Hey Hey!
Welcome to the Year of the Rooster!!
My name is Wylie, and I'm your PainPAL
I'd like to take a moment to Thank You for taking your time to read my blog. I appreciate your encouragement, your feedback, ideas and just really, your overall sensitivity towards dealing with Pain in its variety of forms.
Before we get deeper, I'd like to also offer you access to some of my music at:
reverbnation.com/wylieFunk
(In case you're like me, and enjoy listening to music while you read.)
With that, let's begin to delve into another PainPAL installment!
Blog 3
Quality of Life: the Mindset of Patience
As you've read in previous posts, I have a disability including chronic pain and functional bi-lateral knee issues like locking and buckling, for example. So imagine everyday, waking up in the morning, trying to get excited -- hey, it's a brand new day!! -- until you FEEL ... that other shoe DROP! That's what happens when I go to stand up and am reminded, 'hey stupid, ahh... down here!'
Yep, either both knees are complaining or one is more painful than the other ... and I haven't even got started with the day yet!!! It feels like every day is work personified! It took years of learning and experimenting and trial and error, just to learn how to overcome the physical 'taunts of the pain' and to find a way to keep going. Many times I gave up, just stayed in bed or on the couch because I just couldn't or didn't want to deal with the Pain that comes from standing or walking.
That's the trial of disability; that's the daily work of disability: to keep trying, to keep adapting, and to not give up. It's why learning to live with a mindset of PATIENCE, is so helpful, and really key to improving ones Quality of Life. What do I mean? Of course the idea of 'Quality of Life' is somewhat subjective and relative to one's life experience, let me explain with an example, including this idea of living with a 'mindset of Patience'.
I live in Oakland, 15 minutes away, across the Bay, from San Francisco. Yippee!! (well not quite...) Unfortunately, now, due to the disability, I probably get to San Francisco only about three or four times a year! Compare that with how often I'd go to SF when I first moved here back in 1999, when I used to work at a jewelry store near the SFO, the San Francisco airport. I felt like I had the world by the tail. Yet fast forward to 2017, and amusingly, I have a family member who's always prodding me about 'why I don't go to SF' ... I just can't explain how difficult it is for me to do what everyone else seems to take for granted. (And really, that's the issue of 'Quality of Life' ...)
Just the other day I found out that one of my friends and his band was playing at a cool club in SF ... AND hey, I live only 15 minutes away! [Exciting right?!!!] But add the FACT (not an alternative fact, but a Fact) that to get there (and actually enjoy the concert, and not go insane), I have to take a certain amount of pain medications. [Ok, many people take medication ... not a deal breaker] But then, upon arrival, uh oh, the club also has stairs. Not just any ole half flight of stairs, but more like 20 to 30 of them! Now suddenly, there's unforeseen Consequences. That's when the 'mindset of Patience' is so really important ... 'cause I can say forget it, and leave ... yet Patience is about accepting the situation, accepting what is in front of us, acceptance of the suffering or the conflict.
So what of the consequences: the stairs (that I didn't know of) meant that my right knee would grind to a halt with every step, and my left knee would begin to feel like someone started using a carving knife on it with each step. (Wonder why I don't get out more often???) But no one knows this except me. And that's also the interesting thing about pain, no one can see it! Pain is invisible!!! That's the thing about disability, it's far more easy to just chill at home, than to go out. But I decided to stay, support my friend, and really enjoyed the show!! Sure everyone was dancing, and I can't, but that's no big deal ... I still soaked it all in and enjoyed some great music. To me that's a product of cultivating the mindset of Patience and thus having a better Quality of Life ... at least trying to maximize it!
Does that example enable you to see a little bit of the difference in the Quality of Life that I once had, and have now? I think I went through every stage of grief, probably two or three times, but now I try to roll with the punches instead of getting upset, or being angry, vindictive, etc... etc... (who put those darn stairs there anyway!) and live each day with a mindset of acceptance and of Patience. Where I fail at times is when I'm driving!! Darn if I can't hold my tongue. It's as if people deliberately drive slow in front of me, just for fun!!! But isn't that the challenge of life, to hold and maintain our mindset of peacefulness and Patience ... no matter the circumstances. That reminds me of something my Gramma once said, 'one the toughest things in life is dealing with other people' ... and I'd have to agree. I think we could all use an extra helping of Patience, while we're interacting with one another.
And so, I accept that I can only go to SF a few times a year ... and that's ok. I'm GRATEFUL for those events and special occasions!! So I have to be careful and pick and choose when I'm going to go (and where too). It's a weird kind of discrimination, but it's important to understand what limitations I have because of Pain! Sometimes, I get ready to go, and then realize, Wow, I'm in a lot of pain already! So I have to decide to stay home. Sometimes, I get part way to the event and realize that there's no way I can make it through, and so I have to turn around. There's no way it makes sense to go when the pain has already reached a certain level. That's part and parcel of having a disability: I have to listen to my body and be considerate of myself and how I feel. This is very much the lesson of: 'Know Thyself' ... AND learning to be patient with who I am too :)
I wasn't always good at Patience, much less being present, nor understanding what or how I was feeling physically. (perhaps experience is indeed the best teacher) But I think I've made progress: where once I used to isolate myself, because I wasn't used to dealing with the chronic pain (especially with a loving and patient attitude) ... now I understand that I can't let the pain be in charge or control!! Additionally, I came to realization of the value and true importance of human interaction. That's also changed my Quality of Life! In fact, I've learned that the simple act of 'Asking for Help', is an incredible skill itself ... one that I wasn't very good at initially, but with practice, have really come to rely upon! Only
just last year did I realize the significance of 'asking for help' ...
Why? Because neither social isolation nor extended solitude (both of
which are SO easy for me with my disability) are healthy to our human self! Rather,
it's in our interactions, and our sharing (the good times and bad) with others, that rewards us, particularly emotionally.
We're social beings ... beings of unity. We like to enjoy one another, and we need one another ... that's Interdependence, and that's the human condition. That's been my experience ... and I've found that my Quality of Life is much better when I'm with others, sharing an emotional connection, interacting, being social, asking for and receiving help if necessary, and if possible serving too! Speaking of serving, oddly enough, it seems that having a mindset of Patience has best served my situation and disability. It takes a lot of practice, often with failures, but I see the practicality and usefulness in being steady and balanced, given all I'm going through, and I feel that cultivating a mindset of Patience is a tremendous gift. Patience sure seems necessary, especially given the current political climate.
To close, I'm curious if either idea: 'Quality of Life' & the 'mindset of Patience' ... found a particular resonance within you? Do you see a similar connection like I do? I'd love to hear some examples of how your Quality of Life increased as a result of practicing a 'mindset of Patience'. It's always nice just to receive your comments. Thank you!
Till next time ...
my name is Wylie, and I'm your PainPAL
Tuesday, January 31, 2017
Friday, January 20, 2017
Perseverance and Pain: Inside and Out
HEY!
Thanks for taking the time to read my Blog. I admit it was tougher than I anticipated it would be, to open up and share my experiences. So I'd like to give thanks to all who continue to encourage me!! I sure appreciate YOU!!
Ps. Please enjoy a little WylieMuz groove in the background while you read:
Reverbnation WylieFunk
And so ... here's another PainPAL installment:
Blog 2
Perseverance and Pain: Inside and Out
It's been a trial to accept that I'm disabled, especially when doctors hold out hope that their surgeries will make me better. Well, I've been disappointed before, with surgical failures and physical therapy setbacks. Yet recently it occurred to me: stop expecting anything from anyone, even yourself. It's a funny thing Expectation, funny because I can disappoint myself when I expect something of myself and don't follow through (ick!).
Now that's INSIDE stuff (and honestly, thankfully, I've become a LOT less self-judgmental than I used to be)! Increasingly I've come to learn more and more about the difference that exists between what is within, on our inside and that which is external, i.e. what's outside. The internal and the external (sounds like the old movie title ' The Agony and the Ecstasy'). Even the idea of body, mind and spirit is esoteric to some, but because I've been living in Pain regularly for the past so many years, I've developed a heightened sense of what's really Inside, and what's Out.
I've decided that Pain is external to WHO I AM on the Inside.
Things like my thoughts, feelings, emotions ... love, happiness, joy, sadness, sorrow, despair ... that's all Inside 'stuff'. So is Perseverance; so too, acceptance, grieving, anger and hopelessness. Yet when I experience Pain, whatever the level (depending on how much I walk or weight-bear), I've begun to see it like a signal that's outside myself ... like a stop light (usually red of course). Perhaps a better metaphor is that Pain acts like waves upon a Ship at sea.
I'm the Ship, the waves act like Pain ... sometimes it's calm, but more often than not, the waves beat against the boat, at times seemingly out of wack, as if the tides are high. Sometimes the waves are sporadic, going in and out rapidly, at other times it's like a tidal wave, sometimes the water vanishes like when my knee buckles from pain ... regardless, here I am, the Ship, being rocked about, up and down, slammed, relentlessly beaten, sometimes to the point of being capsized. That's why the phrase, 'I'm at the end of my rope' or 'I'm hanging in there' actually has a literal meaning for me.
Through it all, I've learned that as you run out of patience, what you have left (perhaps all you have left) is perseverance (and Faith too, if you're God fearing). I never thought of myself as having much patience, but when you begin to experience Pain daily, you're forced to adapt, and then have to manage your life differently (a job in and of itself -- one I'd ask of no one).
Each and EVERY day demands a set of actions (and not your typical normal lifestyle) just to keep going. At times, the daily demands of disability feel more like a trial, and Perseverance and Faith become even more important. Much of my time seems devoted to managing to staying afloat (when patience is the key), dealing with the Pain and consequences. At the least, I've finally recognized that I can't stop the waves ... because they're Outside me. I can choose however, how I handle them Internally, by learning to manage myself and my actions, with patience and resilience.
Hopefully, as the disability continues, it'll help me grow in character and spiritual maturity, and I'll find myself making positive progress towards my Hopes, Goals and Dreams.
Till next time ...
my name is Wylie, and I'm your PainPAL
Thanks for taking the time to read my Blog. I admit it was tougher than I anticipated it would be, to open up and share my experiences. So I'd like to give thanks to all who continue to encourage me!! I sure appreciate YOU!!
Ps. Please enjoy a little WylieMuz groove in the background while you read:
Reverbnation WylieFunk
And so ... here's another PainPAL installment:
Blog 2
Perseverance and Pain: Inside and Out
It's been a trial to accept that I'm disabled, especially when doctors hold out hope that their surgeries will make me better. Well, I've been disappointed before, with surgical failures and physical therapy setbacks. Yet recently it occurred to me: stop expecting anything from anyone, even yourself. It's a funny thing Expectation, funny because I can disappoint myself when I expect something of myself and don't follow through (ick!).
Now that's INSIDE stuff (and honestly, thankfully, I've become a LOT less self-judgmental than I used to be)! Increasingly I've come to learn more and more about the difference that exists between what is within, on our inside and that which is external, i.e. what's outside. The internal and the external (sounds like the old movie title ' The Agony and the Ecstasy'). Even the idea of body, mind and spirit is esoteric to some, but because I've been living in Pain regularly for the past so many years, I've developed a heightened sense of what's really Inside, and what's Out.
I've decided that Pain is external to WHO I AM on the Inside.
Things like my thoughts, feelings, emotions ... love, happiness, joy, sadness, sorrow, despair ... that's all Inside 'stuff'. So is Perseverance; so too, acceptance, grieving, anger and hopelessness. Yet when I experience Pain, whatever the level (depending on how much I walk or weight-bear), I've begun to see it like a signal that's outside myself ... like a stop light (usually red of course). Perhaps a better metaphor is that Pain acts like waves upon a Ship at sea.
I'm the Ship, the waves act like Pain ... sometimes it's calm, but more often than not, the waves beat against the boat, at times seemingly out of wack, as if the tides are high. Sometimes the waves are sporadic, going in and out rapidly, at other times it's like a tidal wave, sometimes the water vanishes like when my knee buckles from pain ... regardless, here I am, the Ship, being rocked about, up and down, slammed, relentlessly beaten, sometimes to the point of being capsized. That's why the phrase, 'I'm at the end of my rope' or 'I'm hanging in there' actually has a literal meaning for me.
Through it all, I've learned that as you run out of patience, what you have left (perhaps all you have left) is perseverance (and Faith too, if you're God fearing). I never thought of myself as having much patience, but when you begin to experience Pain daily, you're forced to adapt, and then have to manage your life differently (a job in and of itself -- one I'd ask of no one).
Each and EVERY day demands a set of actions (and not your typical normal lifestyle) just to keep going. At times, the daily demands of disability feel more like a trial, and Perseverance and Faith become even more important. Much of my time seems devoted to managing to staying afloat (when patience is the key), dealing with the Pain and consequences. At the least, I've finally recognized that I can't stop the waves ... because they're Outside me. I can choose however, how I handle them Internally, by learning to manage myself and my actions, with patience and resilience.
Hopefully, as the disability continues, it'll help me grow in character and spiritual maturity, and I'll find myself making positive progress towards my Hopes, Goals and Dreams.
Till next time ...
my name is Wylie, and I'm your PainPAL
Monday, January 9, 2017
16 years of Disability ... so far
Welcome to PainPAL
My name is Wylie. I've been disabled for just over 16 years now, and I'm still waiting on double knee replacements. It's my age the doctors all say; at 42, you're too young to have the surgery, and you need to wait as long as you can.
Well F*ck! That sucks! 16 years of disability, plus what's ahead, that's a helluva LOT of Pain to be going through day in and day out. If anyone ever asks, it's WORK in and of itself, to live with REAL, saw-slicing pain, day in and day out. But that's LIFE ain't it?!
Actually, it's my life, my burden, my path .... and to persevere, with patience and dignity, courage and above all, by FAITH, is how I've kept going, kept moving, stayed active, and NOT GIVEN UP, during these YEARS of suffering. Yes I experience deep depression too, but I've found answers for myself, that keep me going. AND isn't that the KEY?? to keep going???
Of course when in PAIN, and then in order to minimize the pain, I tried passivity. But being passive has put me through a test I could not have imagined. Thankfully, I witnessed the courage of my Godfather, as he went through Muscular Dystrophy from start to death ... a disease that has no fix or cure ... a disease that degrades the muscles. What amazing courage he showed through his life.
Now, it's my turn to live with a situation that really tests me each day. Now, I need to find that strength within MY self. And oh! the acceptance ain't the easy part either. I think that took me some eight to 10 years, before I finally engaged with this new situation in a positive way.
Disability is a completely different, new and foreign identity, with daily struggle, body in pain, with a mind that wants what it once was able to do, to BE, and now, wanting out of the Pain too! Yet, thankfully, through my FAITH, and regular spiritual practices like prayer, meditation and going to Mass, plus with the help of doctors, I'm able to manage my situation with some measure of balance.
It's SO easy to lose your way because of pain! Because of the passivity, I'd isolate myself. I did so for years before discovering that it wasn't that helpful, and that asking others for help was REALLY Positive, as was their company! I was ok with being alone (though I'm actually a social butterfly when healthy); I had been an independent adult, working as a jewelry store manager, when I slipped on a throw rug and fell. Seven-some surgeries later (with two more reconstructions) and my life is forever changed.
Thankfully though, I'm also an artist (jewelry designer, singer and songwriter). Of course with the disability, I can't walk or concentrate for very long, but I still can think, still can design, still can write, still can Sing! And that's the point of a disability: Adapt, find out what you can and can't do, then Do What You Can. Learning to let go of my able-self was really, REALLY TOUGH. I think I still grieve sometimes. I don't really bargain with God, but I do tell God that I could do more if I were able-bodied again.
And yes, there is some hope of the next surgeries working. The last two (partial) replacements failed within three months each however. And WOW! what a bummer that was! Remember that old comic sketch of the deer standing with the bulls-eye on his side, and the caption: 'Bummer of a birthmark Hal' ... yeah, that's kinda what that's like. Going through all the surgery, Physical Therapy, pain, Hope, work, unknown, uncertainty, and nope, not better. It wears on your insides.
Those two surgeries took a lot out of me emotionally, and, each day I still have to feel the pain emanating from my knees. It often knocks me off my game ... all the damn time! It's kinda shocking really, when I try to act normal or walk when I should be using my wheelchair. And as a man, in this society, that seems to have lost its' moral courage and moral compass, being disabled isn't something aspired to! Quite the opposite.
Use the motorized scooter at the Safeway or Target, and you'll see what I mean. Everyone looks at you as if you might have a communicable disease! Really though, most people are kind-hearted, yet, you will NOT FEEL THAT when you're riding around. That's why I usually wear my sunglasses; those looks are unsettling, as if something is really wrong with me ... but I'm the one in PAIN!!!
Where has the COMPASSION gone?
That's one theme I'll discuss in depth in this PainPAL blog. My hope is that in sharing my situation, you and others who read the blog, may gain something from the sharing. If you have a question or comment, I'll do my best to answer.
I plan on writing every week, or every two weeks, depending on how I'm feeling. Whether you are disabled or not, everyone goes through pain of some kind: physical, mental, emotional, etc... I'd like to believe that in some small way, I can reach people who're hurting, just to share, and, so you know you're NOT ALONE. Truth is, we're never alone.
I learned that God is always with us ... it's just up to us to ASK!
That's what happened to me. In a moment of horror, when all seemed dark, and I felt LOST for all eternity, I asked God, "Are you there? If you are, please help me!" And would you believe, there was a knock at the door just then. When I opened the door, I looked in disbelief: there wasn't anyone there!! God's been a part of my life ever since. And I know with certainty, no one is ever alone. NO ONE. We are connected in ways we'll never understand. And that's AMAZING! So, don't be afraid.
Open your heart and let's go on a journey of discovery together.
Till next time ....
my name is Wylie, and I'm your PainPAL
My name is Wylie. I've been disabled for just over 16 years now, and I'm still waiting on double knee replacements. It's my age the doctors all say; at 42, you're too young to have the surgery, and you need to wait as long as you can.
Well F*ck! That sucks! 16 years of disability, plus what's ahead, that's a helluva LOT of Pain to be going through day in and day out. If anyone ever asks, it's WORK in and of itself, to live with REAL, saw-slicing pain, day in and day out. But that's LIFE ain't it?!
Actually, it's my life, my burden, my path .... and to persevere, with patience and dignity, courage and above all, by FAITH, is how I've kept going, kept moving, stayed active, and NOT GIVEN UP, during these YEARS of suffering. Yes I experience deep depression too, but I've found answers for myself, that keep me going. AND isn't that the KEY?? to keep going???
Of course when in PAIN, and then in order to minimize the pain, I tried passivity. But being passive has put me through a test I could not have imagined. Thankfully, I witnessed the courage of my Godfather, as he went through Muscular Dystrophy from start to death ... a disease that has no fix or cure ... a disease that degrades the muscles. What amazing courage he showed through his life.
Now, it's my turn to live with a situation that really tests me each day. Now, I need to find that strength within MY self. And oh! the acceptance ain't the easy part either. I think that took me some eight to 10 years, before I finally engaged with this new situation in a positive way.
Disability is a completely different, new and foreign identity, with daily struggle, body in pain, with a mind that wants what it once was able to do, to BE, and now, wanting out of the Pain too! Yet, thankfully, through my FAITH, and regular spiritual practices like prayer, meditation and going to Mass, plus with the help of doctors, I'm able to manage my situation with some measure of balance.
It's SO easy to lose your way because of pain! Because of the passivity, I'd isolate myself. I did so for years before discovering that it wasn't that helpful, and that asking others for help was REALLY Positive, as was their company! I was ok with being alone (though I'm actually a social butterfly when healthy); I had been an independent adult, working as a jewelry store manager, when I slipped on a throw rug and fell. Seven-some surgeries later (with two more reconstructions) and my life is forever changed.
Thankfully though, I'm also an artist (jewelry designer, singer and songwriter). Of course with the disability, I can't walk or concentrate for very long, but I still can think, still can design, still can write, still can Sing! And that's the point of a disability: Adapt, find out what you can and can't do, then Do What You Can. Learning to let go of my able-self was really, REALLY TOUGH. I think I still grieve sometimes. I don't really bargain with God, but I do tell God that I could do more if I were able-bodied again.
And yes, there is some hope of the next surgeries working. The last two (partial) replacements failed within three months each however. And WOW! what a bummer that was! Remember that old comic sketch of the deer standing with the bulls-eye on his side, and the caption: 'Bummer of a birthmark Hal' ... yeah, that's kinda what that's like. Going through all the surgery, Physical Therapy, pain, Hope, work, unknown, uncertainty, and nope, not better. It wears on your insides.
Those two surgeries took a lot out of me emotionally, and, each day I still have to feel the pain emanating from my knees. It often knocks me off my game ... all the damn time! It's kinda shocking really, when I try to act normal or walk when I should be using my wheelchair. And as a man, in this society, that seems to have lost its' moral courage and moral compass, being disabled isn't something aspired to! Quite the opposite.
Use the motorized scooter at the Safeway or Target, and you'll see what I mean. Everyone looks at you as if you might have a communicable disease! Really though, most people are kind-hearted, yet, you will NOT FEEL THAT when you're riding around. That's why I usually wear my sunglasses; those looks are unsettling, as if something is really wrong with me ... but I'm the one in PAIN!!!
Where has the COMPASSION gone?
That's one theme I'll discuss in depth in this PainPAL blog. My hope is that in sharing my situation, you and others who read the blog, may gain something from the sharing. If you have a question or comment, I'll do my best to answer.
I plan on writing every week, or every two weeks, depending on how I'm feeling. Whether you are disabled or not, everyone goes through pain of some kind: physical, mental, emotional, etc... I'd like to believe that in some small way, I can reach people who're hurting, just to share, and, so you know you're NOT ALONE. Truth is, we're never alone.
I learned that God is always with us ... it's just up to us to ASK!
That's what happened to me. In a moment of horror, when all seemed dark, and I felt LOST for all eternity, I asked God, "Are you there? If you are, please help me!" And would you believe, there was a knock at the door just then. When I opened the door, I looked in disbelief: there wasn't anyone there!! God's been a part of my life ever since. And I know with certainty, no one is ever alone. NO ONE. We are connected in ways we'll never understand. And that's AMAZING! So, don't be afraid.
Open your heart and let's go on a journey of discovery together.
Till next time ....
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