Monthly Archives: January 2015

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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Auld Lang Syne

Dear 2014,

You’re on your way out, and we here at Speed4Sarah would just like to say thanks for the memories. You were the year we got our first wheelchair, and rode it at top speeds until the battery died; the year we moved into a new house; the year we got a better wheelchair with a stronger battery, and rode it into all of the walls; the year of the Ice Bucket Challenge. Evidently, you are also the year in which we started referring to ourselves in the third person.

You are the year our daughter started her final year of preschool, the year our niece got married, the year our brother-in-law lifted us into a Ferris Wheel and we rode to the top, looked across the sky and thought we are nothing without the people who love us. Then our daughter started rocking the car back and forth, and we were like, who brought this kid?

You are the year we started this website and began sharing our experiences with the world, even though it scared us. You are the year we raised over 100K for ALS. You are the year we traveled to Boston to meet some friends who are on the same ride we’re on, and the year we joined a study that we hope will one day change the trajectory of this disease. Read More>

|Categories: Life | Tags: | Permalink