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.   

BookCon!

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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: ???

 

What Would You Do?

A few days ago, I decided run an errand for my dad as a reason to escape, for a little while, from the computer and home. After I parked my car, the song (John Legend’s All of You) that had been playing in my head all morning was finally on the radio. As I was butchering the beautiful song with my non-singer’s voice, I noticed an elderly man who walked behind and in front of my car looking confused. I decided to help him after I saw him the third time. His back was slightly hunched, but it might have curved because of the cold weather. His feet shuffled when he walked.

“Do you need any help?” I announced, but had to loudly repeat it.

He told me that he could not find his car. He talked fast and rambled, so I had to listen closely. I offered to help him locate his tan Buick, thinking what does a Buick look like? Initially, I followed him more than anything. I was concerned for his well-being. A few times he was walking in the middle of parking lot, and was too occupied searching for his car than concerned of cars entering or exiting. Many drivers, especially in parking lots, do not have the patience waiting for someone to move out of the way; one driver attempted to drive around him by slightly turning the wheel to the left. But the elderly man took a step in that direction, and I grabbed his arm and lead him to the right.

At some point, I lost track of him as he weaved in-and-out of the parked cars. I took that opportunity to run into the store, pick-up what my dad needed, and tell someone about the elderly man.

“Thank you for informing us. We will call security.”

As I was walking out of the store, I saw the elderly man standing between the doors.

“Did you find your car?”

“No. I had to come in, my hands are freezing” he responded.

“Does your car have an alarm?”

“No. I don’t think so.”

“Can I see your keys?”

I saw next to his keys was that gadget that has opened and closed car doors buttons. And an alarm button. I suggested we try looking for his car again, but using the alarm button. At this point, I was not quite sure if he actually drove to the store. He was adamant that he entered the store using the furthest entrance to the right, and that he parked fifteen spots back. But still no car found. I considered that he had forgotten he came with someone, got lost inside, and could not find his car because they had taken his friend’s or relative’s. And if I could not trace his carpool buddy, what would happen? I was about to offer him to rest his feet and warm his hands in my car, but before I could he was weaving in between cars.

As he walked between a SUV and a car, a woman asked if he was looking for his car. She was the first person to offer help us; many people could have helped, but didn’t. He mentioned the alarm trick that I had told him about, and thought it was a good idea. She started to search retracing the steps we made.

“That’s my daughter-in-law.”

“Now he thinks this woman is a relative” I told myself. At first, she did not give any indications that she knew this man. But when we met up with her, she asked him a question ending it with “Pop” or “Dad” or another name a daughter-in-law calls her father-in-law; that was confirmed. She was in the middle of the lot when I heard her yelling about locating the Buick. He probably entered the store from the middle door, and left walking out from the doors closest to him, and forgot.

I walked back to my car as they were talking, and felt better about myself than I had earlier in the day.

I thought John Quinones (host of “What Would You Do?”) was going to jump out of a car and talk to me about what I did. But he didn’t. Under the circumstances, I think I handled the situation as best as I could. I learned a lot about myself, in a short time period, that day; I also learned what a Buick looks like.

If you see someone who needs help, help them, or you can tell someone who will hopefully assist. [Security was either not called, or did not respond.]

The Kindness of Strangers…yes, kindness does exist.

Yesterday was my first appointment this year with my neurologist; I visit him three or four times a year to discuss what is new, and, of course, to evaluate my Dystonia. If you don’t know me, or haven’t read my previous posts, I am sure you’re asking yourself, or mumbling under your breath for only your dog or cat to hear, “What’s Dystonia?” Well, I usually would say (or rather type) it all out, but I don’t feel like it now. So, I’ll connect you to several websites: here, herehere, and here. (Side note: now it looks like I mispelled “here” for typing it four times in a row.)

Kindness.

A few days prior to my doctor visit, I was terribly tired during the day despite sleeping the recommended seven to eight hours at night. I decided to bring my walker with me for that reason, and also because there’s a lot of walking in the city. Yes, New York City. Against my typical stubbornness, I put myself first even if that meant I needed Rosie. Yes, my walker has a name; I tend to name inanimate objects.

As I am sure you have noticed, I tend to go a bit off topic. Back to where I was.

kind guy noticed I had difficulty maneuvering Rosie, and informed me that there are handicapped areas on certain cars. I did know that, but I was not in the mind frame to look for the handicapped symbol. Guy offered to bring Rosie to one of those cars; he walked outside of the train as I walked inside and for a second I thought I hope he doesn’t take it with him. He didn’t. I was pleasantly surprised that a complete stranger boarding a peak (8:00 am) train to work in the city would be generous with his time.

Apparently there is a kindness bug infecting a lot of city folks. Soon after meeting Guy, the conductor and two older women (traveling to Myrtle Beach) assisted me with my seating arraignment. Because Rosie doesn’t lock, and the train ride was quite rocky, I had to sit with her as she rocked back and forth. Luckily, she didn’t rock into anyone.

Navigating through Penn was a different experience since I had to search for the handicapped symbols. It felt like a game; find the symbols to get to the end. I did receive a number of looks because I do not look sick.  I am able, now, to be confident enough to look back smiling and not be bothered. I ended up on the wrong subway line; it did travel downtown to where I needed to go, but I found out that it was not handicapped or stroller accessible. (Side note: find moms and nannies with strollers, and follow them to the elevator; they have to get to the street level too.) When I realized that I would have to retrace my steps back to Penn in order to ride the subways designated for me, I became teary-eyed. It was a long trek and I had an appointment and my anxiety was racing and subway riders were looking at me as a sat on my walker asking if I was okay. I asked a transit worker if there was an elevator, knowing it did not exist; I think I needed it to be confirmed, in case there was a magical elevator behind the “Do Not Enter: ForEmployees Only” door. I told him where I was going, and how twenty or so steps were in my way. He, like Guy, said he would help and folded Rosie up and asked if I needed any help. I declined, holding onto the germ-infested handrail. I kept on thanking him. “It’s really no problem” Mr. Transit repeated to me.

People were quite courteous holding doors open for me. There was one young woman who held a subway door using a propped foot. And there was the young guy who stood up giving me the full two-seat bench on a subway ride. (There was enough room for both of us, but it was a kind gesture.) That’s the same ride that started moving when I wasn’t quite seated and bumped around a little. “Are you okay,” the young guy announced. I was okay. He didn’t have to say anything or stand instead of sitting. She didn’t need to stand clear of the closing doors.

No one had to do anything that they did for me, but they did. There really are kind, nice, and considerate people, even in New York, out in our hostile world. Thank you, thank you, thank you!

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I get by with a little help from my friends

Seeing the number of Facebook friends who like my statuses involving Dystonia, emphasizes the support that I have. It’s quite humbling, and it boosts my self-esteem that much more. I typed two sentences after being rejected, in the kindest way possible, by an interviewer. It was a mutual decision: because I have balance issues, I wouldn’t pass the required orientation. And I balance issues because of Dystonia. It was a learning experience, if nothing else. I typed those couple of sentences to focus on the positive, and I’m happily overwhelmed by the reaction I have received.

If I can affect my friends in that short amount of time with a couple of sentences, then I cannot imagine the support that I and the Dystonia community would receive when I put my talents to use and write.