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: Family
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
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
3 Things to Be Grateful for This Thanksgiving If You Have ALS
3 2 Those of us living with ALS or loving someone who has it are gratitude experts. Don't misunderstand me. We have our dark, bitter moments. As we catalogue our blessings - the precious time we have had on earth, our remaining abilities - we inevitably think about the other side of the coin. Yes, … Continue reading 3 Things to Be Grateful for This Thanksgiving If You Have ALS
On the Delivery of my CDC National ALS Conference Speech
This morning, my mom and dad attended the CDC National ALS Conference to deliver a speech I wrote. I had hoped to attend the conference myself and have my husband speak for me since my voice is almost completely lost. However, my ALS threw a few wrenches, a hammer, and a screwdriver in that plan. … Continue reading On the Delivery of my CDC National ALS Conference Speech
Watch My Speech at the CDC National ALS Conference!
3 3 My speech at the National ALS Conference on outreach is tomorrow ( Wednesday ) at 9:30 AM EST! Due to travel complications, I am not able to attend, so my mom will be giving the speech for me! You can watch the event live at this link: http://www.alsregistrymtg.com
Oceans Between Me and You
Lately, I feel like the little girl in this music video - that I have to put on a cape and mask just to face the world and my increasingly isolated place within it. Of course, that's not a healthy or sustainable way to live, but I try all the same. Perhaps I try because … Continue reading Oceans Between Me and You
How I Live Now: Life With ALS 