Tales From the Mental Health Field

Part I can be found here. Names and some circumstances have been changed to protect privacy/confidentiality.

Due to Jack’s criminal history, we had trouble finding him permanent housing, so we opted for one of our community mental health group homes while we continued our search. He made friends with some of the residents, kept all of his appointments, and told jokes. As Jack began to trust me, and I him, he finally opened up about his family history. It was a short story. On his mother’s side, every single person—his aunt, his mother, and his sister—had all died from Huntington’s Disease.

Jack’s hands had never stopped trembling. And now I knew why.

Jack’s physical agitation, his depression, his anxiety…it all had a story now. Jack shared with me that he’d suspected Huntington’s was going to kill him, too, but didn’t want to think about it, let alone deal with it. Instead, he wanted to focus on finding a boyfriend, getting a job, and just living. He didn’t want to live like he was dying. He’d not been formally diagnosed, he told me, but when his symptoms started a few years before, he’d not needed to see a doctor to know.

I’m no neurologist, so I had no idea the course Huntington’s would take. I knew the basics. He would cognitively and physically decline. There was no cure. It would eventually take his life.

Jack was willing to see a doctor, but without insurance or funds, he’d have to start with our local free clinic. We made an appointment.

The free clinic doctor was the opposite of everything I’d expected and hoped for. He was short with Jack, demeaning and condescending. Jack was honest about his history in full, that he’d been in jail for selling drugs, recently released, being treated for his mental health disorders, and was ready to deal with his potential Huntington’s. The doctor dismissed him, stating that there could be many reasons Jack trembled. The anxiety, the doctor said. Drug use, he added. I was furious. I advocated for Jack, backing up his story that he did not, in fact, use drugs. I demanded a referral to a neurologist. Then, I was the one who was dismissed. The free clinic physician told us to return in six months and if Jack’s condition didn’t improve or worsened, he would make the referral.

In the car on the way back to the group home, I didn’t even try to hide how livid I was. Jack, conversely, was calm about the whole scene. As I puffed air out my cheeks, he laughed.

“What’s so funny?” I asked.

“You’re really mad,” he said.

“You’ve got that right,” I said. “That doctor…” I couldn’t finish my sentence.

“Listen,” Jack said. “I’m used to this. I could have predicted this. And six months isn’t going to make a difference.”

“But medications? Treatments? What if something could help?”

“Nothing helps, Jennifer,” he said. “This is my life.”

Jack had seen three of his family members die from this horrible disease. I couldn’t imagine the horror. The social worker in me fumed, wanting justice for Jack. Something. Anything. But Jack was right. The reality was dim. But Jack wanted some quality with whatever time he had when his symptoms were manageable. That was his goal. And it was his goal that mattered, not mine.

We went back to that same clinic, and fortunately there was a different doctor that day. A kinder one who didn’t see Jack through stigma glasses. His tremors had gotten worse and now his speech was affected. She ordered some scans and referred him to a neurologist.

A week later, we went to see the neurologist, who, interestingly, was my neighbor when I was a kid. We chatted a bit about our families before he examined Jack. It seemed to relax Jack that I knew the doctor and I know it relaxed me. He was professional but not warm, but we both took it, as it was a million times more comforting than the original free clinic doc. He confirmed what Jack and I already knew and prescribed him some medication.

Between the first clinic appointment and the neurologist, we were able to get Jack to see a mental health therapist and psychiatrist who prescribed him some medications. He got an apartment. He’d met some of his goals, and was living independently. He did not have a job or a boyfriend, but was granted social security disability which helped keep him afloat financially and off the streets. He received physical and occupational therapy, which aided him in setting up his apartment safely and gave him skills to stay independent as long as possible in his home.

Jack made some friends in his apartment complex and his treatment team helped him with groceries and other needs. To my knowledge (but it was none of my business), he did not meet a man with whom he had a romantic relationship, but he seemed happy. I routinely evaluated him for suicidal thoughts, but they diminished as his quality of life got better, despite his Huntington’s getting worse.

Jack lived this way for several years before the Huntington’s finally took him. Jack taught me so much about how to be a better social worker and person. I learned about his disease and how to collaborate with someone who’d accepted such a devastating outcome when I struggled to accept it. He taught me how to best help him and how to support him with courage instead of sympathy.

I’ll never forget Jack. I carry him with me with gratitude.