Looking to the future when MG makes me feel useless
The loss of his job leads a columnist to wonder, 'Have I become useless?'
“Useless, useless.” Those were the last words of President Abraham Lincoln’s murderer.
After killing Lincoln, John Wilkes Booth fled Washington, D.C. A 12-day manhunt ensued. On April 26, 1865, federal troops cornered Booth in a northern Virginia barn. Military orders were to return him to Washington, D.C., for trial.
Against military directives, Boston Corbett, a member of the squad, fired a shot that hit Booth. The shot paralyzed Booth but did not immediately kill him. Near death, he was carried from the barn and spoke to Union detectives Luther Baker and Everton Conger.
A Smithsonian magazine special report narrates his final moments: “‘My hands,’ Booth whispered. Baker raised them up for Booth to see. For the last time John Wilkes Booth beheld the hands, now helpless, that had slain a president. … Mustering all his remaining strength, Booth looked at his hands and spoke again: ‘Useless, useless.'”
Confronting a difficult reality
Since 1998, I’ve spent my workdays teaching high school. Myasthenia gravis (MG) necessitated a medical leave of absence that began in 2021. Recently, my school district notified me that I would be terminated. This wasn’t unexpected. There are policies that govern employment situations, and I’ve been fortunate in the length of my medical leave. My income these months has come from a private disability insurance policy I purchased at my own expense. I haven’t cost the district anything.
Nevertheless, the notice brought home the finality of my situation. MG had taken something else away. I’m not ready for retirement, but I’m not well enough to return to full-time work. It’s a difficult, depressing situation. I’m not planning to assassinate anyone. I hope I’m free from the depravity of a murderer. Yet, I look at my hands and wonder what I can do for the rest of my life. Have I become useless?
I don’t say this lightly. I’m not engaging in hyperbole. MG truly has brought on an existential crisis. It’s forced me to confront difficult realities.
What will my future hold?
I’m not alone in this struggle. Up to 30 million Americans are affected by rare diseases.
ALS News Today columnist Kristin Neva experienced similar dislocation when her husband, Todd, was diagnosed with ALS. In her column “Trying to Prepare for the Future: It’s Worth the Thought Now,” she shares that before ALS, “I looked forward to the future. Watching our two kids grow up. Family vacations. Perhaps Todd would take an overseas assignment with his company. Maybe we’d have more children. We didn’t know what the future held, but it was full of promise and possibility.” Just as MG changed my future, ALS changed hers. “My relationship with the future became filled with fear and anxiety.”
In a similar vein, a 2020 Huntington’s Disease News article shares the financial, emotional, and health difficulties rural Vermont couple Linda and Joe Lacroix faced after Joe was diagnosed with Huntington’s disease. When the condition started to affect Joe’s job performance, his employer encouraged him to retire, which he did.
The article shares Linda’s perspective: “‘They forced him out of there,’ she said bitterly, adding that the company chose to have him retire rather than use its disability benefits, because letting him go was cheaper. ‘He could have gone through disability and gotten more money, but his manager made him retire.'” To survive financially, Linda returned to work at age 67.
I don’t know what happened to the Lacroix family after 2020, when the article was published. The outlook wasn’t bright. I do know the Nevas’ story. As Kristin writes, “I don’t really fear the future anymore, but I’m resigned to it. What will be, will be. But there’s a part of me that still craves agency. I want to chart my course rather than just letting it unfold as a passive bystander.”
I admire the Nevas family. There’s something stoic and admirable about two individuals who, confronted with the harsh realities of life with a rare disease, wrestle with them and chart a path they’ve designed. Not the life they expected, but a life in which they are proactive and not victims.
Will I be able to follow their lead? Will my story more closely resemble that of the Lacroix family? I don’t have the answer. Living with this uncertainty is difficult. I think back to my college theology classes. We learned that one of the greatest spiritual gifts is trust in the creator. We read in Isaiah 64:8, “But now, O Lord, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.” Before it’s molded, clay has limitless possibilities. Once molded, it has a purpose.
Lady Gaga gets the (almost) last word: “That fear that’s inside you will lift, give it time/ I can see everything you’re blind to now/ Your prayers will be answered, let God whisper how …/ Hold my hand.”
It comes back to hands. My hands, your hands, all our hands. I look at mine and hope they aren’t useless.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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