Writing this blog has blessed me in ways I could never have imagined when I began. The connections made with other writers around the world, for example. With one exception, I have never met any of these folks in person, but I feel like I know them. They are friends in a very unique sense.
Through the “blogosphere” I have met people dealing daily with chronic illnesses. Some illnesses are ones I have heard of, but now know much more about thanks to the writers who open a window into their world. Fibromyalgia, epilepsy, diabetes, heart disease, and Chronic Fatigue Syndrome are some of these. Others were not familiar at all: Sjogren’s Syndrome, POTS (Postural Orthostatic Tachycardia Syndrome), Ehlers-Danlos Syndrome, to name just a few.
Then there are the other ALS bloggers. Fellow PALS. Over on my “Resources” page you find a partial list of these. I feel a deeper connection to these folks. They have been my allies just like our friends in our MDA ALS support group. Comrades in arms. And, of course, as is to be expected, the disease runs its course. One by one, death comes and claims another.
I have particularly enjoyed the eloquent musings of Bruce Kramer (Dis Ease Diary.) I quoted him in a post a while back. (This is What I Want, Jan. 8, 2015.) A few days ago, I learned Bruce died on Monday, March 23. This news, though certainly not unexpected, hit me kind of hard. I did not realize just how hard until sharing this with our hospice social worker when she was here Friday. Tears flowed.
Bruce painted with words. His poignant observations of this whole “dying” thing always had me nodding in agreement. “Yes. That’s just how it feels,” I would think. His was a voice I could count on for helping others have some idea of what having ALS is like. One of several, actually. And now that voice is gone.
Someone I have never met has left a hole in my heart.
Minnesota Public Radio produced a series chronicling Bruce’s ALS story. There is also a book about his experiences, We Know How This Ends: Living While Dying, published by the University of Minnesota Press.
Our support group has lost many people in the 2+ years we have been attending. I can see them in my mind. They are not forgotten by those left behind. And they are missed.
There will be more voices to share this ALS experience. But I will miss Bruce’s. Goodbye, friend. You are free!
This blog was posted originally on March 30, 2015.
Read Happy Complicated New Year! for Bruce Kramer's final post on the MDA ALS Blogs section.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.