Accepting disability

[Eagle Ray]

Hi, today I’ve realised I may need to apply for the disability support pension. I’m with a disability employment agency and they recommended it today and my psychologist last week. On good days I can go for walks and do a few things at home. Other days I’m struggling to function to do basic tasks. Today I could not even get my car key in the lock because I was so unwell and had to lie in a park for sometime before driving home to my town, realising I wasn’t safe to drive until I rested.

I’ve had a chronic pain and fatigue condition for 35 years. I’ve pushed through periods of extreme pain on slow release synthetic opioid meds in order to be able to work. More recently I’ve developed an autoimmune liver disease. It somewhat stabilised with the right treatment in recent months, but can progress to liver failure if it worsens and so I have to manage it with care. I have complex ptsd, anxiety and depression, the latter made worse by recent steep changes in hormone levels from perimenopause. I’ve always pushed through in the past, but I feel I am spent and my body is screaming at me it can’t keep going as it has.

But I feel a sense of grief, a loss of who I wanted to be and hoped for in life. I had a creative business idea but despite being technically capable I’ve realised I’m unlikely to be able to run a business in any great capacity. Accepting my limitations is hard and I think I just have to write that down here.

I may not even qualify for the DSP as it’s so hard to get it now, yet I’m being encouraged to do it. My future feels so uncertain. I want to feel independent and capable. I don’t like accepting my limitations and it’s hard not to feel depressed. Not sure if anyone can relate but just needed to tell someone how I feel. Living alone I only have myself to keep myself going and it can be a real struggle at times. There is no one to help me on days when I’m incapacitated and in extreme pain. I was a carer for years also and that has also burnt me out. I am spent.

[Eagle Ray]

Dear Croix,

I’m about to go off to sleep now but I’ll have a listen to those songs you mention tomorrow. I know Paint It Black and familiar with the sound of Tom Wait’s voice but don’t know his songs well. I look forward to The Muppet Mash 🙂

 I do agree, music can be used as a kind of progression out of bleakness and I think I have a similar approach to you, working my way up to the sunnier songs.

One thing Daniel Lanois talks about is the way a sad song can kind of neutralise our sadness by resonating with it at the same frequency. He calls this emotional phase cancellation, drawing on the principle of what’s called phase cancellation in audio engineering and physics. If one frequency is played directly at the same frequency, the two cancel each other out. So by extension, a sad song can heal a sad feeling/emotion by resonating with it at the same frequency.

 I think it also has something to do with empathy. It feels like someone else is understanding us when singing about the emotion we’re going through. It can be very healing. It kind of frees the emotion to be released from us.

And yes my snorkel was open at the end. The ping pong valve is an interesting idea. Did you use that to prevent water getting in to enable you to dive down with it?

Sleep well 😴

[Eagle Ray]

Dear Croix,

I’ve just been listening to the music you mentioned. Paint it Black was my favourite Stone’s song as a kid, but I’d never closely looked at the lyrics before. I think sometimes we have to feel that dark space which is what actually purges it and allows it to lift. And Misery is the River of the World I really liked too. It’s almost like demented circus music and sometimes that’s what our inner world is like. It reminds me of good theatre that really speaks to the human condition. And then I listened to Windmills of Your Mind. The lyrics are beautifully written and a bit like the Tom Waits song is expressing being stuck in the same circular trap of our troubled thoughts, emotions and feelings. I feel like it really does help somehow to connect with such songs when in that place.

And then I watched the Muppet mashup of God’s Away on Business. Ha ha ha ha 🤣 I’m going to put that one in the Beyond Now app. Anytime I start feeling desperate or dismal, that is going to make me feel better every time. Thank you for sharing it.

 I hope the book is at least a bit helpful in relation to COPD (it deals with multiple other conditions too). I just remember how the exercises he did with a guy with COPD enabled him to walk up stairs without the breathing difficulty he usually had. It just went away. When my breathing is problematic I can’t walk up the stairs without difficulty. When I first did somatic healing with my therapist last year that went away. Then recently it came back. For me lung function seems to have an association with trauma. I can feel I’m starting to heal again at the moment but needing lots of rest to do that.

Still chuckling about the Muppet Mash 🙂

[Croix]

Dear ER~

Yes the valve was so the tube did not fill with water when one dived deeper. Not always successfully but a help.

I"m glad you appreciated those songs. Tom Wait's "Gods away on Business" was an excellent video-clip (complete with emus) and my first intro to Tom Waits. I think  Clues_of_Blue who you know introduce me to him. Also on the darker side was his "Hell broke Luce" and on the lighter the "Chocolate Jesus - the Immaculate Confection"

I think what you are saying about 'wave cancellation' I look at from a different perspective, but it's probably the same tihng. Until I've heard the dark I can't progress to a slightly lighter level. I have thought it stops one from feeling isolated that other have been htat way. Amy Winehouse is another. At the other end of the  spectrum (apart from umpteen muppet mashes) is "Via Con Me", which I mentioned some time ago.

For me music does lead on to comedy and humor, and I've many clips of those as well.  I too use Beyond Now, however I find in "Things I can Do For Myself" the lack of ability to include links makes running any particular clip or music fiddly at a time when I might not feel I can be bothered, so I use a text file with them all in it and simply  refer to that file wiht pics and other things in Beyond Now.

For good theater that reflects the human condition my taste would not be that of many others but my favorite is Samuel Beckett's "Waiting for Godot", a play which you can give almost any interpretation to:)

Croix

[Eagle Ray]

Dear Croix,

I just watched the video clip version of God’s Away on Business with the emus. It definitely has a kind of absurdist Vaudeville feel to it. It made me think of the early David Bowie song Rubber Band from the 1960s which is also Vaudeville-like and has an absurdist feel with a quirky video. Of course Waiting for Godot is theatre of the absurd while also reflecting the human condition. Perhaps the absurd is what we sometimes need to cope with life. At school we read The Caretaker by Harold Pinter and we were  also shown a film of another play of his called The Room. I remember it had Annie Lennox in it. It seems like the post WWII period led to a trying to come to terms with what just happened, and absurdist theatre grew out of that. Actually I remember hearing David Bowie talking about growing up in post-war Britain and the evidence in the streets still that war had happened, buildings still showing damage, and the sense of being in recovery. Music, theatre etc helps us come to terms with things.

 I agree very much that music and theatre that reflect how we feel can help us feel less isolated. I’ve listened a lot to Evanescence, a gothic metal band with classical overtones. They deal with dark stuff a lot. Their lead singer Amy Lee does a version of their song Bring Me to Life with a cool Japanese band called The Wagakki Band and an orchestra. It’s my favourite version of that song and it’s helped me when deeply depressed. Also, when I was processing intense anger I discovered their song Use My Voice. This was a very good one for me developing assertiveness in the face of bad behaviour from others. Songs have absolutely been tools for me in coping and getting through difficulty. Different ones help at different times.

At the moment I am drawn to peaceful and restful songs about healing. It’s like I’ve gone through a lot of tumultuous emotion and I’m now letting go. I’m really enjoying songs about acceptance and transcendence, understanding that life has both struggles and beauty.

[Croix]

Dear ER~

I think "I hope you break your baton" is rather a mild response to the band leader stealing his girl:) The set with a suggestion of a library garden seating setting plus one arm of the band leader does allow the mind to roam through different ideas as does the theater of the absurd. I don't mind Pinter though found the stage version of "The Room" a bit savage. I think, if you mention Annie Lennox you must be talking about the later film which I've not seen.

London in my youth very much bore the damage to buildings, plus many sites surrounded by tall wooden sheets with small rectangular holes cut in them so you could see inside. Many had 'Wimpy' on them, which referred to a construction company, not the first English hamburger chain of the same name.

Although pretty devastating it was not as bad as what one sees on TV nowadays (which is why I avoid it)

I did listen to Wagakki Band - "Bring Me To Life" with Amy Lee  but had to resort to a lyrics version to get all the words and meaning. Again my mind wandered to the Ensemble Nipponia's "Ogi No Mato" (The Folding Fan as Target) found in the original "Blade Runner". It also goes from quiet to powerful, both in voice and instrument.

Music about struggles and beauty? Well I'll stick to the same film and mention the Vangelis' rain version of 'Bladerunner Blues'. Some prefer the version without rain backdrop however I think rain can represent difficulties everpresent.

 Please excuse me, I seem to be rambling on a bit 🙂

Croix

[Eagle Ray]

Dear Croix,

Yes I too avoid the TV news. I occasionally look at the ABC news on my phone where I can choose to open and read the stores I want to and leave the ones that I don't.

I listened to Ensemble Nipponia's Ogi No Mato. It's quite trance-like which I like. While looking for an English translation I found the following quote about it which I connected with:

The song encourages listeners to remain calm and focused in the face of adversity and to be in harmony with the natural world.

I then read the translation and love it. It reminds me of Haiku poetry. The natural world is my medicine and I need to connect with it everyday for my health. It is literally what calms and heals me.

I also listened to Vangelis' rain version of Bladerunner Blues, or at least a 10 minute version. The first thing that came up was 7 hours! It is intensely moody and took me straight into a city at night, perhaps in a car with the wipers going in the rain while passing the neon signs and urban scenes. I've still not seen Bladerunner but have heard it's a classic and really must watch it one day.

And don't worry, you are not rambling Croix. It seems you are just having one idea spark another. My brain is very lateral and tends to work sideways rather than in a linear, forward direction, so thoughts and ideas sparking other thoughts and ideas makes a lot of sense to me.

At the moment I am learning how to totally rest, so reflective and meditative songs are helpful. My body is making a decision to let go completely. It's at an end point where it can strive no more. I've spent a lifetime feeling I have to constantly work hard to meet the needs and expectations of others, and finally I am now totally letting go of that. It's profoundly necessary.

Every now and then there will be a bit of striving again, where I think I have to do this or that, and then my body just says no, let go. I feel like I am going through a deep and necessary healing, as well as an acceptance of where my body is at with the liver disease etc.

The liver disease itself can cause extreme fatigue which is likely part of what is happening. I feel diseases are a way of telling us something and I had to perhaps get this debilitated to learn I could not continue fighting so hard to survive all the time. I'm realising too you can kind of heal with a disease. You learn to live peacefully with it and accept it, and that in itself repairs the body a lot, even if it doesn't completely remove the disease. I just know to keep following this path of relinquishing struggle and letting go.

[Croix]

Dear ER~

I'm a bit relived you can appreciate my meanderings, they (for me at least) tend to generate thoughts and feelings I don't always anticipate. I'm glad you were able to relate to that song, which also embodies courage.

"Blade Runner" (the earlier versions, not so much the new sequel of 2017) is a multi layered work in which one can constantly discover fresh depths, it is a SF dystopian film noir on the surface, and has a most excellent soundtrack by Vangelis.

MK, is this one you have  been able to appreciate?

The rain is ever-presenter and leads to a scene where a main character who might have been seen as the villain exhibits unexpected humanity and the uses poetic imagery that lingers while passing away:

• "I've seen things you people wouldn't believe. .... All those moments will be lost in time, like tears in rain. Time to die.”

Sad but there is a point, a fresh perspective. I'm linking your mention of illness giving a fresh viewpoint , and maybe part of that comes from the illness itself if I understand you correctly.  A few years ago an MRI disclosed a spot in my lung. Being a life-time heavy smoker until relatively recently I immediately thought of the big C, and that the curtains were slowly closing.

This was not helped as for some reason they could not take a biopsy and I simply had to wait three months for another MRI. During that time my perspective did indeed shift as I found that my life was cluttered wiht  so many duties and responsibilities that in fact were not really mine. Things became a lot simpler and clearer (and to a certain extent remain so). Your phrase 'letting go' fits well.

The good news was that despite other pulmonary problems the spot did not progress. So I agree that illness has a pronounced mental effect - but go further and do not necessarily think the illness has to be  altering the body on all occasions, sometimes it is just the knowledge

I hope you path continues on, it seems realy hopeful

Croix

[Eagle Ray]

Dear Croix,

Thank you and, yes, most definitely I think illness gives a fresh perspective. It would have been unnerving, at least to start with, not knowing about your lung and the delay ahead before you found out that the spot was not progressing. But I imagine there is a kind of adjustment in that time where, as you say, life and priorities become much simpler and clearer.

When I arrived home early last week after spending hours lying in the back seat of my car because I felt so extremely ill and was simply unable to drive, I found I had a letter from the pathology lab. When I saw they’d run a particular test that I found is normally done for certain cancers, and given I felt so ill, my mind went to the worst case scenario. But they are probably regular, standard tests and not necessarily of concern. I probably felt a sense of disturbed unreality for about an hour. Then a weird kind of calm came over me and a kind of acceptance that I may meet my fate that way. Then by the next day I realised it may be nothing of concern and there’ll hopefully be a less serious explanation for my symptoms.

 I’m still in strange limbo. I have to lie down after each task or activity before I can get up for the next. I was like this a year ago when I had only about 3 hours of functionality in the day, then I improved for quite a while. Now I’m accepting my body needs total rest. I went through relentless stress for a long time and it’s like I’m now being forced to give in to total rest in order to survive.

But also my last session with my psychologist was profoundly healing. I realised it’s the first time in my life I’ve let my guard down completely with another person. I just put my head down and cried and she was so there for me. I’m used to being the support person for others but haven’t felt safe allowing others to support me. Something in that session released something internally at a profound level of healing. That afternoon all these people from my life came into my consciousness and things from the past just healed over. Then that night I was able to write a song, the first in 13 years! I also had great support from a guy I did an online course with recently that dealt with healing from things like complex trauma and the health conditions that often manifest with it. His unconditional presence and compassion was also deeply healing. Human kindness can go a long way and heal so much.

So something is definitely shifting in a positive way and I’m just being very gentle with myself and accepting now of my physical limitations. I’m not pushing against myself - another first for me. It’s a strange feeling and a good one. Everything is ok as it is.

[Learn to Fly]

Hi Eagle Ray,

A very warm welcome and thank you for sharing your story with us. 

You have such a great inside about yourself. You are so honest with yourself, no matter how difficult this is. This is such a valued strength because it shows your resilience. Having an understanding of our own limitations doesn't have to be equal to trimming our wings in pursuit of our dreams. It might simply mean that we come to understand that we might need to change the narrative of our dreams and goals, and still work towards achievement, and fulfillment but in a different field. You have conquered so many walls of pain in your life. It would be good for you to acknowledge things you have always wanted to achieve but never will. This, however, doesn't have to mean the end but a new beginning on a different path of interest. 

Take care there. 

[Eagle Ray]

Dear Learn to Fly,

Thank you so much for your very wise and kind thoughts. I am indeed having to let go of certain dreams, and tears well up for me as I write this. But I know it’s all ok, and I’m now quite oriented towards working within my limitations and enjoying the things I can enjoy. Life in a way has become very simple.

Last night I slept on my couch under a blanket because I simply could not go up the stairs. But it’s what my body told me so I just listened. My body is going through a necessary collapse. I’ve realised it has to do that to have a chance of even a partial recovery.

 The more I read and learn about my liver condition, the more I learn that debilitating fatigue and cognitive confusion are part of it for many people. It’s the cognitive stuff that concerns me the most because it’s disturbing not being able to produce a clear thought at times. It’s apparently thought to be linked with an inflammatory pathway between the liver and the brain.

 I have no doubt my condition is linked to a mix of intergenerational trauma and childhood trauma. I’m going through a gradual process of healing these things which takes time, but I have some wonderful people who have supported me for which I am hugely grateful.

 I love your user name: Learn to fly. It’s made me think of a favourite Tom Petty song of mine called Learning to Fly. So I just listened to my favourite acoustic live version of this which can be found on YouTube: Tom Petty & the Heartbreakers, Learning to Fly, Bonnaroo 2006.

I love the lyrics to this song and they apply to me exactly right now. Like the protagonist in the song I started out all alone. My mother could not bond and I was profoundly alone. My Dad was consumed by uncontrollable rages that persisted throughout my childhood. My mother continued to have intermittent rage for the rest of her life. She had cast me in the role of being her parent from when I was 5. So like in this song, I’ve had to learn to fly without wings, the resources you are supposed to get as a child. I feel I have had to work it all out from a place of isolation. But others’ kindness has helped me feel less alone, and especially everything in nature - the plants and animals who are family to me.

It’s like my heart is breaking and healing at the same time. Sometimes you have to break open in order to heal.