Category Archives: Life

Assisted Living

There comes a certain point in ALS progression where you start needing the kind of help that you probably haven’t needed since you were a small child. People preparing food for you is one thing, and it can actually be quite luxurious at first. When I lost my ability to cook, I hated it, but I also felt so appreciative when a hot meal appeared in front of me, the result of someone else’s efforts.

However. People bathing you, lifting you on and off a toilet, carrying you into bed, those are the things I believe Lou Gehrig was talking about when he called this disease “infantile paralysis.”

I took my last unassisted shower in September. Just last week, I completely lost my ability to transfer and use the bathroom alone. Privacy has deserted me…and I have helped it along by sharing that last bit of information on the Internet.

Rob and I received a piece of advice from our midwife after Scarlett was born. She told us to respect the baby. This meant to talk to her and tell her when we were moving her, when we were dressing her, when we were pouring water over her head in the bathtub. At the time, I thought it definitely made sense, but I wasn’t sure it mattered much to our chunky little monster, who was generally being cooed at and kissed so much that she probably thought we were trying to eat her. Read More>

|Categories: Life, Progression, Relationships, Vanity | Tags: , | Permalink

Something I Tried

About a month after my ALS diagnosis in 2012, I received a questionably positive test for Lyme Disease. The reason I say it was questionable is because even the diagnosing doctor, a Lyme expert, said that it was not *exactly* definitive, but that we should nevertheless set out to treat it, just in case.

I was all in. Earlier Lyme tests had been negative, and I knew the treatment was intense. But I had ALS. If I’d been told there was a chance that living in the washing machine and eating styrofoam would help me, I would have done it. And then I think this would be a very different blog.

I arranged to have the necessary minor surgery. A skinny tube called a peripherally inserted central catheter (PICC) was fed into my arm, traveling through my body to its final destination in my chest. It took about a month to get insurance to agree, and to get the appointments scheduled. That was all time that I was sure was being wasted, time keeping me from getting to this potential cure.

How had I gotten Lyme Disease? There were realistic answers to that question. Read More>

|Categories: Cure, Diagnosis, Doctors, Drugs, Life | Tags: , , , | Permalink

The Words We Use

I’ve recently spoken to a few people with ALS who all said “I’m dying” at some point during our conversation. I understood. They are recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.

Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.

But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying “I’m dying” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false. Read More>

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