Max, I love what you wrote! Very moving...My song is definitely my work; I don't have much in my life other than work. I am in a field that I knew I wanted to be in since I was 16 years old. Due to a very rough childhood and early adulthood, resulting in chronic debilitating PTSD, I never had the trust or confidence to be in relationships until the past few years. Now my illness prevents me from being out there. If I didn't have my work, I wouldn't have anything, which is why it is so crucial for me to be able to return, and why I am so scared about how I will do. My work allows me to sing....

What a blessing to read your post! I am having such a rough day with this and you helped me to think about what allows me to sing... For me it's my faith in God and believing in hope... I pray that I am not suffering in vain but for a reason, even if it is to simply encourage 1 person on 1 day of my life. My wish is to be viewed not as a disabled sickly person, but as a kind spirit who sings regardless of my cage's condition. Thank you again!

My family sustains my inner music. On the days it seems not worth living in this corporeal cage, I sit and look at the pictures of my grown daughters and young grandsons and think how different life will be when I move closer and see them all more often. A daily conversation with any of them keeps me going.

Once upon a time my song was my children. For it was work that was my cage. I wanted nothing more than to raise them.

Later my cage was an emotionaly abusive relationship. I finally got to be a stay at home mom. This could no longer be my whole song. Too much was taken from me at this time. My song took on some simple notes. It was sung in laugher, kindness, talking and listening.

I will be honest. Now that I am ill that is not my song.

I love my kids. I can hardly call myself a stay at home mom. I do my best. I fail a lot. I can't be there for them like I have in the past.

I am not always up to being very social. When I get too fatigued smiling drains my energy. It falls off my face when no one is looking....and maybe accidently when they are.

I have to focus upon myself. If I do not I starve. I make sure my kids eat. I fix them something, or make one of them do it. But no one makes sure I eat every day. But my song is not this most basic need.

Every day I play a game called sims 2. It is not a "game" in the usual sense. I make up stories and use the game to play them out. In a world that is out of my control, I have control of this one little world. I get to watch my story unfold as I write it. In this way I sing.

(See why I had to put that other stuff first? If I just said I sing in a video game....it sounds really bad.)

Sometimes I get to go out in the world. I get to talk and laugh and literally sing. Sometimes I sit and have real conversations with real people. But this is not my song. This is when I get to come out of my cage for just a little while. When I must I go back in my cage. Like a domesticated bird I am glad for it. My wings are clipped and I can't fly far anymore.

As my real world gets smaller, my world inside the game gets bigger. It grows with my imagination. In this place I am not sick. So there I sing. The melody gets more lovely each time.

Dear MaxPD,
I really enjoyed your story and how you express yourself!
My cage is my House nicknamed " Hotel Hell" where my conditions have had me trapped in an unsual arrangement for the last 8yrs, as I have been unable to care for my children a lot of the time. My Ex Husband lives downstairs in the flat with our oldest Son who has Brain Injuries. I live upstairs with our youngest son who is in his last year of school.
I keep a caravan at Piha, a west coast Surf beach, Auckland NZ.
I escape as much as possible, to where as an 8yr child I found peace! This is my song...... sounds of birds in the bush ......cascading waterfalls....... warm black sand........ crashing surf........... children laughing......... starlight nights.......paradise!
Piha is my orchestra and alows my soul to sing..........

P.S I'm leaving my cage later this year, it has served its purpose, more time to sing...............

These are quite amazing posts to read. Thank you MaxPB for the
post and the way you've written. I too was touched by it.
I don't feel totally in touch with my song today. I'm having some
big challenges with my family who have been part of my song
but there's
friction there now. So. I turn to music which gives me sustenance,
to writing and talking to my friends and to my creativity which takes
me to very fine places I'm lucky in that I do get out and that has
kept me going in a good way. blessings to everyone here.

Hi Max, thank you for your post! My life use to revolve around me, my job, my children and my husband. It has been ten years now that I have been living in this shell of a body. My husband and I are empty nesters now. Weve come to rely on our faith and Ive learned that life is not all about me. My new song didnt come right away. It took years to find it and a lot of rehearsing! But I think I finally got my new song down! I am happiest when I am doing things for other people. I find people are so busy these days and no one has the time to plan pot lucks for the neighborhood or if a friend is in need, set up meals for them or just to sit and listen to someone who is hurting. Ive joined a couple of womens groups where I get to meet people and learn things. I jokingly say I make sure I have close friends join these groups with me because I need a driver to get me to the meetings and someone to push my wheelchair ;) When I do crash, my friends pray for me and rally around me. I don't feel embarrassed when the brain fog sets in. I just make jokes about it. Often I tease my husband that he is lucky that I still remember his name ;)

Hi Max
I just posted a question about how other people living with CFS combat shame and I think you've just answered my question so thank you :)
At the moment I suspect my 'song' surrounds rescueing and rehabilitating horses. Over the past couple of years I have been focused on just their health but have learned a little more about teaching traumatised horses to relax. It helps me do the same.
Please don't ever stop sharing on this site.
Regards
Annelise

I am touched by all the comments here, you are an amazing collection of people..I'm learning so much from you.

Hi Max

You wrote my heart for all to read. :-) Thank you for lifting up my spirits, which were in need of a lift! Bless you dear girl.

I have a passion for birds of all kinds and own many. When my canaries and finches sing, I sing with them in my heart. When my cockatiels are playing and spreading their wings out into the rain, I am doing it with them. My birds being happy is my song.

My song is a life spent with our Lord. He enables me to keep going though everything in me screams "Enough!" He brings joy within though I have pain and sickness every day. He is my substance and I couldn't get through a day without Him! :-)

My song is loving and caring for my husband and daughter as much as I can every day, for every day with them is precious.

My song is to see people cheered, uplifted, encouraged, life made a little better by someone else caring about them. To see the hope in their eyes from being loved.

I have a very old budgie, who was over bred and not fed properly by her previous owner. I tried to get her a loving home but no one wanted her. She cant fly, tires easy and is quiet. Tonight, we gave this girl a name and I told her, "We want her" and she can spend her last days with us being loved. Your message Max really spoke to me... We are like this beautiful budgie, sick, tired, pain etc... and does anyone notice or care? They might want someone else who is not sick to be their friend... But accepted someone, no matter what makes that person feel 'confined and caged' is a step to being truely free ourselves. :-)

Thank you and bless. Hugs to you, Angie oxox

Pssttt.. Sorry, I went onto another tangent at the end of my reply. :-)

May we all SOAR and be free in song. Our bodies may be captured due to illnesses but our spirits are not. oxox