One of the hardest issues I deal with as a victim of a chronic illness is the loss of the ability to do certain things that really define who I am. I think I’ve let go but then find myself looking back and feeling sorry for myself again. I know that many others experience this frustration from things they’ve shared in their posts. Our doctors give us pills for the physical symptoms but do little to help us deal with the emotional symptoms. Ignoring these issues can lead to depression and a sense of helplessness. Well I don’t have any simple answers, but I think the first step is to stare deeply and intently at the reality of your life, without flinching, and understand who you are now…truly see both the good and bad things that are a part of your life. Denial and delusional thinking don’t really help. Share your feelings with family and friends; tell them about what you’re experiencing. Seek professional help if you need it. Don’t be afraid to fully feel the sadness and anguish of your life; emotions embraced pass away more quickly than those that are suppressed. I was reading a collection of Walt Whitman poems and came across this little poem. It created a stark image in my mind. When we lose something a part of us dies with it. We make a choice to let it go or carry around the dead corpse with us. I imagined myself dragging around all these decaying corpses…a pretty grim image. It’s so much better to face them and then leave them behind. I know it may seem a bit morbid, but I found it encouraging; I can learn to let go and continue living in the moment the best I can. Past images of who I was don’t have to control who I am now.
Alan
O Living Always, Always Dying
by Walt Whitman
Sometimes I feel haunted by those dead bodies. But I try to think of it as temporary losses. I guess it's because I've seen abilities fade away and then new medicines redeem what I've lost. The entire process does change me though. I don't feel like I'm the same person I used to be while at the same time, I am discovering parts of me that were always there.
Sometimes, I just feel lost. Others, I feel more grounded than I ever have in my life. I know I miss working, being an artist and designer. But there is so much pain associated with those parts of my life that for the moment, I am glad to lay the burden of them down.
I've found in struggling for life, sometimes we have to let go of precious things. But the most valuable part of us remains. I will never truly stop being an artist or a writer just as I will always be a mother. Right now, it hurts too much to carry these burdens. There was a time in my life, when I had to hide away my art and my music. There was a time when I denied I was a writer. Only I dug them up again and embraced them with new love and passion. I expect to do the same again. It is what keeps me going. RA can never really take these away from me because they are part of my soul, the expression of who I am.
Thanks Deanna for a different perspective on the topic. I agree, as is often the case, it's not just black and white but there's a lot of grey in between. Sometimes we do need to set some things aside for a while and seek to regain them later when we're better able to deal with the emotional turmoil that surrounds them. That's a very comforting perspective.
Your comments triggered another thought. Some of the things I've left behind were just clutter...not really as important as I thought at the time. Getting rid of the clutter has given me more time to focus on new things that have become very important to me; for me, music is a good example. And if I have to give it up at some point in the future, I think I'm better prepared to do that now...a bit more emotionally mature, perhaps.
Alan
Realizing that some of what we leave behind IS clutter makes it easier to leave. When you truly sit down and look at things and prioritize, we can weed out the clutter and feel better for it and freer to focus on what is important. Sometimes what we leave is clutter, sometimes what we have to leave (even temporarily) is precious and harder to let go of. I look at this as a new reality for me. Yes some things have been hard to let go but once they have been, the load IS lighter and easier to bear.Alan,
Why do we have to let go of anything? I understand and sympathize with those who have lost parts of their lives - but the important things, the things that make us...us...is still there. We should never give up our dreams or admit to defeat. There is always a way.
This also deals with the subject of death - but I also interpret it to also deal with loss of dreams. It comforts me.
Dylan Thomas: Selected Poems
Edited by Walford Davies,
JM Dent & Sons Ltd, London, 1974
pp 131-33
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
Pammy,
The good news is that, for me, the things that are the most precious are, in fact, the things that I will never have to let go of, because they are things of the spirit and are not controlled by circumstances. As for the rest, I agree, some things are hard and some are easy if we view them with the proper perspective.
Pip,
A great poem...isn't it the poem quoted by Robin Williams in the "Dead Poet's Society"...a great movie! Actually, I think it was Rodney Dangerfield in the movie "Back to School"...oh well.
Alan
The rational solution is a balance I would think - but for me, I need to fight. I've spent a decade trying to regain all that I've lost when some would have said just give up. But I can't. Thomas' poem symbolizes for me the struggle to hang on to who and what we are. Does it matter that the poem is about the end of life - or the end of dreams? Our dreams make us who we are.
Pip
Is you son OK? Sorry if this is a sensitive subject.
Not a sensitive subject...his life is the most amazing miracle. When he was 14 he was diagnosed with severe depression...then bipolar...then schizophrenia. He was in and out of hospitals for several years and heavily medicated. Now he's a junior at a college in the midwest, living on his own and doing remarkably well, free of medication. He did "not go gentle into that good night", and I know what it feels like to "rage against the dying of the light". RA can inflict no pain sharper than we feel when our children suffer. When he was here over Christmas break, he played his saxophone at our church for about 300 people. I do believe I could hear angels singing.
Alan
Pip:
I don't think I have let go of things that really are ME. Often its more of the things I loved DOING, like I said, the clutter. Even then I haven't given them up completely, I just approach them differently.
I used to like bushwalking. Now I go camping and take photos. I used to like walking. Now I have to compromise and limit myself. LIke Deanna I have found parts of myself that I never knew existed. Parts of me that were always covered in clutter because I was too busy with 'stuff'. One of my friends said it so well (if a little bluntly). When I asked her to check out my myspace and my new venture of an internet shop, she nearly choked. She said I had always been the one with no creative ability whatsoever when we were growing up. A bit harsh I thought, but reasonably true.
I was too busy doing other stuff like gymnastics, running, swimming, horseback riding, canoeing. Now that I have been forced to slow down and give up most of those things (I still like to swim), I have found that I AM creative. I DO have an artistic streak. I CAN enjoy doing quiet, sedentary things. I take photographs and make jewellery that I sell in my online shop. I enjoy creating pretty trinkets. I enjoy taking good photograhs. And I am pretty good at it. Its a part of me that I might not have found if I had kept up all the busyness and clutter.
In my spirit I am still me. I still have a passion for the things I love, my family, my God, my life. Those things I will NEVER give up. RA has caused me to focus on those things and give up the clutter. Life is much easier after admitting that even though the 'active' me might be gone (maybe temporarily) I can still be me and express myself, in a new even 'mildly artistic' way.
Pammy,
I'm so happy for you that you discoved a different facet of your life! That is truly marvelous. I guess for me, I've had my life planned out for years and years and whenever I get close to my dreams, something gets in the way. I've had too many times where people tell me to just give up. So I'm angry - I had to take another YEAR of my life off dealing with this AI stuff. And now I'm about to go for it again. If I can just get moved...LOL
Alan,
That's fantastic! What do you think happened that got him back on track. Those are some supposedly hopeless diseases! Not that I believe that about any of this. :-)
Pip
As I keep seeing this topic on the board, I start thinking it's my own "dead" body I'm dragging around. Not the point of the post and all the comments are fascinating. But damn, my body hurts and it feels like that's all I'm doing is dragging it from place to place. In fact, if I could feel like it is the millstone and wish my spirit could just be free from it. I want to do so many things and I start, but the pain and the fatigue force me down once more.
Today is especially bad. The clouds are rolling in. The pain specialist has started something new which is not working and I can't take what does help some and oh, I just hurt. I beginning to realize just how much pain my body has been in as they try and find something that will give me relief. In the meantime, I'm stuck with this "dead" body, dragging it from place to place wanting some kind of relief.
It's days like this when I think about the next life and when we won't have these frail vessels to hinder us. Oh, I'm going to be zooming all over creation. But today, I'm stuck and frustrated.
Pip, I don't believe those illnesses are hopeless. I think that the people that do overcome the difficulties of living with them are those who develop a strong base in their lives. I can see that happening with my own daughter slowly, I hear that in what Roxy says about her daughter, and Alan's son is a beautiful example. When you can strengthen their core, amazing things emerge. Here's where parents do make a big difference. Alan and Roxy are absolutely devoted to helping their kids as I am with my daughter. Even the mental health providers seem to recogonize that if they can reach that internal person, recovery can happen.
I don't think these diseases are hopeless - just that the docs tell us they are. :-) I don't believe them.
And I hope you see this when you're feeling better. Congrats!
Pip