Guide dog for the blind-ish

Blogger with her guide dog

Thirteen years and one month ago I remember walking into the doors of Southeastern Guide Dogs. I had just turned 17, the minimum age to get a guide dog. I had about 12 degrees of vision and what was left was pretty darn perfect. I could see street lights, my reflection, and the 30 or so dogs running through the kennel fields. I watched, eyes wide, as my fellow classmates began to arrive. They used canes and sighted guides. They were mostly totals with no vision left. Several had been born blind due to complications of prematurity. One lost her sight in a suicide attempt. One man had my eye disease but seemed to have less vision than me.

What was I doing there?!

A few days in we were matched with our dogs and instantly I knew that Shay-Bay was supposed to be in my life. Even if she never guided me, her mere presence next to me gave me independence. Still. I wondered, am I blind enough for this?

Then the words I so desperately needed to hear were shared by the head of the school. “If your dog guides you across the street safely even just one time, we have done our jobs.”

They worked extra hard with Shay and I, mostly to stop me from compensating for her with the vision I had. We all knew that I was at my worst at night and that it was only a matter of time before I would have to rely on her skills all of the time.  It was challenging to shift from straining to see every last little thing I could to trusting her to see for me.

Shay was my guide dog for 5 incredible years. During that time she helped me cross countless streets safely and she is one of the main reasons I was able to accept my vision loss and embrace the role that disability would play in my life.

The day Shay retired was horrible. We were walking across an intersection and she just stopped. She refused to go any further with her harness on and after I took it off the only direction she would go was home. She never worked again.

When it first happened I couldn’t deal with the thought of having another dog by my side. Doubts about if I was truly blind enough began to resurface.

I went a month or so facing the world on my own and little by little I lost the independence she had given me. My shoulders started to slump as I stared at the ground searching for obstacles. I stayed home where I felt safe instead of venturing out. I began to realize that I may not be blind enough, but I may not be sighted enough to go it alone.

A couple of months later O’Malley became my boy. He was totally different from Shay and we took a long time to connect. When we finally did, it was a crazy, beautiful bond. He didn’t love to work as much as Shay did but he was so good at his job and loved being a goofball out of harness.

He’s 8 now and is a silly puppy stuck inside an old man’s body and that old man body is starting to not want to work. For many months he’s hesitated getting into harness but has seemed ok once we got going. I think just getting to go with me was incentive enough to deal with working.

This week though, when I grab his harness he walks the other direction. My excited praise and bribery with treats has been completely ineffective in convincing him to work.

I’ve been reassured that while most guide dogs will work until they are 10 or 11, it’s not unusual for dogs that work in environments like ours to retire earlier. My hope is that our journey together is far from over and that this is just a hurdle we need to overcome… but I can’t help my mind from drifting to those very same questions I had 13 years ago.

I can still see stop lights, my reflection, and the gray taking over my old boy’s face. I can cross a street, navigate stairs, and find a friend in a crowd of strangers. There are many times when I leave O’Man at home or at my desk and enjoy the total independence I can still manage in certain environments. Those are the times that I feel like a fraud and wonder if I am blind enough.

Just because I can do these things without my guide dog doesn’t mean I should. There is always an incredible amount of risk and a healthy dose of anxiety.  If a car doesn’t see me, or a friend loses track of me, if a tree limb is hanging down or a sidewalk is cracked, or If I venture too far out of my comfort zone I could easily get hurt.  There are a lot of things that I can’t do alone… Like cross a major road in traffic, navigate a large airport, or walk the streets of a big city. I trip over wet floor signs on a weekly basis.

So if my boy is done with guiding, will I get another dog?

I can’t imagine that he’d be happy staying home all day every day like Shay is. I can’t imagine 2 retired guide dogs and one working dog in my house…or sharing my bed! I wonder what it would be like to not be stared at all of the time or to have the use of both hands at all times. I wonder if I will start to withdraw, to shrink. I wonder if I am blind enough.


Maybe, baby…

Yet again I sit down to write a blog and I’m not sure where the key strokes will take me.

As promised, I’m going to share my journey of this exciting and terrifying “maybe, baby” plan.  The last few weeks at work have been incredibly trying.  A good friend of mine observed that turning thirty really has coincided with a marked change on the breadth and depth of problems I am encountering and my approach to them.  “You are an adult!” she declared.  So here I sit, feeling very adult-ish, Ed Sheeran piping through the speakers, wine in hand, pups attended to, checking work emails, mentally planning how I’m going to accomplish the 84 things I need to do tomorrow, exhausted and about 5 minutes away from a made from scratch dinner that will inevitably go uneaten because finding the energy to put it on a plate is overwhelming and my belly is full from wine… So what’s the point, right? These are the nights that as I go through the motions I fantasize about how they would be different with a kid in tow.  They would be drastically and beautifully different.

I love tangents.

Today marked an ironic culmination of the 2 year baby plan.  This morning, I had the opportunity to speak to the Mayo BioBank about my experience of going through genetic counseling. As I’ve shared with you, that experience first resulted in a positive test result.  We had pinpointed the gene causing my blindness.  And then, wait, nope… Back to square one as we learned the gene was declassified.  I shared this experience with the group this morning and how the family medical hell I’ve intimated to on this blog has presented another terrifying genetic curveball for me to consider.  So I shared.  And I didn’t cry.  And I felt confident.

The coincidence? Today also happened to be my first formal appointment with a doctor to discuss implantation. I didn’t realize the emotional roller coaster of my calendar until yesterday.

Omalley and I walked to the appointment and I was profusely sweating, less from the heat and more from the nerves coursing through my body.  I quickly checked in and almost as quickly. I got 2 years worth of questions answered.  As it happens, getting IUI is far less complicated than what I had researched.  Simply put: track ovulation, pick sperm, syringe.  So simple.  But oh so holy complex in my over analytical mind.

My plan was to take one step at a time.  See the doctor.  Get tests.  Get… Well, a myriad of other things that I thought were steps and where at each point I could take a moment to pause, reflect, and make a choice.

Obviously I can, and will, still take the time I need to make this choice.  I will say as many prayers as I can fit into that time.  I will seek the counsel of as many mom-friends as I can.  I will budget at least 10 more times.  But at the end of the day if I decide yes, I could be pregnant in a matter of 2 months.

The reality of how easy this will be has been met with waves of contrasting reactions.  First… Oh my God I can do this and do it now.  I can be a mom and see my kid.  I can do something that few would have the courage to do and that I know I am capable of.  Second, is it too easy?  Can I really do it?  Am I counting on a blindness that may take decades longer to fully set in?  Am I going to screw up God’s plans?

And third… The most quiet but powerful doubt that despite my attempts I cannot shake.  I don’t know what my genetics have in store for this kid.  My RP, my family health issues, and whatever else may arise are still unknowns and still totally out of my control.

The answers in my heart and head haven’t quite aligned yet.  It will take time.  And thank God I still have vision.  And strength and courage.  And an incredible support system pouring love into this process.


A few good men…

This week I started to receive answers to one of the many outstanding prayer requests I have. God, help me prepare for and recognize the man you have planned for me. Here’s what he showed me…

I witnessed my dad fall apart watching his wife mourn the loss of her father and pull himself back together to be her rock and the source of strength for her entire family.

i heard stories about my step grandfather who served our country in 3 wars and was remembered for his commitment to service, but more than that for his dedication and love for his family.

I shed a tear as my brother saw an older man who could barely walk trying to stand and make his way toward the casket. My brother checked to make sure I was ok on my own for a few minutes and then quietly approached the man and offered his hand.

When my rights were violated my brother stepped up and even though I could have fended for myself, he was my voice so that I could take a break.

I read the words of a husband describing his wife who is a friend of mine who also has a retinal disease. He shared about his wife’s light, humor, stubbornness, tenaciousness, and intimate struggle with going blind.

I smiled as my dad added joy to our day of traveling by bumping us to first class.

These examples are just from the last few days and have made me realize that God shows me what I should be looking for by surrounding me examples of great men. My dad, my grandfather, my brother, my friends who are incredible husbands. They are emotional. They are strong. They stand up. They speak up. They are selfless. They quietly and purposefully make the women in their lives their priority.


first comes love, then comes marriage…

Two years ago I was turning 28, my family was in the midst of medical hell, my career was growing, and the always lingering fact of blindness was on my mind constantly.  As I’ve shared before, I make decisions on where to live, work, and play based on it being accessible because of my vision impairment.  Every detail that can be planned, is planned.

One of the things I find the scariest about going blind is the possibility of not being able to see my kid’s face one day.  How on earth can I plan for that?! Now add to that fear the moments of playing catch with my friends’ kids and not being able to see the ball.  And clobbering them as I walk through the house because I didn’t see them.  And trying to explain why hide and seek isn’t a game Auntie Megan plays.  Surely there was a way to plan for this!

There was!  I began talking to my therapist, my friends, and some of my family.  What was stopping me from beating the blindness clock?  The initial reactions were to caution me… Baby fever happens to everyone at your age is my favorite.  But then, with more research and more soul-searching this notion of forming a plan to be able to see my kids before RP stole that possibility began to take shape. I was going to make a decision when I turned 30.

This is a blog about the intersection of life, love, and blindness.  I’ve really shied away from the life and love parts because the former is hectic and the latter is pretty uneventful.  This kind of love, though, this exploration into a rarely traveled path, it would be a disservice to myself not to document it.  Maybe it will even spark ideas in others about achieving things they think might never be possible.  Maybe it will elicit criticism.  Who knows.

I’m young, single, and going blind.  Having a child is a major, life-changing commitment that cannot be understood by any of us that haven’t done it.  It’s supposed to happen after marriage, right? It’s supposed to be after you have established your career, or before you waste away your prime by focusing on your career.  Life isn’t a Jennifer Lopez movie… And even she got the man.  Point being, there are ideals society has about parenthood and while I have considered all of those “should” voices, they don’t have to be my reality.

The plan: research, weigh pros/cons, explore options for two years.

The options: adoption, implantation, meet the right man and do it the old-fashioned way, or no go.

The variables: genetics, income, meeting Mr. Right (refer back to comment re: uneventful love life!), logistics, support system, and on, and on, and on.

Next month marks the end of the two year plan.  In that time I’ve done a ton of research, gotten genetic testing that gave me no answer (which was almost worse than a bad answer), budgeted and re-budgeted, longed for it, ignored it, sought advice about it, prayed for it.  It being the answer.  It being somehow knowing that I was making the right choice for me.

There are two moments that stick out to me most.  The first being this advice: don’t block your blessings.  This was said to me a year ago and nearly stopped me in my tracks.  Who was I to try and take control of God’s plan?  Who was I to think I could engineer my life to beat out the darkness?  Or maybe my planning skills, desire to nurture, and old soul were all God’s blessings preparing me for this very big decision?

The second moment happened this weekend.  A friend casually brought up “the baby plan” over lunch and asked if I had decided.  Honestly, I had purposefully been avoiding the thought of it for a couple months.  As we talked my thoughts centered on the “what if” instead of the “why not to”.

How will I be able to trust an Uber or taxi driver to drive safely with me and my kid in the car?  Will my friends be able to fit a car seat in their cars with their own growing families?

How will I respond to people when they ask who the dad is or assume I am doing this because I think 30 is too old and I’ve given up on meeting the right man so I’m rushing to have kids (ha!).

What would I do in an emergency?

Who will teach her how to drive?

I realized these questions had little to do with my blindness and more to do with logistics.  They aren’t all that different than the questions young mothers ask or moms in big cities ask.  I can plan for logistics!

The other questions… The ones you may be having about how I will see my toddler crawling and not trip over her.  Or how I will be able to see him playing too close to the street.  Those are questions in which I will get to employ my creativity, determination, and resourcefulness.  I already purchased a house on a culdesac and think attaching bells to things will become a way of life. I’m sensing a new blog… blindmomhacks.com.

The questions I can’t answer are how I will be able to imagine the exact color of blue his eyes are or know that she just gave me her first smile if I wait too long and can’t see by the time the unplanned version of my life leads to a baby.  These things are in no way connected in my mind to being able to be a great mom.  The desire to create life and the hope of helping shape another human being to do great things in this world… That’s what will make me and any mom a good mom regardless of age, income or ability.   The curl of a lip into a smile and the first step, however, I selfishly want to experience.  They are my blind bucket list.

I still haven’t decided. I actually tend to make big life choices this way.  I research, plan, and then I am still.  I wait for the moment when clarity hits and then I quickly act.

For now, I’m spending my Saturday nights reading blogs by other women who have taken mom-hood into their own hands and from moms who are blind, browsing through sperm donors, and scoping out potential dates on match.com.

There you have it.  This is one of the most transparent blogs I’ve ever written.  If I do go forward with my plan I’ll share the journey with you.  If I dont, you’ll get to continue to read my posts about blind girl moments, my hectic life, and my misadventures in love 🙂


Blind-ish

During high school I thought my destiny was to be a psychologist. I took an AP Psych class that was filled with opportunities for introspection. We took a lot of fun self-analysis tests…One in particular focused on if we were type A or B personality. I was a classic Type B. I retook the test as a psych major in college and just now for fun. On a scale of 35 (type B) to 385 (type A) I scored a 305. My first instinct? To research the validity of the test I just took and then how common it is to switch from one type to another, what it means for my life, job and family, etc. A total type A reaction. The test is valid.

Becoming type A (or OCD, control freak, micromanager, or… fill in the stereotype) presents an interesting challenge for me as a person with a progressive eye disease. According to doctors 20 years ago I should be totally blind by now. If you look at the studies today they say there is no way to predict the progression of vision loss. When reading the latest research there is hope that I may never be totally blind or better yet, that my vision loss might be reversed.

What is a control freak to do with an unclear prognosis? Welcome to my secret fixation of the last few months.

I feel most comfortable when I can anticipate and plan. As a blind-ish person I don’t know if there is any other way to be. I mean, how else can you ensure that you don’t run out of tampons?!

So, my type A mind wants to know the plan. So much so that I’ve ended up down a very strange train of thought. You ready for it? “I wish it would just hurry up and happen already.”

My first, very visceral counter-thought to that is that of course I don’t want to be totally blind. Sorry if this offends anyone who is… but I would absolutely, 100% choose a life in which I had full vision. However, that is not the life that I have and I’m good with that.

Being blind-ish and sort of sighted is a weird limbo to be in. I have a guide dog that I sometimes need and sometimes don’t. I can read, except when I can’t. I can see a smile, but not the expression in someones eyes at the same time. I can’t drive, but I can see the road. I crave light so that I can see but am in pain if the light is too bright. I look “normal” (I hate that word) but the disease in my eyes is anything but normal. I advocate for and identify as a person with disabilities but sometimes wonder if I’m really one of them in the way people who have progressed worse than I am are.

I don’t want to miss one single thing that God has in store for me to see but I also don’t feel comfortable in flux.

I just read a book written by a woman with Usher syndrome that I was lucky enough to meet several years ago. Her mantra is “breathe in peace, breathe out fear”. At the heart of wanting to hurry up the end result is the desire to control the fear. To plan for the unknown. I mean, how bizarre is it to want to hurry up blindness?! Obviously I don’t want that. I know God and genes and disease process and environmental factors control the end game. I just want a say-so. I want to be in control of what is in store for my body and my life.

Usually I wait to write a blog post until I’ve already learned a lesson or achieved a new level of self-awareness. Not this time. Today I’m just putting my crazy out there and hoping you guys can appreciate it 🙂


If I wasn’t blind…

In the last 20 years I’ve given a lot of thought to what life would be like if I hadn’t been born with retinitis pigmentosa.  I once shared this train of thought with a well-meaning friend who said “I think you would be meek”.  I was surprised by her conclusion and quite frankly, I was offended.  I was in my early twenties at the time and hadn’t yet embraced the defining role that my disability played in shaping my life but I certainly thought that my destiny was not simply a result of RP.  

But what if it had never happened.

In order to begin to dissect the impact of blindness on me, I have to go back to the truly defining moments in life when blindness mattered.  

The first would be PE classes.  Wow, those sucked.  I remember being hit in the face during a dodgeball game in 5th grade.  The PE teacher told me to walk it off.  Instead, I cried it off.  Meek, right?  After that, I pretty much gave up on gym and embraced being that awkward kid that never dressed out and instead walked the track with the other slightly odd kids.  

Those walks around the track are where I met my friend Kate.  She and I bonded over miles of asphalt during my freshman year and in the 15 years since, Kate has taught me through example how to overcome life’s hurdles while keeping God at the center of life.  

If I hadn’t been going blind I probably wouldn’t have been a cutter.  Cutting defined most of my teenage years.  It was painful and fulfilling and sad and exhilarating all at the same time.  If I hadn’t been a cutter I wouldn’t have learned that finding a way to embrace the things I can control can make the things I can’t control a little less scary.  I am in no way advocating cutting.  Learning how to stop cutting was extremely challenging and taught me how to focus on healthy ways to gain control while part of my body was being assaulted by disease.  It was a great lesson but there are many other ways to learn it.

My self-harm habits were extremely unfair to my family and friends.  Through the discovery and overcoming of that I found out that the family I was born with had unconditional love for me.  I also realized that I was not alone.  Many of my friends at the time secretly shared the same addiction but for very different reasons.  I won’t name them and we aren’t all very close anymore but they made being different more normal.  A few of my friends figured out what I was hiding.  I scared them.  I hurt them.  I fought them tooth and nail to try and make them keep my secrets… to try and make them understand.  I forced them to deal with very adult problems at a very young age.  Sometimes I have nightmares about that time in my life.  When I see Rachel and Shannon and their families I’m keeping another secret.  I’m secretly thanking God that they didn’t keep quiet.  That they didn’t enable me.  It is because of their strength that I’m here and stronger.  They know what it took for me to move past that time in my life.  That is not meek.

As I transitioned into being an adult, more and more of my decisions where influenced by my disability.  I chose a college nearby because I couldn’t drive.  I chose a job where my mom worked because I couldn’t drive.  I got a guide dog because I was blind.  I picked apartments near jobs because I was blind.  

If I had gone away (and stayed away) from Jacksonville I wouldn’t have… ok, that’s a very long and blessing-filled decade with more people and experiences that have contributed to the strong woman I am today.

I think you get the point.

I’ve written posts before about the blessing blindness has been to me and I will certainly write more so I’m going to try not to turn this into that kind of post.  The point of this rambling reflection is to try to understand a life in which I wasn’t facing darkness. To try and imagine myself as meek.

I was raised by 3 strong parents and many more “adoptive” parents who lifted me up and had high standards for me.  That didn’t have anything to do with being blind.  I did well in school but could have done better if I hadn’t been distracted by laziness and partying.  That has nothing to do with blindness.  I’m opinionated, caring, fierce, direct, and empathetic.  Each of those qualities comes out when dealing with my disability and the life of advocacy I have chosen, but none of those things would be less entrenched in my personality if I didn’t have RP.

Or would they?

The reactions, situations, individuals and opportunities that having RP has elicited from me and exposed me to absolutely give me strength and a mission in life.  I’m not sure I’ll ever know what kind of person I would be if I wasn’t going blind.  I’m going to try harder to not care.  

 


No, I’m not drunk, I’m blind.

All it ever takes is a few glasses of wine and a good story to get these posts going… #blindgirlproblems

This week has been the epitome of exhaustion.  Don’t get me wrong, I’m not complaining.  Any rough days at work I have are the result of fighting {and winning} the good fight.  But exhaustion takes it’s toll nonetheless.  I normally consider dating too tiring to even attempt on top of work.

Recently though, I’ve been extremely blessed to have several friends reach out wanting to set me up with guys they know.  I consider this a huge gift.  For someone to know me and all my flaws and still want to set me up… that’s a friend understands and loves me.

Tonight was my 2nd blind date in a row and I went into it less than energized.  I was tired from the aforementioned fighting the good fight and no concealer in the world is a match for the bags under my eyes.  

I chose the location which of course was walking distance since this blind girl doesn’t drive.  We met at 7pm at which happily, and intentionally, still made it bright enough for me to see my date.

We had a great time.  I was relaxing and laughing…yet becoming more and more aware that my friend, the sun, was quickly retreating.  I had to make a trip inside for the facilities which, for a blind girl, brings an enormous amount of anxiety.  

Eventually, I mustered up the nerve to venture into the restaurant alone.  It was unfortunate that the sun was fully set.  Keep in mind, this guy still has no clue that I cannot see.  I walked from the outside patio all the way around to the front entrance instead of through the side door… because blind girls follow the light.  I know this restaurant pretty well, but even still, I found myself disoriented on the inside.  

I walked one direction and was lost.  I quickly retreated back to the hostess stand.  I swallowed my pride and channelled all of the things I tell other people with disabilities.  I asked the hostess for help finding the bathroom.

The girl was sweet, really.  She assured me that she had helped a lot of people find the bathroom.  i chuckled out loud and assured her that I wasn’t drunk… just blind.  She walked me back to the restroom area and, I think, pointed at the door to the ladies.  I smiled and thanked her as I walked confidently into the men’s restroom.

Pause for effect.

This is certainly not the first time I had made that mistake.  Luckily she stuck around long enough to laugh at what she presumed was my drunkenness and steered me to the appropriate door.

As soon as I met this guy I knew he was one of the few that could handle hearing the ‘vision’ story and I had just stumbled upon the perfect way to tell him.

To all of my blind friends who read this, here is your perfect opener… “So, I just went into the men’s restroom, but I promise, not for the reason you’re probably thinking.”

The rest is history and I can’t wait to share with you where this history may lead 🙂