Dedicated to the grieving families of Seth Poling and Sandra W. Marlowe. May peace be with you. Does anyone ever sit in the place the missing loved ones had at the table? No. It will never just be a chair again. I had a place, you had a place, but that chair that was your … Continue reading The Empty Chair
Category: Mental Health
My Battle Against Bitterness
My application for the ALS drug Relyvrio was shot down by insurance a few days ago. There is no appeal process because patients who are on ventilators are not included in clinical trials. That means insurance can say it doesn't benefit us. It was very hard to get that news. They say I'm in the … Continue reading My Battle Against Bitterness
The Financial Cost of ALS
by Rachel Doboga My mother taught me it's not polite to talk about money, politics, and religion outside close friends and the nuclear family, but as it's ALS Awareness Month I want to make clear the monetary cost of the monster inside me. ALS is often called "the bankruptcy disease," and with good reason. The … Continue reading The Financial Cost of ALS
On the Other Hand
2 It can be hard to "live my truth." Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle. Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral … Continue reading On the Other Hand
The Sun’ll Come Out April 19th
3 I haven't written a lot about the problem that has rendered me bedbound for quite a few months now. You may think you understand the severity of the situation. However, what you know is the tip of an iceberg that you soon discover is actually the edge of a glacier that is moving inevitably … Continue reading The Sun’ll Come Out April 19th
The Art of Car Crying
3 3 3 3 2 This one goes out to all the people who can't cry at home. Whether you are trying to be brave for a loved one or just don't have the space or privacy to cry at home, I hope this gives you some relief. Step 1: Park your car somewhere safe, … Continue reading The Art of Car Crying
Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)
2 3 I have never really been one to get excited about New Years. Early on, my mom instilled in me a lasting fear of the hordes of drunk drivers careening about all night. I am now 30 years old, and to this day, I have never been to a New Years Eve party I … Continue reading Draw on the Magic of New Years to Improve Your Health (Even if You Have ALS)
A new approach to preventing and identifying depression
3 3 Depression is a sneaky beast. It’s the monster beneath the bed, waiting until you’re vulnerable to grab you by the ankles, drag you into its dark, misty kingdom and leave you to wander alone. I’m just stumbling out of a two month-long bout of depression. I knew I was at risk. In fact, … Continue reading A new approach to preventing and identifying depression
My Depression Diary
3 4 4 4 2 Trigger Warning! Forward: When just over a month ago I sensed that my mind was changing, I was overcome with a frenzied need to record everything I thought and felt. Even before I understood that I was depressed, I realized I was going somewhere that outsiders could never truly visit. … Continue reading My Depression Diary
A Happy Halloween
I consider this Halloween costume an absolute success. I dressed as the Little Mermaid, and had a sign on my wheelchair to tell people that ALS stole my voice! Ursula, you're off the hook. Plus, I had some royal arm candy (wink wink). I am glad I was able to dress up and pass out … Continue reading A Happy Halloween
How I Live Now: Life With ALS 