During a psychotic episode, the world as we know it disappears. What is tangibly real morphs into a disconnected tangle of interfering voices, distorted mixed messages and acted upon delusions which all seem believably real to the individual struggling with schizophrenia.
The observable behaviour can manifest differently from one individual to another. For one person, it could be displayed by outlandish outbursts at the corner of a busy intersection..........anger at the world.......anger at a person who isn't visible to our naked eye, but is very visible to the one doing the screaming. Another person may fold into themselves catatonically unable to move or express outwardly what is going on inside their mind. Another individual while attempting to ward off a stressful situation or a hallucination may display uncontrollable ticks. Another human being may be paralyzed by overwhelming phobias to a point where they need to always be out in wide open spaces. Even on the coldest day of the year.
Though there are shared symptoms, the response has a personal signature. My years in the frontline have taught me this much. The opportunity to share time and conversations with people who are living with schizophrenia have always left me with new learning........ at times I find it difficult to grasp myself let alone try to explain it to someone. But, I want to try.
Psychosis is multi-sensory..................it is a loud, brash, multi-coloured invasion of our senses. And for the person who must live every day with a myriad of noise and interference, disconnected from the world, feeling like they are an unwanted visitor even in their own body, it must be nearly impossible to even try to find the way back to the safety of their own spirit.....their own soul.
It is incessant.................and debilitating. Sometimes medication doesn't help. Sometimes the medication has side-effects that are also so debilitating that what is left is a shell of a human being.........so drugged and tired that they cease to be able to function at all. Sometimes, the medication does work and the person can make an attempt to live within the rules and boundaries of our communities.
This week, for some reason, I have met with many people living with Schizophrenia. It's not unusual that I would meet with one or two who are diagnosed with some form of this mental illness, but for some reason................this week my world of work revolved around the lives of several struggling individuals. Not only that, many of my consultations with frontline staff had to do with questions they had about clients whom they couldn't figure out, many of whom turned out to have delusional symptoms.
The new team I'm working with as well, have specifically asked for me to provide them with some information on schizophrenia and other mental illnesses. This is good news. It means they are lifting their heads.......they are becoming more receptive to acknowledging.........on many levels. They also see how I can help support them, how I can fit into their personal world of work. The number of "staff drop ins" to my office have increased again with questions and people puzzles...............the "whys" and "how comes" and "what does this mean" and "can you help me understand" questions are finally happening again, like they did with my old team.
So, my thinking and my sharing this week has been focused on the people we serve who live with schizophrenia. My most important personal learning, however walk through my door at 3pm this afternoon. That's when I met Ben, a 53 year old man who was applying for a disability pension. According to his medical, I learned that he was cognitively delayed, had a speech impediment and was diagnosed with schizophrenia many years ago. I also learned that despite this, he lived alone in a well known rooming house. His medication had allowed him the dignity to be able to live independently.
Ben arrived completely dishevelled and a little nervous because he didn't know what to expect. We sat facing one another with no desk between us and started with small talk about the bitter cold weather and he proudly showed me the scarf his brother's girlfriend had knit him.......bright colours of wool warmth. I then explained to him that I needed to ask him some questions in order to be able to write his story for the medical board so that they would know him better than what the medical stated.
I asked Ben some basic general questions about his family...........he was the oldest of 15 kids and grew up in rural poverty. His speech impediment was severe and I had to really strain to understand and to follow his side of the conversation. What was easy to decipher was that this man was a gentle soul..........he was so unassumingly gentle and polite as he described his siblings, his struggles in school years ago and his spotty work history. He mentioned his affiliation with a local church which I gleaned was very important to him. When I asked him about his reading, he told me that his ability to read was fine. He read parts of the Bible every night.
The turning point in the interview came when I had to ask him about his schizophrenia. So, as gently as I could, knowing that he probably never talks about it, I asked..........
"Ben, how would you describe to me what schizophrenia's like. Pretend that I know nothing about it............how would you describe it?"
His sparkling eyes rimmed with red and filled with tears and in a clear solemn voice he said...
"Lonely. It's so lonely."
Then, there was silence.........it seemed like a long time, but it wasn't. It was a poignant silence. There was nothing I could say. I couldn't make it better. I couldn't take it away. I didn't really know what to say because I was completely shook by the depth of lonely Ben had shared with me......had taught me. He continued....................
"I live in a room. I have lived in one room for 25 years. It's all I have. My pastor calls me and we pray to God and ask Him to take my loneliness away."
"Does it help?" I ask............
"Yes.......I know it's God who I need to rely on. Sometimes I don't feel so lonely when I'm praying."
We carried on with our conversation, and I was able to give him some information about applying for housing support and to encourage him to go to the community kitchen and the Monday night drop in program that takes place just down the street from where he lives. He wanted to know if I attended church regularly and how old my children were. When it was time for him to leave I walked him to the door and watched him wrap his big colourful scarf around and around his neck and face, put on his touque and try to zip up his coat right up to his chin. His coat collar was all askew and I couldn't help but untuck it..........a maternal thing I guess. He smiled as he wished me a good weekend.......as I did to him. And off he went, a little lighter than he arrived.
I went back to my office and sat down and cried for a man who shared his attached soul, who taught me that schizophrenia means lonely.
The observable behaviour can manifest differently from one individual to another. For one person, it could be displayed by outlandish outbursts at the corner of a busy intersection..........anger at the world.......anger at a person who isn't visible to our naked eye, but is very visible to the one doing the screaming. Another person may fold into themselves catatonically unable to move or express outwardly what is going on inside their mind. Another individual while attempting to ward off a stressful situation or a hallucination may display uncontrollable ticks. Another human being may be paralyzed by overwhelming phobias to a point where they need to always be out in wide open spaces. Even on the coldest day of the year.
Though there are shared symptoms, the response has a personal signature. My years in the frontline have taught me this much. The opportunity to share time and conversations with people who are living with schizophrenia have always left me with new learning........ at times I find it difficult to grasp myself let alone try to explain it to someone. But, I want to try.
Psychosis is multi-sensory..................it is a loud, brash, multi-coloured invasion of our senses. And for the person who must live every day with a myriad of noise and interference, disconnected from the world, feeling like they are an unwanted visitor even in their own body, it must be nearly impossible to even try to find the way back to the safety of their own spirit.....their own soul.
It is incessant.................and debilitating. Sometimes medication doesn't help. Sometimes the medication has side-effects that are also so debilitating that what is left is a shell of a human being.........so drugged and tired that they cease to be able to function at all. Sometimes, the medication does work and the person can make an attempt to live within the rules and boundaries of our communities.
This week, for some reason, I have met with many people living with Schizophrenia. It's not unusual that I would meet with one or two who are diagnosed with some form of this mental illness, but for some reason................this week my world of work revolved around the lives of several struggling individuals. Not only that, many of my consultations with frontline staff had to do with questions they had about clients whom they couldn't figure out, many of whom turned out to have delusional symptoms.
The new team I'm working with as well, have specifically asked for me to provide them with some information on schizophrenia and other mental illnesses. This is good news. It means they are lifting their heads.......they are becoming more receptive to acknowledging.........on many levels. They also see how I can help support them, how I can fit into their personal world of work. The number of "staff drop ins" to my office have increased again with questions and people puzzles...............the "whys" and "how comes" and "what does this mean" and "can you help me understand" questions are finally happening again, like they did with my old team.
So, my thinking and my sharing this week has been focused on the people we serve who live with schizophrenia. My most important personal learning, however walk through my door at 3pm this afternoon. That's when I met Ben, a 53 year old man who was applying for a disability pension. According to his medical, I learned that he was cognitively delayed, had a speech impediment and was diagnosed with schizophrenia many years ago. I also learned that despite this, he lived alone in a well known rooming house. His medication had allowed him the dignity to be able to live independently.
Ben arrived completely dishevelled and a little nervous because he didn't know what to expect. We sat facing one another with no desk between us and started with small talk about the bitter cold weather and he proudly showed me the scarf his brother's girlfriend had knit him.......bright colours of wool warmth. I then explained to him that I needed to ask him some questions in order to be able to write his story for the medical board so that they would know him better than what the medical stated.
I asked Ben some basic general questions about his family...........he was the oldest of 15 kids and grew up in rural poverty. His speech impediment was severe and I had to really strain to understand and to follow his side of the conversation. What was easy to decipher was that this man was a gentle soul..........he was so unassumingly gentle and polite as he described his siblings, his struggles in school years ago and his spotty work history. He mentioned his affiliation with a local church which I gleaned was very important to him. When I asked him about his reading, he told me that his ability to read was fine. He read parts of the Bible every night.
The turning point in the interview came when I had to ask him about his schizophrenia. So, as gently as I could, knowing that he probably never talks about it, I asked..........
"Ben, how would you describe to me what schizophrenia's like. Pretend that I know nothing about it............how would you describe it?"
His sparkling eyes rimmed with red and filled with tears and in a clear solemn voice he said...
"Lonely. It's so lonely."
Then, there was silence.........it seemed like a long time, but it wasn't. It was a poignant silence. There was nothing I could say. I couldn't make it better. I couldn't take it away. I didn't really know what to say because I was completely shook by the depth of lonely Ben had shared with me......had taught me. He continued....................
"I live in a room. I have lived in one room for 25 years. It's all I have. My pastor calls me and we pray to God and ask Him to take my loneliness away."
"Does it help?" I ask............
"Yes.......I know it's God who I need to rely on. Sometimes I don't feel so lonely when I'm praying."
We carried on with our conversation, and I was able to give him some information about applying for housing support and to encourage him to go to the community kitchen and the Monday night drop in program that takes place just down the street from where he lives. He wanted to know if I attended church regularly and how old my children were. When it was time for him to leave I walked him to the door and watched him wrap his big colourful scarf around and around his neck and face, put on his touque and try to zip up his coat right up to his chin. His coat collar was all askew and I couldn't help but untuck it..........a maternal thing I guess. He smiled as he wished me a good weekend.......as I did to him. And off he went, a little lighter than he arrived.
I went back to my office and sat down and cried for a man who shared his attached soul, who taught me that schizophrenia means lonely.
11 comments:
He was a little less lonely for having crossed your path.
Thank you for sharing Ben's story. I'll say a little prayer for him - and for you - when I tuck in tonight. The world needs more kind, gifted souls like you.
You always manage to touch the more compassionate side of my soul when you relate stories of people like Ben. I applaud you for being able to wind your interviews through their pain, and still remain sane throughout the process. And it shows how human you are that you saved your tears after Ben's exit from your office. Me... I would have been crying like a baby well at the beginning of the interview. I don't do suffering well.... hence the reason why I carry kleenix everywhere.... I'm such a woos.
I thank my God for letting me know people in my life who are as strong and caring.... the gifted souls (as Carmi said).... people like you. Carry on, my Muskie friend.... you do good things, and it is a pleasure to come over here for the reassurance that the world has it's sane moments through the work of wonderful people like you.
Now excuse me while I go find that kleenix and have a good cry....
That is a very touching post which made my eyes moist just reading it.
You seem like a very compassionate person with a deep understanding of this condition. What I really like though is that with all your knowledge you don't presume to know what it is like to have the condition and live with it.
Michele sent me to see you.
Thank you Carmi...such kind words. I really appreciate it. I remain on the frontlines for selfish reasons...to have the opportunity to meet people like Ben who quite honestly enhance my life and who teach me the importance of acknowledging our own vulnerabilities.
Ellen....thank you. My writing takes on more meaning to me when I'm able to find the words to share a story about an individual I work with. My writing actually takes over me.....it's quite strange, really.
I was able to maintain my composure (sort of.......I almost lost it) after the moment when Ben shared his depth of loneliness with me by shifting our conversation a bit with an injection of humour. I wasn't able to capture the whole interview in this piece......
After he told me that he prays to God.......I asked him.......
"So, what do you think God would say to you if he walked through your door?" Ben smiled and regained his composure......and then I said......
"You know what I think he'd say? I think he'd say......OK Ben my buddy, time to get your winter coat on, bundle yourself up......and head down to the Community kitchen for a hot meal and some fellowship! Time to get a move on!"
Ben laughed then.........and admitted that he had to get out more during the winter months. He then spoke brightly about how he spends his Sundays at church with a couple of his brothers and they have a meal together etc......
So............we made it lighter and he was able to remember that he had many others in his life whom he does connect with.
bob-kat.....thank you for stopping by. Whenever I have that feeling like... "OK, I've heard it all now"....I am always struck down by a bolt of humble pie. Many times, I swear someone comes walking into my office for that sole purpose...
It's a bit spooky how that happens.
AMEN.......That was so beautiful. I am so grateful for him having the lord in his life but what you do is amazing and I thank god for you. Sweet girl xxxx
Oh...
...I...don't know what to say. I'll be sending positive vibes to Ben and to you - I wish I could do more.
P.S. - Michele sent me.
loved this post. i am linking to your blog - is it ok?
thank you Shaz.......hope all is well on your end in the land of Oz.... :)
hey Lynette......glad you dropped in. My next post won't be so heavy....maybe.......
Greetings Ricercar all the way from Scotland.......love edinburgh!! Thanks for the link.
I am sitting here with tears in my eyes, I'm sure Ben felt less lonely after meeting with you, the touch of another caring human heart can make such a difference.
Am thinking about how often we, as people, feel lonely, how many people struggle daily feeling totally alone and lonely in our communities.. even when surrounded by other people... and what helps... reaching out, sharing stories, our stories, just being with and listening..
I wonder if thats part of the essence of community ~ sorry, just thinking out loud in your comment box...
You are a real gem, thanks for sharing your stories, hope the weekend has been relaxing, Katie
thanks Katie.
Having a very relaxing weekend....and a few surprises unexpectedly have made me smile a lot........just posted about it. :)
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