn’t be alive without them… and he said he would tell Luke, and I signed his petition for Idaho education, and… he walked away. And I just stood there, in my flowerbed, in awe.

I found out today that the organization which Luke Mayville began, Reclaim Idaho, is responsible for the 5 kids I raise having a mom. I really love being alive. And I am incredibly thankful that some privileged white men used their voice when I didn’t have one, to keep me alive. Luke, and all of your friends: I don’t have words. Everyone else: PETITIONS SAVE LIVES. ❤️