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.

Amazing people

As I have travelled through this low vision thing I have had the privilege to meet some of the most amazing people.  I don’t know if it is because I now have time to really LISTEN to people’s stories or it just happens to be the people whose path I cross.  I just know that listening to others who are in varying stages of vision loss have some cool experiences, both before and after vision loss.  I know several people that have been given some awesome opportunities to volunteer and give their time to different endeavors in spite of their vision issues.  I think what is most important to me as I travel on this journey, is every story gives me hope.  It gives me hope in a future I still don’t know anything about.   I knew what I was going to do at a very young age. I knew sometime in elementary school I wanted to do something in genetics.  I studied hard in college, worked as an undergraduate researcher, did summer programs at Sandoz Crop Protection and Genentech, and then went on to graduate and get a job in biotechnology.  My degree is actually a B.S. in Biological Sciences with an emphasis in Molecular Biology and a minor in Chemistry.  I love the fields of genetics and immunology most.  I got to work for almost five years in both of those disciplines as well as protein chemistry and virology. I love science, coming up with hypotheses the process of trial and error, and determining if they will work or not.  I love to solve problems, and the more challenging the task the harder I work and the more joy I get from the process.  How ironic that I have education and training in something that is dealing with stuff on such a small scale?  It is really hard for me to completely shut the door on that part of my life.  I spent so much time planning and training for this field it is like having a limb amputated to give it up for good.  Do I know for certain that I can’t do anything related to this field?  No, I do not know that for certain.  I do, however, make a lot of assumptions based on how slow I go these days because of my disability and that there are probably a lot of normal sighted folks out there that can get the work done faster and more efficiently. I guess I have to spend more time listening and walking this journey before I know whether that door is to be shut or not. I do know what aspects I would leave behind.  I would let go of all the politics of corporate America and the bottom line being profits and not the people that the product helps. I need to focus on what I am passionate about and what I seriously would consider as a career and veer away from all the fear, politics and agendas that can bog that process down. Having a disability forces you to become minimalist, not out of want but out of necessity. Think of it like you would if you were in the wilderness and got injured.  You have to pare down everything for sheer survival. That is how living with a disability is; you have to pare all the unnecessary minutia of life and deal with just the necessities. 

Patience is paying off.

 I have had the wonderful experience of working with the folks at Colorado Department of Vocational Rehabilitation, Ensight Skills, and Center for Neurorehabilitation.  We are all working together to get the best outcome for improving my quality of life through assistive and adaptive technology.  I am finally getting my CCTV, it is on order and I should have it in the next couple of weeks.  This is the one tool (among others, but the main one) that will help me to really get my reading back.  This machine allows me to place any reading material on it and it zooms it as well as you can choose contrast for easier viewing.   As an avid reader this loss of reading through mail, newspapers, documents, you name it has been one of the hardest hits this condition has dealt me. For those who know my kids are doing online school this year know how hard this obstacle has been.  How do I do my job of learning coach effectively with this loss of reading?  Good question, I have been doing the best I can. Now things should start to get better. I will be able to get through materials a little faster.  It probably won’t be the same as having normal vision, but any improvement is better than status quo.  Then the icing on the cake is I have been invited to a Lyon’s Club Conference in Estes Park to share my experiences with having a local low vision clinic and the importance of these services accessible.

Asking for help, giving up self-sufficiency

I was the queen of self-sufficiency.  I did everything by myself and hardly ever asked for help.  I had my entire college schedule planned out before I stepped one foot on my campus and I followed it completely minus a few hiccoughs.  Guidance counselors, academic advisors, mentors, and those with wisdom were simply used to confirm I was on the right track, never once did I seek “true” guidance from any of them.  However, today I look at that previous statement and what a 180 degree difference.  Today, I rely heavily on others, not because I want to but because I have to.  I can no longer be that lone ranger doing it all myself.  And you know what I have learned?  I like it better this way.  I prefer to have the guidance and help, because I don’t always know what is best for me.  This realization started about 5-7 years ago, before all this vision stuff started getting bad.  I would have some project or task to do and when I did it myself with no help, it would take hours, days, even weeks.  Then when I would break down and admit I couldn’t do all this alone and asked for help, those projects took a fraction of the time.  I’d get things done so much quicker with others. It was so profound that I noticed in a big way.  As the years have gone on I slowly started to give up my need for complete control and started enlisting the help of others, gratefully.  I was thankful I had folks to ask for help.  In the process I have made some amazing friends, gained great mentors and wise counsel.  So when my vision started to tank, I was already seasoned at asking for help.  It still takes some time to get past the feelings of imposing on others, being a burden, and wanting to just pack up and go it all alone.  But when I push through all those feelings, the benefits are far greater when asking for help than not.  I have to approach this journey like a marathon.  I have to enlist people to stand by and encourage and spur me forward.  If a marathon runner didn’t have anyone to give them a boost along the way, I personally think they would be at a higher chance of quitting and not making it to the finish line. Asking and actually allowing others to help, seems to go against the grain of our pride and instincts, but if you stick with it the results are worth it. 

Do NOT get into a boxing ring with a kangaroo….you will not win

The boxing ring represents everything you have no control over.  It could be circumstances, people, things, anything. When I choose to fight my disability and get frustrated with the obstacles and losses, I might as well get the boxing gloves on and climb in with the kangaroo.  I end up beat up, hurting, more frustrated, and defeated.  This is all part of the process of going from my “normal” life and adapting to my new “disabled” life.  Being disabled isn’t a label or a negative connotation, it simply just is.  The disability is a reality.  You can choose to work with it, learn to live with it, or fight it. (Just an FYI you could ignore it or deny it as well, but trust me it doesn’t turn out well). I have suffered so many different losses in so many different arenas of my life that I have learned that  once in a while you have to just go have a moment.  Scream, cry, throw a mini-tantrum, do whatever you need to do to release all the pent up energy caused by dealing with the loss and then move on.  Whatever loss you have experienced you just get into the ring with the kangaroo and go a few rounds. I have gotten much better at seriously contemplating getting in these days. I consider carefully whether it is really worth it to take it up with the kangaroo.  When I accept that I can’t change my circumstances then my time in the boxing ring is greatly reduced, and I have peace. On this journey I have learned that there is nothing in this world better than peace.  For today, I will stay a respectful distance from the kangaroo and try to do what I need to do to make my life a better one in spite of my disability.