I approach the idea of suffering from 2 angles. One is from the knowledge that there is always someone who is suffering more than me, suffering atrocities that I cannot even begin to imagine. The other, is that as individuals, our own suffering is indeed the worst in the world. We walk in our own skins, live in our own minds. Ever since my RP diagnosis, 16 years ago, I have had people comment that they shouldn’t complain to me about their own suffering, given that mine must be so much worse. I have also had people tell me that RP isn’t so bad, that it isn’t going to kill me and there are people who have it much worse than I do. I believe we are all human, we all have value in our pain and in our joy and in our expression. Our plights are our own, but hopefully by sharing our experiences with each other, we learn and find spaces of healing and understanding. Or is this all bullshit?
I often wonder if I am selfish? I wonder, If I am not writing about my blindness, about my suffering or my loss, what do I have to write about? Who am I beyond the cloak of grief? Do I look to closely at my own suffering and miss the larger picture in the process? Do I have value in simply being a regular person in the world? Does my disease give me some special view of the world, change the condition of my heart, or am I naturally a deep thinking and feeling person? Does it matter? What happens when I pull my eyes away from my own internal struggles and allow the horrors of the world to penetrate my heart? Can I withstand it? Is it my human responsibility to withstand it? I talk and write about the beauty of everyone being wired differently, but is that just an excuse to stay in my head? Is all of this questioning a waste of time?
I have spent so much of life questioning my own value, trying to understand suffering, searching for a sense of validity, but perhaps I have missed out on life in the process, by always looking inward for these things. Perhaps I have missed opportunities to be good and do good in the world by shutting it out. I like the comfort of my home. I like the quiet and solitude. I like standing behind the curtain. I believe that there is life, rich and fulfilling life, behind the curtain, but is this belief a lie? Do I drown out the noise because I am afraid, or does the noise exist because the people who live in the heart of it are afraid of the silence? Perhaps all of this is true. Perhaps none of it is.
What I do know is that we all suffer. I have suffered and I have seen others suffer in unimaginable ways, and in allowing myself to see and feel both these realities of suffering, I have come to see it in a fuller spectrum. Three things ring true in my own current story: I am going blind, it is the worst thing in the world, and there are others who are suffering more than I will ever suffer. My pain is my own, but my heart, if I allow it, can lead me to look beyond that pain and see the world more honestly . Or can it?
June 8, 2018 at 12:11 pm
I have always respected people who; in what ever situation they are in still question life! By continually asking the questions we stand a chance at finding some truth & comfort. Your suffering is yours, not to be compared. But I have always felt you deal with your suffering really well. You are brave & sensitive. A good person. 😃
June 8, 2018 at 12:15 pm
You make me a better person, give me eyes I would never have had without you, because you look at the world in a way I never have and from that I learn and from you I learn, every day. I am pretty lucky!
June 9, 2018 at 6:18 am
That fella Joe knows what he’s talking about. 😊
June 9, 2018 at 6:21 am
Yeah, I have to agree! He is pretty awesome. And, you guys almost share a birthday!
June 9, 2018 at 6:24 am
I knew I liked that guy!
June 9, 2018 at 6:31 am
We will most likely be celebrating his birthday with the same kinds of refreshments you will be celebrating yours!
June 9, 2018 at 6:35 am
Excellent! We’ll be doing it in Reno with a bevy of buddies and a barrel of booze!
June 9, 2018 at 6:36 am
Sounds like a Blast!!!!!!
June 8, 2018 at 12:39 pm
You have, again, found a way to weave your way through emotional layers and take me with you. Lows and highs…ending with a smile.
June 8, 2018 at 12:53 pm
Thank you for always being such a support for me!!!! You are wonderful!!! I was just sitting here, avoiding going hiking, all this stuff running around my head and started writing, and now it is too damn hot to hike. I am crafty that way!
June 8, 2018 at 12:59 pm
Hahaha!
June 8, 2018 at 4:09 pm
I ended up doing the hike anyway!!!!
June 8, 2018 at 4:16 pm
Atta girl!!!
June 9, 2018 at 6:17 am
LOL!
June 8, 2018 at 1:09 pm
Just the fact that you ask the questions is evidence of your value. Life is not a series of answers, it’s a journey of growth. Your pain makes you grow. The suffering of others makes you grow when you allow yourself to experience it. The questins themselves bring about growth. The answer is not yes or no. It’s yes AND no. It’s amazing the way you can dissect yourself and leave the pieces there for all to see. Great post.
June 9, 2018 at 6:12 am
Thank you so much, Bruce!!!!!
June 8, 2018 at 1:30 pm
I think you have articulated the internal dilemma those of us who live with disabilities deal with way In a brutally delicate way. It’s the ying and the yang. I say if you have a good heart and your motivation is pure, then you are living an authentic life that shouldn’t be questioned
June 9, 2018 at 6:13 am
Thank you, Steve!!!
June 8, 2018 at 4:26 pm
I also believe you are articulating a universal dilemma because suffering does force you inwards to another level and to a hell of a lot of questioning. Its also part of being a deep thinker with a powerful mind. If only there was a ‘right’ way and a ‘wrong’ way to think about suffering or feel it or process it or deal with it, but there is not. Yes others out there suffer more and less than we do but that doesnt matter as it is our body and soul that has to deal with it and we can and do make suffering worse with our minds at times. Others go for a spirtual bypass. So we are all unique and all similar and we all struggle and some let go, some move out of suffering to embrace the suffering of the world. Some find it too much. All is okay each is the right way at that time. At least that is the sense I make of this most interesting and engaging dilemma. ❤
June 9, 2018 at 6:04 am
Exactly!!!! xoxoxo
June 8, 2018 at 5:10 pm
Sweet Susan, just because you question it all… is why you are just that, a sweet, endearing soul. I am so glad to have the privilege of reading all that you share. I am better for it. You are a blessing.
June 9, 2018 at 6:05 am
Thank you, Beautiful. I feel the same about you. I am grateful to have you as a teacher and a friend!
June 8, 2018 at 9:25 pm
My beliefs are similar to Joe’s – I believe the most awake, aware, and emotionally mature individuals are the ones who are humble, always question, and are open to possibility. We can’t be trapped by never and always, black and white. You are so self aware and alive, Susan! It’s a blessing to share in your journey.
June 9, 2018 at 6:08 am
Thank you so much, Angela! I am so grateful for you!
June 11, 2018 at 6:08 am
Pleasure is mine!
June 8, 2018 at 11:22 pm
I too think that asking the questions is important, and shows your sensitivity and intelligence. As for how to live, there is no right and wrong as long as no one is harmed. I am a behind the curtain person too, and have often wondered if I should be different, more noisy. But there is no need to push myself to become or do things that don’t suit me.
At times our problems seem to be the worst in the world. It’s only natural: they are our problems and it’s us who have to deal with them, and the thought there is worse trouble in the world doesn’t solve anything. Other times, thinking we are not the only ones who suffer, makes us see the bigger picture of human condition. We alternate between ‘selfishness’ and an open heart.
I don’t know if what I wrote makes any sense, because it’s early and I didn’t have much coffee yet. But thank you for making me stop and think.
June 9, 2018 at 6:10 am
It makes perfect sense and you said exactly what I was trying to say; only you said it more beautifully (even without coffee)!!! Thank you for reading and for commenting. You are lovely!!!!
June 9, 2018 at 8:21 am
Thank you, my dear! I think you are lovely too!
June 9, 2018 at 6:23 am
Speaking from my perspective (a) You have a lot to say about the topic you write about; it is not in any way selfish and does not come across as a “cloak of grief.” (b) This very post is a prime example of how craftily you look beyond your own affliction and see the grander world, better than most of us do. (c) You connect those two ideas seamlessly, and (d) You do so much more than write about RP.
You are complex, beautiful, insightful, and inspirational, in so many ways. Thanks for being Susan, Susan!
June 9, 2018 at 6:30 am
Thank you so much, Tom! I am incredibly grateful to be able to call you friend, to have your wisdom and kindness in my life! You have done a lot to help me start looking outward in a more active way, and although I will always be a behind the curtains person, I am learning that there are ways for all of us to give voice to things. I appreciate you more than you know!
June 9, 2018 at 6:34 am
Likewise, sister!
June 9, 2018 at 6:39 am
Do you have a like button for all the comments?… I find I have nothing more to add.
June 9, 2018 at 6:42 am
I am just so grateful that you are here, that I know you and that you are a part of my life. You fucking Rock!!!!!! Love you lady!!!!
June 9, 2018 at 3:00 pm
We all seem to have different feelings about our pain and how we deal with it. I haven’t mentioned my conditions often for fear of sounding like I’m fishing for pity. I write about my demons in my poetry as part of my body of work, but i try not to overdo it. You have a way of writing about your condition that is educational and inspirational, and is a good start in getting to know the real Susan. ☺
June 10, 2018 at 8:51 am
Thank you, my friend! I think that we, as writers, are so fortunate to have a place to go where we can deposit our demons, express our feelings, share our joy. We all have to find our ways of expressing ourselves, our avenues, what feels right to us as individuals. I know there are some who find me too open about pain and suffering, some who feel uncomfortable reading what I write or find my style to be self serving at best, but then there are those who understand, and it is in those spaces of understanding that the beauty of art and of being human resides. Those spaces truly are infinite and carry a range of voices; voices like yours.
June 10, 2018 at 10:46 am
Said so beautifully ☺ Thank you dear friend.
June 10, 2018 at 11:55 am
“My pain is my own, but my heart, if I allow it, can lead me to look beyond that pain and see the world more honestly . Or can it?”
My pain comes from 40 years of mental illness, the first ten without the right meds. I love your quote above. My pain is my own, too. And when I am enduring it I don’t want to hear of its benefits. Yet, now that I have the right meds, I “look beyond that pain.” But you are looking beyond your pain, EVEN WHILE YOU ARE STILL IN IT. What courage! You have my deepest respect. I look forward to more of your thoughts.
June 10, 2018 at 6:03 pm
Thank you so much, for reading and for this beautiful comment. I look forward to reading more of your story!
June 14, 2018 at 1:35 am
Looking beyond the pain is the goal…well said
June 14, 2018 at 6:11 am
Thank you, so much!
June 12, 2018 at 4:18 pm
All of the comments are awesome and well said. We love you! Susan
June 13, 2018 at 6:25 am
I am filled with so much gratitude!
June 13, 2018 at 10:38 am
You are a great inspiration to so many people.
June 14, 2018 at 1:33 am
Nice expression; our own sufferings is indeed the worse in the world… No one likes to suffer from any hardship or difficult situations
June 14, 2018 at 6:11 am
Thank you, for your comment and for reading!
June 14, 2018 at 6:37 am
Its a pleasure
June 15, 2018 at 7:58 am
I have a group of girlfriends that I am very close with. We were all getting each other up to speed with our lives and one of my friends said “oh, I feel bad complaining about this because Tiara had it so much worse, but…” I always want to hold people down and tell them that their suffering is their own, and not to compare it, because that is impossible and destructive. Does “perspective” of our pain lessen it? Does a bruise hurt less than a broken leg? It depends on which one you have. This was so thought provoking and a little heart breaking as always. You are going blind, Susan, but may your light never leave you.
June 15, 2018 at 8:03 am
Yes, Yes, Yes!! You are lovely and wonderful and, as ever, you totally get it!!!!! We can feel for others and also for ourselves. Human beings are pretty remarkable if we allow ourselves to be!
June 18, 2018 at 2:45 pm
I somehow missed this one…
No, dear, you’re not selfish. I wouldn’t compare suffering. We all struggle one way or the other.
To quote Tolstoy: All happy families are alike; each unhappy family is unhappy in its own way.
This could be applied to individuals too.
I think you’re copying damn good, given the circumstances.
June 18, 2018 at 3:00 pm
Thank you, Gorgeous! I am completely with you, but always worry about not doing enough or thinking enough of others. I know that one’s suffering is one’s own and therefore the worst there is, but then we need to also look up and outward, to the suffering that exists outside of ourselves, to learn true compassion and gain perspective. Perhaps this is the human compromise. Something I think about, probably more than I should.
June 19, 2018 at 12:50 am
True. That’s what humanity is all about, without underestimating anybody’s plight.
June 24, 2018 at 1:26 pm
Lovely blog and many thanks for the follow. You are not selfish at all, but self-centered, something we all are as human beings because it is absolutely necessary for one’s own survival. In this sense, it is normal that you need to write about yourself and your own pain. Comparisons are hateful because the experience of pain is very personal. I think you are fighting the pain very well with this wonderful blog where I guess you find understanding as people are listening to your voice, but it is also pleasure and therapy. In this respect, I deeply encourage you to keep doing this. 🌈☀️😇
June 24, 2018 at 2:00 pm
Thank you so much! Thank you for reading and for the follow!
June 25, 2018 at 1:24 am
You are very welcome.