My son’s life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling – as pieces are removed by too many players jugging too many variables and way too little foresight and funding.
This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.
Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben’s help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them – and soon after that disappeared. She told Ben that he was an “absolute inspiration” to her son because he takes his meds – and has held a job he loves for over two years.
What she hadn’t realized is this:
Sure, Ben takes his meds – but he still doesn’t think he needs them. He is “compliant” because it’s a house rule we enforce – by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.
I pray we never have to force this issue. We’ve done it before – it is risky and painful to all – and so Ben knows we mean what we say. But the whole “compliance” situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It’s right here on the foundation level. If that one goes, the whole thing topples over.
But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out — and we hold our breath, as do so many families in similar circumstances, that the structure can still stand.
- One – Ben lost his Social Security Disability benefits (SSDI) this week. I know – he is working now, and so shouldn’t “need” the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being “managed”, yes, but it’s still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent…Social Security was helping with those. But it has been pulled from the stack.
- Two – Ben has been supported by a care team – which now (because of funding cuts) has to discharge him from their client roster. He is “doing so well” that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now – but what if…..? It’s terrifying to think we’ll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. – but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing – which is ALL THE TIME. I don’t have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can’t know it all.
- Three – The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can’t afford the losses that keep coming. Ben had paid us rent, but that’s gone now with the loss of SSDI. We cover his medicare premiums, his food….and yet we know how many families would be thrilled to have these “problems” – a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?
- Four – He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.
So that’s four sticks pulled from the tower. More threats always loom for families affected by mental illness.
- He can’t find another job?
- Medical insurance suddenly refuses to cover the only meds that help him?
- He loses his car?
- He gets anxious and upset by the changes and decides to disappear?
- His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one “weirdness” display.
The one in four families living with mental illness deal daily with their own Jenga towers. We are never “out of the woods.” We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can’t handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good – and constant – dose of the reality of how important prevention is.