The White Cane

The other day I was walking in Union Square when a woman bumped into me and said, “I am sorry; excuse me.” The irony to the situation is that it is usually me apologizing for bumping into someone. It was almost refreshing, but there was something different about this encounter. Normally, I would brush it off and keep walking. Today, I glanced back to see a woman in her later fifties/early sixties walking with a white cane.

This time it was me who said, “excuse me; can I ask you something?” I got up the courage to ask her how she went about securing the white cane and the training process. She was very opened and willing to share. This was a complete stranger in the middle of San Francisco with advice from one blind woman to another. We said goodbye and wished one another luck. As weird as it may sound, it was a very touching moment for me.

It’s the Same Just a Bit More Complicated

Getting from point A to B is a simple process. You can fly in an airplane, drive a car, walk, ride a bike, skateboard or scooter, take public transportation, etc. What makes this simple? You do a little research, figure out the best solution to land at your end destination, and lastly make it happen. However, when kids enter the equation, it complicates everything and this has nothing to do with being blind.

My morning: Ari decided to give us the beautiful gift of sleeping in this morning until 7:20 a.m. I thought my eyes were playing trips on me when I looked at the clock. I fell into my morning routine and realized Noah was still slumbering away and it was 8 a.m. My fabulous gift was now a thing of the past because I needed to give all my brainpower to strategically figure out how to get everyone from point A to B. The clock was ticking and time was running out.

First, I decided to be realistic and recognize there was no way in hell that Noah was making it to school on time unless I could throw him in a car. This was not an option for three reasons. It was a typical foggy San Francisco day; Ron takes the car to work; and I’m not really driving these days.

While the strategic plan was evolving in my head, it looked really messy. I continued to plow through the morning routine:

* Got everyone dressed
* Made breakfast
* Made sure everyone actually ate
* Put Noah on the potty for his morning business
* Made lunches
* Packed Ari’s bag for the nanny share
* Packed my computer bag for my afternoon meeting
* Remembered last minute it was “Sharing Day” in Noah’s class and he needed to bring something he got on vacation to share. Good thing I jogged the memory for this or else I’d be put on the “worst mommy” of the day list.

Finally, I stop and looked at my watch. Oops…it’s 9:10 a.m. and Noah starts school at 9 a.m. Walking is no longer a valid option, which screws up everything. How was I going to get everything that needed to be transported (Noah, Ari, double stroller for nanny share, Noah’s lunch box, Ari’s bag, my bag, and a box of work files) from A to B? My solution was take two trips. It was by no means efficient, but decided to take the path of least resistance.

Next, I throw a little money at the situation. I call a cab and not soon after a cab/SUV pulls up. I realize this could be the complete answer to my dilemma this morning instead of one piece of the solution. However, it required me jumping off my current course and going back inside to retrieve everything listed above to throw in the taxi. I was exhausted thinking about loading everything into the taxi and navigating two kids. I stayed on course and piled us all in the taxi.

Sigh…we are on our way to school, but now what. I call school, explained the situation, and asked if they would meet me at the side door to take Noah to class while the cab waited for me. I am sure this was an unorthodox request for them, but they were more than happy to help.

When Ari and I returned home, to our surprise, we found that Ron had not left for work. This worked in my favor, because he could drop Ari and I off at the nanny share on his way to work. It saved me a 20 minute walk with a bogged down stroller!

Ari is delivered to his final destination and I head to my meeting. I am 45 minutes early, which never happens. I am feeling quite proud having navigating quite a morning. I’m enjoying the quite morning hum in the coffee shop and writing this blog entry when my phone rings. It is the preschool to inform me that Noah has 102 fever. Wow…I moved mountains (or what felt like mountains) to get Noah to school this morning only to pick him up an hour and half later. If I had a received the morning memo that he was going to be sick, I would have left him in bed!

It is now almost two weeks later that I am finishing this post, because Noah ended up having a fever for six days. It resulted in three trips to the doctor and numerous tests with no “real” diagnosis. It was a virus!

Guess what! Ari woke up this morning with a fever. The fun starts all over again tomorrow morning as I navigate getting from point A to B with one sick kid, one healthy kid that needs to get to school, no car, etc. I’ll make a plan and obliterate about 10 times before choosing one that works for that moment in time. If the moment escapes us, we will probably need a new plan. I don’t know about you, but I am exhausted just thinking about tomorrow morning. Good night!

A Trip To The Eye Doctor

You would think after 20 years of visiting eye specialists that I could get through an appointment without crying. Just sitting in the chair triggers a familiar anxiety in my gut. It starts with a simple eye test just like the one you take at your annual eye appointment. Immediately, my imagination takes over and goes to a very dark place. I self diagnose myself and hear the doctor telling me, “the RP is progressing and it’s time to really discuss what this means for your future.”

The truth is I am nervous as hell. I keep chanting over an over the same mantra in my head, “you are tough; you can do this!” These are the same words I share with my boys every time they fall or tell me they can’t do something. It’s not always easy to practice what you preach.

After an hour of tests, I finally sit with my doctor to discuss the results. My appointment was a follow-up to check on some swelling they found in my eye, which is one of the side effects of RP. As the retinas die, they sometimes cause inflammation, which in turn impacts the quality of your vision. My doctor wanted to put me on a medication to shrink the swelling, but I am allergic to sulfa and it is a sulfa-based drug. We decided to wait it out and see if the swelling subsided on its own.

Instead of hearing the cynical words being spewed in my head my doctor says, “looking good. Your vision is holding and most of the swelling is gone.” Who knows, maybe it’s Murphy’s Law – think the worst to receive the opposite outcome. In this case, I’ll take it. Today, the tears were for nothing.

My Daydream

There are moments I long for the past and simpler times, but who doesn’t. Life has become so complicated for all of us regardless if it’s driven by society, our own stupidity or in my case a pair of eyes that are loosing steam.

I sometimes daydream about shrinking in size to be a toddler and completely dependent upon my parents. I look at my son Ari who is almost 17 months old and think, “what a great life!” The truth is even Ari at such a young age has had his share of complications. He has a non-threatening kidney problem that put him in the ER twice already and keeps him on antibiotics indefinitely. He still leads an amazing, carefree life, but it brings me back to reality that even my pint size little cherub has his plight.

My other favorite daydream is imagining myself pounding fearlessly down the ski slope at Jackson Hole in Wyoming. It’s been a long time since I felt the rush of tackling the moguls on a steep black diamond and feeling that annoying yet rewarding burn in your thighs. At the end of the day, it’s just you against the mountain.

In my hay day, I was an avid skier that could hang with the best of them. Unfortunately, my grace on the mountain has diminished over the years and I’ve moved from the blacks to blues. It’s a bit of a blow to my ego, but the new reality with my eyes quitting on me.

This winter I hope to create a “new reality” for myself and learn to ski as a “blind skier.” I don’t know much about it yet, but there is a course and it is possible.

Why Write?

I keep asking myself, “why am I writing?” “Why am I writing my story?” “What am I trying to achieve?” The answers to these questions change on any given day. So here’s my top 10 list.

1. It is cathartic.

2. It is easier to put my thoughts on paper than articulate them verbally.

3. If my story helps someone else suffering from RP even just for one second, then I have achieved success.

4. It helps fill an indescribable void.

5. It’s my silent confidant that does not judge and look at me with sad eyes.

6. It helps me keep things in perspective.

7. It gives me a venue to be mad and sad when I don’t feel like talking to anyone.

8. I enjoy writing and my eyes give me something to say…hence write about.

9. It’s an opportunity for my family and friends to virtually experience what it’s like to be walking on the edge of darkness.

10. Why not…

Reactions

Every time I share my story with a new friend or stranger it gets easier and easier. The reactions vary from surprise to silence to admiration to sadness. I recently met someone who was in a terrible bicycle accident and suffering from memory loss. We compared war stories and sang the praises of our spouses and the “load” they have undertaken as our partners.

Ron is always there for me. He listens and always manages to smooth a path for me to hop back on when I tend to lose my way. It is so scary to digest the unknown and what the future holds for us. However, there are known constants that remain intact as a foundation for us to fight, which is our family, friends and our tremendous love for one another. Without this support, it would be almost impossible to endure alone.

The Meltdown

It builds over time. You sense its presence as a small under current that boils up and then simmers down. You tell yourself again and again, “its under control; there is nothing to worry about.” However, when you least expect it – BAMM! This overwhelming and uncontrollable emotion takes control and begins to seep through your pores. It usually manifests itself via tears, sorrow, sadness and anger. I always come out the other side knowing it is only a matter of time before the next melt down.

There is always a catalyst behind the meltdowns. In this particular instance, it was an innocent “Coin Star” machine. I was taking money out of an ATM machine at the grocery store when my receipt fell on the ground. Like most environmentally conscience individuals, I bent down to pick it up. Well, it was this gesture that enabled me to collide into the machine that was perfectly in my blind spot. The jolt almost knocked me off my feet and I proceeded to have a nice headache for four days. As I look back, I probably had a concussion. It was only two days later after a dinner downtown with friends that I decided to accept a dance from a large metal pole on the side of the road. It was sad and humiliating all at the same time, but instead I shake it off and chant to myself, “I’m tough and I can handle this.”

Trustingt My Memory vs My Sight

I was asked to introduce one of the two honorees at the recent Foundation Fighting Blindness Dinner in San Francisco. It was the first time I spoke in front of close to 500 people and it was truly a surreal experience. I was just getting over pneumonia and not feeling 100%. My voice was hanging on by a thread, but I managed to pull it off.

I was worried there would not be enough light to see for me to read my speech/introduction, so I asked Ron to print a couple of copies in different fonts (just in case). At the very last minute, I decided to use the copy with the larger font. BAD DECISION. I only practiced with the smaller font copy, so I kept loosing my spot. It was amazing that I did not FREAK OUT or loose my composure. Instead, I took a deep breath, paused and spoke from memory until I found my place again. In the end, it all worked out. The pauses caused a great reaction in the crowd and worked to my advantage. Who knew!

If only my high school speech teacher could see me now. I remember that being one of the most painful classes ever and I was not even remotely close to average at delivering speeches, but instead the classic epitome of awful.
Here is a copy of my speech. Enjoy the read.

**************************************************************************************

Good evening.

My name is Lorie Hirson and it is my honor to introduce Dr. Stephen McLeod. I met Dr. McLeod through my involvement with the Foundation Fighting Blindness and That Man May See, which is the supporting foundation of UCSF Ophthalmology Department.

I am a patient of Dr. Jacque Duncan, who you just heard from, which has allowed my path to cross many times with Dr. McLeod. I was diagnosed with Retinitis Pigmentosa when I was 18 years old, but it wasn’t until very recently that I felt comfortable sharing my story and feeling I could make a difference.

The truth is while every one of us can make a difference, which is why we’re here tonight, Dr. McLeod transforms people’s lives every single day in a significant and positive way. He uses his tremendous gift as a doctor to manage and mentor a department of world-class ophthalmologists at UCSF, one the nations premier medical institutions. He teaches and educates a group of talented and up-and-coming residents who represent the next generation of innovators searching for a cure for blindness. And, he is an amazing clinician dedicated to his patients and spends countless hours on his feet in surgery giving his patients back their sight as god had originally intended.

During my first visit with Dr. McLeod, I got a sense of his extraordinary skills and the delicate hand it takes to be an eye surgeon. A small group of us were touring the UCSF Ophthalmology Department and he asked for a volunteer. He sat me down in front of a microscope and introduced me to my cataract patient, which was a bright red tomato. He handed me the needle and guided my hand under the microscope with patience and kind words. His easy coaching manner allowed my shaky hand to complete its first suture. I was terrified and it was only a tomato. I handed over the needle and Dr. McLeod showed us with ease and grace how to suture an eye. We witnessed an artist at work.

I recognize many of you may not have the pleasure of meeting Dr. McLeod personally. In addition for my wish for Dr. McLeod and his team of brilliant clinical scientists to find a cure for RP and other debilitating eye diseases, I wish that you could have the simple pleasure of sharing a conversation with Dr. McLeod. Beyond his surgical brilliance, he is a wonderful husband, father and friend. He is humble, gracious and always willing to lend a hand.

I do not consider myself a star-struck person, but every time I am in the presence of Dr. McLeod, I am in awe of what he has accomplished in the field of ophthalmology and what he is giving back to me personally, as well as for every other individual combating an eye disease.

Thank you for sharing your gift and standing up every day to give back and make a difference to improve the lives of those impacted with eye disease today, as well as reducing the burden of blindness for future generations.
Congratulations Dr. McLeod on your honor this evening.

Normal Is A Relative Word

There are moments when I forget. I forget I am living on the edge of blindness with the possibility of one day living in total darkness. My life is so fulfilling between my husband and two beautiful children that it is easy to forget. I revel in these moments. I choose to let the smiles and laughter consume me versus the fear of the unknown.

It never ceases to amaze me that I forget. I will be walking down the street on a bright, sunny day minding my own business. Suddenly, my world changes. The sun slinks away to the San Francisco fog and my sunny disposition becomes gray as I start to squint and try to see through what now are foggy lenses. My carefree days becomes a little bit more draining as I navigate through the fog trying to protect myself and others around me from a head on collision.

Emotions in my world change on a dime. You would think I am a three-year-old toddler when in reality I am 39-year-old woman.

Bumps and Bruises

I always joke that the doctor is going to think Ron is abusing me. My thighs and hips are the permanent home to a beautiful gray/yellow hue and just as one bruise is healing I am blessed to bestow another one on myself. The bumps and bruises are part of my daily life and half the time I can’t even remember how it got there in the first place.

It’s easy when they are my bumps and bruises, but it is harder to swallow when I am creating the tears on my little guys. I must admit they are tough and fearless as a result, but it still is not fair that they need to learn to live with the burden of a having mother who is going blind.

The other morning my son Ari gave a shout out at his usually waking hour, 6:30 a.m. In a sleep-induced coma, I dragged myself out of bed to make a bottle and grab him from his crib. The first smile and words (if you can call them that since he is 1 years old tomorrow) of the morning are enough to melt anyone’s heart. It was a perfect moment…until the doorframe decided to pick a fight with Ari’s head. He was not impressed and everyone in the building heard him screaming what the F&*K. Immediately, Ron was sitting up in bed confused, but understood as he heard me chanting again and again, “I am so…sorry! Please forgive me.”

Profanitites

When I was a little girl, I remember these words I did not understand slipping out of my mother's mouth. I remember cringing by the sound of her voice because I knew it meant something bad, but it wasn’t until my adulthood that I wrapped my head around their meaning.

My mother was in three terrible car accidents during my childhood and as a result, she lived her life in tremendous pain. She did her best to hide it, but there were days even her heroic bravery got kicked to the curb. These were the days when the pain manifested itself through the profanities.

Although I do not live my life in chronic pain, I experience one-off battles of pain to my body quite often. As a blind person, things sometimes just jump right out in front of you. It could be a tree branch, a telephone pole, a curb, a person, or a dog lying peacefully on the street next to its owner minding its own business.
Without even realizing what is happening, I’m tripping down a set of the stairs, ripping my pants and skinning my knee. I’m stepping off the bus straight into a pole breaking my glasses and cutting my eye. I’m cutting the doorway too close and walking straight into the metal doorframe of my office once again cutting my eye. So what do I do…I result to profanities. They are not pretty or very lady-like, but for whatever reason they seem to help the toxic anger release from my body.

Mom…I am sorry that I judged you all those years and never understand how you were living in chronic pain. Through my minor cuts and physical/emotional bruises, I finally understand.

Friend or Foe?

Right now, I place you in the foe category and you aren’t even in my life. You will attract attention and stares every time we walk down the street. It is unfair to call you foe when we have not even been acquainted, but it is a gut feeling and they say to always go with your gut. Deep down, I know it is uncertainty that makes me lash out at you.
It is inevitable. One day you will be as natural in my life as brushing my teeth and putting on shoes every morning. Maybe then I will grow to accept you knowing you have my best interest and safety at heart, white cane. In time, you will become like an annoying best friend that you just can’t shake…not that you would even want to.

Are You Rude or Just Blind?

No one thinks to ask this question upon first meeting someone. It’s really a simply formula. During the course of introductions, one party holds out their hand and the second party places their hand inside for the infamous handshake. What happens when party number two misses their queue? Party one immediately jumps to “rude.” They think to themselves, “here I am taking the time to be polite and introduce myself and for what…to be snubbed by someone I don’t even know.”
There is nothing in return, not even the slightest acknowledgement. Instead, there is an awkward stare and silence filling the air among two people who have never met before. There won’t be a second encounter to clear up the misunderstanding. “I’m blind you bastard, not rude.”

Grateful & Fearful At the Same Time

Grateful: I tell myself that I am not dying of Stage 4 breast cancer. We all have our stories and our plights in life. They come in different sizes and weights and yield different outcomes. Retinitis Pigmentosa (RP) just happens to be my plight and the end result if the clinical scientists do not find a cure is COMPLETE DARKNESS.

Fear: The dictionary defines fear as “to be afraid or apprehensive.” We all experience fear at some point in our lives, whether it is fear of losing a loved one who is sick, the sight of a snake, or a child’s need to sleep with the hallway light on. However, my first real memory of fear when it was up close and personal and staring me straight in the face was at age 18. It was the summer I graduated high school and the beginning of the next chapter of my life. Little did I know this “fear” would change my life forever.

Fear entered my life via a simple sentence comprised of eleven-words, “You are night blind and can no longer drive at night.” The room was silent and it was difficult to comprehend exactly what the doctor meant by these words. Reality struck and fear was now apart of my world. Instilled in my brain where it never inhabited before.

Prior to these words, I was living my life just like any other 18-year-old around the world – carefree and tackling life with a vengeance. Fear was not part of the equation. It is hard to explain, but I did not realize there was something wrong with my eyes. I assumed everyone saw this way. Bad assumption, I know.

If I was so wrong about my eyes, what else could I have been so wrong about. See…the fear was taking effect and having a party turning a confident young woman into someone she could barely recognize.

The fear’s first conquest paralyzed me by taking away my ability to drive at night. What would be next?

Denial to Acceptance

When you first meet me, you’d never know I was legally blind. If you met me 10 to 20 years ago, I would never have shared my secret. I wanted to blend; I didn’t want handouts; I didn’t want to be treated differently; I didn’t want people feeling sorry for me. In essence, you could call it denial.

I had enough sight to function and pull the wool over people’s eyes. However, getting by gets old and lonely, not to mention sucks the life out of you. The amount of energy it took for me to create a façade that I saw the world through the same lenses as a healthy set of eyes was exhausting. I realized it was wasted energy and questioned what was I trying to prove. I was reckless and endangering myself and recognized it was time to ask for help.

Although I have titled this entry “Denial to Acceptance,” I believe asking for help is my first step to a long and bumpy road of acceptance. This long road will also acquaint me and bring me face to face with anger, bitterness, sadness, loyalty, love, happiness and loss.