Shackles, Faith and Hope (Epilogue)

By Henry Boy Jenkins

dog-behind-the-windowSince returning home after my recent hospitalization I find myself feeling a profound sense of loss. Initially, I chalked it up to the inevitability of missing my mates from the ward, but as the days have gone on I’m sensing and experiencing something deeper. I don’t have a definition for it yet, but I’m working on it. Therapy will help, but ultimately it’s up to me to figure this puzzle out. What I do know bothers me immensely, and what I don’t know comes with a sense of foreboding. Research doesn’t have all the answers, and neither do well-meaning friends. Nope. For this one, I’m stranded.

For twelve days my life was regulated. My basic needs were met: food, shelter, sleep, camaraderie. I had a schedule, activities to look forward to, meal times, group sessions, and medication at the same time every morning and evening. How to simulate that when I got back home was one of the first problems to solve. The real world doesn’t revolve around my being “better”. Its events aren’t scheduled, there’s no rhythm to it. I found myself becoming elemental: forage for food, don the same hides each day, sleep with the toy bear, wake up with the sun.

At first I approached it with gusto. I set my alarm to match the hospital’s schedule, showered first to start the day, ate, journaled, even meditated a bit. Replaced group therapy with social media, finding out what my friends were feeling that day. Lunch, exercise, art, then dinner. I actually wrote out a plan similar to the daily routine on the ward and posted it on my fridge. I managed to follow it to the letter for the first couple of weeks I was back, but then something unexpected started to happen. I couldn’t make connections.

It’s not for lack of trying. I’ve called my buddies and gone out to breakfast. We’ve walked in the park and had coffee dates. But when they’re gone, they’re gone. Like they were never there. The same feelings that I have surrounding my flatmates from the hospital. Memories. Ghosts.

It’s not malaise, it’s not the blues. It’s not full-blown depression, either. Life just changes after you leave the care and attention of a hospital staff, especially in the psych unit where emotions, thoughts, and accommodations to the inner person are the sole focus. Mental health every minute of every day. There’s no transition period. It’s a freaking jump-cut. Here one moment, there the next. No amount of teaching in group could prepare me for the extremes of loneliness that I am presently experiencing.

We’d take our thoughts out and share them over meal time. We played like children during occupational therapy, coloring, drawing, bowling together on the Wii. Walks in the courtyard led to intimate discussions of our feelings and emotions, our personal histories. Those worn out footpaths caught a lot of spilled tears as we opened up, becoming fast friends in our recovery foxholes. If we were the soldiers of our own destinies, our individual diagnoses were our countries of origin, our common enemy was suicide. We fought together and became stronger for it, but at what cost? There is no “get well soon” to be gotten to, no “return to normal” when the new normal is a headful of therapy and a bloodstream laced with chemicals. Finding fortitude from within is not for the weak. It is not instant, this isn’t treatment for a broken arm. No one’s gonna sign my cast when the plaster’s applied to the neurological pathways.

Seamless care doesn’t happen as easily with the mental health client as it might with the physical health patient. I’ve had to follow up with my case manager and psychiatrist almost weekly since my discharge, sometimes preempting my regularly scheduled sessions with my therapist, but the appointments focus on matters of finance and medication, not rehabilitation into the stream of daily life. It’s through no fault of the caregivers, it’s just protocol. From my position, that’s an aftercare talking point that needs immediate attention if we’re going to see mental health parity in full bloom some day.

Before I left the hospital, I made sure to share my contact information with as many of my friends from the floor as I could. I’ve been to the zoo with two of them, and lunch with another. We text and talk on the phone. But since each of us is going through our own version of this cycle of reentry, the spaces between meetings and calls has increased as we each learn to live life “normally”—apartment hunting, job searching, grocery shopping, reconnecting with family.

It’s not enough. I wear the same pajamas at home that I wore on the ward. I eat the same meals, read the hospital literature, try to stay active and not allow this depression to gridlock my mind and sabotage all the hard work I did on the wing. My schizophrenia may be in check for the time being, and the future may indeed become a more hopeful one as the medications and I become ever more symbiotic. But the gaps in practice, policy, and coordination of post release care need to be ramped up or the statistical fact that one-third of all patients return to the hospital just might include me, a thought I don’t relish in the least.

That common enemy might raise its flag again and try to plant it in my life. My anxiety is down, my erratic thoughts are contained, but the noted effects of post-treatment trauma and depression are both very real and highly dangerous. Critical continuity of care should be every state’s priority. Suicidal ideation should not even be a term connected with aftercare. It can be avoided, I am certain. It’s a puzzle that needs solving. We need to share the stories, take the issues to voters, and make those changes viable for future generations. We can bring change to mind the best we can, and that change needs to be instilled into the mental health care system also to avoid relapses, unnecessary institutionalization, and heartbreak. Teamwork seems to be the puzzle piece we’re missing globally. I know for myself that I need to keep my eye on the prize: a happier, healthier, more productive life. Even in my pajamas.

10 responses to “Shackles, Faith and Hope (Epilogue)”

  1. Jennifer says:

    I so relate.

  2. Karen says:

    AMEN!!!
    I just lived this ordeal with my brother. There is a complete lack of after care, like a stepdown unit would be to an ICU patient. I went into Bitchmode in order to get people to listen. The amount of work digging for resources wouldn’t be necessary if there was a more thorough discharge and after care plan. The resources just aren’t there or made available.
    Communication on the part of the inpatient facilities is lacking and you feel when your days are up that you get pushed off the cliff, to fly on your own. It shouldn’t be this way.

  3. Phil says:

    Yeah, I got 5 weeks of day hospital group therapy that helped with the transition. You can also think about this time in your life as a chance to make changes. I felt something similar, and it turned out to be that I didn’t want to go back to the life I had before hospitalization. The road has been very rocky, but I feel like I have a better sense of who I am and what I want to do with my life. I’m more comfortable being alone than I have ever been. At first all I wanted to do was be around people and socialize. I was hypo manic. Now I’m very careful about who I socialize with. There was an attractive lady that wanted a relationship, but it was unhealthy. In the past I wouldn’t have cared because being lonely was worse. Now I understand I can’t get to where I want being in unhealthy relationships. I cut off all contact. It sounds weird, but throwing yourself into a hobby can be a great way to find balance. The art stuff is cool. I started creative writing that I’m very proud of. Creating something and being proud of it really helps my well being. I also started listening to NPR, music stations, and new artists. The TV freaks me out, but news on the radio makes me feel connected to the world. I also bought a Kindle for my birthday and started reading the NY Times every morning. Developing my own world opinion has increased my sense of self. Lots of good stuff on NPR and in Newspapers. Personally I don’t trust news on TV. I spent a lot of my career as a machinist. I know a ton but it bores me now. Someday when I get more focus I want to work towards expert level knowledge in something. Perhaps writing. Not sure yet. To recap, my problem ended up being I didn’t want to go back to the old me. A lot of people I knew wanted me to. Maybe because it was what they were used to. I’m much happier and content now that I found the new me. I’m working towards a sense of life purpose, but finding myself, and my voice was the first step. Hope you do well.

  4. Beth G says:

    Thank you. I have been trying for months to get my daughter after care after a stay in a residential program. They write the list of what you should do, but they do not account for the feelings that you shared. They do not acknowledge the difficulty of starting over again with strangers for too brief visits, with preoccupied therapists/psychiatrists- and then add to it the ones who will not take you on or turn you away because you are too difficult. It has been six months now- daily help to nothing, I feel her slipping away- but I do not know where to turn.

  5. Phil Kn says:

    SORRY FOR YOUR PAIN AND CONFUSION

  6. Kim says:

    Thank you so much for sharing! Your story is so poignant and timely. My daughter was just diagnosed 2 years ago and has been in and out of hospitals and treatment centers in 3 states. Because she is an adult, getting help for her is even more difficult and because she is in that group of schizophrenics who doesn’t think they are sick it is even more complicated. I pray that you continue to be a strong voice for those that are affected with this terrible disease and I pray for your recovery. I wish all the best on your journey.
    Warm Regards,

    Kim

  7. Crystal B says:

    Sending you love comfort and ACCEPTANCE of the inner you from afar.

  8. Jocelyn S says:

    Henry, I’ve often related to your writing. This piece is no exception. When I came home from the hospital I felt like I was sticking to the walls. I couldn’t get traction to the ground and to find my place at home again it took me months of incredibly physically exhausting and psychologically challenging work. The journey home after hospitalization is not to be underestimated. It is certainly much longer and more complicated than a bus or car ride. I pray we can work this out so fewer have to endure what we have traveled. Thank you again for your magic words.

  9. Susanne says:

    My 2 daughters are mentally ill. It has taken time and brave, repetitive communication on the part of my oldest to help me understand her situation better. My youngest’s hospital and re-entry situation is much like what you describe and has become almost a joke to me when I hear, “why didn’t you take her to the hospital?” Well, it’s because I live in Oklahoma; to be honest, the hospitals aren’t very helpful and they ruin your opportunity in the “real” world because you are now impoverished as well as still struggling with illness. Keep talking you all! You are my heroes, I love you as my brothers/sisters/children.

  10. Dasha says:

    Even though I haven’t been hospitalized since 2008, I can relate as if it were yesterday. More than once being hospitalized and the love-hate relationship of what took me there, what got me out.
    Nor being able to relate and camaraderie that only happens with people who live the same four walls, meals, med times.
    Normal life to me doesn’t exist because I don’t know what normal is. There is no normal. The subjective and the objective collide and there you are…
    Not many will understand and those who shared those weeks or months, many times outside the ward never more friends.

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