Desperate Places Don’t Always Come with a Choice

Desperate Places Don’t Always Come with a Choice

After we got married, Todd and I bought an adorable, craftsman-style bungalow in a Milwaukee neighborhood. I believed living in the city would give me a better understanding of the issues faced by the families I served at an inner-city ministry, where I coordinated a tutoring program.

Our next-door neighbor, Bob, a 64-year-old retiree, jumped with glee the day we moved in. The former owner of our house had parties every night and burned down his garage when he was evicted.

Living there gave me credibility with the teens I mentored. One Sunday after church, we brought a few of them to our house. One couldn’t believe we lived just blocks from him. “You live here? Nah. You have another house in the suburbs,” he said when we pulled into our alley.

There were things I loved about the neighborhood. People knew each other’s names. Kids would come over and sit on our stoop, glad to have adults who would listen to them.

The man across the alley would occasionally drop off a sweet potato pie or a chicken he hadn’t sold that day from the barbecue he hauled around on a trailer. Once, he invited us to a party. We figured it was as a courtesy so we wouldn’t call the cops about his loud music, but we showed up. He was shocked, but delighted.

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There were also challenges to living in the neighborhood. We sometimes heard gunshots. A neighbor — one of those kids we had spent time with on the stoop — tried to break into our house.

A woman behind us tossed dirty diapers off her balcony. Diapers littered her backyard and alley. Some got hung up in a tree.

One night a group of teenagers was making a ruckus, so Todd shined his Maglite in their direction and told them to go home. A 10-year-old neighbor tried to educate him. She said, “Mr. Todd, you shouldn’t yell at them. They’re gangbangers. They might have guns.”

I didn’t feel safe walking into the house when I got home from work at 10 p.m. I called Todd as I approached the house, and he’d open the back door and watch me walk in.

After a year of living there, Todd and I started talking about moving. We wanted to start a family, but Todd’s new position at work required travel and I didn’t like being alone in our house at night. We were conflicted as to whether we should raise children someplace where I didn’t feel safe or abandon our neighbors to the problems of the city.

Then we found out Bob had stage 4 lung cancer. The doctors gave him a year and a half to live. He was estranged from his family, so we felt compelled to stay and help him.

He feared dying alone. After he lost his voice and could only speak in a faint whisper, he said he would call us and press a button on his phone if he needed help. One night, before the phone even rang, I woke with a start and told Todd that we should check on Bob. As we were getting dressed, the phone rang.

We ran next door and comforted him as he took his final breaths, six months after he was diagnosed.

It felt like that season of life had come to an end, so a month later we sold our house to move to a safer neighborhood close to Todd’s work.

As we were loading the moving van, the boy who tried to break into our house said, “Everyone leaves.”

His sister, in tears, told me, “But you’re like a mother to me.”

I cared for our neighbors, but our ability to move prevented me from truly understanding their situation. We had the means to leave, and we did.

Now Todd has ALS, and we are the ones in a desperate situation. We can’t manage this disease on our own, so we’re dependent on others.

We need financial support to hire caregivers. We need people willing to work nights. We need help with household maintenance. We need emotional support.

But people can only help for so long. Almost everyone leaves, eventually. When they tell us they can no longer help, they explain how conflicted they are. We understand and appreciate that they were here for a season of their lives, but I’m often left in tears.

I have a better understanding of those families who live in desperate places without a choice.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
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Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.

2 comments

  1. Helle says:

    Every day my heart breaks a little more over the ravages of this awful disease.
    I pray for answers yet there is no response.
    Sending love and endurance thoughts to you from me.
    …an ALS widow

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