Facing COVID-19 in the Dark

Being visually impaired creates isolation. The COVID-19 Stay-At-Home orders amplify that isolation.
I am typically an upbeat person even in adversity, but the past two months have me feeling the blues.
Zoom, Skype, Highfive, Facetime, etc.... are great, but since I can not see the screen clearly they are pretty much a more complicated phone call to me.
Like many, the sense of loss is heavy. My beloved career at the nonprofit, No Barriers USA is coming to an end at the end of June. It breaks my heart to be furloughed from a place I called home. I gave blood, sweat, and tears to the organization for a decade. Half of that time was volunteering.
Being someone who has a disability the thought of job hunting is beyond terrifying. The statistics pre-pandemic of unemployment/underemployment was over 70%. I imagine that statistic will be close to 90% or higher post-pandemic.
The 2020 Lions Clubs International Convention was canceled due to the pandemic. The convention was to be held in Singapore. It was going to be a trip of a lifetime. It hurts my heart to lose this incredible opportunity and experience.
Although my losses have been heavy my blessings have been great.
My 52nd birthday was in March and friends showered me with kind words, cards, flowers, and gifts.
Metric Motors in Loveland, Colorado generously fixed a list of items on our aging car and gave us a gift certificate for King Soopers.
The 6NE Lions sent a check that reimbursed me for my husband's Singapore flight when United refused to do the right thing.
My little sister sends me small care packages which almost always include chocolate.
My dear friend, Michael left a bottle of hydrogen peroxide on my porch knowing it is the only solution I can use for my scleral lense.
My friend, Lorna Watts created and gave me masks to wear to keep me safe.
My little Jewish friend calls or texts me every single day to check up on me.
A stranger paid our City of Loveland bill.
An inspiring friend gave me critical advice on my Linkedin page.
Another friend offered me hourly contract work if I needed it.
I could go on and on.
I wanted to share that in this time of loss I wanted to share some gifts.
Be safe and stay strong.

December 9, 2019

Ormond Beach, Florida Sunrise

My recent diagnosis of RA, yet another autoimmune disorder has rocked my world harder than I can grasp or understand. In a lot ways the diagnoses has brought comfort and clarity. I thought I was going crazy with all the pain in my neck, back, and legs. I thought I was being a wimp and had lost all of my skills to overcome pain. Now I know there is a reason, a good reason for what my body has been screaming to me for the past couple of years. 

I spent yesterday walking the beach, splashing in the waves, soaking up the sun and reconnecting with my guardian angel, KC. Early in the day the idea that came to light was, "I can not control what my body is doing to me, but I can control what I do to my body." 

I spent the rest of the day trying to cipher out what that statement meant to me. One of the key components is that I have to keep moving. Over the past couple of years I have let the pain keep me from running, swimming, hiking, yoga, and all other things that require movement. It deeply sadness me to feel some of those things are forever gone in my future, but not all of them. My legs hurt like the devil today due to the 4.5 miles Beethoven and I walked on the beach yesterday, but I can take this pain. So, running is out, but maybe long walks are still in. Hiking is definitely out, but maybe bike riding is not. Swimming is out, but maybe paddle boarding is in? Yoga for sure can be in if I can find a class and teacher I enjoy and does not cause more damage. 

So, what do my tomorrows look like? They look a bit brighter now. 

I have accepted I can not control what my body is doing to me, but I am can control what I do to my body. 

Beauty Nails and Spa 

Alex, the owner was amazing and a treat to chat with. Beethoven was whimpering having to lie on the hard tile so Alex went in the back and produced a small rug for Beethoven to lay on. Yes, he had Alex wrapped around his not so little paw within minutes.  I wanted to share this because I forget how amazing it is to be pampered by a stranger. 

Enjoy your day and don't let the bastards get you down!

Life as a Guide Dog

Through the Eyes of a Guide Dog, Beethoven

Hello, my name is Beethoven.

.

I wanted to share my story so that you will learn about the hard work I had to endure to become my human’s, Guide.

I was born in Smithtown, New York on Long Island. I don’t remember much from those days. I do remember my Puppy Raisers. Puppy Raisers are incredible people who take puppies like me into their homes, their lives, and hearts. They make sure we are good puppies so when we grow up we will be good dogs. My Puppy Raisers are a mix of an amazing woman who lived in a prison in Georgia. I don’t know why she was in prison because she was super nice to me and taught me lots of things. On the weekends I got a pass to leave the prison with Stuart and Scott! I had to be good around them, but not as good as when I was in prison. Stuart and Scott took me on lots of adventures and took me to the doggy spa for a pampering time. They took me to shows, the park, out to eat, and tons of other super cool stuff. I practiced all my good puppy skills so that Stuart and Scott would give me treats and hugs. The treats were delicious, but the hugs were the best!

Right after my first birthday, I had to say goodbye to the nice woman in the prison and to Stuart and Scott. I was super sad, but Stuart and Scott told me that someday I would meet my human that I would be with forever. I was put into a car and we drove for thousands of miles. I did not mind too much because I love riding in the car.

When the car ride finally ended I was back on Long Island where I started. I met a super nice man, Sebastian. I liked Sebastian from the start! He taught me my right from my left. He taught me how to stop at curbs and look both ways. He put something called a harness on me and at first, I was not so sure, but I soon learned that harness meant I was going for a fun walk in the mall or in the park. We even went into the big city of Manhattan! It was super busy and noisy, but I loved it! We rode on subways, buses, and in cabs. Sebastian even put a blindfold on and trusted me to cross streets while he held onto the harness. I knew this was important so I made sure I followed all the rules.

Right after my second birthday I was taken into a room and introduced to a woman. I could tell she could not see very well so I made sure I stuck my face super close to hers. She patted me all over and gasped at my big fuzzy tail. I am still not sure what that was all about. Her name is Penn Street. At first, Penn was not overjoyed with me like every other human in my life. It was like she did not trust me even though I was trying my hardest. Is till liked her and she told me stories about a place called Colorado. My stomach flip-flopped when she talked about the high mountains we would climb. I kept waiting for her to talk about the doggy spa. Everyday all day we went for walks and challenges. We passed all of them!

Penn and I got on an airplane which is a lot like a bus and flew to Colorado. I met Moses and I saw the high mountain that I knew we would be climbing. Penn took me to work with her and introduced me to all her friends. I showed them all that I was a good dog, but Penn still did not seem to love me as much as all the other humans did, until the big truck almost splattered us! We started crossing the street by Penn’s work just like we had the previous nights on our way to catch the bus home. I was keeping my eyes out for danger when I saw a large truck that I just knew was going to run us over if I did not think fast. I leapt forward as hard as I could pulling Penn behind me. She screamed and I might have, too. The big truck made an illegal turn at too high of a speed. I am not sure how I knew we were in danger,but I knew I had to save Penn. A wonderful lady saw the whole thing and helped us to the curb. Penn was shaking all over and I might have been, too. The nice lady got a partial license plate and called the police. Penn knelt down and gave me a gigantic hug and even kissed me on my ears and on my nose. She hugged me hard for a long long time. She cried into my furry neck. I think it was so the lady did not know how upset she was, but I did not care. From that moment on Penn and I was a team and even when I am a little naughty I know Penn loves me more than any human has ever loved me.

Penn is always helping people through Lions and through her work at No Barriers. She has a lot of fun doing it. I heard she even dressed up as a Lion, but I was sleeping so I am not sure if that was just a roomer. We get to visit Lions Clubs and do fun service projects! Next year Penn will be 1VDG for 6NE. I am not sure what that means, but I am sure it will be an adventure!

And YES, we climb mountains!

Penn climbs mountains for all the humans who can’t. She climbs to raise money so that people like her have opportunities to grow up and become Lions!

 - by Beethoven

My 2019 Reading List Thus Far

When I was nine and finally was moved from the ICU to the critical care unit a wonderful nurse brought me a cassette player that was made for people who are blind and the cassette book of Little House in the Big Woods by Laura Ingalls Wilder. The gift this nurse gave me was access to the printed word. It was the first of many gifts that forever changed my world for the better. 

Currently, I "read/listen" to over 100 books every year. I download most of my books through the Colorado Talking Book Library. 

My reading list is a bit eclectic. I use reading as a way to escape, relax, and to be entertained. 

Madam Millie: Bordellos from Silver City to Ketchikan

Evans, Max. Reading time: 10 hours, 50 minutes.
Read by Danielle Marceau. A production of New Mexico Library for the Blind and Physically Handicapped, New Mexico State Library.

Colorful--and we do mean colorful biography of one of New Mexico's real characters. Harvey Girl turned hooker turned madam, Mildred Clark Cusey came to Deming, N.M. as a result of trying to help cure her older sister of tuberculosis. An astute business woman she became rich and famous using her physical charms. Sexually explicit and strong language. Some explicit descriptions of sex.

Nine perfect strangers

Moriarty, Liane. Reading time: 19 hours, 2 minutes. 

Nine people gather at a remote health resort called Tranquillum House, each for their own reasons. Among them is Frances, a romance novelist who is intrigued by both her fellow guests and the charismatic owner, while fighting the feeling she should run while she still can. Unrated. Commercial audiobook. 2018.

Long road to Mercy

Baldacci, David. Reading time: 11 hours, 11 minutes.

Three decades after a kidnapper took her twin six-year-old sister, Atlee Pine works for the FBI as the lone agent responsible for protecting the Grand Canyon. So when one of the canyon mules is found stabbed to death--and its rider missing--Pine is called in to investigate. Unrated. Commercial audiobook. 2018.

Big little lies 

Moriarty, Liane. Reading time: 12 hours, 42 minutes.

New to town, Jane--single mother of kindergartener Ziggy--becomes friends with Celeste and Madeline, who each have children in Ziggy's class. But the women are harboring secrets that lead to a disastrous school trivia night ending in multiple injuries--and one death. Strong language. Bestseller. 2014.

The hate u give

Thomas, Angie. Reading time: 11 hours, 21 minutes.

When sixteen-year-old Starr Carter witnesses the fatal shooting by a police officer of her childhood best friend, Khalil, she is afraid to speak out. But remaining quiet and safe is difficult with rising tensions between the police and the community. Violence and strong language. For senior high and older readers. 2017.

Where the crawdads sing

Owens, Delia; Campbell, Cassandra. Reading time: 12 hours, 14 minutes.

In late 1969, when Chase Andrews is found dead, the locals of Barkley Cove, North Carolina, immediately suspect Kya Clark, the so-called Marsh Girl. But Kya is not what they say. Sensitive and intelligent, she has survived for years alone in the marsh that she calls home. Unrated. Commercial audiobook. 2018.

This dark road to mercy

Cash, Wiley. Reading time: 7 hours, 55 minutes.

When sisters Easter and Ruby are placed in foster care after their mother's unexpected death, their long-estranged father, Wade--an ex-minor league baseball player--steals them away in the middle of the night. The girls' court-appointed guardian soon turns up unsettling information linking Wade to a multimillion-dollar robbery. Unrated. Commercial audiobook. 2014.

The tangled tree: a radical new history of life

Quammen, David. Reading time: 13 hours, 51 minutes.

Author of Spillover (DB 75676) and Monster of God (DB 63017) examines discoveries in microbiology, particularly the concept of horizontal gene transfer (HGT), which allows for the acquisition of genetic material through viral infection. Includes profiles of scientists Carl Woese, Lynn Margulis, and Tsutomu Watanabe. Unrated. Commercial audiobook. 2018.

On Monday a trail runner near Fort Collins, Colorado was attacked by a young mountain lion. The runner fought off and killed the lion. The story has triggered a new interest in Moses Street's mountain lion story.

Here is Moses' story on #9News last night. 

The attack took place on September 13, 1995. Emotions are still fresh and raw today.

Off the Hook Storytelling Event

Off the Hook Storytelling

January 31, 2019

The Lyric

Fort Collins, Colorado

Fuzzy

At age nine three words were branded into my being, Stevens-Johnson Syndrome (SJS). SJS is a severe life-threatening adverse drug reaction. My SJS was triggered by a lethal mix of medications after being bit by a very angry rattlesnake. It was not the rattlesnake’s fault. Neither one of us wanted to be there. Our encounter was not by accident. It was purposeful. That story is for another day.

When I was nine the fatality rate from SJS was 75%. Those who survived the initial onset were treated in burn units because SJS burns you alive from the inside out. When I was nine, 75% of my body was covered in second and third-degree burns. Yes, I looked like a monster.

My first introduction to Stevens-Johnson Syndrome was my father's voice, "Penny open your eyes, it’s time to wake up." 

I was raised in a family that you did what your parents told you to do, so I tried with all my might to do as my father said. My body was cocooned in gauze and my skin was on fire. I was on fire. My throat, my nose, my ears were raw and dry and small. 

My eyes, my eyes were on fire. 

My father repeated a little sterner, "Penny, open your eyes, it’s time to wake up."

With every ounce of strength, I could muster in my 9-year-old shattered body I tried. I forced my heavy scorched eye lids open. I cried out, but no one heard me as loud erupting applause and shouts went up all around me. I began to cry, but I had no tears. SJS permanently erased all my tears.

You see, the reason for all their joy, as I had spent a week in a drug-induced coma because a nine-year-old child could not endure the pain my body was going through. The huge medical team caring for me were certain that if, not when I woke I would have severe brain damage from the extremely high fever I was running. I would be mute, deaf, and blind. They were also certain I would spend my life on a breathing respirator and feeding tube. I had just been through a fire. All the soft tissue in my body was singed or burnt and would heal into deep scar tissue. I had been through a fire, though no flames had touched me.

My father was a blur, but I knew he was there. My father asked me, "Penny, what do you see?" 

I replied in a whisper because that is all that my parched throat would allow, "Fuzzy." 

Another uproar of laughter and cheers erupted around me. 

My father's voice boomed, "Fuzzy? She wants to name this monkey Fuzzy!" 

Little did I know he was holding a stuffed monkey in front of my face. Fuzzy became and remains one of my closest friends.

You see when I woke and said that one small whispered word, "Fuzzy", it was cause for great celebration. I could hear. I could speak. I could understand what my father was saying. I could see, or so they thought. Fuzzy understood that I was not referring to him, but he kept his mouth shut and accepted the name. 

The three words that I was branded with, Stevens-Johnson Syndrome became my new roadmap. I was told I would die if I did not follow doctor’s orders. I took huge amounts of narcotics for the pain. I had ointments and drops and salves and inhalers and …. I went from being a tom-boy who spent the majority of my life outside to being a doped-up couch potato.  I could not exert myself on any level. My heart and lungs could not expand with all the scar tissue around them. As a kid, I envisioned that angry rattlesnake coiled around my heart and lungs keeping them small and tight.

When I was 10, I was finally allowed to return to school. The kids asked me the same question my father had asked me in the ICU Burn Unit, “Penny what do you see?” For the first time, I began looking around me. Yes, everything was fuzzy, but if I focused on what I could see and not on what I couldn’t see I found I could see a lot better than what the doctors told me.  I discovered I could still pitch in the baseball games if I focused on the contrast between the catcher’s mitt and the white shirt he wore. The trouble only came when the bat made contact with the ball, so I did my best to throw strikes. 

The narcotics I was taking kept my world fuzzy and not because of my eyes. At 19 I went against doctor’s orders and spent 28 days in a rehab center to learn to live without being medicated. It was hard and it hurt a lot, but I survived. I made the choice that if my heart was going to explode or my lungs were going to implode, I would rather be standing on top a mountain, rafting a raging river, or just being the woman, I wanted to become.

My heart has not exploded, but it did have the first of many hiccups on a beautiful hike between Bear Lake and Grand Lake. I summited my first 14er after one lung collapsed which is sort of like imploding. I survived because I had incredible people around me that believed in me and pushed me when I wanted to give up. I rafted the Grand Canyon with a group of blind teenagers as their mentor even though inside I was terrified the entire trip that I would encounter another angry rattlesnake, but I did not let the fear paralyze me and keep me from a trip of a lifetime.

I even became the woman I wanted to become! I have an awesome husband and two beautiful step-daughters that I got to watch grow into amazing mothers. Yes, I am a Nana and love every second of it. I have a dream career where I get to help people who feel they are broken find a purpose and desire to be all that they want to be.

I don’t know what I did right to be standing right here tonight at this moment, but I know I did not do it alone. I had extraordinary people in my life and some of them are here tonight. You know who you are. I am not extraordinary or strong. They are the heroes of my story.

I turned 50 this year. That is extraordinary! Things are still fuzzy and it still hurts. Somedays it hurts almost too much, but every morning I wake with my father's voice in my heart, "Penny, open your eyes, it’s time to wake up." 

Guess what? I do.