Just a quick post to share the happy news that I was awarded a first place scholarship from the National Federation of the Blind (NFB) of Washington State.

Photo Description: Marci Carpenter, President of NFBW and Jenelle Landgraf posing for a picture at the Evening Banquet.

Last weekend I attended the NFB’s state convention in Olympia, WA.  I was invited to attend as a scholarship finalist after applying for the scholarship program in early fall.  It was exciting to meet the other scholarship finalist, Jennifer Rotz, who is pursuing a degree in Education and hopes to teach at the Washington State School for the Blind.  I was instantly impressed by Jennifer’s resilient spirit and passion for teaching children.

I also enjoyed meeting a variety of other professionals at the convention, people who embody the NFB’s message of, “blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can have the life you want; blindness is not what holds you back.”

There is so much more I’d like to share about the convention, but this grad student needs to get back to studying!

On October 15th, we recognized “National White Cane Safety Day”.  In honor of this day, I wrote an article about my first time using a white cane that was published in The Mighty, and I wanted to share it with our readers as well.

Jenelle with her twin sister, both standing against a brick wall with their matching canes.

My First Time Using a White Cane to Navigate With Low Vision

My cane trainer and I had arranged to meet at a Starbucks in West Seattle, so my husband dropped me off on his way to work. I watched through the window as another car pulled into the space where his Prius had just been. A lady who looked to be about my age, in her mid 30s, stepped out wearing a cute professional-looking outfit with pretty long brown hair she had likely curled at the ends with hot rollers. She glided casually into the coffee shop to order her beverage, and I felt terribly envious of this stranger. While I sat waiting to meet my cane trainer due to my deteriorating peripheral vision, I imagined her on her way to some fabulous job looking perfectly put together, and driving her own car wherever she pleased.

Her carefree independence stood in stark contrast to my need for a tool that would help me to navigate. I glared inwardly, recalling the diagnosis of retinitis pigmentosa at a young age, a disease that slowly takes away peripheral vision leading ultimately to complete blindness. I pushed the angry thoughts away as I pictured my two young children waiting for me at home, needing an independent and confident mommy to care for them.

I decided to check my email on my phone to distract myself from my jealousy. As I scrolled through emails, I heard a tapping sound behind me. My trainer, Marci, said I would be able to recognize her right away because of her long cane that would be tapping along. I quickly jumped to my feet, turned toward the woman holding the long stick and said, “Marci?” The woman ignored me, and chatted with another woman about the busy morning. My eyes traveled down to the bottom of the stick, and I realized it was a broom. She was a Starbucks employee, taking a brief break from sweeping to chat with a customer. I quickly sat back down, hoping no one had seen or heard me asking for Marci.

The real Marci arrived with her tapping cane a few minutes later. I wasn’t sure if she would be completely blind, but I could immediately tell she had some vision from the way she made eye contact with me. She looked to be in her mid-50s with gray hair peeking out of her nice summer gardening hat, white pants, and a gray shirt. We sat and chatted until Marci suggested we move outside to continue our discussion and start the training. We stood up and made our way to the door. I had my cane out for the first time, and followed Marci out the door, not sure how to use this long white piece of aluminum in my hand.

Outside I felt thankful for the pleasant weather, and enjoyed getting to know Marci as we sipped our beverages. She showed me some cane basics, and I began to think this day would be better than I had anticipated. We decided to continue our training around the neighborhood, but needed to throw our garbage away before heading out. Marci led the way back into Starbucks to find a garbage can.

As soon as we entered, I could feel all the eyes on the two women with the long white canes. My ears perked up, keenly aware of every conversation we passed. “Really makes you thankful for what you have, doesn’t it?” I heard one woman remark as we reached the garbage can. There was no doubt in my mind that she was referring to Marci and me. Another woman was joyfully explaining the canes to her small child, “…and so now you know how people who can’t see can walk around by themselves” she was saying in the same tone that I had used dozens of times to explain difficult subjects to my daughter, trying to sound casual and cheerful. And as we walked out the door, I heard an older gentleman telling his friend about a blind woman he once knew. Our two minute trip to the garbage had sparked all sorts of conversations. I knew that was not a bad thing, but it didn’t feel good either. I felt completely exposed, and I wanted to hide.

As Marci and I made our way through a West Seattle park, I saw lots of moms about my age with strollers and toddlers that reminded me of my sweet little 2-year-old boy waiting for me at home. Some eyed us suspiciously while steering their children out of our path, while others offered a friendly “Hello, ladies! Beautiful day, isn’t it?” I wondered if the friendly ones would have been friendly if we didn’t have canes, or if the suspicious ones would have looked suspicious if we didn’t have canes. “I’m just like you!” I wanted to shout at them, “If I had my stroller here, pushing Benny along while he munched on Cheerios, you would not be able to tell I am different.”

I soon learned I had to pay less attention to what everyone around me was doing, and start focusing on the task at hand. Learning to walk with a cane took more concentration and coordination than I had envisioned. Right foot goes with left tap, left foot goes with right tap, side to side sweep, but not too high. Right foot, left tap, left foot, right tap, I repeated in my head and tried to stay focused.

“You’re moving your arm too much,” Marci coached me, “You really only need to move your wrist, and keep your arm out in front of the center of your body.” This felt like a lot for me to remember and it didn’t come as naturally as I had hoped it would. Marci was kind and encouraging towards me. She also had high expectations and knew instantly if I was not doing the techniques correctly.

“You’re still moving your arm too much.” she would correct me. “You need to move your arm to the center of your body,” she continued. “You’re tapping and stepping on the same side.” It reminded me of the one time my husband had tried to give me golf lessons, correcting every element of my form. “Keep your head still,” he would say so many times, and I was convinced I was keeping it still as he continued to correct me, to the point I finally shouted “I am!” at the top of my lungs, and we both agreed golf lessons weren’t the best activity for our marriage.

Likewise, I was certain I had it all down, and then I would hear Marci behind me, “You need to keep your arm still.” I was tempted to yell “I am!” a few times, but decided that was not the best way to thank a generous person who was donating her time to teach me. Instead, I offered to treat her to lunch to show my gratitude.

As we walked to the restaurant, side by side, canes in hand, it was like a magical “parting of the red sea.” I was elated not to have to dodge people and objects. Most people just quickly stepped out of our way, avoiding us and our canes and giving us lots of space. It was such a nice change from frantically trying not to bump into bodies that seemed to appear out of nowhere. But then I heard a loud voice.

“Ladies! Ladies!” a woman to our right was yelling in a commanding voice, “There’s a bunch of construction up here to your right, so you’re going to want to move to the left!” she announced importantly as she slightly pushed me toward Marci. “We’ve got it — thank you!” Marci replied. She had warned me about the special “helpers” who would think it’s OK to touch a complete stranger. Still, I felt so uncomfortable and frustrated by this. I could see the construction and the orange cones, and even if I couldn’t, my cane and ears would have alerted me to both. On the one hand, I knew the woman was just trying to be helpful. But on the other hand, I felt as though her helpfulness was telling me “You aren’t capable of navigating with your cane.”

I also knew part of my irritability was due to the fact that I really needed to eat some food, so I was delighted when we arrived at the sandwich shop for lunch. It was a casual sandwich cafe where you ordered up at the counter, seated yourself, and then collected your food when they called out your name. These type of restaurants often gave me anxiety because there was a lot to navigate in line, reading the menu from a distance, and then finding a table while carrying a tray full of food and grabbing your own beverage. So I was pleasantly surprised when we entered and an employee immediately came over to us, saying “If you’d like to find a table ladies, I’d be happy to go over the menu with you and bring you your food and drinks.” His helpfulness felt like actual help, and the way he spoke to us was not demeaning or belittling at all. He was making it clear that he knew we were capable of finding our own table, and yet he was trying to make the process of ordering and paying for our food less strenuous.

I was exhausted by the late afternoon. It reminded me of traveling overseas, and how tired I would feel at the end of each day after trying to converse in a foreign language. During these travels, I felt a strong sense of relief when I stepped into my hotel room and could turn “off” from focusing so hard on seemingly everyday tasks. I was looking forward to that familiar feeling of relief as I boarded the bus home.

My first time felt overwhelming, and exhausting. But I definitely wanted to try again. Each time I used my cane after that day, it got easier and more fluid. I soon found myself moving through life with newfound confidence and freedom.

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My first day of school jitters reminded me of being a kid.  I barely slept a wink the night before classes began.  My younger sister is graciously allowing me to crash on her couch while I’m in Seattle for classes every 3 weeks.  And she even made me a “first day of school” sign along with all sorts of school supplies and snack goodies waiting for me when I arrived at her apartment.  Sisters are the best!!!

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One of the questions I’ve been asked most about going back to school is, “What does MSW mean?” Master of Social Work is the full title of the program, and the field has a long and interesting history (which I am totally geeking out over, so if you have a few spare hours, I’ll take you on a trip down the memory lane of social work compliments of my required course readings).  Social work is often one of those obscure fields of work that leave people who don’t work in the field wondering what exactly it’s all about. While some consider it a noble profession,  others have negative impressions based on personal experiences or observations from the media.  Some have accused the field of having a bit of an identity crisis since practitioners work in a wide variety of roles.  From my perspective, the social work field is appealing because of these vast opportunities including leadership and direct service roles, research, policy, “licensed” clinical work, and many opportunities to affect social change. Continue reading

This is one of those topics that, in an ideal world, would not need special attention.  But since we at Doublevision blog believe strongly in educating the public and bringing awareness to blindness related issues, this post is necessary.  All these points are based on real actual situations that have happened to us or someone we know.

“How did you get here?”
In a society that highly values independence, most adults have their own personal vehicle and cannot fathom otherwise.  For those who cannot drive, alternate modes of transportation are necessary, including public transportation, Uber, rides with family / friends, and walking.  We often need to put more thought into our transportation than simply pulling out the car keys, but we manage to make it work.

Joy recently had this experience at a work training in SoCal.  She walked into the training session where a handful of other teachers were sitting, waiting for the morning to begin, and the trainer noticed her guide dog. After saying hello, she immediately asked how Joy had gotten there.  While other teachers were met with “How are you?” or “Good to see you.”, Joy was asked to explain her mode of transit while the group sat listening.

(Note: If you are truly concerned with a person’s transportation needs, kindly offer a ride.)

“Do you know where you’re at?”
Chances are, yes, the person holding the cane or guide dog harness is fully aware of their location and surroundings.  Our friend Keith, fellow VIP, recently had this experience with a stranger at a train station marching up to him and asking if he knows where he’s at.  Keith, being the light-hearted guy that he is, was tempted to reply. “Do you mean like emotionally?”

(Note:: If someone looks lost, blind or sighted, the kind thing to do is say, “Hello, do you need help with directions?”)

Silently wave and keep going, hoping they sense your presence and identity.
Waving is an automatic social gesture that comes so naturally that it is often hard to control the wave and dash mentality.  But it is possible to both wave and offer a short greeting.  I honestly did not realize how many waves I was missing until my daughter was old enough to talk, and started asking things like, “Why did you not wave back to the neighbors when they passed by us?” It may not seem like a big deal to wave at a person who can’t see you anyways, but it matters.  Social customs of greeting one another are part of how we as humans feel connection in our society.  On the flipside, no need to shout and wave obnoxiously to ensure the person has your attention.

(Note: A simple, “Hey, it’s John. How’s it going?” works wonders.)

“Are you blind?”
Asking someone with a cane or a guide dog whether they are blind is like asking someone in a wheelchair if they are paralyzed. It’s not how anyone wants to be greeted, and is a very awkward conversation starter. To clarify, we are usually open to questions, especially if someone is truly curious about vision loss, but a blunt question like that right off the bat feels out of place.

How do most people with sight loss want to be greeted? The same as most people, with warmth, kindness, and a few words.

 

 

The question of “How are your eyes?” pops up from time to time at a social gathering with friends or a holiday meal with extended family.  I don’t find this question rude or intrusive, but I’m never quite sure how to answer.  Especially when the question often seems to come out of nowhere – not even closely related to the last topic of conversation.  Is the question being asked as a polite “How are you?” to which a “Fine” or “Okay” is expected.  Or is the questioner hoping for a detailed description of my last trip to the optholmologist? Did they see me accidentally dip my finger in the salsa bowl, thus prompting them to wonder how much more vision I’ve’ lost since they saw me last?

My typical response goes something like, “Well, RP is like getting older – it happens so slowly over time that you don’t notice the changes on a day to day basis.  Yes, my eyes are worse than they were 5 years ago, but I can’t exactly define how worse.” The questioner typically changes the subject as abruptly as they started it, leaving me to wonder if I’d given a clear enough answer.

A recent trip to a retina specialist at the Casey Eye Institute provides an updated answer to the “how are your eyes” question for those interested in details. Continue reading

This blog has unintentionally become a long lost friend. The kind of friend that you treasure and wish you stayed in touch with more. As the days pass by, this friend frequently comes to mind and yet the fullness of life continues to distract from finding time to connect. But this friend is always there when you return, waiting to pick right back up where you left off. Alas, so much time has passed that a quick text “hello” won’t do.

Now here we are, finally sitting down for that long awaited cup of coffee. Let’s catch up.

First off, I’m going back to school! I know, can you believe it?! Here I am teetering on the tail end of my 30’s with 2 young children, and I’m going to be a student once again. I’ll be pursuing my MSW (Master of Social Work) at the University of Washington in Seattle beginning this fall. My husband pointed out that I will be on campus with students who were born the year I graduated from undergrad. Super helpful fact – thanks babe.

Classes haven’t even started yet, and I’m already behind on my reading. I’m excited and slightly overwhelmed as I peruse the course schedule for this 3 year program. Between research papers and commuting to Seattle for classes, I will find time to give updates on my new life as a student/wife/mom/daughter/sister/friend/yogi/grant-writer/crisis-line advocate/blogger.

Now I want to tell you all about my crazy amazing summer. It started off with that retreat I’d been talking about forever. Yes, the Brene Brown Rising Strong retreat at the National Ability Center in Park City, Utah. I’m not sure if I should start with the inspiring women I met, or the 35 foot high climbing wall/ropes course, or water skiing for the first time, or breath-taking hikes, or the magical disappearing foot scrub. It truly was an experience I will cherish forever. Oh, and did I mention the group of bad ass blind women with me on this retreat? Our tribe continues to grow.

Joy and Jenelle wearing sunglasses and helmets at the high ropes course in Park City, Utah.

Next up, family camp at Enchanted Hills in Northern California. Incredible camp counselors and staff, HOT weather, the best talent show I’ve ever attended, and quality time for the Thomas/Landgraf families. It doesn’t get much better than that. You have to listen to the fun interview with Joy and family from the last day of camp.

My 4 year old son riding a horse with a camp counselor while another camp counselor leads the horse at Enchanted Hills Family Camp.

My 4 year old son riding a horse with a camp counselor while another camp counselor leads the horse at Enchanted Hills Family Camp.

I can’t leave out my trip to Portland to see my best’ies combined with a visit to the Casey Eye Institute to meet with a new retina specialist. I will have to tell you all about that visit over our next cup of coffee, as some of the details are interesting. My husband and kids picked me up from my appt, and with my eyes fully dilated, we headed straight to Mt. Rainier where we enjoyed meeting up with family. One of our beautiful hikes included a rickety bridge with a sign that read “One person at a time”. Whoever said I wasn’t a risk taker?

Jenelle standing on long thin suspension bridge.

Jenelle standing on long thin suspension bridge.

After returning from all these travels, we were blessed to have a full house of visitors throughout the remainder of July and August. If we had more time, I would tell you about all the fun we had rafting the river and SUP boarding at the lake, followed by delicious BBQs. But this cup of coffee is about done, so we’ll need to schedule another one. Hopefully it won’t be too long until next time.

Oh, and did I tell you Joy started a new job? Well, I’ll let her tell you about that.

This week, I had the pleasure of co-presenting at the Spring ADA Paratransit Conference with my friend and fellow blogger Keith Edgerton.  I felt instantly at ease alongside this seasoned public speaker as we shared our experiences of using public transportation with visual impairment.  Each year a transit authority from one of Washington’s Counties puts on the event.  39 out of 40 counties were represented at this conference held in my hometown of Leavenworth.  Talk about a short commute!

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Photo Description: Jenelle (left) and Keith (right) standing outside in Leavenworth with the Cascade Mountains in the background. Continue reading

Joy and I took a little “holiday” from blogging at the end of 2016.  We were busy enjoying a family visit together in the Northwest filled with snow shoeing, aerial yoga with our girls (including Roja!), and ringing in the new year at “pretend midnight” for the kids and then official midnight for the adults.

Photo Description: Scenic winter picture of our family snow shoeing.

Image may contain: 8 people, people smiling, mountain, sky, snow, outdoor and nature

Photo Description: Aerial yoga swings hanging from the ceiling with red mats underneath.  Roja is laying on a red yoga mat in the left corner of the picture.

Fast forward to January.  The egg nog is long gone, the holiday decor packed away, and it’s back to the routines of daily life.  In many ways it feels refreshing.  A new year offers new beginnings, and yet old habits often follow us into new years. I’m choosing to share one of my on-going challenges knowing that many of us struggle with our inner critic.  I invite you to try some self-compassion exercises along with me as a step towards a healthy 2017.

This “self-compassion lesson” begins with a story followed by some self-compassion exercises.

The sun streamed brightly through the trees, illuminating the large piles of crisp white snow as I rushed out the front  door.  I chatted distractedly with Joy on my cell while grabbing the long blue sled from the front porch and tossing my son’s after school snacks and snow gear onto it before zipping off.  Joy and I finished up our conversation as I walked the 1/2 mile to Benny’s preschool.  I quickly plucked his lunch box from the sled to prepare for his famished after school snack requests, and discovered that the bag of snow gear I had packed him was no longer in the sled.  I’ll just retrace my steps and find it on the way home, I thought, and signed Benny out of school.  I knew finding a white plastic grocery bag against white snow would be challenging, but Benny is a good little helper and I figured we’d stumble on it eventually.  But soon we were home with no bag of snow gear.  My husband. who works from home most days, had just started his lunch break and offered to take the car out and look for the missing gear.

Meanwhile, I started making lunch, but was so distracted with texting friends and neighbors about the missing items, that I forgot about the sauce simmering and burnt it to a crisp.  My husband used his entire one hour lunch break searching for the items with no luck.  I felt defeated as I recalled how much money snow gear costs, especially the brand new high quality Burton mittens that just arrived from Amazon the day before.  I could feel the tight knots in my empty stomach as I scrounged around the fridge, trying to put together a new lunch, and I snapped at my husband when he asked me a question.  He retreated back to his home office, likely relieved to escape the presence of his edgy wife.  Tears started rolling down my cheek as I thought about how much I had screwed up that day.

My pity party was interrupted by my phone ringing.  It was my Uncle Mark calling.  Joy has written about our uncle in previous posts.  He calls each day from his room at the nursing home to read us the AA prayer of the day.  Though Mark’s developmental disability keeps his mind at the age of an adolescent, his intuition often exceeds his mental capabilities.

I sniffled as I picked up the phone. “Hi, Uncle Mark.  I’m kind of having a bad day.”

I proceeded to tell him about my lost items, burnt lunch, and cranky behavior..

“I’m sorry you burnt lunch.” he stated in a flat tone.

“Thanks,” More sniffles.

“I’m sorry you lost your son’s snow pants.” he continued, still mono-tone.

A few more tears rolled down my cheek as I muttered another “thanks” into the phone.

“I’m sorry you lost your son’s hat.” he offered.  Oh man, is he going to say sorry for every damn item I lost?
I wondered to myself, feeling grumpier by the second.

“I’m sorry you lost your son’s new mittens.” he added.

I was about to mutter another bland thank you when I heard him say, “But you’re still a good mom.”  Now the hot salty tears came flooding out of my eyes as I sobbed,”Thank you, Uncle Mark! I really needed to hear that right now.”

Uncle Mark’s words cut right to the heart of why I was crying.  I wasn’t shedding tears over lost stuff, or martial tension, or burnt lunch.  I was feeling inadequate as a mom, and I was beating myself up over my mistakes.  Mark’s simple affirmation caused me to remember all that I have learned about the importance of self-compassion.  I first learned this concept from Brene Brown and Kristen Neff, and was able to put it into practice at the Daring Sisters women’s retreat last summer.  For yesterday’s fiasco, I chose to write myself a self-compassion letter, which is far less complicated and hokey than it may sound.  Other times, I’ve chosen a guided meditation.  There are lots of great tools to choose from on Dr. Neff’s website. 

Below is a step by step guide to writing a self-compassion letter that I found on Berkeley’s Greater Good In Action site.

Time Required:15 minutes. Try to do this practice once per week, or at least once per month

First, identify something about yourself that makes you feel ashamed, insecure, or not good enough. It could be something related to your personality, behavior, abilities, relationships, or any other part of your life.

Once you identify something, write it down and describe how it makes you feel. Sad? Embarrassed? Angry? Try to be as honest as possible, keeping in mind that no one but you will see what you write.

The next step is to write a letter to yourself expressing compassion, understanding, and acceptance for the part of yourself that you dislike.

As you write, follow these guidelines:

  1. Imagine that there is someone who loves and accepts you unconditionally for who you are. What would that person say to you about this part of yourself?
  2. Remind yourself that everyone has things about themselves that they don’t like, and that no one is without flaws. Think about how many other people in the world are struggling with the same thing that you’re struggling with.
  3. Consider the ways in which events that have happened in your life, the family environment you grew up in, or even your genes may have contributed to this negative aspect of yourself.
  4. In a compassionate way, ask yourself whether there are things that you could do to improve or better cope with this negative aspect. Focus on how constructive changes could make you feel happier, healthier, or more fulfilled, and avoid judging yourself.
  5. After writing the letter, put it down for a little while. Then come back to it later and read it again. It may be especially helpful to read it whenever you’re feeling bad about this aspect of yourself, as a reminder to be more self-compassionate.
 Another tip I learned from Dr. Neff is to add “I love you. I love you. I love you.” at the bottom of your letter.

Given the holiday that’s right around the corner, and the political tension in the air, I find gratitude and attitude are two words to focus on this month.

I’ll start with attitude because if that’s not in the right place, then it’s difficult to approach gratitude.  While this is by no means a ground-breaking message, I believe it is a message we need to hear again and again.

I was reminded of the impact attitude can have on life at church on Sunday.  As I scrambled into the last pew (late as usual, two rowdy kids in tow), I wondered what Pastor Denise would preach about, given the recent election.  Similar to the country at large, our congregation is divided on many topics, including the recent election.  Yet Pastor Denise chose to deliver a message about attitude.  Not exactly what I was expecting, yet exactly what I needed to hear.

The sermon reminded me of how my vision loss has given me an on-going opportunity to choose my attitude.  For example, it often takes a whole lot of juggling to figure out transportation for my kids and me, and I feel angry and discouraged that this part of my life takes so much effort.  I sometimes find myself caving to a negative attitude, grumbling ”I’ll just stay home rather than hassle with all this.”  While I allow myself to feel sad and frustrated, I don’t allow myself to stay in that space.  I choose to move forward.  I choose to participate fully in all that life has to offer.

While choosing a positive attitude is not always easy, it ultimately brings more fulfillment.

Which brings me to gratitude.  It turns out that saying “thank you” is more than just polite manners.  Expressing gratitude leads to a healthier, happier life.  All this according to research compiled by my sister, Joy.  Read all about it in her latest Crixeo article, “6 Daily Gratitude Practices That Can Change Your Life”.  Perhaps Thanksgiving should be a year round holiday – for health reasons, of course.  Bring on the turkey, gravy, and pumpkin pie! And if someone (who shall remain nameless) accidentally dumps the entire gravy bowl into the sink right as dinner is being served, choose a good attitude.

Photo Description: Turkey on a computer with a farmer walking behind him holding an ax.  The turkey has a thought bubble that reads, “I wonder what it means when the farmer unfriends me on Facebook?”

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When you live with a rare degenerative eye disease, it can feel isolating at times, as if no one understands what it feels like to be you.  Then, one day, you open up a book and read a story that makes you feel as if you’re reading your own diary.  This is how I felt when I read Look Up, Move Forward, a recent memoir by Becky Andrews.  While the connection I felt to the author drew me in, your life doesn’t need to mirror Becky’s in order for this book to captivate your attention.      

I first met the author, Becky Andrews, last fall when a mutual dream of creating retreats for blind and visually impaired women brought our paths together.  We connected online, and the majority of our correspondence focused on details for the “Daring to Own Your Story” retreats that launched last summer.  When I finally met Becky in person at the first retreat, she struck me as the type of person you just want to sit down with near a cozy fireplace and talk for hours.  The intensity of the retreat didn’t leave time for fireside chats, and I went home from the retreat wishing I had more time to get to know this energetic woman.   Continue reading