Everyone falls. Everyone daydreams and falls into states of preoccupation, falls into the arms of another person, falls to the ground. Can you remember the last time you fell to the ground? I know it happens, but how often? Is it a story you tell about that one time you fell and were so fucking embarrassed? Or maybe you cried? Did you hurt yourself? Were you drunk? There is no judgement here. I have fallen and been embarrassed and cried and hurt myself, and yes, I have been falling down drunk. But, the falls that shake me the most, are the falls that can only be blamed on RP.
The last time I fell to the ground was 2 days ago. I wasn’t spaced out or preoccupied. I wasn’t in a new environment. I was dropped off in my usual spot, ready to navigate a curb I have encountered a thousand times. I thought I had mastered the terrain, but it must have been luck all along, because the curb came out of nowhere and sent me to the pavement. I don’t fall in slow motion. When I fall, it is an explosive second of pure noise that gives me no opportunity to think. It’s a sucker punch, a kick in the gut. Everything solid becomes weightless, and just as quickly, that breath of weightlessness becomes a slab of concrete waiting to crunch my bones.
When I hit the ground, I pause and always have the same thought, “not again, not fucking again”. I quickly check for points of pain or injury and then prepare myself for the kindness of strangers. Witnesses to the fall ask if I am ok, which I genuinely appreciate, and I ensure them that I am, sometimes making a joke about being clumsy, but all I want to do is get up and run away. I want to run away from the culprit, from the scene of the crime, from RP. I want it to be true that I am just clumsy rather than going blind.
This most recent fall was outside a hospital; a good place to fall I suppose, in case I really got hurt. I fell hard, but unlike Hollywood, the ground was smooth, so I didn’t come away with scraped hands and knees. I felt a bit banged up , but nothing catastrophic. A kind man helped me up, admiring my tattoos as he grabbed onto my wrist, and after thanking him profusely for his kindness, I walked away from the scene as quickly as possible, thanking a few other people who had come to make sure I was ok. I think it was the fall heard round the fucking world.
I found a quiet bench, sat down and inevitably, started to cry. I don’t cry because of the pain. I cry because of the reminder that I am different, broken, flawed. I cry because I am still trying to pretend that I am normally sighted, and every fall is like being shaken into a realm of existence that I don’t want to be in. I cry because Zelda (my cane) is in my bag and I know I wouldn’t have fallen if I had been using her. But, I am stubborn, or perhaps foolish.
I don’t want RP. I don’t want this disease that makes everything I do harder. I don’t want to have to use the cane. I am not ready to give up the fantasy of sight. I need to keep pretending, for just a little while longer.
August 18, 2018 at 8:33 am
Then you keep going, because you don’t give in and you’re very stubborn. And that’s ok!
August 18, 2018 at 9:03 am
I am so lucky you put up with me!!!! I would be lost without you my love!
August 18, 2018 at 9:06 am
You two are adorable.
August 18, 2018 at 9:08 am
He is a saint, B. I am a fucking pain in the ass. Ha!
August 18, 2018 at 9:14 am
Lol. I know the feeling.
August 18, 2018 at 11:07 am
You go, Joe!!!!!!!!!
August 18, 2018 at 8:44 am
I can’t pretend to know what you are going through Susan. I probably take my vision for granted.
I do know a little about battling a condition I don’t want and the hardest phase is acceptance. And only you can decide when you want to do it.
For now, may you get up stronger every time you fall
August 18, 2018 at 9:08 am
Thank you, Billy! I think that all of us who suffer from conditions that affect so much of our lives, have an understanding, even if the paths we are forced to take are different. I know you totally get it and I know how much you have struggled with your own health stuff. Sometimes, we all need to acknowledge how much it sucks.
August 18, 2018 at 9:07 am
nobody wants to be as they are
truly
i am awkward
clumsy
messy
and i hear about it every day
from me and him too
August 18, 2018 at 9:09 am
Curbs usually come out of nowhere. But you did get up.
In the meantime, Zelda will be patiently waiting for u to say I’m ready.
August 18, 2018 at 9:10 am
Thank you, Gorgeous!!!!
August 18, 2018 at 9:39 am
There are a lot of things I feel like saying to this but I will limit it to just one:
Fuck going blind.
August 18, 2018 at 9:47 am
That is the perfect thing to say!!!!!! Thank you!
August 18, 2018 at 9:45 am
Thanks for sharing this. Your courage and determination gives strength to others.
August 18, 2018 at 9:48 am
Thank you! I don’t always feel so courageous; sometimes just pissed off and defeated. I am seriously stubborn though.
August 18, 2018 at 9:52 am
That stubbornness is courage. An inspiration.to others.
August 18, 2018 at 1:16 pm
You are lovely! Thank you!
August 18, 2018 at 10:09 am
I could really relate to this one. I generally tend to bounce back up like I am on a trampoline then get out of Dodge ASAP. It’s funny the velocity behind each fall. I guess it’s because it is so unexpected that we have no time to buffer or brace ourselves. I have mastered the tuck and roll technique if I have enough time to realize what is happening
August 18, 2018 at 1:18 pm
I knew you would be able to relate to this one, Steve. I am going to have to practice my landings.
August 18, 2018 at 1:57 pm
They are hard to practice because the real ones happen so unexpectedly
August 18, 2018 at 1:59 pm
At least we are both good at the recovery!!!! And after I am done with the crying, I almost always laugh.
August 18, 2018 at 2:02 pm
I got more angry than anything else because when it does occur it is usually because I am not paying attention
August 18, 2018 at 2:01 pm
What helps me, believe it or not, is having been in my college’s modern dance group for 4 years. I did it primarily to,stay in shape for baseball and meet girls, but I also enjoyed it. I learned a lot about body mechanics, finding and keeping your center, in addition to hitting the ground softly
August 18, 2018 at 2:07 pm
You should seriously give lessons, Steve! I would take your class in a second!
August 20, 2018 at 4:55 am
where is the roster for this falling class? or the sign up sheet
August 18, 2018 at 11:08 am
You know how I feel about you. Don’t make me get the trout out!!!
August 18, 2018 at 1:19 pm
This made me laugh and feel so happy!! Thank you, Wulf!
August 18, 2018 at 1:51 pm
Tremble before the trout!!!
Ok so don’t tremble…but feel free to laugh and giggle.
August 18, 2018 at 1:57 pm
Laughing out loud!!!!
August 18, 2018 at 11:38 am
Oh my sweet, sweet Susan ❤️ I fall inside and out. More than I’d like. Neither is without humiliation or pain.
But the power I feel when I get back up? I’ve come to love far more than I hate the fall.
So fall I will if that’s what it takes for me to know the kindness of others and the depth of my strength.
You are a woman who’s strength I can’t possibly harness in words. It’s beyond my capabilities. Just know this – upright or sprawled out, YOU are fucking amazing and unbreakable.
August 18, 2018 at 1:24 pm
Thank you for this, my friend! I feel the exact same about you. I think about how brave and strong you are and it propels me to be braver.
August 18, 2018 at 1:26 pm
❤
August 18, 2018 at 4:31 pm
Fear of falling is my biggest fear. My knees have a tendency to buckle at times and I’m able to catch myself, but I know one day I won’t. It’s been 10 days since my cortisone injection and it is not helping at all. Hugs to you dear friend.
August 18, 2018 at 6:57 pm
They need to do the replacement Walt. You shouldn’t have to suffer anymore
August 18, 2018 at 7:49 pm
I know. I will call him next week and tell him its not working.
August 18, 2018 at 10:40 pm
Chin up, buttercup. ❤ I can't understand what it's like to have RP but you shouldn't be ashamed. If it makes you feel better, I trip & fall constantly & I don't have RP! Lol. I have bad vision in general but it's mostly because I'm clumsy!
August 19, 2018 at 6:49 am
Thank you, Sweet Lady!!!!!
August 19, 2018 at 2:07 am
Reading this allows me to acknowledge how insignificant my own problems are. You’re a brave soul, my friend.
August 19, 2018 at 6:54 am
Thank you, A.G.! I don’t feel so brave most of the time, but I appreciate you and your kindness. I wrote once about suffering and how the suffering we experience as individuals is always both the worst in the world (because we live in our own skins) and less than others. Our struggles are just different.
August 19, 2018 at 8:47 am
It’s like the song “I get knocked down, then I get up again…” It’s what you do, not just physically but in all of your self and I admire you so much for it. I fell really hard in Iceland a couple of years ago—it was a shock, and I cried, but people were so nice and helped me, as they most often do😊
August 19, 2018 at 9:00 am
Thank you!!! It is a total shock, but lovely to be reminded of the kindness of people! I hope you weren’t hurt and could enjoy your holiday.
August 19, 2018 at 9:04 am
Yeah, I got back up with some help! (I was recovering from a major surgery too, so it was extra painful!)
August 19, 2018 at 9:13 am
I am so sorry.
August 19, 2018 at 9:00 am
Now that song is in my head…….
August 19, 2018 at 9:04 am
😁
August 20, 2018 at 4:54 am
“I get knocked down, then I get up again…”… please tell me who sings that song… I have had it stuck in my head for months, and my google searches do not produce anything like the notes in my head…..
August 20, 2018 at 6:15 am
Ha! I am not sure I am spelling it right, but the band is Chumba Whumba.
August 20, 2018 at 8:21 am
Chumba Wumba—the song is called Tubthumping!
August 20, 2018 at 9:54 am
ty
August 20, 2018 at 9:57 am
Between you and Suzanne talking about this…..the song is going to be in my head for like a year.
August 20, 2018 at 10:05 am
its better than the barney song no?
August 20, 2018 at 10:11 am
Fuck Yes!!!!!
August 19, 2018 at 5:14 pm
It’s nice to read, that you don’t have a defeatist attitude.
August 19, 2018 at 7:23 pm
Thank you! My RP has definitely taught how to continually get back up.
August 20, 2018 at 4:59 am
I fall so frequently that I have just started announcing, ” and for my next trick”…. Pride will heal, ( trust me on this) I am glad you didn’t break anything and please remember, you DID get back up!
August 20, 2018 at 6:17 am
I actually think of you and Steve when I fall, Grace. I know that sounds strange, but I know that you guys also fall and get back up and keep going, and that is an inspiration to me.
August 20, 2018 at 9:54 am
actually it makes perfect sense! I swear after reading your post about using your other senses when you are walking, I have made a greater effort to be PRESENT when I walk. It’s hard to notice the things going on around me, when I watch the ground when I walk, but I have tried to go a little slower and pay more attention to my surroundings…it’s like you are whispering your post in my ear
August 20, 2018 at 9:57 am
I am thrilled that it stayed with you, Grace. It is the greatest compliment ever!!! Now I just need to practice what I preach. I fool myself so often with false belief of being normally sighted. I know it sounds nuts, obviously I know I can’t see like others, but I am damn good at pretending that I can. Being a person is really fucking hard sometimes. Are you seeing the surgeon today?
August 20, 2018 at 10:07 am
I did…. conflicting emotions… yah that they are doing surgery, but boo i wont be able to walk…add that to quitting smoking and someone might get hurt…writing about it now
August 20, 2018 at 10:12 am
Write it out Grace!!!!! I am glad they are going to do the surgery.
August 20, 2018 at 6:52 am
Susan, you’re thoughts and words fit together brilliantly!
August 20, 2018 at 9:49 am
Thank you!!!! I so appreciate your time and reading and your thoughtful comments!
August 20, 2018 at 9:51 am
My pleasure, Susan! Your pennings are a treasure trove for the mind.
August 20, 2018 at 9:53 am
I so needed this today, as my pen is feeling sluggish, my mind a bit scattered. I am trying to work on a collection, but encountering many road blocks, of my own design, of course. As writers, we get to do the most wonderful thing in the world, but also, at times, the most painful and difficult.
August 20, 2018 at 9:55 am
You’re welcome! And, so very true! Thank you for sharing your thoughts!
August 21, 2018 at 3:01 am
I suspect your mind went on to ‘autopilot’ as it was a much rehearsed routine, forgetting that it still needed to concentrate on the matter in hand! Falls can hurt your pride more than your bones, coupled with the shock, no wonder there were tears. My last fall was in the middle of a busy drugstore, on a holiday afternoon. I actually slipped on some spilt shampoo, but I went flying. Not only did I really hurt my ankle, everyone got to see what colour knickers I’d got on. You must get wildly angry with RP, keep getting up and keep laughing in its face. I’m going to share a link with you and apologies up front if I’m out of line or if I’m ignorant to whether this is inappropriate, but I follow a blog of a lady in the UK who has been blind from birth. For the last 18 months she has taken charge of a guide dog, so most of her blog is about the mischief he gets up to! But she has quite an interesting take on life, her blindness and how it affects her. Wondered if you might find it interesting or supportive. It’s often hilarious so I recommend her just for that 😉 Gosh, that all sounded a bit patronising. I’ll just go give myself a talking to…….
https://thesecretblind.wordpress.com/ Her name’s Zena 🙂
August 21, 2018 at 6:09 am
Thank you! You are, as ever, Wonderful! I also follow her blog! I am behind on it however, so I appreciate the reminder. She is terrific!
August 21, 2018 at 8:33 pm
I admire your strength to keep pushing through it – tears and all! You have great support between Joe and Zelda, she will always be there for you too, when you let her 🙂 XOXO
August 22, 2018 at 6:02 am
Thank you!!! I can’t wait to see you!
August 22, 2018 at 5:54 pm
I don’t pretend to know how you feel…life without sight would be terrifying for me. I do relate, however, to the helplessness; the inability to stop the process. My problem is simply dealing with getting old and closer to my last days. I get angry at the deterioration and the dwindling of dignity. I admire your strength, tenacity and courage of expression. Well done.
August 23, 2018 at 6:03 am
Thank you so much, Dorianna. I think the ways you are feeling about getting old are so very much like the feelings I have regarding my sight loss. It is hard not to get angry about what is taken away, the freedoms and yes, dignity. Even with all of the differences, the paths are so similar. Thank you so much for taking the time to read and comment!
August 23, 2018 at 9:16 pm
It was my pleasure…you are very welcome.
August 23, 2018 at 6:07 am
I just read your poem about time…..oh my god, it is good. I commented, but not sure if it went through. I am so happy to have found your words.
August 23, 2018 at 9:15 pm
Yes, thank you so much for visiting.
August 23, 2018 at 6:35 am
It is very difficult to accept something which we do not want. But please don’t think of yourself as flawed. No one is. Others may think so but we never should. Take care and all the best.
August 23, 2018 at 6:54 am
Lakshmi, this brings tears to my eyes. You have the most beautiful heart and I know, also, an understanding of my particularly journey. Thank you for your compassion and care.
August 30, 2018 at 12:53 pm
Every time I read you here, I am moved by your transparency. Your sharing is going to help someone, if it hasn’t already. That makes you a hero.
I can’t relate yet to going blind, but I can relate to pretending. As long as I can get away with it.
Allbest to you, I’ll be praying for you and for soft landings.
–Rose
August 30, 2018 at 3:42 pm
Oh my, you are so lovely! Thank you very much, Rose!!!! This has made a difficult day much brighter!
September 23, 2018 at 4:20 pm
I can relate! I hate the fact that I am slowly losing my sight (RP as well), and hate the fact I have to depend on others to drive me around (I used to drive once upon a time), and hate, HATE that at times I do stumble and fall. To do in private I can handle; but, in public? Oh man, I’d get so pissed off at myself for being so clumsy and damaged and broken and imperfect. And when people are being extra kind and helpful sometimes make me even angrier (though not always). It sucks, it really does. But, slowly I have come to accept the reality of blindness, and learned to try and improvise and adapt…still, some days, I still get angry. So, I’m sending you HUGS in hope of brightening your day just a little bit, and to let you know that you are not alone.
September 24, 2018 at 7:11 am
Carrie Ann, I know that you totally get it….and then some. I sometimes feel like it is so hard for people to understand what we go though; there is nothing predictable or capturable about it (I think I just made up a word, but I am good with that). I know you are in a rough patch right now and I am sending hugs and love and healing your way. Thank you for reaching out to me!