What I Learned from a Dog

After our 15 year old dog died peacefully in her sleep, we consoled each other with these common words, “she had a good, long life”. The same words we uttered last year when our 20 year old cat left this world. And it made me think about what metric we used to assess that life-- what made it good. 

Longevity is obvious. They lived past their expected life spans. So having time to live a life is important. But what made it a good life? Can’t we argue that loved and cared for pets all live a relatively good life? And in turn they make our lives good in the joy they bring through their love. Good is just that simple for them. And maybe it is also that simple for us. 

In the end what will it take for someone to say, when my soul leaves this earth, that I had a good life. Can it be that what matters in that assessment is only two things; that I was loved unconditionally and that I loved others unconditionally. And through that love, brought happiness to at least one person’s life. 

And if that is so, then all the failures, constraints, and hurts of this life, the ones that seem to erode my soul, are not at all important. What is important in having a good life is to love well and be loved well. And that is a freeing notion. Because that, we can all do. 

The Adventures of the BLOVI Girl: Things I learned in a tent at a beer festival in the rain

The Adventures of the BLOVI Girl: Things I learned in a tent at a beer festival in the rain

I planned a weekend trip with my life partner to one of my favorite places-Asheville, NC. And we stayed in my favorite district (Montford) in a Victorian B&B. A few days before the trip I decided to look at events going on in Asheville that weekend and happened upon many. But the one event we wanted to attend was Brew Grass—a bluegrass and beer festival. By the time we went online to purchase the tickets there were 6 left and we snagged them and congratulated ourselves. Little did we know we happened upon a late release of extra tickets in a many months sold out beer event that is the third best beer tasting in the whole US. We found that out after we got to the event. And there, amongst the heavily drinking and soaking wet crowd (it rained steadily and sometimes heavily the entire day) I learned a lot of interesting things. Those are the focus of this blog.

An important point to the story is our discovery of a singular tent amongst all the vendor tents that was empty. We took up residence in this tent and ventured out and back to sample our beer choices. In those hours in that tent watching the rest of the crowd get soaked and buzzed, we became family of sorts. Sharing stories and vowing to return again next year to be reunited. The people in that tent were varied in age, background and place of origin. And this being my first ever beer festival, I learned many things I just never knew before. Here is a short list.

You should pace yourself and sip the beer and not just guzzle it to get to the next one: There is a reason you only get a 6 ounce glass. I found that out quickly. I am really not a drinker, just a fan of craft beers. So I was ready to taste lots of stuff. And there was no reason to waste time on anything not high gravity (meaning high alcohol by volume). And I also go for trappist, porters and stouts so they are heavy. I downed my samples rather rapidly so as to get to the next. I noticed then that my man was really sipping his and savoring his samples for a while before sampling another. “You need to pace yourself”, he said, “You are going to be out before you taste a lot of beer.” So my new tactic was if I did not like the beer, I just poured it out. I saw others doing this and assumed I was not offending the beer gods.

People at a beer festival really can’t remember what they are drinking: I would see someone drinking something dark and ask, “Do you like that?” To which they would say, “Yes, it is really good.” “What is it?” I would ask. “Hell, I have no clue what this is or what it is called.” Then I would ask what brewery tent it was at. “I have no clue, it was kind of over there.” And they would point in a general direction. After a few samples I had no clue watt I was drinking either. So I am not sure how the vendors get their product out there or have people ask for a particular beer. I do remember the best things I drank; some aged in a scotch barrel for lots of year thing called something like Hooligan, the barley wine which I have now named BW10.8 and some pecan brown sweet kind of beer. I have no clue who brewed them, just the general location of the tent so I could possibly get some more.


Drunken people are impervious to rain: It was raining all day and yet the place was packed with people. Some in rain gear and some not. There was one guy who was charging a buck a piece for the large black lawn bags which we all called body condoms. My man decided to wear one, as did many others who did not bring protection. No one seemed to care that they were wet. Good beer and plenty of it means you are impervious to all weather conditions.

It is prudent to wear a pretzel necklace to a beer festival: Everyone knows to get a good base before you enter the festival. We ate hamburgers and onion rings. But inside the festival there was very little food, so many had resorted to wearing pretzel necklaces. These are just your ordinary pretzels placed on a string and worn around the neck. Many beers into to festival I decided to take up a tent dweller on the offer to eat pretzels off of his necklace, I did not know where they had come from or what they had been through. But at that point I did not care. I also ate some definitely fresher tasting pretzels from an older gentleman who had the good sense to place his in a plastic bag. The next morning at the B&B when I was telling the story of how I ate this guy’s pretzel and that guy's pretzel, another guest said, “Hey it’s way too early for those stories.”

Barley wine is very, very good and very high grav: How we found that empty tent started with us finding the barley wine. The guy announces the barley wine is 10.8 grav so we say yes please and hold out our glasses. The tent is next to the barley wine, which goes down smoothly. And if I reach my arm out the guy can just place more barley wine in my glass without me even having to move. And after two barley wines which were like samples four or five of the day I realize if I reach my arm out anymore I may fall over. Luckily, at least for me, they run out,

Never ever tell people about the tent you have discovered: Our tent was very exclusive. Once we found it and others did too, about a core group of 10 to 15 inhabited it and gravitated around it, venturing out and back. One guy was with a group of 8 others and said, “I did not tell them about this place so they are out there in the rain.” He did not show any remorse for this and one of those people was his wife. “There are just too many of them, it would get crowded”, he said. So the tent became a secret and soon we had decided that the one older man who grew hops was obviously the owner of the tent. We told people to pay him and he would hold out his hat. We also told people that we had exceeded the maximum amount of people allowed under the tent. And it worked to keep our tent family intact.

Two rugby players can throw a 140 pound woman over a fence: At some point, when sampling many 6 ounce glasses of beer, absorbing it with pretzels will fail. And a bathroom visit will be necessary. This is scary. The line was long, so we had a strategy to fan out way left as there were at least 50 units and many were crowding the center. I felt like we were calling a play on the football field. In that process of fanning out we waded through huge deep piles of mud. But I was only second in line so got n and out quickly. While in line I pointed out to the men that this experience was WAY worse for women and thank god I could hover. Which led to a conversation about the use of hovering muscles which was suggested would also be a good name for a band. So if I ever have a band we will be the called “Hovering Muscles.” After hovering and once again being grateful for being visually impaired in this situation, we decided there was no way we were trudging back through the mud. My man decided we were going over a fence and it would be oh so easy. But I had on square toed boots that would not fit the holes to gain traction. At which point, out if the blue, this guy yells “I am a rugby player- I can throw her over.” Then my football, track star, and rugby player back in the day man says “I am a rugby player too” and they proceed to throw me over the fence. On the other side of the fence there is a young woman with an umbrella to whom I say “You are going to catch me.” And she just runs away. I was hoisted and tried to straddle the fence going over which was not a good idea. But I managed to get over and down and stay upright. Then of course my man basically just hops over the fence like he is hurdling. And then there is some conversation about rugby which is brief and ends with “Yeah, we could talk more about this”, but there was beer drinking to do.

Washington State is super liberal. A wonderful place where there is legal marijuana, euthanasia and gay marriage. But, according to the couple we met from there, it is really hard to have death with dignity. You just can’t find the doctors to do it. Some people they knew had tried it or had family members that they wanted to euthanize just could not find anyone to assist them. On the bright side legalizing and taxing pot will bring 400 million to the state in infrastructure and education. And they have all but eradicated the pot trade outside of the legalized system. How they did that seemed to be a secret. All we could get was, “Oh man that just does not happen anymore.”


When there is bluegrass, hippies and rain there will be a mud melee of some sort. The rain was useful for many things. Rain off umbrellas can clean out your beer glass. If you are really soaked no one can tell you may have pee'd your pants. And rain creates lots of mud. And eventually people enjoy flopping in mud. I mean mud wrestling is a popular sport, right? So there was a huge mud pit being formed in front of the stage. And at some point a woman takes off most of her clothes (isn’t that how they all start?) and others join in. And there is a huge mud mosh pit. This was bound to happen, truly inevitable.

People in Asheville do not wear camo rain gear: With all the people in rain gear we only saw one other person in rain gear that was camouflage. And yes the other one was my deer hunting man. He seemed baffled as to why there was no camo rain gear because you always have that if you hunt. “In South Carolina there would be tons of people in camo rain gear,” he says. Then he asks me if I want to wear it. “Hell no, there is no way I am going to make people think I hunt. People here do not do that. They don’t even eat meat. Why in the hell would they have camo?” When we finally saw the one other person wearing camo, my man says, “I feel I should go up and talk to him like we are kindred spirits.”

Caribbean food is great at the end of a beer festival when you are soaked: The night before the festival we tried to eat at a highly recommended place called 9 Mile and the wait was an hour. So after four hours of beer sampling and shooting the sh*t, we decided to walk a mile back to the car and get that hot spicy food to warm us up. We got there right before the lines started, sat down and ate some of the best food ever. Maybe it was the best because I had many beers, or because I was soaked and cold. But it was a perfect way to end our day.

So Brew Grass will become a yearly event for us. And maybe we will reunite with our tent family as we promised to do. And luckily we found a connection for tickets. So next year we will use the guy whose son in law is second in charge to score free tickets and have a pre-screen of the beers. And they promised us it would be a sunny day.

The BLOVI Girl’s Guide to Faking It (for those of us who can’t see crap): Volume 3-Reading for Enjoyment

The BLOVI Girl’s Guide to Faking It (for those of us who can’t see crap): Volume 3-Reading for Enjoyment

I am an avid reader and always have been. Before the accident I was a late adopter to the whole e-reader thing. I just loved to hold a book in my hand and turn pages. I was also a person who loved to own the books so I could read then at my pace and again and again. That all changed when I could no longer see to read. And luckily the dawn of the digital reading age helped out with that. In this blog I focus on ways to read when you can’t see printed material.

Free books for the blind and visually impaired: There is a service called Talking Books that I accessed through the SC State Library. In 2010 I received the new on the market digital player for the blind, but most impressive was the massive yellow tape player. That’s right; I am referring to the cassette tapes of my youth. Those wonderful things that melted in your car, got stuck in the player and had you trying in vain to role the tape back in or replace the casing so that you did not have to buy INXS’s The Swing for the fourth time. Not to mention the superior sound quality. I think those have been phased out. Talking books now also has a service where you can download free books, much like the system at the local libraries. They come out with catalogs of the holdings except that those catalogues are in 10 font and of course I can’t read them. Seems strange this would be delivered in hard copy. But stranger things have happened.

There is also a website you can access of you are visually impaired where you can download books for free. There is a yearly fee that is absurdly reasonable. The site is called Bookshare and there is quite a large catalogue available. Note that when you download anything you have to use a zoom function or have a built-in reader like on Apple products or software like Zoomtext to make downloaded documents work.

I also began my visually impaired days checking out audiobook’s on CD. I had to wait weeks to get anything that was relatively new and found that trying to keep the multiple CD’s in order was frustrating. Now libraries have online downloads and the digital books you can check out. If they would have made the buttons a little bigger and color coded they would have worked for me, but they don’t. However, they are big enough to work for those of you who just need magnification.

E-Readers or whatever they are now called: Months after the accident I was beginning to get tired of audiobooks with their multiple CD’s that I was constantly getting out of order and losing. I had stopped buying CD’s years ago when I switched like everyone else to the IPod and digital downloads. Then a miracle happened that was called the second version of the Kindle which was able to read aloud to you. After months of suffering through long waiting lists to get not even the most recent audiobooks, paying through the nose to get the CD’s or having to put the laptop in my bed next to me to listen to books I had downloaded, I finally had an option that was more portable where I could get the newest releases.

I have burned through three Kindles as I am reading (listening to) at least one book or maybe two every day. I broke the screens on the first two long before they died when I rolled over on them after falling asleep listening. But since I am not using the screen I could care less. The screen, however, does zoom up, so if you need less magnification than I do, which is anything under 6X, you can read without text to voice. Just note that your finger may be permanently damaged by how many times you will have to forward the page. For me, the switch from holding a book and turning the pages and reading at my own pace to being read to was difficult at first. And the adjustment to the computer voice was also a little jarring. Because I read really fast I had the Kindle talking at breakneck speed which works find for fiction but was not as good when reading a book on neuroscience. I had to keep stopping and going, what the hell was that. Then Amazon bought Audible, a main website for downloading audiobooks. This meant two things. One was that text to speech function was no longer available for books that were on audiobook, so you are somewhat forced into the audiobook version. Older titles sometimes have text to speech enabled but sometimes do not. The problem with audiobooks, as you all know, is if the reader’s voice annoys you it just ruins the book. And now there is no way to switch to the sometimes less annoying voice of my computer man. Second, when getting my third Kindle basic version (since I can't use a touch screen) I learned they took out the voice over function on the unit This meant if I could not get an audiobook format through Audible I was screwed. So, if you need text to voice, which you will if you can’t get the font big enough in the screen, you must go and find what is now called a Kindle Keyboard. You can find them on Amazon or EBay. Of course if you have an IPad thee is a zoom function as well as a text to voice function built in. And I am clueless about the Nook because I chose Kindle and I have this thing about brand loyalty.

Reading Glasses: Everyone knows you can go and get some cheap readers that magnify up to 3X in any local drugstore. But know that there are magnifiers available that are much stronger when you need them. I have been through three pair of magnifier glasses so that I could make an attempt to read in public. I started with 10X and thought those were the most powerful you could get. But I could only read 16 font and not easily. Guess what--nothing is in 16 font. So I went back to my low vision doctor and he came out of his mysterious back room filled with goodies with a pair of 14X glasses. They were really hideous but I could care less, they were in my hands and I could read 12 font on a good sight day. I used these for a while and realized that I could only see the 12 font if it was bold and not in cursive and not at all in dark restaurants, so I went back again to get more powerful ones. Again he goes in the mysterious backroom of low vision goodies and comes out with a pair of 16X magnifiers and a pin light you attached to the glasses to read when there is less light. The transition from getting fed up with the 10X, and then 14< and to the now functional 16X took almost two years. And I always ask myself, why did I not ask for a light sooner because with the light and the 16 X I can read almost any menu or document in any light. What happened was necessity dictates something more useful. You adapt to what you have and don't know there is any other option until you get to a point where it is really screwing up your life and you look for a better option.

And that is what you will do when your eyesight begins to change. You will look for different options. Hopefully, now that you know what is out there, you will adapt faster and continue reading. And speaking of different options and adapting, I have decided, starting next week, to make this a video blog. This will make it easier for those who can’t see so well and I can show you all my nifty tricks and gadgets.

Keep Moving Forward,
Beth (BLOVI) Medlock

The BLOVI Girl’s Guide to Faking It (for those who can’t see sh*t)-Volume Two: Using Technology

The BLOVI Girl’s Guide for those Who Can’t See Shit-Volume Two: Using Technology

One of the biggest adjustments I had to make as a visually impaired person was in using technology. Things like computers, phones, my IPod and TV. The devices I had as a sighted person no longer worked. So I had to find things that would allow me to use the technology I needed for both work and entertainment. Reading books is a separate issue I will address in a later blog.

Cell Phone: I opted to go back to a basic flip phone that talks all the menus out loud. But for those of you who just need magnification there are smart phone options. IPhone’s can zoom up in size and also have a voice over function where everything on the screen can be read aloud to you. SIRI also allows you to give voice commands that bypass the need to see all the tiny things on the screen. Other phones now have larger screens and some zoom functions. There is also a magnifier you can place over your phone screen. For me, the text could not zoom up enough, the learning curve in voice over on IPhone was too steep, and SIRI just could not seem to understand me. So I went old school and I love my basic flip phone, the Samsung Haven. I have had the phone for almost three years and have dropped it at least 100 times and it still works. Because of this, Samsung no longer makes the Haven because as you know, your phones are supposed to self-destruct right about the two year mark when you are eligible for the upgrade. But there is a similar phone that does the same thing, although I am certain it is not as impervious to destruction. All the menus have voice. It tells me who is calling, so I do not have to have person specific ringtones. It also reads text messages out loud, which is sometimes dicey when messages are inappropriate. It tells me what I am typing so I can text. It also has places to store emergency contacts and medical information.

Computer: When I had the accident I had a 15” laptop and I could not see anything on the screen or the keyboard. What I now use is a laptop with a 17” screen that is hooked up to a 27” monitor. When you need large text, screen size matters. A larger monitor is key to being able to see as is the type of monitor. LCD’s are good and of course the new Retina displays are better. What you may not realize is that it is the glare that makes a big impact in how well you see the screen and how tired your eyes are getting. So, what you need to do is turn down the brightness on your screen and increase the contrast. There are also self-adhesive glare reducers you can place on your monitor, kind of like car window tinting. You can also make any content on your computer screen bigger. The Windows and Apple platforms all have zoom functions. Apple can zoom larger than Windows, so if you are a Windows user and need more than 2,5X magnification, there is a program called ZoomText. I use ZoomText in 8 or 7X and you can set it up to where it also reads aloud. It talks while I am typing and reads a document when I am tired. You can also make it say nasty things in funny accents and computer voices, always a plus. If you can no longer see the keys on your keyboard, and like me, never really learned to type, there are keyboards with larger characters available. My keyboard with large letters allowed me to go back to my super-fast four finger hunt and peck method.

Document Reading: I have a machine called the Acrobat that has a screen and a camera that makes everything bigger and also changes the colors. Low vision people like me read best with white text on a black background. Some prefer white or black text on a yellow background. It depends on each user, but the black on white contrast is usually not best for when you don’t see so well. I use the camera to read my mail, labels, letters, my child’s homework and short documents. I have also used it to blow up my hands to see my nails so I could paint them. And I have turned it on my face to check my grooming, which was a horrible mistake. I am always looking for unconventional ways to use the equipment.

TV/Movie Watching: When your vision is not so great for distance and for those with macular degeneration, TV watching becomes harder. You can see the general theme without the detail and nuances. For those of us with retinal issues the size of the TV screen does not matter much, but the distance to the screen does. For me I would have to literally sit directly in front if the TV almost with my nose touching it to see any detail. And that TV is hot and my eyes get tired-- it is really uncomfortable. So you need devices that bring the TV screen right up to you. These are distance magnifiers or really binoculars. I have telescopic spectacles. Imagine wearing mini telescopes attached to glasses sitting way out on your nose. The low vision specialist said they were for working on the computer or watching TV and that I should not wear them out. No problem there. I do use them to watch shows in which the visual aspect of the program is imperative to enhance the overall theme and tone. And this translates into hot guys scantily clad. But those telescopes weigh like ten pounds and I can only endure them for about an hour at a time, propping up my head for support and removing them during commercials. Now they have these really cool lightweight glare reducing magnifiers for distance. Mine are called MaxEvent. They still look a little crazy because they have a double lens thing and they don’t have the same magnification power, but I can wear them all the time. They will cost you about $200, but they are worth it for not only watching television and movies, but also for plays and other events.

Assistance on the Go: Hand held magnifiers can be a great tool to see things quickly. I a small lightweight hand held basic magnifier with a built in light. I use it all the time to read things like the labels on my electrical box or the settings on the thermostats. I also have a hand held computer magnifier that can be laid over any text and the zoom and contrast can be adjusted just like the Acrobat camera. Mine is called the Pebble, but there are many versions of hand held computer magnifiers. Some can even take a picture of a document and then read it to you.

In sum, there is a whole range of devices that you can use to improve your vision. The truth is that they can be expensive. But I have found they are sometimes necessary. New devices and technology are always available. Check sites like Maxiaids for the latest and greatest toys for the visually impaired.

Keep Moving Forward,
Beth (BLOVI) Medlock

The BLOVI Girl’s Guide to Faking It- For those who can’t see shit-Volume 1: Faking it in Restaurants

For slightly over three years I have been visually impaired. And in that time I have learned to use tools, tips and tricks to blend in with the sighted world. Most people who don't know I can’t really see shit have no way of telling. I am a master at the art of deception, subterfuge and a little distraction. I decided to change my Blog format from writing about my own shenanigans to helping you people who also can't see so well. And that, from what I have seen is a lot of you. With the baby boomers and their progressively stronger reading glasses and bifocals to those with macular degeneration to the younger generation whose eyes are being stressed by looking at really small screens, we are a nation of people who don’t see so well. I have seen you in restaurants and stores and other places saying things like. “I can’t see that, I forgot my glasses” or “I did not see that curb” or “hell, I didn’t even see that.”


I have a 7.5 going on 20 year old who keeps me in check with how I look smell and act. But unless you want to borrow her (and you can for a while) and also have her tell you she won’t read things to you, you need some other tools to help you get by. So every week I will share my secrets with you. From navigating on dark streets or in dark venues, ordering in restaurants, grooming and styling to organizing your house. I may even share with you how not to accidentally date someone who is not really good looking. My hope is that my tips will be useful or at least humorous.


This week I focus on a common dilemma of not being able to read the menu in a restaurant. Many restaurants are dark, so that you cannot really see what you are eating, or maybe it is ambiance. And the menus are in small font or some fancy font or worse yet, cursive. Cursive is not a friend to those of us with crappy vision. And you probably, again, forgot your reading glasses. Or you are just too damn stubborn and in denial to realize you need more magnification. And you are using the glasses that stopped being able to assist you in reading tiny font in dark places about 6 months ago. So what do you do now?


First, if you know where you will be dining, or even if it is either one place or another, go online before you leave and look at the menu. Many if not most restaurants have their menus online. Then you can study it and pick out what you will eat in advance. And of course you know both Apple and Windows have built in ways to make your display bigger so you can see your computer. I will cover that in a later blog.


If you end up at a place where you did not see the menus and you have either forgotten your glasses or just can’t really see because there isn’t enough light, then you go into cunning ways to have people tell you what is on the menu. Or you can use a pin light. There are those that attach to glasses or those you can hold. I don't use these because one, they don’t fit m my purse, and two, they are really a giveaway I can’t see shit. If you don’t mind looking odd, or blind, then by all means break out that light.


In these situations the wait staff and your tablemates are your allies. One thing I do not do is have anyone read the menu to me, even if it is a close friend. They don’t want to do it and it takes up too much time. It also makes me feel like a preschooler. So, first if there are specials make sure to ask about them and have the wait person describe them to you. Then ask your wait person what are their favorite items on the menu and why, or what do people order the most. Then pretend to be reading the menu and ask others what they are getting. By this time you should have something from which to choose.


Also, let’s say you want something like crab dip, but don’t know if they have it. You can say “I really wish they had some crab dip.” Others who can actually see the menu (and really, you must have at least one normally sighted person at the table) will say, “I saw that-- it is an appetizer.” Then you look at the menu and say, “Oh, I was scanning through it so quickly I did not see that.”


If you are a woman out on a date you can totally get away with not being able to see the menu by telling your date what you like and asking them to make suggestions or order for you. This makes them feel like a man and then they are also more inclined to pay, as they should.


When ordering you can always ask about what are the side items and what types of dressings are available. No one actually pays attention to that ad the wait staff are commonly asked to repeat these. And when it comes to drinks order water or tea or a beer that everyone has. Like Beast Light. Or again, ask the wait staff or bartender what they like best on tap or in a red wine or what are the best porters and scouts, for example. You can also let another person at the table be in charge of the wine list and ordering the wine.


And you can always, always send things back that you do not like. For example, I am a huge fan of the iceberg lettuce wedge salad. But I often forget that many places put bacon on it, which I do not eat. If it comes out with bacon I say, “On no I forgot to ask you to hold the bacon, I am a vegetarian. After I look moderately disgusted, they take it away. I have sent other things back that have ingredients I just do not like, for example cilantro, and said, “Oh no. I am allergic to cilantro. And they take it right back. Or you can just say it was not what you expected or you don’t really like it and every time they should take it away and you can start over. By this time others are eating and most likely someone is eating something that looks good, or you had a second choice on the menu you now will try. You are the customer, so you are always right.


Another sticking point is not being able to see the bill when it comes. I will admit that if I am with a close friend I have them red me the total. I have handed it over to someone else and said, “Does that look right to you?” And most of the time they will say the total. Sometimes you can also do that with wait staff. Say, Is this the correct total?” and have them read it. The tip line is always under the total and then you just calculate the tip and total it by visualizing in your head. The signature line is most always an inch from the bottom of the strip and is longer than any other line on the receipt. And I have found you can sign anywhere near it and be OK.


Prices are a different issue. You can always ask the prices of the specials and that will give you a gage to the overall menus prices. Some menus have things in order from least to most expensive. Once you go to a restaurant you will get a sense of pricing. And once you know a restaurant and what you like you can go back there and order with confidence. When you can’t see shit sometimes it is good to stick with a range of restaurants and menus you know and like. But, hopefully, with thee tips I have shared you will be able to venture into foreign restaurant territory.


Keep Moving Forward,
Beth (BLOVI) Medlock

July 25, 2013-Volume 89: Three Years Post Accident: Getting Back to Center Without Central Vision

The Adventures of the BLOVI Girl-Volume 89: Three Years Post Accident: Getting Back to Center Without Central Vision

Last year, on the two year anniversary of my accident, I ended the blog to write a book. I wrote that book---38 chapters and 315 pages.  Now, at three years after the accident, I am in the final stages of editing, ready for it to be placed out in the world. In my writing I purged, processed and pontificated about the process I went through to adapt. And now I have come out the other side of transition. I am what I am, it is what it is. I took myself out of the game to dance on the periphery so that I could transition, adapt and grow. And to have the time and space to do the work I was doing emotionally and creatively. It is time for me to get back in the game, to share, to reconnect, to move back into the center of the action.

Things are in what I call the steady state of life. There has been a settling down. Life lived in the moment. Life that has had challenges. The learning curve for adapting to being visually impaired has flattened out. Like when you come out of the drop on a roller coaster and it’s just speed on the flats with a few turns. It’s not like I have figured everything out. But I have worked through and out the big things and tend to not sweat the small ones.

The biggest change has been in the addition of Polly Persephone the pink Ped E Cab. The ability to travel in a 5 or so mile radius around our home has brought freedom. And it brought back a feeling of normalcy and of independence we did not have before. It can't go everywhere and I find myself choosing activities based on locations. And we are still missing out on bigger things like vacations and weekend outings. But we will get there someday, hopefully soon.

Now three years later many new people I meet have no clue I am visually impaired. They don’t know about the accident. And it feels good to not have to talk about it. So most of the time, I don’t. And some people who have known me even tend to forget. That is because I am doing a fantastic job passing as sighted. My visual acuity is and will remain the same. But my reorganizing brain, routines, creative problems solving and ability to fake sighted continues to expand. And expand into spaces and places where I even forget once in a while I am visually impaired. And now, I just think I am a person who sees differently. How I see is just how I see. It is something I will never be able to convey to others. But it is no longer foreign to me.

So this is my life. It is not pretty and it is not much different than anyone else’s because we all have challenges. I still have mostly good days and some really bad ones. But almost none of the bad days have anything to do with my inability to see well. The high points and the low points are there because of the other things life throws in my path. And usually they are big enough so I can see them coming.

I have grown emotionally and I continue to work on myself and my physical, mental and spiritual health. I am smoothing out the last of the rougher edges and working on those last pieces of what I need to do to feel good most of the time. Because I am healthy I now, and this is a change, have a very limited tolerance for drama, chaos and the shenanigans of the emotionally unstable, manipulative or otherwise crazy set. My boundaries are tight and strong and I do not tolerate behaviors that cross those boundaries.  I place no energy in black holes. The black holes are people or situations that will never change. I surround myself with others who are, for the most part, healthy and positive. I am always willing to support those in times of crisis. I still do that well.

I am me, just me. And sometimes I am reminded that this thing happened and that once I was sighted. But I am beginning to forget that life. Or maybe, I am moving on from it and placing it where it belongs---part of a past that is over and done. I am beginning to be surer of my future and see it coming into focus. A partner, a book, maybe another book, a move, a next phase of a life that has been unfolding. And I am ready, for whatever happens.

That next phase is moving back to playing in the game of life. This means the rebranding of myself and my business, the selling and marketing of my book, the polishing and production of my songs, and maybe the publishing of my poetry. Even more so it means the sharing of the lessons learned on this magnificent journey that has been at times my totally f-upped life. I am ready to tell my story and share my gifts in the form of both word and deed. Whatever opportunities I can get to fully carry out my mission, which has been and will be, to leave people and places better than when I found them. I have been baking the cake and letting it cool. Now I am ready to slice it up and serve it. And I can promise, it will be good.

Keep Moving Forward,

Beth (BLOVI) Medlock

July 18, 2013-Volume 88: Chapter Two of Enlightened

The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl-Volume 88: Enlightened Chapter Two

In May I put the first chapter of my book in a blog and many said they expected the second chapter to be the next blog. Well, here is that chapter---the chapter about my time in the hospital post-accident. It is dark, because my vision was dark. Next week marks the third anniversary of the accident and my blog will be a reflection of what I have learned in three years of visual impairment.  

Chapter Two: My Time in Purgatory (or the Hospital)

I got moved in the middle of the night onto a floor of the hospital known as a general floor that was not at all general. I was on a floor where they put people who are waiting to be placed in nursing homes but have nowhere to go.

Some kind of purgatory.

I was in the middle of a span of rooms with people in various states of dementia and the other ailments that mark the path of the slow decay toward death. The forgotten, those without visitors. In the night I heard moaning and sometimes crying. It did not make for cheerful surroundings or a motivated nursing staff.

And then there was me, freak-accident-girl, my room a scene of chaos with various family members and doctors checking in and out at all times of the day and night.

Lights in the eyes, drops in the eyes, bags of steroids hung and drained, and noise. There was so much noise that I was suddenly hypersensitive to in my blindness. Sleep was impossible and I wanted to sleep because I wanted to dream and to then wake up and realize that this was all some kind of strange nightmare. But it was oh, so real.

For 5 days I was stuck on that waiting-to-die floor, which I began thinking was kind of like the isle of misfit toys from Rudolph the Red Nose Reindeer. We are broken and nobody wants to play with us.

For the first 72 hours, they pumped me with steroids so I was feeling fine, eating and somehow managing my family and my daughter’s life and schedule lying in a reclined position in a hospital bed. I am still not sure how I managed all that, but I did: making sure my daughter was being taken and picked up from camp, cared for and fed, and put to bed in her usual routine.

And I did it using voice commands to my family and voice commands to my Blackberry, which I could no longer see. I knew, in theory, that the phone had voice commands. And I also learned that the voice commands work like 30% of the time. I renamed the phone the Blackberry Bitch because she just did not understand me. Usually after the fourth attempt to call someone, I wanted to chuck it across the room. I adapted and found that if you kind of speak in a computer like voice that mimics the voice on the Blackberry it can understand you. I was sure it was saying, “Oh yes, you are kindred, and now I can tell what you are saying.” That served me well for a few months before I got a new phone.

I also broke up fights between my family members, arranged a schedule so that someone was with me most of the time, and spoke to some close friends. I realized I could still get a lot accomplished while in a hospital bed.

It may have been the steroids; they make you super-human, or at least I am convinced of that. Lots of other things happened during those five days, some which I remember clearly and some I do not.

Honestly, like the days of constipation and the remedies, I just don’t want to recount.

But I will.

~

I was in the hospital for 2 days until someone finally got me my clothes and a nightgown and toiletries. The nurse seemed somewhat baffled when I said I did not have any of my toiletries with me yet, so she handed me a standard hospital issue baggie of personal care items. At least I could brush my teeth. 

In that really confortable hospital bed, where I was trapped by the IV lines going in and out, no one thought to hold me or lie down next to me. I am not even sure my family touched me much except for the stroking of my hair or a gentle pat or hug.

I must not have realized no one had really touched me or comforted me until the third day after the accident when my ex-boyfriend showed up and the first thing he did was say, “Move over,” and climbed in the bed with me and held me. I had needed that but not known how much until that moment.

I am not sure why no one in my immediate family could do that for me, but the reality was they couldn’t. Maybe it was out of fear or shock or their general inability to focus on someone that is not them.

You would think that it could be about me, in that moment, in that crisis, in that hospital room. But, again, it was not about me, it was about them.

There were fights in my room, loud yelling between my mother and sister about who was going to do what when it came to managing my daughter’s schedule and someone being with me at the hospital. And, interestingly and most importantly, about work-- how work, their work, was going to get done. There were computers and phone calls and business going on in my room all the time and it was jarring.

My sister stormed out after a few days because there needed to be melodrama and she was not the focus of attention.

On the fight days, the cursing and screaming was so loud and so foul that the nurses kicked them out of my room. I think even the dementia patients and the half-dead people heard the commotion.

Even though I could not see, I could tell through my talks with the residents and their comments that they thought my family was a little nuts or unhinged in some way. Or maybe I just said my family is a little nuts and don’t do well under stress.

~

There were times I was left alone in the hospital. My family knew my ex-boyfriend had to leave early in the morning, but no one came after he left. After a few hours of trying to amuse myself in darkness with nothing to do, a nearly impossible task, I started the phone calls which amounted to “Where are you?” and “I am hungry.”

In those hours I also had to use the bathroom. I was hooked up to IV’s, could not see, and therefore usually needed a little assistance. I hit the call button several times with no response.  I got angrier and angrier because I felt helpless and finally I got up and managed to start grabbing the cords to unplug the IV’s, felt my way around the room, IV stand and cords in tow, made it to the door, flung it open wide and began yelling that I needed help and needed it now.

I yelled in frustration at the top of my lungs, but I could hear no movement or sense that anyone was in the hall. So I kept yelling for about five minutes until a nurse came. She seemed annoyed I was yelling, but I was more annoyed they could not respond to a call button. That was when she realized I was blind.

They promptly put the bed alarm on me and a sign above my bed, which I could not see but assumed it said something like, “Patient no be able to see good.”

It took all that yelling (finally mine) on the fourth day to get shit straight. It was my first taste of how slack systems would be and how hard I was going to have to fight and yell and scream to get the help I needed.

~

After they took me off steroids, my gastrointestinal system shut down and the mood fluctuations began. This is when I realized the power of steroids. They ramp up your body and kind of make you feel like a superhero, impervious to pain and creating a false sense of reality where you think, “Hey, this is not so bad.”

But it is an illusion. And when the steroids are taken away you not only crash, you begin to feel how your body really feels. More importantly, you realize how you really emotionally feel, after having a traumatic accident.

And you feel like total shit. That is the best way to describe it.

I asked for more steroids, but once again, I had been given the maximum dose (for a human) and they cut me off. I think this time I was drug seeking.

So, steroid-free on the fourth night in the hospital, what I now call a really-bad-night, all the fear and anger and the realization of what had happened hit and hit hard. It was like the world of fantasy I was living in with my steroid-washed brain and super-hero cape shattered into shards of jagged glass pieces that were my reality.

And it cut deep.

In the dark that night and in my darkness came an unraveling and an untethering from the earth and in a way, I lost myself and my way.

I kept asking my family to not let me die. Even though I was not dying, something was dying inside me or maybe the old me was dying. Somewhat like a vampire story where you are being turned and your human self is dying off.

Or maybe I felt like I wanted to die. I willed it, I wished it, and I somehow thought if I gave in to the fear I would just leave the earth.

Finally, in my darkness, I felt disconnected from that hospital room, from the world. I no longer felt part of it nor an observer, but the observed. It did not feel good.

I spent most of that night somehow trying to escape that room by locking myself in the bathroom, curled up in the fetal position, cold tile carrying the weight of my body. And as in Pulp Fiction, the bathroom scene means something bad is going to happen.

The one thing that kept me tethered that night was the fact I had to be a parent to my daughter. I was still a mother and that sense of mothering and unconditional love for my child is what brought me back.

What also kept me tethered was that I began to pray, and pray really intently, for the first time since the accident. I prayed for strength, for vision (not sight), for the ability to care for my child, for God to save me. And I prayed, like I had in the past in moments of illness or distress, that God be near me and with me. And in that moment of deep prayer came a calm and a realization I had to get through this part to get to the next. I realized that my life as before was over, and more importantly, that I had the strength and grace to transition.

And the bad night was over.

~

The baby-doctors (they prefer to be called residents), constantly popped in and out of my room to look at my eyes. I had sustained a level of blunt force trauma and retinal cell death (called commotio), which they had never seen before.

I was in a teaching hospital and this was a teachable moment. I was glad to be of service.

I also learned some things about residents during my stay. For example, length matters. The longer the coat, the more time in residency, so the short coats can be mostly ignored. They are continually sleep deprived and are constantly writing notes, which means there are probably mistakes and typos being made. I also discovered that the residents, at least the men, are all married. They get scooped up quickly in medical school and probably have wives way too hot for them.

And they don’t correct you when you get their name wrong or seem to mind bawdy jokes. I called my two main residents the Budman and Jackoff for days until Jackoff says, “My name is Dr. Jack.” I really thought he said Jackoff, really I did.

My main resident baby doc who also had the first name of my recent boyfriend (which I could not decide was good or bad, just familiar) was really amused when he pulled a splinter of wood out of one of my eyes. I think he even slipped and said, “Cool.”

They also wanted me to bring in the bands of terror that did this to ne and took pictures of them at all angles. I suggested we get me in the picture and all pose around the bands. Good times.

In the hospital surrounded by family and nurses and doctors coming and going, talking and not talking, I sought the truth about how bad the damage was to my eyes.

What I learned is that if you don’t ask, they don’t tell. I also learned that my family is really terrible at asking questions. It was puzzling to me that even the nurses had no clue what had happened to me. They just knew to hang bags and put stuff in my eyes. And they did not even seem to get the sense that I really was in pain, because some of the nurses were really rough, grabbing at my bruised eyes to put in the drops.

One nurse missed my eyes completely with the drops so my eyes caked up and she could not get them open. Then she threatened to cut off my eyelashes. I faintly remember telling her to get out of my room and the next day I told the floor manager she was not to be my nurse again.

The nurses did not even know I could not see and they were late with meds and failed to respond to most calls. This was partly due to complacency from being on the waiting-to-die floor. I really hope that it would not have happened on an acute care or trauma floor where people actually understand you are in pain.

Every single day, when they came in the morning to write the nurses’ names and numbers on some dry erase board, I told them, “I cannot see that board.” Not even this clued them in that maybe I was kind of blind.

Even in the hospital I must have been faking it well, or functioning too well to be in pain or blind. This would become a recurring theme.

~

After dealing with many doctors, I realized that they were trying to give me subtle hints that I was screwed.  

My one main resident in the hospital kept saying, “This is a very, very, very bad accident and you’ve sustained a very, very, very bad injury and I’m so, so sorry this has happened to you.”

This was his attempt at bedside manner, which I appreciated. But it was also kind of like saying, “You’re screwed lady,” which I didn’t realize until later that this is what “You have a very, very, very bad injury” means. I thought he was trying to be nice.

~

The cornea specialist came into the hospital and said that any surgery on my damaged corneas, iris, or pupil would be purely cosmetic.  I should have at least questioned that. “Gee, those are important parts of the eye. Why would it be cosmetic elective surgery?”

But I did not ask.

Later I understood this was code for the fact that if your retinas are damaged, it doesn’t matter how the other parts of your eyes are functioning. And, of course, that was the case.

I didn’t know enough about the retinas at that point, so I just nodded my head and said, “Oh, that’s good, they can fix my cornea and my iris so I look normal.”  But what I wasn’t hearing was that it was cosmetic because it’s not going to help you see. 

I hadn’t taken biology in a long time and I didn’t have How the Eye Works for Dummies. 

~

I especially liked the doctors who would use all this medical jargon and then say, “Wow, you really whacked the heck out of your eyes!”

Or even better: “This is a real bummer.”

It was true, it was a real bummer, and I did whack the heck out of my eyes, but it’s funny to hear doctors talk like that. Those are definite signs that you are screwed.

~

I saw all the ophthalmology attending physicians in that hospital, sometimes more than once. They all wanted to look at the freak-accident-girl’s eyes. I had one who gave me some crazy-best-case-scenario, which involved my getting back 20/60 vision in one eye.

Right after that attending left the room, my resident said, “Don’t listen to that, he is guessing and with the amount of blood and trauma to your eyes, that is not a likely scenario.”

He was awesome to do that because the best case scenarios give you false hope and hell, given the fact that I had a one-in-a million freak accident, I was pretty sure I wasn’t coming out with the best case scenario. 

There were doctors who treated me as if, because I lost my sight, I must have also lost my brain, so I would not understand what was happening or I probably just did not want to know right now.

Pat, pat, pat. “I think this is the curse of macular degeneration.”

These eye docs are used to dealing with older people who really don’t ask a lot of questions or want to know what is happening in full medical terminology. It’s more like, “Just give me my shot that I have no clue why I am getting.” That is the mood in the mac degeneration mills.

But in general they are surprised you are asking so many questions and you don’t even want the answers dummied down at all.  

I never really got answers in the hospital except from my resident who just said, “There is too much blood in the field and we can’t tell, but it's not going to be good.” Thank God for that cute young Jewish boy (married, unfortunately) because he was new and fresh enough to be able to say, “We do not know.”

The attendings would not say that. But I needed to know so I knew what I would face in the future. It took me three doctors and three months post-hospital to get there, to that place of uncertainty and truth.

Finally, a retinal specialist told me straight that my ability to see, long term, wasn’t going to get much better. “It is what it is,” he said. But by that time, I already knew that. I had gone back into my world to mix with the sighted.