I have updated the “Specific Info About My Vision” page on this blog. (Look to the right and click on the link.) There you will find my latest and greatest Visual Field results from January 2012, and can compare them with the results from 1995 and 2006.
If you have any questions about Retinitis Pigmentosa, or living with it, just let me know!
LuciWalks @ gmail.com
I had an appointment with my eye specialist yesterday, to see how things were going (progressing, deteriorating) with my Retinitis Pigmentosa. After 34 years of these types of appointments, I confess I went into it a little annoyed.
Annoyed at having RP. Annoyed that I have to take three hours of my day to sit in a doctor’s office. Annoyed that I have to have my eyes dilated. Annoyed that I have to sit through another Visual Field exam. Annoyed that after I told my doctor that I *have* noticed a difference in the narrowing of my peripheral vision, he responded with, “I supposed you *could* have noticed a difference, but I don’t see much of a change on your visual field results.” Ugh. Not *could*, doctor. *DO* – I *do* notice a difference.
Annoyed that my yearly Visual Field results are usually met with the same reaction – “Not much of a change.” Really? Not much of a change? Then how did I go from daylight driving 10 years ago to using a cane now? How did I go from trick-or-treating as a kid to dreading any dimly lit settings now?
They – the people in charge - only seem interested in the year-to-year charted differences on paper. While I, the 38-year old living, breathing woman, am only interested in how this is impacting my life. There’s a bit of a discord there, and it leaves me feeling a little… annoyed.
In the end, I do realize that it’s not the doctor’s fault that I’m annoyed. He’s just doing his job, and he’s actually a nice guy who will show you a magic trick if you ask (even if you are 38-years old). Everyone who works in that office is wonderful too, which I why I don’t mind going, because it’s actually kind of fun seeing all of them personally and saying hello. But I’m not there for a social visit.
And, in the end, I realize the “annoyance” I feel is a choice. I can choose to be annoyed by this, and many other unpleasant things in my life, but what’s the point? It usually takes me a day or two after the appointment to get over the negative feelings, but then I remember all of the blessings that have come from my vision loss. And that is what keeps me going, praise God.
Retinitis Pigmentosa sucks. It really sucks. There are some days where you just have to allow yourself to acknowledge that, and maybe even wallow in it for a day or two. But then you have a choice. Do you choose to continue to wallow? Or do you pick yourself up, dust yourself off, and remember how incredibly lucky you are that you can still see the magic tricks that come your way?
There are two things you should know about me, if you don’t already: 1) I Love Christmas and 2) I Love Movies! Therefore, you can imagine my unadulterated joy and squeals of glee when those two things come together in the form of Christmas Movies.
I have watched a fair number of Christmas movies, but a recent Google search of “best Christmas movies” lists revealed that I still have many to see. Therefore, I have decided to make my own list… a sort of compilation of all of the “best of” lists I have found, along with a few other of my holiday favorites that are more cheesy/sentimental than “good.” (If I have seen the movie, I have added some thoughts/notes to share why I have included it on the list.)
)What do you think? What is your favorite Christmas movie and why? What have I left off the list? I’d love to hear your suggestions!
Wishing you all a Merry Christmas!
Luci
Giving credit where credit is due, I pulled my list together with the help of these websites. (Their lists provided some of the titles above, but also include additional titles you may want to check out.):
http://blog.moviefone.com/2009/11/04/best-christmas-movies/
http://www.rottentomatoes.com/guides/best_christmas_movies/
http://www.empireonline.com/features/30-best-christmas-movies
http://www.bestromancemovies.com/top-romantic-christmas-movies.php
The other morning I was reading one of the “Girls Eat Potato Chips” books in the Bible. You know… Galatians (G – Girls), Ephesians (E – Eat), Philippians (P – Potato), Colossians (C – Chips)? (It’s the only way I can remember the order! )
I digress… So I was reading one of Paul’s letters and I was struck by how GODLY he was. I mean the guy just rocked the heck out of being a Christian. (After he finished persecuting them and was converted through his interaction with Jesus, that is.) And then I wondered… what would Paul think if he was with me, at my side, as I went about my day?
What would Paul think of the way I acted, talked, thought, etc.?? What would Paul say if he saw me walking by the homeless people as I walk to work? What would Paul think about my interactions with my coworkers? Do my thoughts and actions reflect Jesus’ command, “Love the Lord your God with all your heart, all your soul, all your strength, and all your mind.’ And, ‘Love your neighbor as yourself.”?
And then it hit me – Jesus. Not Paul.
It’s not Paul I should be thinking about, shadowing me as I go through my day. It’s Jesus. Jesus IS by my side. Every day. All the time.
Ugh. Jesus is with me – ALL the time.
I feel sick. I want to hide. He sees my ugliness. He sees my sin. What happens to “Love your neighbor” between my morning Bible reading, the walk to work, and the unexpected work “emergency”? I fall short every day.
Lord, forgive me. Please continue to give me opportunities to learn and try again. And please give me the wisdom to recognize the opportunities when they appear.
The last time I saw Claire was on a dusty road on Spain, somewhere between Cizur Menor and Puenta la Reina, on September 16, 2008.
We had walked together for a few days. and agreed to try and meet up again that night at an alburgue, but it never happened. Ann and I stayed at one place and Claire and her aunt stayed at another, and that was the last time we spoke… Until this past Saturday, May 28, 2011, when I bumped into her at a wedding in Ottawa, Ontario, Canada.
At the wedding reception, I saw a woman looking at me, and I could feel my wheels spinning as I struggled to grasp that my Camino friend Claire was standing right in front of me.
This was the first time I had been to Ottawa, and all weekend long little details of being in a foreign city kept reminding me of the Camino: unpacking my bag reminded me how we had to unpack and pack our backpacks every single day. Walking slowly through unfamiliar streets, trying to find a place to eat, and never planning more than a few hours in advance, were all daily occurrences on the Way of St. James. And then, topping off the weekend of Camino memories, was the sweet reunion with Claire.
As we caught up and reminisced, Claire asked me, “What did you learn on the Camino?” And I was surprised at how easily and quickly the response came to me. “God provides,” I said. I learned that God provides. Every day. In all ways. In vision loss, through depression, on the best of days and the worst of days, in moments of loss and in moments of fullness – God is there. He provides. He is sovereign. He is in control. It was the lesson I needed to learn, and God made sure I learned it over the course of 40-some days and 400-some miles.
I asked Claire the same question. She had her own, personal response. We both marveled at how the Camino continues to teach, even after two and a half years. And that sometimes it might take that long, or longer, just to learn its purpose in our lives.
If the Camino calls to you – Go. Claire and I only walked together for a few days off and on, but sometimes a few days is all you need to meet a new friend and know you will be able to reunite, and reminisce, and learn, again and again through the years.
”You love him even though you have never seen him.
Though you do not see him now, you trust him;
and you rejoice with a glorious, inexpressible joy.”
1 Peter 1:8
Wishing you all a Christmas season filled with glorious, inexpressible JOY.
Merry Christmas!
Luci
I am so unbelievably and madly in love with Jesus today, it’s not even funny.
Okay, well, maybe it’s a little funny because it’s probably not every day you read a sentence like that. But it’s true! There’s just no other way to say it. I am so amazed by him and love him so much, I had to write a blog about it.
Doesn’t his forgiveness and mercy and grace and love and sacrifice just blow you away sometimes?? Last Sunday, I heard a pastor say that there are times when he is so blown away by Jesus’ love that he imagines he’s like a kid who goes up to a fire hose to get a drink of water, and all of a sudden the fire fighters turn on the water full blast and the kid is blown completely back by the power of the water. He’s shot straight back, with his arms and legs dangling in front of him and a look of complete shock is on his face.
That is precisely how I feel today.
But that is not how I felt on Monday. Oh no. Monday was a humbling, tough day.
Last Monday, I was reminded of my humanness. Someone sat me down and explained to me that I wasn’t doing certain things well enough, and I needed to do better.
My first reaction upon hearing this was to be defensive. I wanted to yell, “I am too doing well enough!” I wanted to list all the things I did well and compare it to others. But, deep down, I knew that wasn’t the right thing to do. And, even more humbling, I knew this person spoke the truth. I really wasn’t doing well enough. I really did need to do better.
It took a few days for me to let go of my pride. During that time I tried to remain positive, but I struggled. You see, in recent months, I feel God has really been challenging me to “serve without complaint” and to be “joyful and flexible” in all things. This is something I struggle with on normal days, much less on days when I feel challenged.
But God’s mercy is limitless. He is gentle and kind and ever faithful. He knows when we struggle. He is ALWAYS there for us when we struggle. In addition to this steadfast love, he loves us in other ways as well. Specifically, God loves us so much that he will do what he can to improve us and make us the very best possible version of ourselves, so that we might better glorify him.
And that is what blows me away:
First, God created each of us, just as we are. (God created me and my super sensitive heart.)
Second, he loves us despite our weaknesses. (God loves me despite my unjustified pride and anger.)
Third, he loves us so much, he wants to improve us. Instead of giving up on us, he gives us new opportunities to try, try again. (God loves me so much that he wants to teach me how to live and serve without complaint, and, in love, he will continue to provide opportunities to learn this.)
Fourth, and most importantly, God loves us so much, he sacrificed his son for us, so that we might have a relationship with him, and have eternal life. (John 3:16)
Completely. Blown. Away. And totally in love with Jesus for his willingness to die for me, so that I might have eternal life. So that I might know Him. So that, in love, I might learn to be the best possible version of myself, and therefore better glorify the God who loves me so.
May we all go for a drink of water, and receive a fountain (or fire hose) of Jesus’ living water today. (John 4:4-14)
Blessings,
Luci
Ad for the Camino in downtown Chicago
I believe I actually exclaimed, “No Way!” – much to the amusement of those walking past – and then proceeded to take a picture.
Previously, I had written about the “Camino Memory Path” and how random things – sights, sounds, smells – can bring to mind a montage of Camino memories so piercing that it usually takes a deep breath and shake of the head to remember where I am, what I am doing, and where I am going. The above sign is an example of one of those triggers. For the briefest of moments, when I saw that scallop shell, I wasn’t in downtown Chicago. Rather, I was in Pamplona or Burgos or Leon, making my way through a city, guided only by the symbol of a thousand-year old pilgrimage.
It’s been a year and a half since I walked the Camino, and still it is with me. I can’t tell you how much I love that. I didn’t realize the Camino would turn out to be the long-term investment that it has, but it continues to give back: through confidence, through faith, and through countless memories.
I’ve been giving some thought to this blog.
With the end of the Camino, and the return to a full-time job, my blog has suffered from my lack of attention. But not lack of love.
I feel grateful for the memories and photos stored on these virtual pages. I love that on any given day, I can go to this website and click on a date from my pilgrimage and immediately be drawn right back onto the Camino path. In addition, I appreciate the outlet this blog has provided as I work through thoughts on faith, life, and vision loss.
Sometimes I wonder if it’s too much, having a blog that talks about such specific and different topics – the Camino, my faith, my vision loss, etc. – all in one place. Would it be better if to have separate blogs for each category, so that people who are interested in the Camino, for example, don’t have to weed through random posts on singleness or the Advent season to get the information they want?
Perhaps…
But, thinking it through, I realize that separating these posts into their own blogs wouldn’t be true to who I am, or how I process things. The fact is, all of these “topics” coexist within me, so why not have them coexist in one blog?
There’s probably a better way to organize it all, and maybe on some rainy day I’ll figure out a new set-up to help Camino people find Camino posts easily, while the Retinitis Pigmentosa people can go straight to my adventures with the cane. Or maybe readers don’t mind stumbling over one to get to the other, and I should just let it all grow together, like some wild and beautiful garden.
In the end, I think it’s safe to say that I’ll keep the blog. I like having it. My posts may be scattered, and it’s anyone’s guess which topic will plant and blossom next, but that’s okay. It’s mine. That’s who I am.
Thanks for reading.
I’ve been thinking about the Camino a lot.
I am tempted to say, it’s abnormal how much I’ve been thinking about the Camino, but since the Camino is kind of an abnormal undertaking to begin with, who can say if the amount of afterthought is normal or not.
The point is, I’ve been thinking about the Camino. A lot.
I was at work the other day and overheard someone speaking in French. It reminded me of this French woman who stayed at the same alburgue in Murias de Rechivalda, and how she would say “Bonjour” to everyone with this really guttural sound, like she was trying to clear her throat or something. Bon-JHOUR!
Which reminded me that the day we stayed at Murias de Rechivalda is the day I was really sick with stomach cramps and couldn’t walk because the pain was so bad. So we stopped at this bar, and the bartendar knew a German Reike master, who came and took me to her office, and she proceeded to do some reflexology on my feet, which was much more painful than I could ever have imagined. At last she declared that I was “empty of energy” and needed to sleep, preferably in the sun. So, Ann and I found a park bench and slept in the sun for an hour before deciding to stay in Murias de Rechivalda.
Which then reminded me of the other park benches and picnic tables that I utilized along the Camino for a quick naps and rest during the day, and then I rememberd the picnic area just past Logrono, next to a lake. Despite the multitude of people out and about, enjoying the beautiful day, I had no problem falling fast asleep on a picnic bench, boots and socks off, resting my warm feet and body on the cool stone beneath.
That was the same day we ended up in Navarette. Navarette was a killer because the city is built on top of a hill, so after 13 miles on one of the hottest days in September, we found ourselves looking up at the town where we wanted to stay, facing who knows how many stone steps and a steep hill. And then when we finally arrived at the alburgue, the owner showed us to our room, which was on the top floor. As Ann and I dragged our hot, tired bodies up the three flights of steps, the owner kept saying “Courage!”
Which makes me think of the phrase pilgrims sometimes say to each other, “Ultreya!” Which means, Courage! Specifically, I think it means “courage from God”, but I could be wrong. (Don’t tell me if I am wrong though, because I like to think that’s what it means.)
Ultreya! is what got me through my Camino. Ultreya! is what gets me through life, through faith, through all of my unknowns. Ultreya! is what I wish for every person reading this… for every person who needs to know that they can face whatever is in front of them. COURAGE FROM GOD!
…Anyway, as I said, I think about the Camino a lot. I don’t know if it’s normal. I don’t really care. I love that hearing someone speaking French can lead me down a path of memories and thoughts so beautiful and bittersweet that it takes a deep breath and a shake of the head to remember where I am… what I’m doing… where I’m going.
I had no idea that the Camino would continue to affect me so deeply, and in such random ways. It has almost become a game at this point, wondering what random word, or a vaguely familiar looking person or scene, might next propel me down the Camino Memory Path once again.
Don’t get me wrong… I’m thoroughly grateful for it. I love all the crazy memories that pop up, just because I’m holding something like a hard boiled egg in my hand. Boiled egg in Spanish is huevos duros, by the way, and it reminds me of the time I took a half dozen to a fancy hotel restaurant in the town of Castrojeriz and asked them if they would boil them for me while I ate dinner there………………….
But that’s a story for another time. For now, I’ll leave you with, ULTREYA! Whatever you are facing, whatever is weighing you down, may the Courage from God see you through.
Peace,
Luci
