I read a post this morning from Sightless Musings, that hit me at my core. Please read it.
I was going to write about writing today, about feeling completely inarticulate, but after reading the above mentioned post, I changed course a bit. I am still feeling like a complete bumbler in regard to my writing, but I press on and tell this story (if you can call it that) anyway.
On Sunday, I spent time on a computer that isn’t mine, and therefore not set to my personal and necessary degrees of brightness, font size, etc. I usually take the time to change the settings on another person’s computer while I am using it, but I was feeling lazy on Sunday and knew I would be on the computer for only 30 minutes or so. I was also keen to complete the project I was working on and not really thinking about my eyes. This was my first mistake.
I most often wear a large brimmed hat when I go out, but I do have a couple of medium brim hats that I occasionally pull out of the hat box, usually on cloudier days. I would never be so remiss as to go out hatless, but I was determined to wear my purple medium brim hat on Sunday, and so convinced myself that the medium brim, in conjunction with my enormous sunglasses, would be more than sufficient to block my eyes from the sun. This was my second mistake.
I woke up yesterday, opened my eyes and felt as if someone had impaled them with barbed wire. Foolishly, I hoped the pain would subside and attempted to go about my usual morning routine. When I opened my laptop, the glare from the screen was so painful, my eyes teared up and began to ache, like they were being battered from the inside. I ignored it, or tried to, and read a few things, with my eyes squinted tightly against the light, but after a few minutes, knew I couldn’t continue. I felt like I had been sucker punched by RP, but in reality I was facing the consequences of my own actions.
It wasn’t the first time that I ended up with eyes so sore I couldn’t use them for an entire day. I know that even 10 minutes on a brightly lit computer, or just a few blasts from the sun beneath the brim of my hat and through the tops of my sunglasses, can leave me in immense pain. So why do I take the risks? Why do I put my eyes in jeopardy when the solutions are so simple and so readily at my disposal? Is it because I don’t want to be blind, to have RP? Or am I just lazy? Do I forget that I have RP, that I don’t see like other people, that just the smallest bit of light can steal an entire day from me? Am I hoping that just once, I can do simple things like other people?
It might sound crazy, but it is easy to forget that I am blind. I am really good at blending in. If you saw me on the street, you wouldn’t have any idea that I have a severe visual impairment. I am also making constant efforts to down play my blindness so others won’t feel uncomfortable or sorry for me. So, it isn’t really fair that I get pissed off when those close to me seem to forget my struggles, but it makes me angry, this self-inflicted suffering in silence. It is a constant teetering, a constant state of self-doubt.
On days like yesterday, I dive into dialogues with myself about how unfair it is that I have been chained to this disease. I put all of my feelings on display to give them attention and room to breathe. I want to tell people how much harder it is for me to do…..everything. So many freedoms have been stripped from me, so many choices I could have had, have dissolved into the hands of RP. I have been robbed of grace and fallen to the ground more times than I can count. It is exhausting trying to maneuver through life with eyes that don’t work right.
I suppose that some days, however childish it may seem, I fight RP by breaking the rules. I allow myself to forget that I am defective, broken, that my life is at the mercy of consequences delivered by the unforgiving hand of a mutation. I rebel against the reality of my blindness, allow myself to believe, for just a moment, that I am not so different after all.
November 13, 2018 at 10:11 am
I am really touched by this, and by your willingness to be open about your experience and your feelings. Somehow you fit humour in there with the sad parts as I do in my life as well, and it keeps things liveable, don’t you think? I am glad I found your blog
November 13, 2018 at 11:07 am
Thank you so much!!! And, yes, absolutely, humor makes things more livable. I have fallen down and skinned my knees and cracked up laughing, because sometimes, laugh is all you can do. I am so glad we found each others blogs. I have been enjoying your poetry!
November 13, 2018 at 10:13 am
makes my heart ache.
November 13, 2018 at 11:08 am
I am feeling much better today. You know all too well how it goes. Love to you, my friend!
November 13, 2018 at 10:38 am
Even before you said that you rebel against this reality, I was thinking it is the rebel in you that makes you take risks.
As every time, you have my love and thoughts.
November 13, 2018 at 11:11 am
Thank you, my friend! My love to you!
November 13, 2018 at 11:12 am
Got it!
November 13, 2018 at 11:15 am
I think you may be right!!!!! I was rebelling long before blindness!
November 13, 2018 at 11:17 am
I was sure you were!
November 13, 2018 at 10:48 am
I so empathize with you on some crucial points to losing your sight. My mom had macular degeneration and struggled with adapting to it. She constantly walked around on egg shells hoping that the day ahead would not take her sight. It is okay to not be okay with it. ❤
November 13, 2018 at 11:14 am
The journey of MD is so similar and you have seen it first hand; thank you for sharing that, and as ever, thank you for your support. You are wonderful!!!!
November 13, 2018 at 2:50 pm
❤❤❤❤
November 13, 2018 at 11:47 am
There’s no rule book that says you have to do this gracefully! My hope is that you don’t beat yourself up when you rebel or have days when you let it all out. I already see you have a kick ass sense of humor, which I love to see! Love to you, Susan. 💜
November 13, 2018 at 12:22 pm
Thank you so much, Angela. I am so lucky to have you in my corner!
November 13, 2018 at 12:30 pm
My pleasure!
November 13, 2018 at 12:29 pm
I was driving the other day and saw a woman at a bus stop in our area. While she didn’t look like you, she did have….the cane.
I hope you’ll appreciate the fact that I really, really wanted to stop and ask her if her’s was related to Zelda. I don’t think she would have gotten it.
November 13, 2018 at 12:40 pm
I Love that you wanted to ask her that!!!!! Thank you for making me smile, Sweet Wulf!!!!!
November 13, 2018 at 1:16 pm
Oh Susan, you are so incredible. I wish I could take that pain away—the physical pain, the psychological pain, the sun even. I’m so sorry for all you have to navigate and I’m amazed at how you do it. I’m so glad you shared all of this! ❤️❤️
November 13, 2018 at 3:19 pm
I hope you know how much your love and support mean to me. You know me better than most, and the fact that you are still in my corner, even after seeing the not so great stuff, is such a gift, Sarah. Love to you, my friend!
November 13, 2018 at 3:37 pm
I think you’re amazing, Susan. ❤️❤️❤️❤️❤️
November 13, 2018 at 4:44 pm
The feeling is mutual! Love you, BB!
November 13, 2018 at 3:26 pm
Susan, thank you for sharing your experiences and frustrations. You know what? I think you’re a very talented writer, as well as being someone who is incredibly generous with her enthusiasm for fellow writers. Thank you!
November 13, 2018 at 4:43 pm
Thank you! You are wonderful, Steven!!!! I think the same about you!
November 13, 2018 at 5:03 pm
I love you! I love your unapologetic fight to live your life as full & free as you can – despite the rotten card you were dealt.
I so wish I had super powers.
Your eyes would be perfect and you’d be at my table drinking Irish coffee before I zapped you back to the Hollywood Hills.
November 13, 2018 at 5:19 pm
I Love you, my sister!!!!! You have the super powers that count; the ones that come from the heart! You always get it!!!! And, yeah, some Irish coffee with you at your table sounds pretty perfect!
November 13, 2018 at 5:20 pm
I’m wiggling my nose, but nothing’s happening dammit. Did you get the email I sent you?
November 14, 2018 at 6:19 am
I think so, but I am so scattered lately…..which I am sure is clear by my writing. Will you please send it again? Thank you! xoxoxo
November 14, 2018 at 7:23 am
I did ❤️
November 14, 2018 at 7:33 am
Thank you!!!!!
November 13, 2018 at 7:38 pm
I got goosebumps reading this with your words hitting my core. Thank you for sharing your vulnerability and for being so open and brave. 💜
November 14, 2018 at 6:21 am
Thank you so much, Miriam!!!! You always bring such brightness into my day!!!
November 13, 2018 at 8:20 pm
Susan, I felt everything you mentioned! Please do wear your bigger rimmed hat! I never want you to experience that pain again! As much as I can relate to the rebel in you that wanted the purple hat! I want to protect you from the pain!
Thank you for being open about it all! Thank you for being so brave!
All my love.
November 14, 2018 at 6:22 am
Thank you Lovely Kat!!!!! I put the purple hat away and have only been wearing the big brimmed one since that day. I will just have to get a purple hat with a big brim!!!!
November 14, 2018 at 7:49 am
I’m glad you put the purple hat away Susan. I love the sound of a purple hat too! But safety from the sun first. I hope you find a gorgeous big brimmed purple one soon! I’ll be cheering you on in your search, until you find it!
For now, let’s have coffee and toast to another crazy day in this journey called life :)!
Hug…
November 14, 2018 at 11:01 am
Coffee is good!!!!!!!
November 14, 2018 at 1:44 am
This post just shows how human and how amazing you are, struggling to accept such a harsh and painful reality and its natural to rebel, to feel angry at times, to scream to cry whatever.. its powerful and courageous just to feel it. ❤ ❤ ❤
November 14, 2018 at 6:23 am
Thank you so much!!! You are wonderful to me and I am so grateful!!!
November 14, 2018 at 5:03 pm
Nothing less than you deserve, beautiful. ❤
November 14, 2018 at 3:07 am
I completely understand why you sometimes do what you do with the hat, glasses, etc.. It’s an act of defiance, giving the big middle finger to RP. It’s taking control of a situation that you normally have no control over, and an attempt at feeling “normal.” It’s why I often push myself more than I should with the MS. I may have some regrets later, when the aches and pains settle in, but that doesn’t prevent me from doing it again.
November 14, 2018 at 6:26 am
I knew you would completely get this, Steve! I think we both have a bit of a rebellious nature, and I personally wouldn’t have it any other way!!!!!
November 14, 2018 at 6:56 am
Hi, Susan. If I may…
RP IS A MOTHERFUCKER AND CAN FUCK RIGHT THE FUCK OFF.
Um, I know that probably didn’t make you feel any better but I had to get that out, and now, selfishly, I feel better. You are strong and determined and braver than most people. The way you face this is remarkable, and I know that I am not the only person you inspire. Love you!
November 14, 2018 at 7:00 am
I love your rant…..it makes me feel way fucking better!!!! And yes, RP can fuck right the fuck off!!!! I love you, Beautiful Lady!!!!!
November 14, 2018 at 6:58 am
Disability has a lot to do with relationships. Yes, crazy way of putting it.
You are in a relationship with this thing. Kind of like an arranged marriage. You and this damn thing have to see eye to eye. Yes, pun intended. If I can’t make you smile what good am I? 🙂
You know your limitations but that does not mean you have to stop living. You simply live in a different way. Many people would break if they were forced into your world but you don’t. Yes, you have your down days, who doesn’t….but you don’t stop.
Every now and than sit down with this damn thing and remind it whose boss. Sure, it’ll complain and gripe a bit but in the end it’ll realize you are right. You’re going to live your way not the other way around.
November 14, 2018 at 7:02 am
You have made me cry the good cry, Bryan!!!! Thank you for this! As ever, you give me new ways to look at things…and you make me smile!!!!
November 14, 2018 at 11:35 am
A good cry and a smile makes for a great day. You’re tough as nails, kid. Always remember that.
November 15, 2018 at 1:27 am
Am I hoping that just once, I can do simple things like other people?
Yes, and that’s perfectly human.
Love u.
November 15, 2018 at 7:06 am
Love you, Gorgeous Lady!!!
November 15, 2018 at 7:15 am
Love u too.
November 16, 2018 at 7:33 am
I applaud you, Susan! Fight, fight the dying of the light! All of us do things against our better natures, and our sensible approaches get discarded, even when we know it will hurt the next day. But, in the moment, we are invincible!
It’s okay to be invincible sometimes. It’s okay to pay the price for our daring. If we don’t, sometimes, just be a little footloose we would never learn to dance at all.
So, go ahead with your bad self! Wear that hat you want. Type through the glare. Don’t do it all the time, or even often, but on occasion … be a badass. You’ve earned it. 💪
November 16, 2018 at 10:56 am
I so adore you, Tom!!!!! Thank you!!!!
November 20, 2018 at 6:06 am
Ditto to all of the above. The way you are able to articulate feelings and experiences that are unique to you, to enable us all to understand is such a skill. You may have been dealt the mutation for RP, but you’ve also been dealt the most incredible talent for language. I love the rebel in you that says I’ll wear whatever fucking hat I want. I’ll try and negotiate for some of our UK cloud cover to come your way 😉
November 20, 2018 at 6:22 am
I totally adore you!!!! Thank you so much!
November 23, 2018 at 4:16 pm
You are not defective! You are not broken! These are my words, and as such, are beyond contestation! Hugs & Love dear friend 😊💛
November 25, 2018 at 6:17 am
I Love you my friend! Thank you!
November 25, 2018 at 6:38 am
You’re welcome! I love you too!💗
November 28, 2018 at 5:26 am
You explain the light so well. Control it, dim it, filter it, block it. It frustrates me that gentlemen’s hat are so restricted socially. There are very few styles with a wide, dark brim, and I can’t exactly wear my Epcot Flower and Garden hat to dinner. I hear you and understand. Thank you for sharing.
November 28, 2018 at 5:28 am
I should add that I did follow your link. It is a moving story with which I relate. I made a comment, but I’m not sure it posted.
November 28, 2018 at 6:05 am
I am so glad you read it, George! I do think it is relatable to so many of us with chronic illness, not just those in the VI community. She probably just has to approve your comment and then it will appear!
November 28, 2018 at 7:30 pm
I think it actually sent twice. lol
November 28, 2018 at 6:03 am
Thank you so much, George!!!! I think you should totally wear your Epcot Flower and Garden hat to dinner!!!!!!