Amazing Life

I haven’t written in a while, but I have been on an amazing journey.  I am employed and have had several different job opportunities.  I was approached in the spring about working for the Blind Institute of Technology (BIT) and getting them set up on Salesforce Non-Profit Service Pack. I took the challenge, worked with awesome people who mentored me through the customization process, did a lot of online learning, and got their CRM setup. I was then hired as BIT’s recruiter.  So now, I get to recruit people and get them interviews with companies that have heard the mission of BIT and who want to help us VI’s (visually impaired) to get gainful employment.  I am honored and at times completely blown away by what a privilege this job is for me. 

Most of my readers know that I used to work in the Biotech field and that those days are gone because of vision loss.  It is really hard to face the reality that everything you were educated and trained for is gone.  However, through connections at my job I have had the privilege to learn and be trained in many different skills that allow me to work from the comfort of my home with all my assistive and adaptive technology. I have to interject here that nothing I do is menial or boring.  I have gotten to interview for contracts where those conducting the interview knew I was visually impaired and could see beyond my obstacles and see the potential I have. Through my hard work and tenacity I have proven that a VI can do a good job.  I can’t do everything, but what I can do, I can do well.

I am here to tell my fellow VI’s there is a hope and a future. You can still work and as your condition worsened (if it is degenerative) you can have an employer that is not only compassionate but really understands your struggles and is willing to work with you to become the best employee you can be.  I have met and am continuing to meet some of the most amazing, people.  In the 20 plus years I have struggled with my retinal condition I never thought I would have the life I have today.

I love my job because as a recruiter for BIT I get to tell everyone and anyone who struggles with vision issues that there really is life after vision loss and then I get to help them find a job with some of the most generous companies.  BIT is blazing the trail and the word is spreading like wildfire that our demographic is capable and willing to work hard. We are getting recognition and companies are taking notice.  BIT has made some serious inroads in showing corporate America what we as VI’s can bring to the table in spite of our struggles. I can’t wait to see what the future holds.

Life (you know everything, but your vision loss) goes on

I have just had a doozy of a start to the New Year.  My eyes, thankfully, are stable, quiet and uneventful. I say uneventful loosely because I still go in for quarterly injections regardless of what my scans show or what the doctor sees.  It seems, for me, that quarterly injections are keeping rogue blood vessels at bay and for the most part, aside from the annoying one day recuperation, my vision is stable.  Good, because the rest of life is flying off the rails and I am trying desperately to hang on. My mom was diagnosed with Alzheimer’s in spring and our Christmas comprised of finding an assisted living community for her to live in with graduated care for the years to come in the progression of this disease. I am happy to report we found a place, moved her in and she is doing fabulous.  Then around Thanksgiving my lower back issues decided to show up with screaming nerve pain down both legs and fire in my feet.  On January 15^th, I have a 2 level Co-flex done to deal with that. Again, thankfully, I am happy to report that the nerve pain is gone and other than some basic muscle aches and stiffness I am doing phenomenal.   However, even in spite of living in the solution, one needs time to just decompress from the stress.

I have spent so much of my recent life pushing through obstacles in spite of vision loss that any time “life” throws a wrench my way I feel like I have enough wrenches already, can you relate?  When you have any kind of medical/life issue that consumes a large amount of your mental and emotional energy it is really easy to feel like you got the short straw in this thing we call life.  However, at the same time I have the ability to navigate these waters better each time a new wrench is thrown my way. 

Thankfully I am surrounded by an amazing network of folks who support and encourage me.  I don’t’ have time or energy for the negative problem basking folks.  I tread with those who, on a very regular basis, pick up the tools to live and work toward the solutions in life and live a relatively peacefully and content existence.  That is what I want and that is who I hang out with, because several years ago someone simply said “hang out with the winners”. Whoever has the life you want, spend time with them and learn how they do it. The life I want is one filled with peace, contentment, wise counsel, love, grace, hope and a tool box filled with solutions to navigate life’s hard obstacles. If there is one thing I have learned with my 24 years of vision issues, is that most of time we aren't delivered from our hard circumstances we are simply given the people, tools, and grace to travel through them, if we have the humility, patience and perseverance to receive them.

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.