Well, my son did. And we were helpless to stop his fall, as we stood there, witness to another mental health victim of Covid-19.
Nine years of being the poster boy for a stable and meaningful life while in treatment for severe schizophrenia, gone in 48 hours. 48 hours. Nine years of careful steps taken toward full-time unemployment, car ownership (of sorts), his own bank account, social activities with friends and family. Nine years of a half-life that we constantly reminded ourselves “was good enough, compared to the alternatives.”
Schizophrenia had stolen Ben’s life, thrown him into deep muddy waters of chaos and limitations, but he had risen to the surface and we were keeping him afloat by supervising his treatment. Every. Single. Day. He did the rest – earning college credits, working as a restaurant server (a good one, Yelp-worthy), helping out friends – because he had the 4 pillars of stability: treatment, love, purpose, structure.
Gone, all gone. My son is back in the same hospital where he was first treated, 17 years ago, and just as symptomatic. He talks to himself all day. He refuses treatment. He won’t talk to us, this child who just one week ago hugged me good morning every day and played on the floor with this little nephew and nieces, who adore him.
His preschool-age nieces and nephew cannot see him like this. They wouldn’t recognize their uncle. Sadly, though. it’s all too familiar to me, as the pain and grief come rushing back.
No, Ben doesn’t have Covid-19 – yet. But the illness caused the economic crisis that cost Ben his job, his purpose, his structure, his livelihood, his sense of self-esteem, his reason to agree to take the meds he thinks he doesn’t need.
Unemployment benefits helped – money to at least pay his bills (leased car, credit card, car insurance) and allow some pleasures (take-out food, a new sweatshirt). He was so brave, like a kid consoling himself and saying it doesn’t matter when not invited to a birthday party.
But then the benefits were reduced – that $600 per week that has kept most of the unemployed alive since covid pulled the rug out. And Ben’s stress escalated – as well as his evident need to control the only thing he still could – refusing to take his medication.
This has happened to many of us, but we can somehow find a way. We dry our tears and turn to logical thought – where can I go? Who can help me? – for at least some answers. But when you have schizophrenia, you don’t have the frontal-lobe logic to pull yourself out of a funk. You don’t ask for help (because you don’t need anyone, or any stupid meds).
My heart hurts. We are in grief. Back to square one, and I am terrified and heartbroken for Ben – and for us.
Getting him out of our home and to the hospital wasn’t pretty. The police and EMTs were amazing. And part of me is glad for this “vacation” from his messy room, the greasy stove after he cooks, the cigarette smell that always accompanies him, the daily standoff to get the meds into him.
Yes, I will clean his room, throw out the old empty bottles, the 2 of the 3 ragged couches, the piles of unwearable clothing. I have some control over that, at least. I will do that between my voiceover work, the virtual play I am casting, radio shifts, and helping my daughter with those 3 babies.
But what then? We have 15 days.
15 days. A gift. A burden. A heartbreaking reminder that meds work, but not to cure. Only to stabilize. And my son – all who are like my son – deserve better.
I have no idea what lays ahead. We will move forward, blindly and with love. But the love will lay there, unreturned, while my son lives in his inner world of chaos, back in the place where he was first treated, and a newly-leased car (his pride and joy) sits in our driveway, a reminder of who he used to be – 48 hours ago.
Randye, my heart hurts for you. I know you and Geoff have gone to Herculean lengths to support your son in maintaining “the stability”. I hope the future brings a return to a better “normal”.
thank you, my friend.
Randaye – I am heartbroken for you. I came to get an answer to my own question, but realize that will take some time as you once again trudge through the agony of figuring out each consecutive step to survive over the next many weeks. I know because I just walked that path as my 25-yr old son was just (finally) diagnosed with schizophrenia after 11 years of hell and the underlying suspicion, with the corresponding denial, that this was the truth. My son was in the hospital, then jail, after a 12-hour armed standoff with police at his home on July 23rd where he was trying to protect his dad and brother from “the Illuminati and Trump who were on the lawn and coming to kill them”. Protection orders now leave me as the only family member who can see him and provide support. I have rented an extended stay hotel and have been staying with him while he follows Court orders for outpatient treatment (really?) awaiting his hearings. My issue is my father, who is in ill health, has his 80th birthday Sep. 3 in another state and I had planned to go. But my family won’t let my son come and now I am torn. I want to see my dad as this could be his last birthday. But my son needs me right now and is doing amazingly good his first time on anti-psychotics. I remember the part in your book where you talk about how family and friends often respond and really can’t understand. I can’t blame them. I feel I need to tell them I understand how they feel but my son needs me right now and I will have to plan a trip to see them when things are more stable. I set up my son to be able to live on his own – walking distance of drs and groceries, prepaid VISA for laundry, bike for recreation and to pick up meds, hotel room for 30 days. I just feel in my gut he needs me and it would be a mistake to leave him alone right now. He is taking his meds now to please the judge. Who knows, once the legal stuff is resolved.
So much of this we are left with nothing but our guts to guide us. I am learning the hard way to check my gut rather than pick up the phone these days. The answers just don’t seem to be at the other end.
I want you to know that your book has given me the constitution to carry on… Seeing what you have been through and what the future holds for me is an eye-opener, but I finally feel like I can attack the problem, finally knowing what it is. And because of that I feel empowered. Terrified, but hopeful. Also knowing it is forever. My thoughts are with you on this current roller coaster ride and I wish you peace ASAP!
– Denise Varga
Wow, Denise. Thank you so much. Another warrior Mom! I guess we can only do the best we can do, and then jump to the serenity prayer…and a judge to help set limits. I feel you, too.
Randy’s, so sorry to hear this. I understand some of the chaos of this time. My heart goes out to you.
thanks Becca 🙂
I am so sorry to hear this. Truly sorry. May better days soon come your son’s way. Just know that we are standing with you with hope and prayer.
Thanks, Claire. I know that you know 🙂
I am so sorry to hear this. My heart hurts for you. I have followed your story and it helped me so much in the beginning of my own journey with my son who is also schizophrenic. Praying for you all.
thanks so much, Lynn
Sorry Ben had had a set back. I worked in psych. hospitals for decades and seen many re-medicated and recovered. Hang in there. Very lucky that you had a long run of good times. Maybe he will get newer, better meds and be better than before.
that is my hope, as always. hope for the best, prepare for the worst. thanks for your input 🙂
So very sorry to hear; such pain and heartbreak. I hope Ben can be stabilized and a measure of equilibrium reestablished. You are doing the very things you can do: get what help and support for Ben that you can, then expand your attention to those other areas where you find a measure of balance, joy, and control. Thinking of you and all your family, with love.
thank so much xoxo