I was a young mom with 2 toddlers making 6 figures as a pharmacist when I became disabled overnight. Now I work and parent from bed.

Samantha Brandon, lying down on a bench outside wearing sunglasses next to her child in a stroller

Samantha Brandon lying down outside next to her child in a stroller.Courtesy of Samantha Brandon

  • Samantha Brandon, a mother of two, was a pharmacist making a six-figure salary.

  • She had complications from a spinal tap and now leaks spinal fluid whenever she sits or stands.

  • This is her story, as told to PollyAnna Brown.

This as-told-to essay is based on a conversation with Samantha Brandon, a 32-year-old former pharmacist and current affiliate marketer from Phoenix. It has been edited for length and clarity.

In June 2021, I was healing from an upper respiratory infection and my legs started tingling. It felt like nerve pain — similar to neuropathy. Because of my experience as a hospital pharmacist, I was concerned it could be Guillain-Barré syndrome, a condition where your immune system attacks your nerves, typically after a viral infection.

I kept an eye on it, but the pain wasn’t going away. The numbness climbed my leg; I went to the emergency room knowing I would likely have a lumbar puncture, also known as a spinal tap. The staff there agreed, as this is the standard procedure to rule out Guillain-Barré. To perform a lumbar puncture, they inserted a needle through my dura mater — a membrane that covers and protects the brain and spinal cord and is in the lumbar region of the spine — to collect cerebrospinal fluid for testing.

The test came out clear, which meant there was no protein in the cerebrospinal fluid, but the doctors said it didn’t rule out Guillain-Barré because I had caught it so early. Though the numbness subsided over the next few months, I soon had a bigger problem to contend with.

Though the spinal tap was a necessary procedure, it came with complications. The site of the puncture never closed, and I was never given a clear reason for that. It’s just something that happens to some people. Before the procedure, I’d been aware of the risks, but I had no idea how truly disabling a lumbar puncture could be.

Basically overnight, I went from being a successful pharmacist making a six-figure salary to a bedridden mother of two, and my children were only 7 months and 2 years old at the time. Now, I’m dealing with an invisible illness — by looking at me, you’d have no idea that I’m disabled, but my daily life has been profoundly affected.

My lumbar puncture didn’t close, and every time I stand or sit, I leak spinal fluid

I’ve had four patch operations that didn’t hold. I’m on my fifth one now, and I’m hoping this one will work.

My leak requires me to spend more time lying down than anything else. Originally, if I sat or stood for longer than 10 minutes, it felt like swimming at the bottom of a deep pool when the pressure made my head feel like it could burst.

Samantha Brandon lying down in bed looking at camera

Brandon in bed.Courtesy of Samantha Brandon

Now I can sit or stand a little longer than that, sometimes up to an hour. The amount of time I’m not lying down varies, and it often feels like I can literally pass out. Surprisingly, sitting upright is more difficult than standing or lying down because of the pressure it creates.

Because I can’t stand or sit and have to be lying down to be comfortable, I’ve missed weddings, my daughter’s first trip to Disney, and more important moments in the lives of my family and friends.

When my husband and I needed help, my in-laws stepped up

I’m not only stuck in a horizontal position most of the time but also not allowed to lift my children. My son was 7 months old when this issue started, so I haven’t been able to pick him up for the majority of his life.

With my income now seriously affected because of my disability, my husband, children, and I moved in with my in-laws, who lived about an hour away from the house we own, which we’re renting out so we won’t lose our home permanently.

My husband’s parents are incredibly helpful with the kids, and we have a good routine down. In the morning when my now almost 2-year-old son wakes up, my father-in-law pours his bottle. I lie on the couch for snuggles while my son drinks his milk, and we play together while I’m resting.

Samantha Brandon lying down on chairs at the airport wearing a mask

Brandon at the airport.Courtesy of Samantha Brandon

If I’m having a good day, I usually take the kids on a short, easy walk. But if my symptoms are really bad, I can’t, so my in-laws will do it.

Organizing family meals is a pretty easy task, so that’s something I do for us. I order groceries online, and then my husband picks them up from the store on his way home from work once a week. This is one of the ways that I can alleviate some of the load from everybody else and contribute.

For the kids’ bedtime routine, my husband is home to help. I can’t participate in things like bath time because it’s too much bending down, so he takes that on.

My daughter, who’s now 3 years old, is compassionate, perceptive, and inclusive of people with disabilities. For example, she is learning to be observant of the needs of others and does what she can to help others around her. She’ll do things like lay out a blanket for me to lie down on, and she’ll unplug the drain herself when it’s time to get out of the bathtub.

The hardest part of parenting with my invisible disability is my lack of independence

It’s hard not to be able to do things like get up and take my kids to the zoo; having everything in my life centered around my limitations is hard to deal with. It’s difficult not to think about the kind of mom I would have been if this hadn’t happened and all the things I’d be doing with them.

But at the same time, it’s almost been a bit of a blessing in disguise because I’ve had so much time with my kids. Normally, I’d be working 60 hours a week, and I wouldn’t see my kids very much. Now I’m home with them all day, every day.

I realize that I probably beat myself up more than they do, wishing I could do more with them, but at the end of the day, I think they just want me to be me. And for right now, I’m doing the best job I can at that.

Read the original article on Insider

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