Sun Shiny Day

This month marks my first anniversary living in Arizona, and I have never been happier.

I took a leap of faith, or love, when I packed my small amount of belongings into mismatched suitcases and begin a new adventure in another part of the country. I moved for opportunities, change, and health. That is what I originally said, but I now say that I moved for love; I am engaged and our wedding will be in January!

I lived on Long Island, New York in the same house since I was three years old until the fall of 2005 when I ventured to college eight hours away into the much colder weather. I have not been that much of a fan of snow; sure as a kid I loved it because of snow days and building something resembling a snowman, or trying to. But as my Dystonia surfaced, my tolerance decreased. The wind gusts, wind chill, ice, snow, smog, slush, and frigid temperatures made my bones ache incessantly. Winter kept on getting colder and more harsh than the year before; I dreaded it. I should mention that the extreme winters were matched to very humid summers. The middle ground of Fall and Spring were diminishing; and my favorite season is Fall. When the opportunity for me to move finally arose, I was anxious, but excited.

Yes, it is very hot now in Arizona! I am prepared every time I need to go out with a water bottle, sunscreen, and my sunglasses. With that being said, I take a trip to the store in the early morning or evening because then it is bearable. It is the desert, and it is summer (yes, even in September). But I look at it as a trade-off: the summer in Arizona is my version of winter in New York, just without the snow; staying indoors more often than I would like.

Most importantly, my Dystonia is more controlled now. Not only am I receiving plenty of Vitamin D, but my limbs are more flexible and I am not as achy. I am not as stressed because I think the sunshine greatly contributes to my level of happiness. And when I can manage my stress, I am also managing my Dystonia. Sure, there are other factors that combine to elevate my mood and decrease my stress, but the sun does a play a large role.

Sometimes taking an unexpected journey is just the right medicine.

Six Things My Dog Has Taught Me

I adopted Blueberry in January from the Arizona Humane Society; I was volunteering the day he came, and knew he was a special dog. I became attached, but did not leave with him right away. When I was notified that Blueberry was still there hours later, I knew I was meant to adopt him; it was fate. Ever since Blue has been my shadow. Here are some of the things he has taught me:

1. Take your time walking: The pace does not matter, the key is that I am walking.

Blue is a wonderful walker, and really enjoys his walks. Sometimes he wants to run. But he checks-in, by looking back, with me to see how I am. He is a wanderer and an explorer, and I do have to tell him to slow down because I am not feeling too good, or I cannot keep up with him. I know he knows when I am not up to par, and we walk at our own pace. But when I feel good, we breathlessly run.

2. Nap as much as needed

Odds are that Blue will be napping if he is not eating or playing. He passes out in some of the strangest positions, and occasionally snores. I am fatigued very often, especially now living in the desert in the summer, but it is something that I will need to manage. It is better that I rest than continue with errands and to-do lists because I will feel worse. And I need to not feel guilty about how much I napped, and I should be spending my time. Besides, Blue loves to cuddle.

3. Be open to new adventures

Blue loves hopping into the passenger seat for a trip around the block, to the dog store, anywhere; he is my copilot. He really does not care where we go because it is all about the ride. Before I leave my home, I always assess where I am going, what I will be doing, if I will be alone or with others, and how I am feeling. And if something is not jiving, then I will stay home creating my own adventure. Living in the moment is wonderful, but I have to listen to my body and respond accordingly. Also, for my morale, it would help if I start each day positively for whatever adventures may come.

4. Touch is the best form of comfort

Bellyrubs, back scratches, and head rubs are my dog’s favorite things. He nudges hands and arms if he is not being petted; he is an only child, so he receives all the love and he cannot get enough. It is bliss being hugged by my soon-to-be-husband. Most of the time I feel better when he holds my hand, hugs and/or kisses me. Sometimes all it takes to be centered is a familiar touch; equally gratifying is seeing how I comfort my fiance and Blue.

5. Be confident in my skin

Dachshunds are nicknamed Hot Dogs and Wiener Dogs. Some people will stare, point, and holler at the sight of Blueberry in excitement; it does not bother him since he loves people. The stride in his walk exemplifies his confidence. Sometimes I feel uncomfortable when people stare at my unbalanced walk. Yet, I am gaining more confidence and have a pep in my step. It is not always easy, but Blueberry helps me along.

6. Listening is enough

He knows. He knows when I am happy, disappointed, stressed, relieved, upset, etc. Blue will look at me as though he understands. And sometimes that is all anyone needs: to be heard. “I have Dystonia, but it certainly does not define me.” Blueberry!


Love will happen when you least expect it. I must have heard that line from friends and family hundreds of times. As much as I agreed, I wanted a mate. I wanted all of those cheesy and corny movies and songs to be associated with a real-life guy. Everyone was right; I found love when I least expected to.

I told him I have baggage: Dystonia. I told him shortly after we began talking online; I knew I had to tell him, but I feared that he would no longer feel the same way about me. And if that was the case, then he would not be the guy for me. But it was nerve-wracking thinking of the outcome. We talked about it, and he reassured me that he could not change how he felt towards me, which left butterflies flying in my stomach. Now, I laugh because I really had nothing to worry about.

He sees me: a bookworm, dog lover, volunteer who is compassionate, stubborn, unique, and caring; he does not see me as a person with a disability, but he sees Lisa.

He has been and continues to be incredibly supportive. He does his best to comfort and relax me when I am having a bad day. When I have shaky fingers, he holds my hand(s). When I have back and neck spasms, he massages. He always asks how I am, but when I have had a rough day he is more invested. He will suggest I nap when I look I tire. He will ask, not condescendingly, if I need help opening a jar, draining water after cooking the pasta, bringing in groceries from my car, and so on.

I compare our relationship to matching puzzle pieces; we are each other’s perfect fit. I am so lucky to have him in my life.

Sun, shiny day

I do not know what type of day I will have until I wake, like everyone. However, my good and bad days are determined by how stiff, or achy, or tense, or tired, unbalanced I feel which is a result of my disability: Rapid-Onset Dystonia Parkinsonism. Sure, I try to feel better when I am having a bad day, but it is not the easiest. When my fingers become stiff, I have to end whatever I was doing on my laptop; I cannot read a book because turning the page adds to my discomfort; I cannot adventure somewhere without thinking that I am too exhausted, and that it will have to wait until tomorrow, maybe. Yet, I have to try to look, think and act positively about I can do: I talk to my mom regularly (on-the-phone); I volunteer at a Humane Society; I lead a book club at a library; I walk my dog twice a day, once in the morning and the other at night, for twenty minutes each; I cook dinner for my fiance every night before he leaves for work (night shift); I am planning our wedding and decorating our new place. So, maybe some days I need to nap for awhile, and I walk a little funny, and I sometimes use a handicap parking spot, but that does not define me, not even close!

I thought I would write, since I have not in months, but I did not expect to feel better after pouring out my thoughts onto the screen. I was very tired earlier; I could not keep my eyes open. Now that I have more energy, and filtered some thoughts my day is brighter. And I live in Arizona, so it is a super bright day! I guess I need to trust my instincts more because I have been wanting to write but either Dystonia and/or Depression required my attention. When I do feel good, I will write. That is a therapeutic commitment I will make to myself.

It is a small world

To my surprise, my blog linked myself to a young man. Well, his wife discovered my blog, most likely from a keyword search of Dystonia, and sent me a wonderful comment which included her husband’s same diagnosis as myself: Rapid onset Dystonia Parkinsonism (RDP). I cannot even begin to describe the rush of butterflies and announcing “I really am not alone.”

I have so many friends who have Dystonia, but I did not know anyone who has my type, and neither did he. Although he and his wife live in another state, we will stay in contact with each other.

I cannot help to think that had I not created a blog to document Dystonia and other adventures, he and I would never have met. I am very inspired and will continue to blog, and making connections with readers. And maybe I will have contact with someone else who has RDP.

The Power of Music

Music can make us filled with joy as we sing along, dance, tap our feet, clap our hands, etc. Music, any kind, does something to the brain that triggers a rush of emotions.

I had the privilege and honor of watching first hand how music can affect an individual who cannot speak and has very limited movements. While the other nursing home residents were banging on drums and tambourines, I gave her a maraca because it would be easier for her to grasp. Initially, she just held the musical instrument listening to the others. I kept showing her how to make music by shaking it, and soon enough she was making her own music banging the maraca on her board that has phrases that she points to when she needs something. I was taken by surprise when I first heard her playing; it looked like something clicked with her, that is the best way I can describe it. She was smiling, and yelling out and enjoying herself. Her husband was so happy to see her in this light. In fact, she did not want to let go of the maraca as I was collecting the instruments.

She warmed my heart, and made me believe that anything is truly possible if you try.   



My literary friend and I attended last week’s BookCon at the Javits Center in New York. We both could not wait with anticipation and excitement brewing.

“Taking place in the publishing and cultural capital of the world, BookCon is the event where storytelling and pop culture collide. BookCon is an immersive experience that features interactive, forward thinking content” that included panel discussions, book signings, and an area for publishers.

I composed a schedule of authors that we wanted to see and listen to during panels. With so many options of whom to see and what to do, time can slip away much quicker. And since there was only one full day, it was key to make our time efficient and enjoy ourselves.

The first panel my friend and I (and other friends met me on the line; it was completely unplanned) went  to was Veronica Roth (Divergent series) having a conversation with Alex London (Proxy series). Neither of us had been familiar of London’s books, but it sounds really interesting and fresh, and we have added it to each of our to-read lists.

Then, with purchased pre-packaged sandwiches for lunch,  we saw a comedy duo that had the whole room filled with laughter. Amy Poehler and Martin Short were promoting each of their memoirs. My friend and I adore Amy Poehler, and although we sat in the second to last row, we could not believe we were in the same room with her. It was a heart-stop, holy cow moment.

After finishing our lunches in the bustling cafeteria, we eventually found Danielle Fishel’s room. We circled the same area so many times despite asking for help. I guess being annoyed enough pointed us in the right direction. Danielle Fishel, was discussing her upcoming memoir, starred as Topanga Lawrence  on the ’90s sitcom Boy Meets World, and it the spin-off Girl Meets World debuting this summer. She said that whenever she posted a picture of her and her real-life husband, “That’s not Cory. Where’s Cory?” were comments by some fans. We could not stop laughing! But we did not spend as much time as we would have like because…

We jumped to neighboring line to see Jason Segel! He was the big finale on a fantastic bookish day. We were so giddy with excitement, or maybe it was a sugar-rush from those delicious chocolate chip cookies, either way we cold not wait to get that room. Once the line started to move, it did not take too long before it stopped: the guard was allowing a certain number of people in before letting more stampede in. I was nervous that we would not be able to see him, but we made it together. Literally, the person standing behind my friend had to wait for the door to reopen. We ran to get seats, and boy did we luck out on how close we sat to the stage! Jason Segel’s children’s book, Nightmare, will be available in September, but he shared with us how he would have one recurring nightmare in particular: witches eating his toes.

I was delightfully happy that everyone was as down to earth as I had thought.

It was a wonderful way to spend an entire day with my good friend. We cannot wait for the second BookCon next year; we are on the lookout for volunteer opportunities.




“What you feel is what you are, And what you are is beautiful”

Everyday is a battle.

I try to keep positive, my attitude on the glass-half-filled side. And yet, there are moments when I break. It usually begins because I am frustrated with my Dystonic body, then it snowballs from there. 

Crying escalates my twitching and discomfort. Which only makes me want to cry out more. Then my head is throbbing, and I feel whoozy. It is quite the vicious cycle. Additionally, I am chronically fatigued. 

It takes me more energy than most to do chores, drive, work, hangout with friends, see a movie, read, etc. I always have to monitor myself, and make sure I have enough spoons.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted (The Spoon Theory, Christine Miserandino).

As I was entering data, with an organization that I am a volunteer, my fingers become stiff and it was taking me longer and longer to type the information into excel. After an hour, I had to stop. I lasted as long as I did because I like to complete given tasks, and I am stubborn.

A few years ago, not only was I working, but I was a student writing and typing assignments. I had so many essays over my college career as an English Literature student. In retrospect, I was typing at a slower pace as I advanced, most noticeable between undergraduate and graduate school. As an undergraduate I was enrolled in five classes each semester; however each semester in graduate school I took about three. I remember researching and typing a grad paper and thinking how long it was taking me to complete the task.

This thought process spills into my career, whatever that might be. Everytime I read job postings, I analyze the tasks listed to determine how long it would take me to finish, would I have any difficulty, would I be standing, sitting, or moving around, etc. 


[My fingers and shoulders are beginning to bother me, but there’s more, there’s always more. just not now. So, I’ll add on to this post, sooner than later hopefully.]

10 minute spill: giving back

Yesterday, as I drove around town I saw a free food sign in a parking lot that’s next to the fire department. Curious if any volunteers were needed, I pulled into the crowded lot and parked my car. I asked the minister, and he told me I could stay there and hand-out up to six Pepsi drinks per person. The line was quite long, but it kept moving. And everyone was so grateful. It seemed as though many were regulars and on a first name basis with the minister and other volunteers. 

It was a small act of kindness, but filled me with such joy. 

If I did not have what I have because of my parents, I would be standing on that line too because I do not make a lot of money. 

Give to others, because you’ll need help one day. 

I have been bitten…by the travel bug!

I’m at point in my life where I’m at a crossroad. Actually, there will be always be a fork in the road, and I’ll have to choose left or right. I can continue to be frustrated with the lack of progress in the job market, despite vigorously applying. Or I can choose to take control, and not wait for something to happen: Traveling.

I love to travel, especially to places I have never been before; it’s a rush, an overwhelming explorative joy. Yes, I still will be job hunting, but having a trip to look forward to makes this transitioning period easier to bear. I always hear people wish they traveled (more) when they were younger before having a career, being married, and having children: human and/or animal kind.

While I do not have much money, I plan trips to states where I know someone because they would not want me to stay in a hotel, nor do I want to. Not spending on a hotel stay is a huge savings! In fact, I think it may equal another trip.

The following is a list of new places I have traveled to (I have recently decided to make this a yearly event):

2011: Chicago (DMRF symposium)

2012: Washington D.C. (Advocacy Day) (I was here in 2005 for senior trip, but it was a different experience)

2013: Portland, OR (Dee)

2014: ???