Somedays it's a lonely place

Two weeks ago, I had the kind of day that reminded me of very real and certain things: one, my body is not 20 years old anymore, and two, my stroke really bit me in the ass. It can be easy to forgot how much energy our brains need to do all the daily tasks that we are asking ourselves. One day not too long ago, I was telling a friend that I was feeling really tired. I was feeling the kind of tired that I could just get into bed and be there for days and I had been feeling fatigued like that for several days. And then she replied in her sarcastic tone that I love and said, “Well, hello, you had a stroke, of course you’re tired!” (We should all have a good friend like that who brings us back to reality). We continued to talk about the concept of fatigue about how even small traumatic events can, as I said, bite us in the ass.

So, two years later I’m still battling fatigue and still trying to figure out how to manage it. Two weeks ago, that week my energy level was pretty good so I went to the gym 4 days, got a lot of things around the house, and was happy with some personal work. The following week, my brain was toast. On the Tuesday morning after President’s Day, after the kids were all on their way to school at 8, I went back to bed and slept until 10:30. Subsequently, I laid in bed for another 30 minutes, made some breakfast, rested for another 30 minutes, took a shower, got dressed and it was almost 1 in the afternoon until my day really started. Before you start to feel jealous, don’t. 

I don’t know why it took me so long to realize this, or perhaps I was still in denial with several things, but I’m pretty sure I know exactly what keeps me tired: it’s my aphasia. 

I feel like it would be totally appropriate to interrupt right now with something inspired by an old political slogan by saying, “It’s the aphasia, stupid.” Proceed....

And what actually is aphasia? Aphasia is a result of a stroke or brain injury, and affects a person's ability to communicate. If you have aphasia, you may find it hard to talk, listen/understand others when they speak, read, write, use numbers and do calculations. And for me, in addition to all that, decisions are hard and multi-tasking are almost physically impossible for me. For instance, it is almost impossible for me to write and listen to something like music, television or voices at the same time. Before you start to say, “well, I can’t multi-task either,” either you have aphasia yourself, or you have no idea what I’m talking about. Noise literally hurts. Or, “well, I have terrible grammar, too,” it’s completely different from saying that you are prone to typos. Words literally change from what is in my head to what I end up writing. For one example, in my head I will want to use the word “specifically”, but then writing it, I will write the word “necessity.” Another example is that I will speak a word aloud and I have no idea for the life of me how to spell it. And it can be a little, normal word like “such” and it would take me a few minutes to say the word over and over again until I remember how to spell that. It’s strange how your brain works - long, complicated words are so much more easier to work with than all the little words.

Just like the fatigue, I’m trying to manage and work around all those communication limitations. Obviously I am reading and writing and speaking on a daily basis, but what has changed about it all is that communication was previously so commonplace, so freely granted like water and air, a very important core of what makes us human. Everyone needs to communicate. So, something that used to be so commonplace isn’t anymore. What it is now is truly an investment or a decision. Believe it or not, that’s been hard for me to realize and to exercise it. Because I still want to communicate like I used to - speak when I want, speak and listen like everyone else, and compete at everyone else’s pace. I don’t want to take the time to read an article for 30 minutes when it used to take 15. I don’t want to have to constantly fish for the right word while writing or speaking, I just want it to be there. I just don’t it to be there. 

I invested my time and energy to write this essay so that people would not take pity on me about the stroke, but because I have to physically write things down to help resolve problems and I’m hoping that I can help other readers that are struggling with the same issues. For a long time when I would tell people that I had “issues” from the stroke, I never used the term that I had “Aphasia”. And one day it finally dawned on me that I should use the right term because using the right term is closer to the acceptance. 

And denial is a river in Egypt, right? Rrrriiiiight.

So it brings me back to my lovely friend who so wickedly and wonderfully brought me back down to reality. The aphasia can be a really lonely place somedays and I have been terribly pissed off about it. Just like my friend reminded me that I had a stroke, here’s my own personal acceptance of reality - I have aphasia and it may or may not go away. I may be like this for the rest of my life. 

Woof. What a big bite. 

Photograph of the Week

NEW YORK CITY TAXICAB

Taken by: iPhone 5s

Apps used: Mextures, Snapseed

Like everyone else, I know I've made some bad decisions in my life, but I know I've made some really good decisions, too. One of the best decisions of my life? Living in New York City in my twenties. 

Coconut Dreams

A chronicle of your life can be a daunting task. More than I ever thought it would be. Putting on top of the fact that it is literally and physically hard for me to write the exhaustion can be crippling. The good news, though is that it has really helped my language skills. But, it can turn out to be just too emotional to handle, and so I shelved the memoirs that I started to write last year for the last 7 months. It must be time for me to handle the emotion again because today I went through them again by editing and writing new pages. 

The memoirs are mostly the story about my stroke and the surrounding time in the efforts to help others, but it seemed fitting to write about life before the stroke to breathe more context into the story. Right now, I've written a couple chapters about the day of the stroke and the subsequently days at the hospital, but I've been working on a couple chapters about early life because, as I'm writing, it has been extremely cathartic and healing to write about difficult parts of your life. Hence, why I needed to stop it for a while. While it can be painful, I recommend every else to take the time to do the same. 

Here is an excerpt of the rough draft of my memories of days at the beach with my mom ---- 

_________________

Before I needed to know anything about resilience, before I knew anything about what it’s like to be a mother myself, there are some endearing memories with my mom in my childhood which would be amiss if I didn’t document them. I remember the charmed days spending my summer afternoons on the beach, and you could have found me there at any year between 1976 and 1982 dodging the jellyfish, surfing the waves with my belly board, playing hours of Marco Polo and countless jumps on the diving board.    
My mother had a part-time job at the Parks and Recreation Department in the morning and she would dutifully come home by 12:15 pm. For me, if I wasn’t at art lessons in the morning, than I would likely be in front of the T.V. watching the countless episodes of I Love Lucy, Gilligan’s Island, Brady Bunch or Three’s Company, followed by The Price Is Right, watching the hysterics of midwest housewives bidding on $6,000 cars and $150 refrigerators. When Bob Barker teased that the showcase showdown would be on next after the commercial, I knew that mom would be on her way home soon. At home, she would likely make herself a turkey sandwich with some Ruffles and a small pickle spear with a little RC soda before we would pile into the white, ’66 Ford Mustang on the days that we would take our 6 mile trek to the beach. 
For our days at the beach, we spent them at Sea Bright, New Jersey - a sliver of land full of beach clubs, vacation bungalows, condos, restaurants and bars. My parents paid a membership in one of the beach clubs called Sea Bright Bathing Pavilion (SBBP - now Chapel Beach Club). It was one of the smaller clubs of the avenue, but charming and had everything we needed. 
Coming through the front doors of the club, there was always a welcomed wind gust from the other side of the lobby, and ocean waves echoed on the walls in the room. After picking up our locker room key from an old, cranky lady who sat in the front office, I always had to walk gingerly on the slippery spanish tile floor. There were people with wet feet coming in and out between the ocean and the pool and so I always wondered why they had built the floor with such slippery tiles because I had found myself quickly, and many others, on my butt on several occasions after running through the lobby.  
We were able to store our beach accessories and bathing suits in what we called “lockers”. The lockers were actual individual changing rooms, with floors made out of wooden planks and the doors and walls made with plywood and shingles on the roof. There was no electricity, so when you needed privacy to close the door, the sun light coming through the bottom of the door was the only light to lead you to your clothes. There were rows and rows of these cozy lockers. 
After we scampered on the hot sand, we would stake our claim on the beach by stabbing the sandy earth with our umbrella. My mom always wanted to sit as close as we could to the ocean, tickling our toes by the alternating tides. Smells of the beach remind me of coconut oil, salty air, and chlorine and whenever I get a whiff of any of those I’m immediately transported onto the beach, my childhood beach, and my mind’s eye sees the childhood beach, full of virtue and purity, looming on the horizon of the Atlantic wherever I am. Sense of smell is the curator of all things abstract as we engage with our memories. So as to describe the beach, there is nothing more logical for me but to use the sense of smell to convey the scene to others. Coconut oil. Salty air. Chlorine. Smell them and you’ll know what I mean.
At the stake we claimed in the sand we situated our chairs, towels, bags, belly boards or anything else for our day of the beach. My mother usually spent most of her day reading on the beach while I vacillated between the large, Olympic-size pool and surfing the waves, timed by the lifeguards who whistled at the 40th minute of each hour to annunciate that it was adult swim, until we heard the next whistle at the top of the hour, knowing we could play again. I would play with friends from school and friends in other schools, and sometimes I played by myself and sometimes I would talk with a lifeguard. I do recall feeling lonely sometimes or from being slighted for some ridiculous pre-pubescent spat with another friend. There really isn’t much more to expound on the statement that, girls can be mean, every other female out there knows that. But I don’t know why I gave mean back sometimes, thus churning the fiendishly vicious cycle. I was extremely competitive and I’m sure the petty behavior could have had something to do with my own personality.
Although I was good at making up my own imagination on those days while I was lonely or being dismissed, days must have been very enjoyable in my mind somehow, so whether it was my creative imagination or from the fun with friends, the gauzy dreams in my mind of our days in the beach are very easy to recall.
Nice dreams. 
It was always a nice end of the day when, my bronze skin became bronzer, the sand between my toes were showered off, the salty/chlorine mixture in my dirty blonde locks were combed, and when mom was in a good mood, the day would become even sweeter when she would finally give in to my pleas to take me to Dairy Queen on the way home. I always wanted either a simple chocolate cone or a hot fudge sundae. Always. My mom always wanted a Dilly Bar. Always. And I would watch the wind through the window of the Mustang, on the road near the banks of the Navesink, quickly licking the spiraling ice cream that looked like a helix before it melted onto the cone.
Nice dreams.
Lucky dreams.

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Photograph of the Week

I thought I'd start to post my own favorite photograph from the previous week. I've been taking pictures almost daily those days - they are all on my Instagram account. There is a button on the right margin that will bring you to all the pictures on my account. And if you aren't on Instagram, you'll see the best of the best since I'll be posting one every Monday here. 

This first photograph was captured at an antique mall that I went to over the weekend. It's a picture of a large format camera and selling at $190. It was beautiful! If I had the mad money in my pocket at the time, I would've bought it in a heartbeat! 

I thought there was some irony here that I was taking a picture of a real old camera with a really new "phone". If you look closely you can see the Apple logo in the lens. I'm still amazed by what you can do with a phone these days. And truth is, I hardly call anyone anymore! 

Throwback Thursday #tbt

In late summer 2009, when my son, CJ, was just a few weeks shy of his 8th birthday, we set out together on a warm, humid day to explore the rural areas of Delaware County, Ohio to see the sights and to take pictures. At the time, he was getting curious about Mom’s camera collection and wanted to play with them. I was looking to get some inspiration to take some more photographs, and I thought, sure, why not, take him along. I had just purchased my first Digital SLR so I wasn’t using film at all, so I lent him my Pentax 35mm, a few rolls of Kodak 200 speed and off we went together. 

I think back to that day and I think I must have been a little crazy to have brought my son to my photo exploration because we really (literally) got into the weeds by parking the car along a busy highway to take pictures of a creepy abandoned motel and vacant barns, walking through high grasses and all. We had even trespassed some private property at one point! We had drove off the property in a flurry when we saw the private property signs and laughed about it all. I could say that maybe it wasn’t my best moment of motherhood, not the best shining example of safety for my son, but really, it was one of the most memorable days that I will ever remember with him. 

And believe it or not he survived without a scratch. 

Here are some of the photographs from the day. 

How the Brain Works

Try as I may to close out this blog for good and move on to something else, I can’t seemed to shake it off. It’s like Michael Corleone in Godfather III - “Just when I thought I was out, they pull me back in.” 

So here I am. Back.

I’m not going to bore you and me with a long tedious paragraph about the inception of this blog (if you feel so inclined, I encourage you to click on the right margin and peruse the several posts over the years) and I’m not even sure what I’m going to write about for future posts! The last few posts I was sporadically posting about my stroke, and then after that I kept most of my writing offline. Over the last year I have been working on a memoir about my stroke and other things, and also working on a fictional short story and a book of my photography. As of right now, all projects are incomplete, which is fine, because while the writing skills were coming back during my recovery, I was also re-acquainting myself with my love of photography. Photography has always been a huge passion for over 20 years, but the truth is I lost a lot of creativity after the stroke, physically and emotionally, so it’s really just been recently that I have regularly picked up the camera again. 

Which brings me to how the brain works.  

There is something very terrible about brain trauma - nobody would contradict it - but there is something glorious about it, too. During the times when you are contemplating the parts of your brain that you have lost and then trying to regain them, your thoughts can be turned upside down, exposing the beautiful coiling brain matter that are now oozing with musicals, operas, sonnets, books and paintings - things that otherwise never would have been created if not for the trauma. But whatever the kind of trauma you experienced, your brain tapped into your unconscious and brought it up so eerily present that it is hard to ignore and you will see things that only you will see. 

I’m still deciding whether I should use my powers for good or evil.

Truth is, it’s been terrifying and frustrating to have to deal with this new brain that sometimes works swimmingly and then sometimes works achingly slow. The bad days are really bad, and the good days are sonnets and operas and paintings. I’d love to even it all out, but I think the brain is still working on the kinks. The good news is that good days are winning over bad days. Trauma or not trauma, aren’t we all a work in progress? 

The Year that Was - 2013

Before I sweep the cobwebs in my head from tonight’s festivities and before I see the new morning light of the next brand new year ready for me to catch the world on fire, I cannot mourn the year 2013 without some serious reflection. 

Some years are better than others, and some are downright disgusting. For my life, those disgusting years were 1987, 1990, 1995, 2002, 2010, 2012 and 2013. And I use the word “disgusting” on purpose because some of the events of those years comprise things like death of a parent, health problems for my own and my relatives, unemployment, severed relationships, adolescent behavior... in other words, those were the years that cannot be forgotten. It makes perfect sense to chuck the disgusting years in a mental bucket and throw it off a bridge, and for some of those I did chuck them a long time ago, but for some of those years, it really made better sense to keep those memories alive to make me a better person.  

So here I stand, the last day of 2013, the last day of the last disgusting year on the disgusting list and why am I reflecting instead of chucking the year off that bridge? While there were plenty of ugly moments in this last year, I cannot forget them because it would be very foolish of me to not use this opportunity to gain some very important wisdom: Let it go. Let me explain... 

There was a time during this year that I realize that I cannot be in control of everything. Removing the self-imposed controller of my universe and my family, has helped to lessen some anxiety. It’s important to “let it go” because it helps to get rid of the anxiety that has been plaguing my life. It’s important to let the universe drive the bus sometimes especially when I don’t know where to take the next turn anyway. But this has been an extremely life-altering lesson that I cannot always be the director all the time and I sometimes need to walk away from someone else’s train wreck, even though it sounds apathetic and even negligent. The role of spectator is very unfamiliar for me so I’m still learning this lesson but I feel like it will help my life expectancy to ease the anxiety.

Since having my stroke a little over a year ago, the little words “let it go” can’t be more important. It is important to my good mental and physical shape. It’s important to my family. It’s important to my friends. Every January 1st that I start a new year I have all these resolutions like drinking less, volunteering more, being a better mother, painting my house, getting a new job, and making world peace. There are too many expectations that by the next year I haven’t done a thing, not knowing where to start, yelling at my kids while drinking a beer with Syria on the news behind me on the TV.  “Let it go.” I can’t do everything.

The year after my stroke, my goals became rudimentary and primal. During all of the real and unreal adult problems that continued so much through the year and last year, I’m just now realizing what the first priority is - the fact that I can even write this retrospection and read it back, is a testament to my priority. When I lost the ability to speak, write and read it took several months of grief to move onto from the phase of denial to acceptance. I’ve had a stroke, I’ve had a stroke, I’ve had a stroke. Denial is crippling. I thought I would be able to keep doing everything the same. Thank God for the acceptance.... letting it go, letting it go, letting it go. 

So looking back, this year I certainly have had some successes. To others my accomplishments would be commonplace, even myself 14 months ago. This year I re-learned how to read, I re-learned how to write, and I re-learned how to talk. As part of the recovery, I just read this book:

The fact that I even read a book at all is my proudest accomplishment this year. Because of the horrible attention span I read very slow and it is still impossible for me to read and listen to music at the same time. As for writing, I am writing so much better and on my way to writing more everyday. In fact, I’m writing everyday like it’s a job and I have a plan on completing something I am working on by the spring (hopefully!) and my husband helps me by editing all my writing. As for my speech, to me it sounds terrible, but to everyone else it sounds good. I’m not very good telling a joke anymore, which makes me very mad because I used to have wonderful rhythm for telling a joke. I know I’m being hard on myself. But It is true that I have a hole in my brain now that will never be healed. For that it is the ugly truth that I avoid any issues with a cashier or a waiter because I still have a lot of problems with arithmetic or instigating small talk with an acquaintance. I don’t know if any of those issues will ever be cured. Neither does anyone else.

Other things during the year that I completed, I published a photography book, built a vegetable garden for the first time, learned how to cook new recipes from the garden, learned how to make and can salsa and learned how to cook a family ketchup recipe and dabbled in some new art projects that I’ve never done before. There were all reasons for those things and they were all crucial for my recovery. All of it would not be without the tenacity of myself and others in my life to keep moving on and getting better. This year I am grateful for my husband Eric, my mother, my brother Michael, my in-laws from California and New York, and my kids who don’t know that all the chaos they bring around the house has helped me to get better as I work on my attention span, my speech, my multiple tasks and my better mothering skills.  

An old friend who unfortunately several years ago had a stroke, too, helped me to realize that, “Having a stroke is such a game changer in life and you will start to care less about perfection and having everything back like before”. Over this past year it has been unbearable to see a new person come alive that I didn’t want. It’s been unbearable to realize that I can’t make all my problems disappear. Every year I am going to have problems. Every year. I can’t imagine what the next new crisis will be and at the same time I imagine it all and accept it.

So this year, I’m starting this new year, 2014, as the new person, the new person that I like with all the imperfections, flaws, typos, stuttering speech and all without the anxiety and without the control and won’t it be so exhilarating to just let it ALL GO and unfold in front of me? We will see, we will see, we will see...