It has been heartbreaking.
It has been scary.
It has been full of uncertainty.
It has been exhausting.
However, the journey has taught me some valuable things about my boy (now a full-fledged man), myself, the world and its cruelty towards the mentally ill, and the beauty of a community held tightly together in the middle of the worst storm on record. It is most touching to me to have watched over the years as strangers became my friends - bonds formed out of fear, necessity, and most of all, a need to promise each other that it was all going to be okay, that there was HOPE even when it felt like there was nothing left to hang on to.
My post today is about that hope manifested in the form of a beautiful (now with teal streaks of hair) young man named Thomas who one day, years ago, came to me with an unmarked envelope, wearing a respirator mask, and insisting there was anthrax inside that envelope meant to, once opened, end his beautiful, burgeoning entrance into adulthood. It is also about my beautiful young man who now has a quick, ready, smile for the camera hoping to show off his most creative expression of his newfound sanity, those teal streaks in his hair.
For years I begged for that smile and stood by as he forced one that belied the chaos swirling in his brain.
For years I waited for a lot of things and
for years I slowly gave up on my already tenuous grasp on hope.
When I looked at my adorable toddler opening his Christmas presents with laughter and wonderment years ago, I never, even for a second, thought I'd spend years of his life and mine, on a vigilant and nearly constant basis, watching for the next sign of psychosis and trying to plan for how I was going to fix it or take it away altogether.
That is what we do as caregivers of someone living with schizophrenia. We watch, we wait, we hang on to hope, and if we harbor faith in a higher power, we spend days and nights on our knees praying for peace for our loved ones with schizophrenia and for our exhausted selves.
But what happens when our prayers get answered? What happens when everything we've lived for years beforehand gets flipped over and our loved ones with schizophrenia land on their feet and we are finally able to let go and breathe deep, lung fulls of air?
I began this blog in desperation not long after several psychiatric and medical professionals told me Thomas would never get better and that, in fact, he would only get worse from there culminating in him fully lost in psychosis and in prison for an as-yet-unnamed crime. At that time, I had a child with schizophrenia and I knew full well what the label of "schizophrenia" earned him out in the world filled with people with preconceived notions of the illness and uneducated opinions about our loved one being the next public shooter. When I began this blog it was my mission to change that misguided impression by telling Thomas' story and my own as his caregiver.
I'd like to believe that I've put a dent in that and that I have been the voice of many who are too frightened to speak up because the stigma around this illness is so oppressive.
Apart from that, I'm writing today for the most important reason of all and for those of you in the trenches still fighting this insidious mental illness. I'm writing today to give you hope and to light any blown out candles.
My Thomas and in many ways your Thomas too, is doing amazing.
He hasn't just had an amazing few days or an amazing couple of weeks, he has been doing amazing for months.
There are residual symptoms like a solitary voice that just won't let go of him and some mild cognitive symptoms that lessen in severity as these months pass by and he's still on a boatload of psychiatric medications and living at home with his dad and I but for all intents and purposes I believe it's safe to say he is in recovery.
Yes, we've all heard this elusive word but we've never dared to dream it could happen to us. I am here, though, to tell you that it does happen and it's happening to Thomas.
I can't even begin to tell you all of the things that he's done and said that have proven he's better but I just have to share a couple today.
My first, and probably most favorite took place a couple of months ago. He needed a new cell phone so I took him to get one. On the car ride there I asked him what he would do if they took his existing phone in exchange for a new one and he didn't even hesitate and told me he didn't care if they took it.
"But what about all of your private text messages to your girlfriend?" I asked.
"I don't care," came his reply.
Then I launched into how nerve-wracking it was for me to contemplate them having possession of my phone with all of its secrets. I told him how, even if we deleted that information, that they could find it. I told him I'd watched enough "Criminal Minds" shows to know just exactly what the F.B.I. could do with a cell phone if they decided to try. I told him that I would rather die than let our cell phone provider have even a minute of access to my phone.
He listened to me ramble on and he was quiet and when we stopped at the red light, he piped up,
"Mom, you're more paranoid than I've ever been!"
Laughter erupted from me, I'll admit it was a bit of a nervous laugh because all I could think was,
"I am pretty paranoid sounding, aren't I?"
But that moment marked a huge milestone in both of our lives. I had become more paranoid than my son with paranoid schizophrenia!
Somehow he and I had traded places. For all of the times I had said silently to myself that I'd do anything to take this illness from him even if it meant that I ended up with his schizophrenia, here I was, a tad paranoid myself (though I feel it's justified) and my son was getting a kick out of me being crazier than he says he's ever been.
There have been other events that showcase his recovery. Again, during these times he and I traded places and the trend became him remembering and me forgetting,
A) Where we had parked the car in the Walmart parking lot.
B) That I had asked him to do something hours before and when I found him doing that thing, I had forgotten I had asked him to do it but there he was, doing it and doing it with enthusiasm.
C) That I had asked him, before a long work day for him, that I thought it might be good for him to get his paycheck stubs printed up for Social Security. He had gotten in the car after work and dropped a stack of papers on my lap and when I asked him what they were, he told me they were the paycheck stubs I had asked for and promptly forgotten about. He remembered, though.
I could list things until I'm blue in the face but I reserve the best one for last so that I can share it now.
It was a few days before my birthday when it started. He'd get in the car after work and tell me that he'd spotted an item he thought I might like. I told him those things sounded great but nothing more came of those inquiries. Then, on my birthday, he and I went somewhere and the longer we were out the more visibly anxious he became. I asked him about it and he finally admitted that there might be something on the porch for me that could melt and he was worried about this mystery item. I was amused and for the rest of the day he anxiously and repeatedly looked out the front window for the delivery truck determined not to let the mystery item melt on our front porch.
When it finally arrived I carefully and slowly opened it. What could he have gotten for me? He'd never been a present-giver but I always wrote that off to his being lost in the throws of surviving day to day with schizophrenia yet here I was unsealing a box and excitedly anticipating what I'd find inside. Nestled inside was a small pink-striped box and inside that box were four cake pops--one of my most favorite things! Attached to it was a note that read:
"Thank you for all that you've done for me mom. I love you."
For starters, he had nailed the perfect gift for me having watched me enjoying a cake pop months before. However, most touching and most surprising for me was, right there in my hands, written in black and white was a "thank you for all that I've done for him." In that moment, in the most beautiful way possible, my previously lost boy was found again and he had taken notice of the years I had dedicated my entire life to him and he had thanked me for it. I offered him one of my cake pops to which he said,
"No mom, I got those for you. Enjoy them!"
Then I picked one up for myself and bit into the sweetest thing a mom with a son with schizophrenia could taste. It was dark chocolate cake with chocolate chips and a decadent frosting but it was, more than anything, a sign that my son had found himself and in that process, found his way into a world free from lurking monsters and full of loved ones he couldn't wait to share his love with.
Since then, practically every time he's come out of work, he has carried a bag full of treasures for someone he loves like mesquite wood smoking chips for his dad to use in the barbeque, a box of cake mix for he and his grandma to make together, tropical flavored bubble gum for he and I to share and countless other things.
Then on the way home from work, a police car will pass by us and I will eye it and be ushered back to the not-too-distant past when a rush of anxiety would wash over me knowing that my son saw that police car as an indication that they were coming for him to arrest him for some crime he believed he had committed but that was never actually a crime to begin with. Now, however,
A police car is just a police car
And now I can take a deep breath and relax and he can chatter on about his sore feet, the long hours he has just worked, and the old lady he didn't hesitate to help find the coffee.
So, here it is, on a screen, in black and white and written especially for all of you who are mired down in this illness and tenuously holding on to the last threads of hope.
RECOVERY FROM SCHIZOPHRENIA IS POSSIBLE.
When it happens, you and/or your loved one with schizophrenia won't believe it's real.
Guess yourself. You'll say,
"He's doing better, but....."
And you'll fill in the space after that "but..." with any number of things like,
"He still says kind of off the wall things."
"He's isolating himself a lot lately."
"He still has so far to go."
But if you stop for just a second you will realize:
That you and everyone you know say off the wall things all the time too,
That you isolate yourself from the world too for any number of reasons on any given day,
That you still have so far to go too.
I implore you though,
And look how far you and your loved one with schizophrenia have come.
We are all on a long, long journey. There will be mountains to climb. There will be a whole host of things that will step into your path but do not ever let anything be the thing that defines your entire journey and causes you to lose sight of what you most want and desperately wish for.
--Not those overworked psychiatrists that say your son is a time bomb.
--Not those relatives and friends who have all kinds of advice about what they would do if they were in your situation.
--Not the nightly news report read by a respected news anchor enthusiastically reading the words to the world at large that condemn those living with a mental illness.
--Not the uneducated father of a friend of your son who, when he hears that your son has schizophrenia, shouts for all the neighbors to hear that they better watch out because your son is going to kill them.
--Not the idiots on Facebook who post that they're "schizo" today when really what they are is ignorant, thoughtless humans posting to get as many "likes" as they can.
And don't let the bad days that can turn into bad weeks, months, and years EVER make you lose hope or feel like a failure as a caregiver or stop you from praying for a miracle and by all means,
NEVER LET THEM CAUSE YOU TO GIVE UP ALTOGETHER.
If you go back and read all of my posts on this website, you will see how often I came dangerously close to doing just that. I remember nights I secretly hoped God would take me silently in my sleep because I felt I didn't have a single fiber of my being left to wake up the next day and do this all over again but I did wake up and I strung together the fibers of my being that remained in me and I did it again and again and again.
Do you know why I did?
It was all for my beloved Thomas.
If he had to wake up every day fighting monsters I couldn't see, then I was going to be there too, giving him everything I could with which to slay those beasts.
I tell him as often as I can to be grateful for his good health. I tell him that few are as fortunate as he is and today I told him,
That he is the living, breathing promise to you all that it does get better and that this elusive thing called "recovery" isn't just a myth.
(UPDATE - AUGUST 3, 2017)
I would like to apologize right off the top for not posting an update sooner. However, I am here now to fill you all in on our lives at this point in time.
Part of the reason I haven't been back to write is because I haven't quite known how or where to start. I didn't want to just say, "things are still great", and leave you still wondering what exactly "great" looks like in someone with a schizophrenia diagnosis. What I could easily do is tell you a thousand more stories like the ones above but I really feel like they say it all as far as what our day to day life looks like. The reason I'm back now, today, is because I wanted to share with you a dream Thomas had very recently.
First, a little back story is needed.
Before Thomas was diagnosed but he was still showing signs of schizophrenia, his life plan was to join the Navy. I can remember he had taken the initiative to give a recruiter that had come to his school his phone number. I can remember the first call from him, the first letter from the Navy and the first visit to the recruiting office. I went along with all of it outwardly quiet but just like any mom about to send her son off to the military, I was utterly terrified for him. It was what he wanted and certainly after turning 18 he could go anywhere, do anything, and be anyone he wanted to be. It was a timeless right of passage and one I had to let happen.
Then...he got sick.
And every hope we had for him was shattered when the diagnosis of schizophrenia was handed down.
We're here now, though.
We're here standing, growing and evolving.
So, the other day Thomas came to me and he said he had a dream the previous night. He seemed perhaps a bit disturbed by it which caused me some concern. I asked him if he wanted to tell me what it was about and here is what he told me:
In the dream he was younger and he had a Navy medal of Valor and for some reason it was in the middle of our living room. Suddenly this tall, scary man came through our front door and stole the medal. Thomas said he began chasing the man and then he said:
"I'm sorry mom if this sounds violent."
I told him I didn't care and to go ahead and say what happened. He told me that he caught the man and choked him out and got his medal back.
Violent? Yes. Sure. But it was a dream.
The conclusion we drew from the dream made that violence completely justified.
That medal in the middle of the living room? It was the promise of his future before he was diagnosed.
The tall, scary man who had the nerve to break in and steal it from Thomas? That a**hole was schizophrenia incarnate.
What Thomas did in his dream that night is what we all wish we could do.
He chased the a**hole down the street, knocked him to the ground and choked him until he passed out and he TOOK BACK HIS MEDAL.
He took back the promise he had for his future.
He took back EVERYTHING HE HAD LOST to this insideous illness.
Are you "hearing" the anger in my writing?
Yes, it's still there somewhere inside. Yes, I am still angry about the loss of those years where my beautiful, bright, charismatic son was held prisoner by schizophrenia.
But what soothes the anger is the meaning in Thomas's dream.
In his dream he got a chance to reclaim his life and in his waking life that is what he continues to do to this very moment at 3:30 in the afternoon almost 5 years to the date of his diagnosis.
Part of reality is that yes, he is still heavily medicated.
Yes, he still lives at home.
Yes, he can only hold down a part time job although he's excelling at it.
The best part of reality, however, is that my son is flying.
Every light inside that schizophrenia blew out has been relighted and burns brighter than ever.
It's a process to reclaim what's been stolen but there is continuously forward motion.
Have there been tests of his fortitude?
Yes, many, but the biggest was the recent loss of his beloved cat Lilly who had been with him since he was 5. Lilly had been with him through it all and out the other side and Thomas chose (and I supported him) to have Lilly cross over from the comfort of her home with her owner by her side loving her deeply until the bitter, painful, end.
Oh how PAINFUL it was.
Thomas sat for hours and talked to her, soothed her and loved her as she took her last breaths of life. The whole experience tore him to shreds. However, after she passed we took Lilly out to the back yard and buried her. He took a couple handfuls of soil and said his final goodbyes as he gently let the soil slip through his fingers and into her final resting place.
This could have broken him.
3 years ago it would have.
Instead, when he's out back, he goes to her grave and talks to her. Every day he misses her and voices that with sadness in his voice and no doubt with a heavy heart.
But with every death there is a rebirth.
Life begins anew.
Thomas lives that and breathes that every day of his life.
Now, I have just one last light of his to share with you. Really, all I am here is the messenger. Thomas never forgets about any of you. He's pushed me several times to write. Often when he accomplishes something he tells me:
"Mom, you need to put this on your blog."
He just walked past me and I told him I was updating the blog and he stopped in his tracks and began telling me all of the things HE wants you to know and see.
He's proud of himself.
He fully comprehends what he endured.
And if that tall, scary man comes back and tries to steal ANYTHING from him you can bet I'll be standing there enthusiastically supporting any manner in which he chooses to take him down.
With much love, light, and gratitude,
Melanie and Thomas