Different spaces

This journey of vision loss has been quite the ride.  The good news, each time I get  hit with a loss to my vision, it isn’t as bad as the last time.  Now let me clarify, the loss is bad, but my attitude and ability to take it in stride is getting better. 

My life (probably more the last 10 years than any other expanse of time) has been a series of events that requires me to fill a metaphorical tool box with new tools.  So for my vision loss the tools are: all the resources available to help me just to live, and then on top of all that is the character traits required to do life without rage quitting.  You learn to be patient, self-forgiving, kind, teachable, and most importantly to laugh regularly.

I have spoken before about a bear trap around your ankle and that this is how it feels when things in life happen that are not in your control.  (Note: I am finding that less and less is really in my control, to the point I wonder if I control anything beyond eating and sleeping.) If you fight a proverbial bear trap you will shred a lot of flesh, and hurt.  I can thrash, scream, and fight with all my strength against vision loss and not one letter will return on the eye chart for me.  My life is now a series of “work-arounds”.  I can’t do certain things because bluntly, the vision is not there to do them.  However, I can make it “doable” through adaptation and training.  Some things will remain almost impossible and I can only adapt to a point but honestly, sometimes you really have to ask yourself if it is worth the time, effort and frustration to prove you can do something? I have learned to let some things just go or look at them differently.

I used to love to scrapbook.  I can do some, but gone are the days of elaborate page layouts and tens of pages for an event.  Now it is one two sided page for one event and a lot of consolidation.  I am also using my scanner to get things on to my computer like kid’s artwork, old pictures, and memorabilia.  Someday I will get them into an “online” scrapbook, but for today, just having the memories digitally is better than nothing.  Also I can see my work better on my computer than I can in a book any more.

I am an avid reader.  This has been one area that has been really hard for me.  I love the feel of a book in my hands, curled up on the couch and turning the pages to reveal each new part to a story.  I have a service that brings in large print books as well as digital audio books.  This last May I pretty much lost my ability to read large print comfortably.  Now I must read my books either on a tablet or listen to them.  I am truly envious of the soul in the park that can just simply, enjoy a good book.  I have to accept that I either read however I can, or be stuck in what I can’t do.

There is a lot of freedom in letting go.  I am now in a space in my life where I do things I enjoy (love really) and I have let go of the stuff that is too hard or just too frustrating.  I never knew how much energy is expended in a day until I had to learn how to do my days with limited vision.  It is exhausting and thus I have been forced to choose what I will do and let go over everything else.  It comes down to one question “is it worth it?”  There are times I have asked that question and said “yes, absolutely” and then later throw up my hands and say “this is way too much work to adapt”.   There are other things I just have to accept.  For example, mail…seems simple enough right? However, for me since I don’t read well without assistance going through a stack of mail is work.  I now must decide immediately upon sorting what I am going to do with it.  Am I going to read it later? Recycle? Or throw away?  Since I don’t read well, every time I pick up the same stack of mail I have to slowly read through every piece to make sure I haven’t missed anything.  I can’t just glance at it and know what it is, thus I no longer have a stack to “read/deal with later”.  I deal with it all on the first pass because it just takes too much effort and time to process more than once.

At the end of the day it is about picking your battles.  Sometimes the battle is worth the effort, and other times it is best to just give yourself a break accept what is and move on.

Vision in flux

I have had 2 years with no major developments with my vision.  I have done a ton (it really feels like that much) of rehabilitation, retraining, and adaptation.  And silly me I thought maybe we were in the clear.  I have had this disease/condition/syndrome since 1990.  I used to go many years between episodes.  As a matter of fact I usually would have new treatment options each time this thing reared its ugly head again. However, I seem to be in a more “chronic” stage vs. acute flare ups here and there. Last week my scar in my good eye (a scar from argon laser treatment back in the day) spontaneously expanded. I noticed said expansion on May 24^th, and now on June 7^th, I can barely read the 20/100 line. My vision is now ALL peripheral vision.  I appear to have no central vision.  The good news is I have spent the good part of the last 2 years retraining my eyes to pull more into the peripheral vision that adaptation hopefully won’t take too long.   I see both a low vision specialist and my retina specialist next week, so hopefully that will give me more information.  However, right here right now in the midst of this completely grey unknown reality I am back to the task of literally living one day at a time.  The idea of a 6 month, 1 year, 5 year or 10 year plan have been a long ago luxury I no longer have.  If I reach beyond “today” and start to worry about what my future is going to look like I am going to stop breathing and seriously freak out.  When I get up in the morning it is like “wow, my vision really stinks…can you live with this ‘just for today’”.  This technique has gotten me through some of the most insane chaos in my life, because I pretty much get do what needs to be done and deal with the disability in one day increments.  This condition is a lot like being pulled out in a rip tide and then  you do everything you have been trained to do to get back to shore, and just about the time you start breathing normal again and taken a few small steps on solid ground the next rip current drags you out to sea.  This condition takes stamina, courage and perseverance that taxes your physical, mental, and spiritual well-being. Thankfully, with the support of friends and family I am able to keep going. The experience of the previous times really helps with each subsequent trip out to the deep blue sea. 

Confidence is the result of facing some of your worst fears

   This lovely retinal condition has cost me a lot, financially, mentally, and physically.  Having something that erodes your sense of security on so many fronts makes pushing through extremely difficult.  I feel like discouragement is my middle name.  It is not because I live there, it is just so prevalent.  However, the last several weeks have provide opportunities for me to do things I CAN do and not dwell on the stuff I can’t.

I used to be a research assistant at a biotechnology firm doing research and development of drugs just like the one they use in my eye today to treat this condition.  My field of expertise really required good vision or shall I say good central vision, which for me is all but gone. So I have a degree that I may or may not ever be able to use again and I really try not to dwell on it because it is out of my control.  It is what it is.

I went home to raise a family and in the meantime my training has antiquated and is now something I won’t be able to retrain and reenter that field because of the whole vision thing.  When the time comes that I am ready to reenter the work force for real I am going to have to rethink the whole “career” thing.         Several years ago someone had suggested that I apply for a substitute teaching license and try that as an “interim” experience.  I did do that and I have taught and it has been really rewarding.  It feels good to be able to go to a job, read the teacher’s plans, do everything that is asked of me, help students who have questions, and have a great day. The greatest reward is that I CAN do it. And then when kids can see that I am engaged and really do want to help and am able to help is just icing on the cake.  I have been getting a lot of opportunities to get into the local schools and show them as well as myself that I can do this.

I still don’t know what I will do long term but in the meantime substitute teaching helps me to build my confidence that there are some things I still can do and do well in spite of my vision. When I face my fear that I can’t do anything and push through I find out that there are things I still can do well.

Confidence, it does come back it just takes time

I am happy to report that things are going very well. I am amazed at how once I got over some of my biggest hurdles, my self-confidence came back.  I was starting to wonder if it was gone forever.  Knowing that my driver’s license now reflects everything it needs to in order for me to legally drive is one booster and the other of course is my cane.  Many of my fears have been resolved and I am really enjoying where I am at right now.

I was certain that now that I can drive with my bioptic that I would be getting pulled over all the time to ask “what in the world is that on your face.” I am happy to report that I have passed multiple law enforcement and have not been stopped once.  Driving with a bioptic brings such a peace of mind knowing that at any time I can look through and gather information that my disabled vision can’t get me. 

I cannot say enough about the cane.  All the things I thought others would think or do, has not been the case at all.  People are kind, helpful, and respectful. I still feel like I need to say “my vision doesn’t get in the way, I can work through it with my tools”, but it is getting better.  Every time I can prove that I can do something in spite of my vision, I gain even more confidence.  Yes, there are things I miss but at the same time the cane gives a big ‘hey this is why she has issues’ that really frees me from explaining anything.  For example, I was at an event the other day and I swore I knew one of the parents who was going in behind me.  And I asked “Is that….?” And they said, ‘No’.  Ooops.  No big deal, move on the cane communicates without me saying anything, “don’t be surprised if this person makes weird visual observations’. “ The cane in of itself is a public service announcement.

Jumping the hurdles of my driving being completely legal and my cane as a communication tools I can get back to living life and not worrying about how I am going to explain anything.  I can now focus on what I can do and continue to regain my confidence in those things and learn, grow, and adapt from the things that are still a struggle.

It is costly to be visually disabled.

I have really been struggling lately with the sheer cost of adaptation and assistive technology for the low vision and blind.  I am trying desperately not to whine, and to be grateful for everything that I have been able to purchase and the training I have received.  I am very grateful.  However, when I attend low vision support groups and there are folks in there who are retired on a fixed income I wonder how much they just give up because financially it is just not feasible.

There have been some amazing leaps in technology that have been a wonderful resource for the low vision.  There was a time (and still is for some) when people carried around several different tools to help them in their everyday life to help with low vision.  Now with the onslaught of iPhones and smartphones, these devices are able to do the job of a whole conglomeration of assistive tools.  Which is wonderful, however, it comes with a pretty hefty price tag.

I think what gets me down about it is that for a lot of people having a Smartphone is either for work or because it is cool to have, AND they have the disposable income to justify the cost.  However, living on a budget and trying to keep cost at a minimum, it is really hard to justify a Smartphone that costs to the tune of $200/month just so one could have all the bells and whistles that helps the low vision.   

I have always had to pay for really good health insurance, with a big price tag because I absolutely have to make sure that my eye disease and its treatments are covered.  When there are treatments out there that for just the drug alone can run almost 3K per dose, you can’t skimp on insurance.  When I had PDT treatments we had to pay upfront some $2800 and hope that the insurance would reimburse.  Luckily, our insurance at the time did reimburse and we got the money back.  However, who knows when the day will come that the treatment falls outside of plan benefits and then things will get ugly. Luckily right now Avastin is working and costs only $50/dose.  However, when the day comes it stops we are looking at all alternative drugs running close to 3K per dose. 

The bummer is I have a rare disease that isn’t really even acknowledged let alone recognized, so it is easy for insurance to say “not covered”.  Whereas a condition like Age Related Macular Degeneration (AMD) is widespread, recognized, and heavily covered. We can’t really have all our retirees going blind because they are on a fixed income and can’t afford treatments.  But for that 0.7% of us who have POHS there just isn’t the volume of a collective voice that could get the insurance companies attention.

I hear of folks paying exorbitant prices for medication, treatment, and doctor visits.  Others pay steeply for insurance.  There are times when I look at my CCTV and think, wow I could have gone to the Bahamas for that price. Unless I don’t want to be able to do basic tasks and get trained up so that one day I could reenter the work force, the Bahamas will just have to wait. 

Free at last, free at last

I am happy and breathing again.  Last week I had the culmination of all the work I have done and two years of waiting to take the ultimate acid test for my low vision.  I received my much awaited letter from the DMV to get my license renewed with all the appropriate restrictions in place.  I have two OT’s and tons of family and friends that believed that I would pass with flying colors.  I figured I would pass, but knowing you are going to pass and have passed is two totally and I mean TOTALLY different realities.  I had to take a written and a behind the wheel driving test.  The morning I chose to go spend the day at the DMV it had snowed three inches the night before.  Then as I drove into the DMV my “low tire” light came on because my hubby had made sure my tires were at correct pressure.  (On the DMV website it says that the people administering your behind the wheel test will make sure all lights are working and that there are no low tires.) So after figuring out how to reset the tire light I was actually on my way.  

Considering the reputation of the DMV –long lines and long waits—it wasn’t too bad.  My number was the 3^rd to be called and I was on my way to getting my new restricted license. Thankfully because of the documentation submitted on my behalf, I didn’t have to do the “vision” test. The written test was pretty intuitive and I passed just fine.  It was the “behind the wheel” test I was concerned about.

The behind the wheel test only took about 10-15 minutes.  It was really basic driving.  I had to navigate several different intersections, turn left and right and do lane changes and that was pretty much it.  Oh, I did have to basically just do whatever I was told to do.  Really all that matters is I passed. Big SIGH, I passed.

Now all the action items in my life that I had put onto the back burner can now be addressed because I know now that I can drive.  

The thing about any loss is it has up days and down.

I love it when I get to blog about my successes and good days.  I enjoy sharing my experiences and joys in learning new things and facing this disability head on.  Then I have the down days that are totally normal with this new reality.  But I have found that I am more hesitant to share about those down days and feel like I am being a downer.  However, the reality is that this is the reality of a loss by medical condition.  You have successes and good days, but you also have struggles and less than glorious days.  It is what it is.  I am trying to push through and share more of the down days as well, because the reality is that if people are encouraged by what I write, they will also be encouraged that they too are not alone on this journey and that the ups and downs are normal.  

Apparently I am on a roller coaster and no one bothered to tell me.

Depression is an insidious condition.  Sometimes to the outsider it can and I emphasize can be obvious.  But a lot of times it isn't that easy to see.  A lot of the reason for not being able to pick up on it is that we all have this thing in us called pride that rises up and says “we got this, we are good”.   It isn't until things start to pile up and we get the sense that we are drowning and maybe, just maybe we need some help. Also there is a point of no return, because of a lot of life stresses you just can’t get back no matter how hard you try. Most of the time eating right, exercising, sleeping well, and in general keeping the stress at bay one can overcome a minor depression or the beginnings of one.  However, when it goes too far you cannot get back without help. Trust me, I have tried this before and failed miserably.

I have struggled with depression before, back when in a two year period:  my father died, seven different family members and friends died, I lost my job, had my first child, bought and sold our first house, and then moved out of state.  I guess those were too many stresses lined up together to actually have a chance at making it.  I truly believe in the adage “If life gives you lemons, make lemonade”, but if you find yourself making brewery size volumes of lemonade, it is time to get some help.

I have known for about almost two years now that I have been on the brink of depression.  With the loss of my vision in 2011, I lost so much more than just my vision.  My ability to drive has been greatly restricted, what my degree and training are in I won’t be able to return to (ever), I can’t read “normally”, I can’t sight read music any more, I can’t ride my bike by myself, and the list goes on.  I had a significant visual loss, but the collateral damage from that loss is what has amped up the stress in my life. 

Most folks get to go about life in their “normal” way and I have to have multiple contingency plans taking into consideration all kinds of circumstances that are beyond my control just to get through one day.  I have been on a steep learning curve adapting to low vision and it has just gotten the better of me. I got fatigued and lost my ability to hang on.  I do so much to stay on top of all my training and rehab, but the mental gymnastics of it all has finally caught up with me.  I actually was wondering if the fact everything was done that I finally relaxed and wasn't in “fight/flight” mode any more that now the depression has hit hard.

I am going back onto anti-depressants, which I know work from the past and I have to level my pride of “I can do this myself”.  What is funny is that I have been able to ask for help in every other area of my life, but here I have been mentally treading water for almost two years and have finally gotten to where I either drown or receive help.

If you have suffered significant loss, keep your eyes open for the signs of depression.  A lot of the symptoms aren't things we would normally associate with depression.  Just because you don’t feel sad all the time does NOT mean there isn't anything wrong. My biggest symptoms are: wanting to sleep more and more, irritability, inability to focus and concentrating, not wanting to do anything besides just the bare minimum (no hobbies), and this constant feeling like doing life is like walking through quicksand.  Also once I get past a certain point it doesn't matter what I do any relief is very momentary and it is obvious that I need help.  Honestly, by just asking for help and admitting I can’t keep this up has lifted an enormous burden off my shoulders.

The world is going round and round and round and round.

Every so often I have bouts of vertigo.  Vertigo is the sensation of spinning when in fact you are not.  It can be slight as dizziness and it can be debilitating.   I have luckily only had a couple of bouts each year but a few weeks ago I had one doozy of an  episode.

I had seen my ENT on more than one occasion for vertigo but we were never able to replicate it (thank God!).  However, after this most recent episode the doctor ordered a “balance test”.  I went in and they put these glasses on me and made me look at lights going up and down, left to right, slow, and fast.  Then they blew cold and warm air into each of my ears while I was lying down.  On my right side the air, both cold and warm caused the sensation of spinning and then on my left absolutely nothing. I asked if this was “normal” or was it my issue.  The doctor informed me it was my issue. (Surprise surprise)

The good news: we know why I have vertigo.  The bad news:  it is yet again caused by my vision loss two years ago.  I asked if it could be due to vision issues and she said “not usually”.  Then I said, “Let me explain, I have no center vision in my left eye and my right eye’s center vision because significantly obstructed two years ago.” To which she so politely replied “Yup that would do it”.

I will now have to work with a PT who specializes in vestibular issues. My core balance is off and I am leaning to the right so we’ll need to correct that so that the vertigo will resolve. I am still grateful we have good health insurance and that the PT copays will come out of the flexible spending account. However, I am still struggling with feeling that I am just done with all of it and I want a break for a while. As a matter of fact I would love to have just one “normal” day where I don’t have to fight so hard to overcome my disability 24/7.  Thank God sleeping is still enjoyable. J

When one is floating on the river of denial, do NOT throw them off their raft.

I went to the retina specialist today.  Scans look good. There are no bleeders. Yippee!  Then I cautiously ask/state “I am getting an injection today?.”  To which the reply “I thought we had this conversation”, “I am not comfortable letting you go without treatment”.  The only way I get to go 12 weeks between appointments is to agree to an injection.  Which at this stage of the game, I would rather not visit the Eye Center any more frequently than is absolutely necessary. Then I ignorantly asked--basically I really should have just shut up here and not dug deeper, but nooooo I had to ask the next question on my mind--“So how long will I be getting injections every 12 weeks?”  Seriously, I am a sucker for punishment.  The answer came back “Until the drug stops working”.  Oh and did I stop there, no I kept going because I was on a roll.  Well that brings me to the question “Does it stop working? And I don’t think I want to know the answer to that.”  The answer came, despite my saying I don’t want to know. “Yes, Avastin eventually stops working, regardless of your condition that you have. Avastin eventually stops working for ALL patients.  Seriously? HELLO? Did you not get the “I really don’t want to know the answer” statement?  Wow, way to pop my bubble of denial.

I guess this is where I get to practice everything I have learned over the last several years.  I have learned to live only in today and not worry about tomorrow.  I can’t predict the future. I can’t make decisions based on future ‘possibilities’. All I can do is be grateful that the drug works today, that I have the vision I have, and to live my life to the absolute fullest each day regardless of what the future holds.  Carpe Diem!  Ok, Carpe Diem tomorrow, I am tired and my eye hurts. J

My wings have arrived!

When I started this blog I had no idea that I would consider cane training let alone embrace it wholeheartedly and love it.  However, since the beginning of this eye disease I have had fear, anxiety, and uncertainty.  I did not understand that cane training would make those fears, anxieties and uncertainties disappear or become more acceptable.

When I go out walking with my cane or navigate a place I have frequented often with my cane, I now have confidence, peace, and acceptance.  I literally feel like I have wings.  Can I see any better? No. But now that I have the cane I can look up while walking.  I can walk faster and actually get a cardio workout. I can see (in general terms, not details) people coming down the path and when I get close enough I can smile and say hello, forget the fact that I can’t see their face or identify them.  I have spent the last two years staring down at my feet afraid of tripping, running into someone, or some other catastrophic event because I can’t see well.  I have shied away from getting outside and doing much of anything because it is too exhausting to manage all the fear and anxiety.  But now I want to go out rain or shine, sleet or snow, warm or cold because with my cane I am NOT afraid.  It doesn’t “see” for me but it gives me enough information to process what is critical quickly and be o.k. 

There are so many things I didn’t think of nor imagine the cane doing for me.  For example, when I am out walking and the sun is starting to dip in the sky and you get that bright light where everything is completely washed out and difficult to see even as a normal sighted person, my cane helps.  If it starts to get dark and I am out and about walking I don’t need to rush home because vision is going to decline as the light does, my cane helps.  If I am in a new location with stairs, tile floors, obstacles I am not familiar with, the cane helps.  And most importantly when my brain is just tired of all the visual inputs I can close my eyes and continue to walk and my cane helps. 

I have missed two years’ worth of activities around me because I was so busy staring at the floor. I am looking forward to observing, to the best of my ability, all that is around me. If you have an eye condition that causes low vision, no matter how low, I would recommend you try it.  You can always do an evaluation and be assessed on whether it would help you or not, but take it from me you’ll be glad to just have the knowledge of what it “can” do for you.  I thought of about 10% of the things the cane could help me with and I had no idea of the 90% it would give me.  This has been by far the greatest gift ever.

Freedom, it comes in the most unusual places

I have been writing lately a lot about cane training.  It is the last thing that I have done to complete all my adaptive training for this new reality called “low vision”.  There are a lot of different emotions that come with low vision: grief, fear, frustration, exhaustion, to name a few.  When I started the training I thought “this will be great for once in a while” but instead I am looking forward to using it a lot more frequently than that.  It has given me a freedom that I never expected.  The very object that is a picture of my disability, a symbol to the rest of the world that “hey this person has a vision issue” has become the one thing to bring me the most freedom.  Low vision is a very hard concept to explain.  People get “blindness” but low vision or vision that changes based on light, weather, conditions, locations, etc. is a complete loss on most folks.  They “get it” in the moment you are explaining and then they’ll turn to you at a coffee shop and point to the menu board and ask “what are you going to have”? They are not clueless; they just don’t live in my eyes.  On the outside I look and behave “normal” but when you cross into those areas that are outside of my ability to “see” there are no obvious cues until I say something or one observes my struggle. (Ask my kids about a game I play on the computer where I have to use the mouse to click on a beetle…they think it is amusing to watch, because it makes my vision issue really apparent…we’ll pray for them later.) 

I have been out cane training on multiple occasions.  It has given me so much more than just comfort when the lighting is bad.  It has allowed me to look up and try to interpret the rest of my environment while affording me the luxury of “feeling” what is at my feet so I don’t trip or run into something.  It has been wonderful.  I finished my training a little over a week ago and on that day I ordered my cane.  It will be delivered next week.  No big deal right?  But I am actually feeling like Linus without his blanket.  My security is gone.  It is the most bizarre experience.  I was griping about going out walking in this miserable cold and I would have to psyche myself out for staying out 20 minutes and now I don’t have the cane and I am pining to go out walking.  What up?!  The one cool thing about the cane is even if people question why I have it when they can’t see any outward signs of my issues, if I do trip or run into something there is an instance “Oh, now I see why she has the cane.”  However, if you are particularly snarky I might beat you with it. J