We tend to focus on the physical symptoms of RA and the endless efforts to try to reduce them by medications, etc. RA also exacts a toll on our mental, emotional, and even spiritual health. So I thought I’d make an occasional post that focuses on these other aspects of RA.
Musings refers to thoughts and ideas that aren’t necessarily well formed or logical, but represent what’s lingering in my mind during quiet moments of contemplation. The sanctuary is a safe place I withdraw to and try to deal with my own inner turmoil…for me, it’s a little patch of woods outside of my office at work, secluded enough to find some solitude when I need it. So, here goes…feel free to respond if you feel inclined.
RA has a lot to do with pain and the suffering that pain causes. I read the following quote last week from a book I’m reading and it started me thinking.
“In the entire world, there is not one human being who is free from pain. Even in favorable conditions, a person encounters struggle. The external form of struggle appears to be cruel. Some describe it as a horrible demon, but its nature is not malicious. In fact, it is proper to welcome struggle, for its arrival is always auspicious. Struggle keeps us from growing sluggish. It transforms an ordinary human into a spiritually awake person respected by the world…It is alright if we cannot receive struggle with love, but struggle should never be discarded. To discard struggle is to discard God’s grace.”
Swami Kripalu
In my experience it is certainly true that all experience pain and struggle with its consequences. For RA sufferers it’s very much an “in your face” experience; for others it’s a lot more subtle. My musings led me to think about the difference between pain and suffering. Pain is an external thing, forced upon us. There’s not much we can do about it beyond the relief we can find in medications and other “remedies”. But suffering has to do with how we respond to pain and we can learn to manage our response to minimize suffering. It’s not an easy path and there are many frustrating setbacks but I’m committed to following a path that will lead to the wisdom to embrace the philosophy expressed so eloquently in the above quotation. Perhaps then I will have something of value to share with others who journey on this path. Has your struggle with RA transformed you into a “spiritually awake person”?
I hope you find peace and joy in your life,
Alan
Alan, I always appreciate your offerings. I would agree with everything you said above except for suffering. For me, suffering is the cocoon of all the pain, illness that is wrapped around me. I don't feel like it is in my internal world, but something that I try to keep separate from it. Pain bombards me. It interrupts my life. It is like an annoying offkey band marching throught the quiet moments of my life. But suffering is a point I reach when all the calmaties of my condition join in some mean chorus and I want to echo in some kind of wailing, but cannot.
My refuge from all of this is within myself. Here, I keep out the pain and the suffering. They are mere annoyances then. I play with stories in my mind to keep them at bay. I think of world problems I'd like to solve or friends I wish I could help. I hang onto the colors of my imagination.
For me, suffering is outside. If I didn't keep it that way, I would sink and drown below it because there is so much pain, weakness and sickness that I am overwhelmed by it. There is no comfort but knowing I can make it beyond the experience.
Yes, it deepens my soul. It stretches my heart. Grows my compassion. I ache more for the experience of living more than I ever did before. My frustration is in that I cannot do what my heart desires. So, I turn my energies toward the people I meet and grow to love. I have this desire to leave something of good behind my passing. I realize the shortness and fraility of life and it causes me to tread more carefully among others.
RA has changed me as much internally as it has externally. If you don't let it open up your soul, it will crush you and make you bitter. The people that I've met her all seem to have to have discovered that even if they don't know how to express that feeling. I can tell that in the way that they turn and encourage each other.
Pain and suffering does make one grow.
It was a wonderful quotation to share.
I certainly see your point and it's not much different from my own experience. I guess there's a part of me, though, that wants very much to believe that there's a path to "enlightening" my mind so that I can change how I deal with pain and reduce or eliminate that feeling of helplessness that I associate with suffering. I'll let you know if I discover any great "wisdom" in my continued journey. I enjoyed your comments...it's nice to have a discussion that doesn't revolve around pills and injections once in a while.
Alan
Alan, I always enjoy you insightful musings. I feel that RA has made me a more spiritual person. At first it brought me to church to pray for relief of pain and a cure. I found many others there on their own spirtual journeys, some much worse off than me who are now like family. I have found friends on this board who are very dear to me who are on similar journeys. Having a chronic disese makes you prioritize. You don't have time to worry about petty things because you're too busy surviving. In a way, it makes you realize what's important in life and makes you focus on what's really crucial.The spiritual side of our afflictions is a definite bonus and when the day comes that we know it has made a "better" person of us, such as with more understanding and tolerance, it feels like emerging from the dark into the light. That's my feeling and there have been so many expressions of this sentiment in previous posts it must be kinda universal. The friendship and understanding you get here is proof positive, don't you think?Alan, I agree that if you can reach some point of enlightment that you can find yourself outside of the pain and depression that seems a constant with this illness.
Oh, to be one of those people who seem to rise above all of it. Living in our souls, rather than our bodies does seem to be a holy quest of sorts.
I honestly can't imagine any of this. I don't know what to say, or how to explain it, but I don't see ANYTHING like that. I don't even think about it like that. .... I'm not really sure how I think of it... I do know, that in highschool, at the tail end of my last flare I was very depressed. Hard enough to be a teenager(hah) harder to be a teenager in a new town, and harder still to be one with such a yucky disease. Bleh. And then one day...I dunno.. I snapped? Maybe just a little bit. But I remember it. I really did just wake up one day and think "You know what? Screw this. There's too many things I want to to, to be giving in like this" Maybe its just because I'm so much younger. I really am pretty sure that's part of it. Yeah, I have RA, but my body is much younger and hasn't seen as much of life as most people with RA. So maybe that's why I have alot more energy and why I'm so much more able to just plow through the pain and do things anyway. But I know I don't think of the pain or the suffering like that. I just....don't really think about it. Maybe I'm crazy? I know that seems like a silly thing to say, or think. And probably impossible for someone who's been diagnosed late in life to do. After having so much taken away from you. :( I wish there was a way for you to see what it's like to have ALWAYS had RA. Its just a totally different light. I suppose its easier to accept for that reason...it's always been there. If I was upset over it, it'd be like being upset over my left foot. Sorry if it seems like I'm rambling..I usually am..my mind goes too fast for my fingers!!!! I love this thread...it makes me think. :) I guess if there was one actual thing I want to say...I wish there was a way to show you all what it's like for me, having always had RA. Maybe you'd find something in there that would help you deal with it a little more? And maybe not. Maybe that's rude of me. But I mean well. I swear....
<3 XOXO to you all!
Katie
Katie,
I think maybe your perspective is a lot different. If you still have lots of energy, then it may be easier for you to push through this. I can do that when I have energy. But there is not any time now that I am not in a great deal of pain. It's a constant. The fatigue is a constant. Also, older, I have more responsibilities that this world expects me to comply to that I can no longer manage. I've tried the "what the hell" attitude and ended up on my butt too many times.
I've had to change my dreams many times throughout my life. But it gets harder to do this as you get older. You become responsible for those people that you love in your life and when you can no longer care or provide for them, it's really hard. When your children suffer because of your illness, it brings a pain that hurts deep inside.
I have a 16-year old friend with Cerebral Palsy and she doesn't get it either as sweet as she as and as much she goes through. As you say, it is normal for her.
But it doesn't minimize the loss many of us feel. My shoulder going bad is taking away a very successful career from me, my livelihood, friends, social life, ability to take care of myself. It is putting me in a state of poverty in order to survive for the moment at the time when I should be enjoying the highlights of my career and my ability to bring in a good income. Unfortunately, this is not the only damage that is becoming permanent.
You have all your life still ahead and you can adjust easier. You have friends that don't understand. But I have lifetime friends that have ditched me because I decided to go on disability--like it is a major character flaw and not something I was finally forced into doing. I have had boyfriends that have dumped me. I have family members that excluded me from their lives. It is not just the physical that I have lost. If it was that, then sure, I think I could just adjust.
I know you are a very sweet, caring person. But it almost feels like you are adding to the guilt trip that is laid out everyday for many of us who are fighting this disease while still trying to live up to the responsibilities of our lives.
I would love to live in denial of how this disease affects me and up to the last year, I have done a darn good job of it. I am determined to live a full life in spite of RA. But right now, I am having to prove to Social Security and all the aid programs that I am sick enough to qualify. That process is demeaning and tears at one's self confidence. Today, I had to list all the things that are wrong with me and how they affect my functioning. I cannot think of a more depressing thing to have to do. It forces you to focus on the negative, not the positive of the things that you can do. I want to find a way to write my books and do my art. I want to work. But right now, I cannot no matter how full my dreams are or how desperate I am to try. I'm going to have to have help to reach these dreams or learn to dream new ones.
On top of that, I am losing the good medical care I had and having to go with the poorer quality state aid. I need three surgeries for which I must sit and wait. I am on the maximum combination of RA and FM meds and they are not controlling the disease. The joint destruction is continuing fast. My best efforts have failed me. My best attitudes have not stopped this from happening to me.
I feel like I'm losing the battle. But I'm not about to give up. I've always had health problems and I worked through them all, being an overachiever. While still working, I was the best in my group even with RA.
But I do hurt and I do suffer. These are facts in my life. You said your last flare was in high school. I haven't been out of a flare in months and months. I have such awful fatigue that things I love to do cannot be done. It breaks my heart to lose so much.
I believe what Alan was trying to say is that RA can bring out the beauty in your soul and transcend you above your physical condition. It seems you are saying that you are in tune with your physical condition and it doesn't bother you.
But some of us are facing serious, crippling progression of our RA. And, it is hard to overcome new limitations, to modify our self image. Hope is something we all must embrace. But as much as we share, our experiences are indeed quite different.
This however does not draw me farther away from you, but hopefully closer. Yes, I would love to see it through your eyes. But maybe you can understand that so many of us are facing major changes in our lives that are destroying our relationships and our ability to work. There's fear and hurt in the voices in this place. And, people need comfort and understanding to make it through especially in the beginning. You can offer that gift to others.