Category Archives: ALS Diary

Für V., in Liebe geschrieben. Wrecked in route to nowhere. On the cusp of annihilation, Of last gasps and chaotic recall Of memory-splicing intellection, Gray as old snow, last ever to fall, I’m entombed in the icy-spectral residue Of an errant searcher’s existential wreck Were once-pure snow and rainbow-dew Blind omens of what our livesContinue reading “ALS Diary (final part): Everything Solid Melts: Music and Love Transcend”

In the last weeks of May and the first of June, I fell several times and found it impossible to get up from the floor without a strong pair of shoulders to hoist me onto a chair and help me rise from it. I approached the subject of full-time care. I think we will haveContinue reading “ALS Diary (Appendix F): Where is the Exit Door? “

N.B. – From two weeks ago. I can still hoist my body into the power chair, navigate to the bathroom, brush my teeth, pivot onto the toilet, clean myself, and then make the return journey to the chair or sofa where I began.  All of this. But just barely. I choked this morning on myContinue reading “ALS Diary (Appendix E): Marginal Mobility”

For two weeks since the beginning of April, I’ve had a urinary catheter. Yesterday my wife agreed to allow a representative of the hospice service to visit and explain how it works. The nurse and case manager has paid her visit now I was satisfied and Veronika hit it off with her especially well, soContinue reading “ALS Diary (appendix D): Hospice”

You could compare the trajectory of my ALS decline to the descent of a plane that has lost power. First comes the long smooth decline, then you graze the tallest tree crests. The flight is no longer smooth but it’s not yet the crash. Two weeks ago I began to suffer constipation which made meContinue reading “ALS Diary (Appendix C): Hitting the Treetops”

Now I feel exhausted in my entire body. I’m not in acute pain, just tired. In the back of my throat a sensation of nausea that could be a response to hunger or related to the onset of the paralysis in the throat muscles. I can imagine already longing for the big sleep. It won’tContinue reading “ALS Diary (Appendix B): The Imminent Crash”

Now it’s a few days more than a year since I received the diagnosis and a good two years since I first suffered the symptoms of ALS. It may be worth knowing that, in my case, there is a steeper decline at this point. I could still get around at the Y with a walker,Continue reading “ALS Diary (Appendix A): A Steeper Decline”

I’ve been promising to put an end to this ill-advised account of my decline, and I think the proper moment has arrived. I came to this decision because on the one hand, it was becoming too much like a compulsion, one that urged an over-dramatization of the banal condition of dying, and on the otherContinue reading “ALS Diary (part 60): Calling It Quits”

I decided to cut back on and cap my diary entries. The increasingly political material will go on another site. On this one, I will report tangible changes in my condition. I realized that the compulsion to keep an ALS Diary was pushing me to overdramatize what is in fact a completely boring decline. True,Continue reading “ALS Diary (part 59): My Changing Condition Two Years In”

In my last ALS Diary post I expressed my regret for subjecting readers to so much of the same thing (it’s always “a little worse”) along with so many extraneous thoughts and comments with a kind of cheap solemnity and faux depth. I decided that I should limit the entries and cap their number. ThisContinue reading “ALS Diary (part 58): Losing My Legs, A Warning to be Strategic about Bowel Movements, and Reading”