I feel like a turtle with its shell ripped off.

Every time I say this title out loud it makes me giggle.  I picture a turtle with no shell and that just seems wrong on so many levels.  Poor guy is vulnerable, freaked out, and just wants to go back to the safety and comfort of his shell.  That is exactly how I have been feeling lately. And I have been basically told that it will take three years for me to grow a new shell.  Yikes! Grief is just like that.  When you lose anything or anyone close to you it sends you through a myriad of emotions that are amplified.  There is no wrong or right way to grieve; you just have to pass through it, and it takes time a.k.a. shell growing back in three years.

 I got to go to back to school night this week.  It should be no big deal right? Meeting my child’s teachers was awesome.  Hearing about their classes was cool.  The process took looking at a map (spouse did that), finding classrooms (spouse did that too), and getting from class to class in 5 minutes.  During those passing periods there was a mass, and I mean a MASS of people milling around.  With my low vision, I cannot see anyone’s face that isn’t within 2 feet of mine and even then it is only partial. I see lots and lots of people, but no faces.  I can no longer detect social/facial cues and it is a little freaky (ok a lot of freaky).  Then you add that the spouse could see door numbers and would duck into the appropriate room while I just walked on by, missing his departure from the mass of people. I was paying attention, I really was, but with all that visual input from the sheer volume of people, and my trying not to get run over or bumped into, I missed the cue.  I was feeling a little exposed in my disability.  I know in my head that 99.9% of the population is literally oblivious to the fact that I am having any difficulties what so ever.  However, I feel what I feel regardless of what is probably truth note the aforementioned amplified feelings.

It dawned on me afterwards that I have always been more of an introvert on personality tests than I am extroverted. I used facial cues to help me be more at ease and a little more gregarious than what my skin or mind might feel.  Having no cues and smiling like a fool with no way of knowing if anyone is smiling back, or is friendly, or is even engaged on this planet is overwhelming.  By the end of the night and after arriving to the safety of my home, I literally felt like I had just had a round of electroshock therapy and was ready for my nap.  This is one of the parts of the grief process with which I have a hard time. It is the part where one feels EVERYTHING, while the world just plugs along uninterrupted in their world by anything catastrophic. Don’t get me wrong, I have plenty of times been the one cruising along with no interruptions, it is just I have gone through enough loss that I recognize that is what I am feeling now about my vision loss. You can tell you are in this stage of grief, because someone will share with you how horribly sad there are that their finger nail is chipped and you have the incredible urge to slap them and say “get a grip, it isn’t like someone died or something”.  Luckily, I have more self-control than that, but you get the point. So I journey on in spite of feeling exposed and afraid and hope that the amplified feelings subside sooner than later. 

Another chapter in this so called life of low vision

Anyone who has suffered a loss will totally get this post.  When my father was diagnosed with cancer 18 years ago I remember all the feelings that went with that day.  Any time you are told that something bad is going to happen and they just don’t know when, you are left hanging.  You wait on pins and needles through every chemotherapy session, trip to the doctor, or new symptom.  You go through all the stages of grief, multiple times over.  Then you just wait.  Usually when you are just about to exhale, and let down your guard, thinking maybe it will be all right, something gets thrown in and you are back in the tornado of grief.  Mastering these storms in life take practice, work, courage, grit, and any other character trait you can muster.  Sometimes the sheer act of getting out of bed is heroic, yet only fellow travelers will get that. Everyone else who has a normal, uninterrupted life, are clueless and sometimes downright hurtful.

I have been on a roller coaster of emotions since May of 2011.  At that time I had the experience for the first time of my vision tanking and not coming back.  I had a preexisting scar from a treatment back in the 90’s decide to expand.  Unfortunately, since the scar was located right up against my central vision, it expanded into that region.  Remember, I have 0 central vision in my left eye.  100% of my fine tune, 20/25 vision was my right eye, and now I have just lost a chunk of that.  I have not obtained anything better than 20/70 in my right eye since 5/11.  The roller coaster is that prior to 5/11 I had my vision get as bad as 20/100 but return to the 20/20 to 20/25 range. Post 5/11 I have had my vision go all the way down to 20/200 in both eyes (that is legally blind), and I have had every acuity between 20/80 and 20/200.  Every specialist visit my acuities are different.  I used to be able to go to my visits confident, knowing from all my observations whether or not there was fluid under my retina or not.  Those days are gone.  I have gone in thinking I was fine, and there is a ton of fluid and an active blood vessel growth and then other times I go in swearing my vision is altered and they cannot detect anything.  Until 5/11 I have had some semblance of knowing where things were at (aka false control).  Now I am completely in the dark (no pun intended). I have to see the specialist about every 6-10 weeks and you could literally just throw craps dice on which way that visit is going to go.  The bottom line, I am trying desperately to get on top of the erratic feelings, and I don’t know if it is even possible.

 Then you add caveats like I got reading glasses and I am now able to read a book that isn’t 3 inches from my face.  It isn’t as far away from me as a normal sighted reader, but it is less stressful than at my face.  However, my problem is this: I can now read and my emotions immediately go to “how long is this going to last?” Now if you have never experienced the feeling of “waiting for the other shoe to drop”, you are at about this time thinking that I need to be more positive, or some such thing.  However, when you have gone way up high on “things are looking good” to the way low of “everything is in the crapper”, you know that after a series of ups and downs you can no longer just “be positive”.  Your emotions go to the place of “what do I need to do to find middle ground on this”.  The drive to not fly all over emotionally is tremendous.  All I want is normalcy and balance, but I have a disease that is wreaking havoc on any chance of that.  In a lot of ways it is a conditioning, being ready for anything at any time yet not letting the emotions of either get the better of you. And almost more importantly, not allow yourself to go into the fear of “what if’s” but stay in the present moment, whatever it brings.  

Nervous terror!?

I was at my monthly “low vision support group” meeting today.  We had a speaker who spoke about “mobility training” and its importance.  (For those not visually disabled, mobility training is learning how to use a white cane, how to navigate the public transit system, and basically how to get from point A to point B without anyone else’s help but just all the resources and training you have learned.)  The gal shared her story and it continues to amaze me how when someone else shares what it is like for them navigating through visual disability that I start to feel less alone on this journey.  She shared something today that so resonated with my experience that it was freeing in a lot of ways.  She was talking about how whenever she has to go somewhere new that she has a lot of anxiety and gets butterflies in her stomach.  Do you have any idea what it is like to have this sensation on a regular basis (like daily, sometimes hourly)? It is a constant for me right now.

 Here I had been thinking there was something profoundly wrong with me in the fact that every “new” trip causes me an enormous amount of anxiety. Both my kids started new school these last two weeks and I have had to “learn” their traffic flow, the volume of traffic, where to pick up and drop off kids, what streets to turn on, and all the while with reduced vision.  I literally have been coming home feeling like I have just run the track for an hour.  I am overheated, a little nauseated, and completely exhausted. It makes me cranky.  I have been successful, in that I am slowly learning my new routes, and all the nuances of them without incident, but I am not past the fear just yet.

I have to get to places now with lots of time to spare so I can “relearn” with all my other senses, what I used to be able to do by sight alone.  The gal today shared how she had communicated she wanted to get to an event early, so she could figure out the lay of the land and then when they arrived late she described how I have felt in similar situations. In the height of an event there are so many competing noises, sensations, and obstacles that it is really hard to get one’s bearings. What sighted folks don’t understand is that by trying to dictate to us what our surroundings are doesn’t help as much as “feeling” it for ourselves during a quieter time than peak activity. Just as yelling at a foreigner isn’t going to make them understand our language any better; dictating orally what my environment looks like to you doesn’t help me “understand” my surroundings.  I have had the sighted get frustrated with me and until I can hear, touch, and use my other senses to explore my environment, I will never understand dictated directions.  And just like a foreign language, being visually disabled takes time and practice.  Please do not assume you know my needs when it comes to a new environment, it takes what it takes for me to learn it and I don’t need the added stress of your frustration.  You have no idea how frustrating this new world I live in is.  I am just glad that those who have gone before me totally get how this new world feels to me.

Instantaneous panic, is my middle name

The DMV, strikes fear in most people’s heart.  It means long lines, irritated state workers, and the dreadful list of “required” papers that make the most stable individual sit in a corner and suck their thumb.  Yes, that is where I was today.  My oldest can get his driver’s permit now, because he just turned 15.  So after school today we dashed over to the local office and took our number, 16 and they were serving number 90.  It was 4pm and the office closes @ 5pm.  I prayed, a lot.  I didn’t want to sit there all afternoon and then have them say “we are done, go home and try again tomorrow”.  We pushed through.  They did come out and say that the office was now closed and that the doors would be locked and anyone who dared leave was done, no reentry allowed.  The good news, we got served.   We obtained the permit, but not without a little sweat.  I was handed document after document to read and sign (um, I am low vision and can’t read these documents well).  And all the while the gal behind the counter had my license as proof of Colorado residency and address. You know the one that is unrestricted even though I am currently self-restricted.  This is the same one that has no indication that I am low vision, visually disabled, or anything.  I am currently working on getting everything into place so that when I do renew my license it will reflect my bioptic training (coming in September), the restrictions that I already adhere to, and everything else to make my actual ID match my life.  Hey, maybe I’ll be honest about my weight for onceJ.  I should clarify, I was honest about my weight, 10 years ago when I was issued this license just that I am not that weight any more.  Actually I think if I was that weight, I’d be sick, or starving.  Since I was the one who brought him to the DMV, I am the only one who can sign his driving log.  If his father wants that privilege, he gets to sit at the DMV and wait for his number to be called and pay an additional $7.  I love the government, I do. Oh, and the best part was when the clerk noticed that I no longer reside at the address on my license (a prior CO address).  She then asked “do you have something that proves you live at your current address”. This is where the “panic” set in.  Then she graciously said “do your checks reflect this address”?  And yes, they do, phew.  It almost sent us to the curb on a technicality.  Then after stressing me out, the gal says “Oh, your current address is reflected in our system”.  I didn’t have the heart (or the guts really) to say “No duh!”

The moral of the story: push through even though the odds seem stacked against you, for the most part it will all turn out in the end. 

When scared, face the fear with courage and if that doesn’t work, run

          I have always been dogged by fear.  I have been afraid of things that one doesn’t even need to be afraid of, but that is just how I am wired. Add low vision to the mix and it adds a whole new dimension to life.  Lately I have been dealing with an enormous amount of anxiety (which by the way, I recently read actually exacerbates my condition).  I have lost a lot of things due to my vision loss, and other things I have to fight very hard to keep.  When you combine that to just life changes that have to be managed, it spells insomnia. What I have learned, is that when Fear shows up I have to pull out the Billy club with “Courage” on it and beat it back into its rightful place.  Below I have listed some current examples in my life where I have struggled and then turned things around. Note: sometimes it takes a long time of struggling before I get the upper hand.

 I sight read to play piano.  I can no longer see the music at a distance and when I can get it in focus it is basically a frame at a time. It takes a certain level of grit to push through and make sight reading work again.  Thus on this front I have decided to go back to some pieces I know large parts from memory and fill in the stuff I don’t recall as easily.  In other words, I will be memorizing the entire piece, because I no longer have the luxury to sight read it.

I love to sew.  Sewing straight lines, threading needles, lining up patterns are all work for me now. So one thing I have done with this activity is give up on “perfect” and work toward “functional and minimal errors”.  I actually threaded my sewing machine yesterday multiple times and I had an Avastin shot in my good eye just prior to working on this sewing project.  I had been told the day before I need “binocular vision” to thread a needle. Ha, I have not been binocular since 1990, and apparently after yesterday I have figured out a way to thread my sewing machine. Adaptation just takes time, and work.

Reading, I love to read. I had lost the ability to hold a book and read traditionally about 18 months ago.  Well just recently I had an epiphany, since the last several years they have been suggesting bifocals and then reminding me that they drive those of us with low vision crazy, why not get reading glasses? Those glasses are now on order and should arrive in the next two weeks. I’ll let you know how that goes, it might also help with the sight reading of music, but I don’t want to get too far ahead of myself.

               There are all these new things going on in my life, like kids starting new schools, a teenager on the cusp of learning to drive, and just “new” circumstances that can present “new” challenges.  These can only be challenged by going through the motions and working through it as it evolves.  This week I had a kid start a new school and it is their first year of middle school.  I have now driven to and from the school during carpool. I have familiarized myself with the school and some of the staff and recently even dealt effectively with an issue that arose.  What does that do, well when you go and face your fears and it all works out, peace is on the other side.  You feel confident that you can actually “do” this, you feel success and the concerns you had slip away.

This is a great article on my condition.

http://www.lowvision.org/histoplasmosis_maculopathy.htm

I found this today when looking for some more detailed answers to a post on a discussion board I am a part of. This describes pretty much my entire experience with POHS.

I already hated clothes shopping, but now it is especially loathsome

 Clothes shopping, it brings up a lot of different emotions depending on where you are in life.  I guess really, it depends a lot on your weight and how you are doing with your body image.  However, those factors today are the least of my worries.  First of all if I can find a women’s department in the store, that is success.  Then figuring out which section of the women’s department I need to be in, like not maternity.  My low vision doesn’t allow me to read the signs above the racks; I can’t read the price tag let alone the size unless I hold it up to my face.  So the old days of glancing around and finding quickly what I am looking for are just, bluntly, gone.  I wanted to find some skirts today, because really I haven’t bought more than the denim one I have had since I hit goal weight with Weight Watchers in 2009.  I found a few skirts, but they were like $40.  I was at Target; I’ll spend $40 on a skirt on the Clearance rack at Macy before spending it at Target, just saying.  Anyway, the skirt thing was a complete bust.  I did try on a few dresses and some shorts.  The thing is, when I look in the mirror, first of all I am my worst critic.  Secondly, I am not able to take in the full picture.  Imagine yourself standing in the mirror.  Now remove one whole leg, or half your torso and half your face and determine if this particular piece of clothing is flattering on you.  After removing those particular pieces add the effect of everything looking like a Salvador Dali painting and finding something decent is pretty much up there with making a picture square on the wall.  Picturing this might give you a better idea of why I find this particular task up there with having the ultrasonic cleaning at the dentist they use to remove plaque buildup.  (In case you don’t know I hate it, all of it)  The one really weird thing about clothes shopping is my inability to see feels like I stand out and am very obvious that I have issues.  Add to my already neurotic state the feeling of standing out like a freak and you have the most amazing space to be in.  Luckily, I can’t see anyone staring or making faces and honestly, they are all busy fussing about their own business to really notice anything about me. I have enormous compassion for everyone who deals with any type of disability because it takes courage to push through and do everyday tasks and to just participate in life.  You are my heroes.  Just don’t ask me to go clothes shopping. 

Sometimes, change is just miserable.

Change is inevitable, misery is optional.  Well, for me sometimes change is miserable.  Sorry I have been gone for a month, but I had family in town and then I travelled back to where I grew up. 

To travel while still working out the routines of a disability is daunting, overwhelming and exhausting.   I feel like all I ever say any more is: “I am exhausted”.  However, it is a different kind of exhausted.  It is the fatigue that comes from having to fight for every little thing that used to come with good eye sight.  I can’t read street signs, menus, marquees, price tags, and countless other things I have taken for granted until my good sight was gone.  I should reword that, it isn’t that I can’t READ them, it is that I can’t SEE them from a distance and quickly take in the information I need. 

At the airport, forget security and all the craziness of that, I can’t see gate signs in the distance, the displays on trains or shuttles, the signs that show the terminal, the names of the airlines, or the lovely monitors that tell you whether your plane is delayed, cancelled or just gone.  Now, looking at this list right now, I know that my family will get me to where I need to go (and did) and that if I was travelling alone I would go early and get help at the airport.  The key here is “the beginning stages of disability”.  You know the DISCOVERY phase. Just being in the situation and realizing all that I cannot see anymore is like being hit by a sleeper wave when you have your back to the sea.  It slams you to the ground, drags you a few yards out, and spits you back onto the beach gasping, choking, and wondering “what in the world was that?” 

I was informed that it can take 3 years to adjust to such a life change.  Okay!? I just passed the one year mark and have two to go.  I guess I am grateful I have gotten 1/3 of the way through, and that those who have gone before me are well adjusted and doing well with their circumstances.  However, there is one caveat.  My eye disease is still unstable and I could continue to experience a decline in my vision.  So, basically all the progress I make in this time could be abruptly changed and I am back at square one.  Have you ever played a game where returning to the start is frustrating, say like “Candyland”?  Where once or twice is tolerable, but upon the 20^th trip back you are thinking this game needs to live in the trash?  I think you get the idea.  Let us just suffice to say I am doing all that I can do and am trying not to be too grumpy about it. In other words, I can’t change my disability; that I am powerless over. But I can change my outlook in the midst of it, and choose not to let it make me feel so miserable.  I will celebrate the three steps forward, and breathe through the two steps back.