True, it is a hassle having to devise alternative methods for living a normal life. But when it works, Oh, how good it feels! How triumphant and liberating! I’m proud of my persistence and creative coping skills.

Of course at times I grow despondent. I fall into what I call “useless cripple syndrome.” Most of my able-bodied contemporaries are at the pinnacle of their careers, and I’m just getting by. I shouldn’t complain, I tell myself. Unemployment among disabled people is crushingly high.

Because of this, I feel positively driven to make good use of every day that I’m not stuck in bed with a respiratory infection or other ailment. Yes, that may make me an overachiever. I graduated cum laude from Harvard at 21. I became a financial journalist, and my essays have been featured in major publications, including this one. My second book will be published next year. I don’t say all this to boast. The point is, I want to accomplish everything I can while I still have the ability. I may feel fine today, but I can’t count on tomorrow — or even an hour from now. I’ve seen too many friends in the disability community perish too young.

Not long after the shock of Laurie’s fatal accident, the news came of a 14-year-old Wisconsin girl with S.M.A., Jerika Bolen, who was planning to end her own life by refusing life-sustaining treatment. Just a few weeks ago, she did, and died. News reports said that Jerika was comforted by the promise of an afterlife in which she would be able to move freely and escape her persistent physical pain.

My reaction to this is strong and difficult to express. Growing up with a disability, I often became isolated. Feeling devalued by my peers, with no confidence in my future, I experienced intermittent but profound depression. One can take only so many surgeries, so many bodily betrayals, so much rejection, before wanting to give up. Even today, I can pivot from utter terror over an itch I can’t scratch or a bite of food I can’t quite swallow, to almost unbelievable joy if I manage to clear my throat unassisted or zoom my motorized wheelchair through a crowded street. As disabled people, we are endlessly buffeted by circumstances beyond our control.

I dare not judge Jerika Bolen. I don’t know the entirety of her situation. But I do wish she had found the will to live. I’m saddened — as were many others with S.M.A, and some disability rights groups — to think others might grow so weary or apprehensive that they follow her example. I hope she received the same level of intervention any other suicidal 14-year-old would. I wish I could have told her about the psychological alchemy that can turn frustration into an internal fuel. If I’d had the chance I would have told her that society needs its disabled people, too.