Tools....the nitty gritty

The tools I use that have been a ENORMOUS help to me are:
For computer work: Zoomtext (TM) by Ai Squared
For reading: The Colorado Talking Book Library (CTBL) and BARD. and a Merlin CCTV.
I also have a Canon (TM) scanner and Ominpage (TM) Optical Character Reader (OCR): This tool allows me to scan any printed material into my computer and then use Zoomtext (TM) to either read to me or zoom it so I can read it.
I use OTT lights for lighting throughout my home, because they give excellent illumination and color saturation to items I am looking at.
Also you can work with an occupational therapist who will tell you how many "lumen's" need to be for your paint on your walls to fit your particular eye condition.  Then you can go the Sherman Williams (TM) and upload pictures of your interior painting project and look at the paints that are in that "lumen's" category.
Also, do not forget to work with your health care professional on getting free 411 service on your phone.  To be able to just call on my home or cell and ask directory assistance to connect me is a huge help.  I struggle with punching wrong numbers all the time.  (This is a free service with a letter from your doctor).
I have gone to the Center for Neurorehabilitation Services for driving tests and to determine that I am truly being safe behind the wheel.  They did a full evaluation including a piece behind the wheel. 
If you don't know the services in your area and are having difficulty finding information, you can email me or facebook message me and I'll send information your way.  No one with low vision should ever have to do without the services provided by various agencies and clinics.

There is reliance, and then forced reliance.

I think one of my biggest struggles is listening to other dialogue about the importance of asking for help, letting others do things for you, and relying on others.  It is a struggle because these folks get to ‘choose’ their reliance.  Since, my vision tanked I have had to rely on others for pure survival.  It isn’t a choice for me anymore, it is a mandatory.  I think this is why I get so keyed up and frustrated with my circumstances is because I am in a phase of life where there are few choices that aren’t out of pure necessity.  I have to ask for rides at night or I don’t go to an activity.  I have to ask for people to read signs and overheads for me or I completely miss out on what is being taught or conveyed.  I am at a stage where if I don’t ask for help I may get into serious trouble. No longer do I have the luxury of ‘choosing’ to ask for help with anything.  I literally have to ask or stuff will not get done. It is a blessing in that I get to let others help me.  And because there is so much limitation I have no choice to have lots of patience.  So, when there is a talk/teaching on being less “self-sufficient” and more “Christ and other sufficient” I am sorry if I roll my eyes. I know how and when to ask for help, I am just learning how to be o.k. with the “feelings” that go with this action.  It is hard not to feel burdensome.  

Update

I saw my retina specialist today.  I had another injection of Avastin (see previous posts if you don't know what this is or what it is for).  However, prior to injection my retinal scan showed much improvement from last month.  My vision is at 20/70 (and as the doc said I had a 6 line improvement of acuity). Last month it was at 20/200.  The good news is that this treatment works wonderfully for my condition as long as it is an actual blood vessel growing.  Also the fluid/blood that had accumulated was about 90% absorbed.  I guess I have greeted today with cautious optimism. It won't get much better than the 20/70 because the level was reached by an expansion of a scar that is permanent and non-reversible.  I'll take 20/70 over 20/200 any day.  Thank you God for a great outcome today.

Relax, reflect, refocus, and restart

Sometimes in life things get kind of crazy, people die, friends get sick, and my sight declines.  I used to think that I thrived in chaos.  I have since found out that only chaos thrives in chaos.  I don’t get anything done, I am not efficient, and I really can’t stand the turmoil.  Once you have found peace in your life and how to keep that peace, all the frivolous chaos makes it way out the door.  When my life has circumstances completely out of my control it is like stepping outside in a tornado.  The wind is wiping around, you can’t see, and it is dangerous.  When I can just relax and pause in the midst of circumstances, answers surface.  I don’t have to solve anyone else’s problems but my own.  However, it can be difficult to see the line dividing the two.  You really have to slow down long enough to be able to observe and take in all the information before you can make any decisions.  Once I am able to relax, I can reflect on what is my responsibility in the chaos.  I then reflect on what action I can take to move me closer to peace and farther from the tornado brewing outside.  I then refocus my thoughts and game plan.  I do the things I know that will keep me from the chaos and then restart my journey.  Life is life.  You don’t get to sign up for what, how, when or where anything happens.  You don’t get to vote on anything.  Life is what it is.  The only thing you can change about life is your attitude toward it.  My attitude today is to put one foot in front of the other because as long as make forward progress, this current circumstance will change.  It will change not because those anxieties are gone, but living in the truth and acceptance that I can’t control people, places or things.  When I am in right relationship to life, my God, and people the burden of running it all is lifted.  Today I can choose to stay inside away from the weather of life (not isolated but safe).

I live in a fish bowl, could you stop staring at my bubbles?

I was at a seminar on Thursday last week at Connections for Independent Living in Greeley.  It was on the social and emotional impact of low vision and blindness.  The speaker brought up how as low vision we end up losing a lot of our privacy.  She spoke specifically to the fact that we sometimes need people to read us written materials which can be a tad personal.  Then as I thought about it more it reminded me of what it is like now to be on my computer.  I use zoom text (magnifying software) and so my screen is always zoomed up pretty big so I can read.  However, every person casually walking by my office can read EVERYTHING from the door way, probably even from the hallway.  Also because I am not always quick to see someone in the door way, by the time I close out a page the person has probably already read half of my email, journal, pre-edited blog or whatever.  Let us just say that my kids probably have a greater command of our finances than I do.  Not that I want it that way, but because I live in this fish bowl.  It is not just my computer; it is any time I can’t quickly read or see something which leaves me with this incredible sense of being exposed ALL the time.  It is like when you are in the bathroom and someone thinks, this is the time to engage you in conversation. My kids seem to always have some major NEED when I am in a bathroom.  It is almost like a homing beacon….mom is out of the room, we can’t see her, PANIC! It feels like that, but in all aspects of life where I can’t read or see.  Thankfully, I recently have sewn some curtains to go over the glass French doors of the office for a variety of reasons, and now I can at least get a little privacy.

Gratitude

I am due for a gratitude blog.  Part of this journey’s success has been stopping periodically and thanking God for all the good stuff. I am grateful that I have insurance that pays for all my medical surrounding this condition. To be facing this journey basically 1 year and 4 months from my oldest being able to have a driver’s license.  I have wonderfully supportive friends and family who have stood by and believed in me. New World Sports in Fort Collins who sponsor tandem rides once a month for those of us with low vision.  I am grateful for my support group in Fort Collins @ Ensight Skills. The people I have met along the way on this journey. To have a low vision clinic like Ensight Skills and their knowledgeable staff that helps me figure out all these resources and programs that are available.  Seriously, I don’ know what I would do if I lived in a community without a low vision clinic.  All the materials, resources, contacts, and help I have received has been priceless.  I used to spend 10-12 hours in a day studying when I was in college and I would feel pretty exhausted.  Today, I feel that exhausted after about an hour of concentrated effort on anything.  I know some day that stamina will come back, but in the meantime I am glad for all the assistance. I am thankful that my tools are ordered and I will be able to start moving forward on retraining myself to read faster and more efficiently.  I was reminded today of when my dad was first diagnosed with cancer.  Someone told me that God will give me the strength to walk through his death, when he dies and not a minute sooner.  In other words, God doesn’t give you the strength to walk through the “not yet”, “what if”, or anything that isn’t true.  That comforted me today because I have had a lot of anxiety about “what about the day I am told I can’t drive”.  Well that day isn’t today.  I don’t know if and when that day will come and ultimately, if that day comes, when it is true, God will send the help I need and for that I am eternally grateful.

I am learning how to jump rope again.

I am on the substitute teaching list for my local school district.  Last year, a person would call and ask about my availability. I would have a chance to get to my online schedule and look up whether I could work a particular day or not.  Now it is all automated.  Which, I guess, for the district is great, however, for me it is a hurdle.  I don’t have any time (or a least not much) to get to my calendar before it gets to the next prompt asking me the next question.  As I listened to the phone ring this morning at 5:34am I realized this process is like learning how to jump rope again.  You remember when you were young and you would have to practice watching the rope go round and round.  You’d get a rhythm that you could sense when you could jump in or not.  You would watch, study, judge, and ultimately practice. But as a child you don’t have all the hang-ups as an adult.  You don’t care what your friends think, if you miss you keep trying, and you enjoy the learning process (for the most part).  These things that others can just do without thinking because it is all rote behavior, I have to relearn how to do. I am intimidated by the phone, the electronic prompts, the questions, and ultimately hoping I press the right number on the phone.  I have all the trappings of an adult, in that life and experience cause me to be very cautious instead of free. I stare at the jump rope moving in its rhythmic pattern and think: I could trip, miss, fall, or get thwacked in the head by a rope. I think you get the picture.  Things that used to just come naturally now are a new learning experience.  I just have to void my head of fear and go on the knowledge that each step I take, rope I jump, call I deal with, moves me forward in this new life of low vision.  As I have heard many times before, any mountain can be climbed or obstacles overcome by simply putting one foot in front of the other. No matter how small the steps are, you will get there.