Tuesday, December 16, 2014

Holiday Memories And Keeping Those You Love Close

Around this time of year, families get together to embrace one another and celebrate the Holidays. For one or two days, everyone is in the same room, everyone is a unit. After every bit of food has been consumed and folks are getting ready to say goodbye, people have the same thought, "We should do this more often" or "I'll see you soon" and then those good intentions melt away and we drift to the hustle and bustle that is working and trying to stay afloat.

My Godfather passed away in April. I only have one memory of how he looked. We met when I was 21 years old, newly graduated, in a Starbucks in Lincoln Center. He was in from Vermont where he lived with his partner. He was wearing a three piece grey suit and greeted me with a smile I can still see if I close my eyes. My Godfather was an amazing man-a professor beloved by hundreds of friends (literally), a writer, and an accomplished concert violinist who spoke 6 languages! I heard much of this from hearing stories my Father told me of how he met him and how close the families were. When I was growing up, I always wondered why he didn't reach out to me, why I hadn't seen him or spoken to him on the phone but I didn't linger on that thought, I had stories to keep his memory alive. When I turned 21, my Godfather sent me a typed letter apologizing for his absence and suggested we meet in person for a long overdue hug. Since then, we sent each other cards, mine always handwritten, his always typed and signed with a fountain pen. I sent pictures and drawings over the years and provided him with news about my Dad and Grandmother. Whenever my Dad was in NY, he would call my Godfather's NY apartment in the hopes that Godfather might be visiting and they could catch up. Then, he started to email me. Oh technology!

One day before Superstorm Sandy,  my Grandmother passed. I sent him an email. Rather than respond via that, he sent his last typed letter signed with that same fountain pen. Because of the weather, I missed the funeral in Grenada. Godfather's letter was one of the only things that comforted my Father and I during that sad time. He wrote about her so beautifully citing memories that seemed so crisp they happened yesterday.  This summer, I sent him an email but he didn't respond. In my head, I imagined that he was on a European tour with his partner Jorge, or on an adventure somewhere he would tell me about in his response but, no email came. I started to think about the inevitable, his passing, but I couldn't bring myself to google his name right away. The thought of losing this man who I basically communicated with through letter and email most of my adult life scared and saddened me.

I found out Godfather passed away in April of this year. I was so angry with myself. Why didn't I send an email earlier? Why didn't I reach out? More importantly, why wasn't I told or able to go to the funeral to say goodbye? It seemed that even in death, I wasn't even given the chance to see him in person one more time. I gave my Dad the news and he was as broken up as I was. Luckily, my Godfather's partner's email address was on my his obituary. I emailed Jorge my condolences. Here was a man who I had only heard about on paper but seemed so alive through my Godfather's descriptions of him, I felt like I knew him. He immediately sent me a response apologizing for the oversight of the funeral. My Godfather passed from leukemia and it took him very fast.

After our exchange, I hoped to have some closure but I felt even more sad. Whenever someone passes, you always ask yourself the question "What if?" and go back to the "We should do this more often. I'll see you soon!" statement you made a few months prior. Days later, I received another email. Jorge had found a folder with all the letters and exchanges I had with my Godfather over the years, over 13 years of correspondence! He told me how proud he was of me and how he loved me.  While I would have rather heard this when he was alive, this has given me exactly what I needed-to know that he saw me, that we did know each other, even though from afar. Today, he is on my mind. The first day of Hannukah marks the day I would have sent him a handwritten Holiday card. Perhaps I will send him an email. Even though I know I won't get one back, it doesn't feel right to break from tradition.

I don't want this to sound like a hold your loved ones close and be thankful post and maybe it doesn't but hold your loved ones close and be thankful. You never know when the time will come when you can't say what you always wanted to but thought, it's ok...next time.

Monday, November 3, 2014

Monday Inspiration

Speak your own truth, even when your voice shakes.

In memory of Brittany Maynard

Wednesday, October 29, 2014

Happy World Stroke Day!

It's World Stroke Day!

Let's use this day to spread awareness about stroke and to celebrate strokies. Go on, give your favorite one a hug. It's their day too!

To everyone who I have had the pleasure of speaking/texting/meeting through unfortunate circumstance, THANK YOU! You continue to inspire me every day.

Amanda, I salute you.
Amber, I salute you.
Ava and Shana, I salute you.
Carrington, I salute you.
David, I salute you.
Elizabeth, John and Jack, I salute you.
Erin, I salute you.
Farah, I salute you.
Heidi, I salute you.
Jim, I salute you.
Jodi, I salute you.
Katie, I salute you.
Kat, I salute you.
Kiara, I salute you.
Lauren, I salute you.
Lena, I salute you.
Melissa, I salute you.
M Daniels, I salute you.
Mira WhiteGirl, I salute you.
Nicole, I salute you.
Paul, I salute you.
Rama, I salute you.
Stacy, I salute you.
Tamara, I salute you.
Tim, I salute you.

Monday, October 27, 2014

Affordable Care Act...But At What Cost?

I don't have a permanent job. I freelance. I temp. I have to pay for health insurance like so many of us. The Affordable Care Act was meant to provide QUALITY care to those in the same position as myself but it is failing. I pay over $500 a month for my coverage. For this amount, what do you think I get?
I should get a spa with my coverage. Mani pedis for free. A massage. No, for over $500 a month, I get to go to a clinic style office. I can't see my neurologist. I can't see my hematologist. I go to a clinic style office that isn't the cleanest. I see doctors who are "affiliated with ___ hospital" but I can't go to that hospital. Only two hospitals are covered in my plan. One in my borough and one in another borough where NO ONE dares go. I have to stay in the dusty musty not so clean clinic and pray I don't get sick from being in the room. I can't even see the doctor when I want. I have to wait months for an appointment to be with someone who doesn't know my history and asks more about what happened to me for selfish curiosities  than treating me.

Does this sound ok to you? Does this sound like what over $500 a month should get you or even $200 a month should get you or even ANYONE should get? Everyone has the right to clean places to be cared for. Everyone. Why is this such an issue?
My boyfriend went to see his new Primary Care doctor today. He was so excited to use his health care to be able to actually go and see a doctor and when he got there he was met with unsanitary conditions and even worse, medical waste gloves in the restroom in plain view for anyone to touch or take. What is going on here?? We're supposed to be getting better, living a healthier lifestyle but how can we when we can't even see people who will take our insurance? Hospitals like NYU are resorting to only taking corporate plans. I couldn't even see a doc there if I wanted to. Affordable Care Act participants shouldn't be made to feel like they are being swept under the rug. We pay more for insurance than people who are covered through their employment. Shouldn't we be treated like people too?

Wednesday, October 22, 2014

Talk About Your Medicines Month

October is The American Recall Center's "Talk About Your Medicines Month" so I thought I would tell you a little something about when I used to be on Warfarin that almost got me in serious health trouble. I got the flu in 2011. Ugh, as if recovering from a stroke wasn't enough, I had to deal with fever, chills and nausea from something that made me feel 10x worse as I was recovering. You know if you've got the flu, you don't feel like eating. Your favorite thing in the world could be sitting in front of you laced in gold and you wouldn't touch it. This was the case with me. I felt so weak and sick that I didn't even want to eat and I didn't think I was doing harm to myself. I wasn't eating anything with Vitamin K...but I also wasn't eating at all (aside from a cup of tea or sip of broth). I still took my Warfarin as usual but what I didn't realize was that I was actually hurting my body.
I mustered up the strength to get my blood checked as I did twice a week while I was on my thinners and the nurse came in after pricking me with wide eyes. She said my blood had become pretty much like water and asked me what I was doing. I told her about my illness and she didn't even let me finish.

"Go out and eat everything you can." she said.
"Even greens?" I asked inquisitively.

She nodded which made me the happiest and the saddest girl in the world. On the plus, I got a free pass for the first time in several months. I was able to eat anything I wanted. On the other hand, I was sick. I didn't realize that not eating was so dangerous when you were taking Warfarin. People don't talk about what happens when you're sick and you get sick with something else. How does this affect our dosage and our bodies? Thank goodness I went to the doctor when I did otherwise I could have done serious damage to my kidney and liver not to mention my heart. If you even have something as small as a cold, talk to your doctors. Tell them you don't have an appetite. Your dosage may be tweaked during that time to help you heal. Even if you think it's an insignificant change, it's better to be safe than sorry!

For information on The American Recall Center including an article on Xarelto, a medicine to prevent stroke and clots, click HERE

Tuesday, October 14, 2014

Magic Helps Strokies Recover?

Interesting. I'm curious to see what you guys have to say about this.
Apparently practicing magic motivates strokies to improve their memory and motor skills.

"Practising magic motivates people recovering from strokes to improve their memory and motor skills. It also helps to build confidence and fight depression, reports Lorna Stewart."-BBC

I have several problems with that quote above. First of all, do we need motivation? I'm pretty sure we all want to get back to being ourselves. Second of all improving memory...obviously ANYONE would want to improve their memory. I kind of take a bit of offense to the way this is worded but I could just be too sensitive. Form your own opinion haha.

Anyway, check out the link to the article and let me know what you think about this form of therapy. At the end of the day, whatever gets you motivated and excited without having to do frustrating exercises should be the takeaway from all this. I would do this in a sec. Improve myself AND impress my friends at the end of the day. Win win situation.

Sunday, October 5, 2014

Send Some Comfort To Tiny Strokies

Ava and her Mom Shana are starting a WONDERFUL new tradition. Ava suffered a bilateral stroke in 2013 when she was less than a year old. She is continuing to make progress every day and is growing into a beautiful little lady! Mom Shana is starting a strokiversary tradition to help other tiny strokies. If you know someone who has suffered a stroke, you know how important it is to feel soft comforting fabric against the skin. Please read all about it below and pass along to others who may want to help! Let's help turn negatives into positives!

Ava's Quilt
From Shana:

We've decided that we want to start a new tradition on Ava's strokeaversary every year and it all started with this quilt.
While we were in the ICU with Ava our nurses brought this quilt in to Ava. It was a quilt donated to the PICU by volunteers. It meant so much to us! Maybe handmade items don't mean as much to everyone but they do us. This sweet little quilt changed Ava's hospital room from a cold, scary, impersonal space to a cozy, inviting space.
That being said, we want to donate as many quilts as possible every year on January 14th, Ava's strokeaversary.
I would love it if all of you would join us! You have 3 months to whip up a little quilt of love to donate.
If you would like to join us, message me on 
Swim Ava Swim! and I'll give you our address to mail your quilt to.
Don't quilt? You can also help by donating to buy fabric or just mail me fabric!
I can't wait till Ava can deliver these quilts to the hospital so they may brighten someone's dark day.

You can learn all about Ava on her Facebook page Swim Ava Swim!

Wednesday, October 1, 2014

Some Morning Inspiration

Remember, small victories :)

"Every day is different, and some days are better than others, but no matter how challenging the day, I get up and live it."-Muhammad Ali

Tuesday, September 30, 2014

Title Help/Writing Therapy

So, I'm writing a stroke play and I can't for the life of me come up with a witty title! It's about a young woman named Darla, a strokie, one year out.

Who has a cool name? So far I have "Darla's Dream" but I know I can do better. Some play on word action, something neuron like or whatnot.
...I'm not making much sense am I?
Have you guys written anything as part of your recovery? Any strokie artists out there? I'm looking for you too! Do you have a poem, a haiku, a painting, something you would like to share? Comment and let me know. I will post it!

Saturday, August 30, 2014

A Beautiful Gift...

Yesterday, I went to pick out some new frames downtown. I was trying on pair after pair squinting at the mirror since I am blind as a bat without my own when an old man walked in the store. He asked if someone could help him with his prescription. As soon as he spoke, my ears perked up. He sounded EXACTLY like my grandfather who passed away in 2001. I didn't turn around. I just listened to his voice and looked in the mirror with a pair of frames I had tried on carefully trying to make out his silhouette as best I could. He even looked like my grandfather. I kept hoping that he would keep talking and then just as quickly as he appeared, he left the store leaving a big smile on my face and a warm feeling in my chest. After 13 years, I was able to see and hear my grandfather again!

I know this isn't a stroke post but it's something that truly made my heart smile. Just a reminder that sometimes the greatest gifts can come from the unknown...

Sunday, August 10, 2014

I Think I'm Ready To Share...

For those of you who don't know, I am a Playwright. I just received my MFA this past May and couldn't be happier. I started this journey post stroke never expecting that I would be part of an Inaugural Playwriting class of TWO. Sometimes I still find myself in sheer shock of how much I've learned in the past two years. I am truly grateful for getting this far and wouldn't change anything about it. I gladly take everything, the good and bad experiences, the whole package.

I've tinkered with the idea of writing a stroke play but haven't really been struck by inspiration until today. I'm pretty nervous but I'm going to face this challenge head on. I can do this. In September, I'll be applying for the EST/Sloan Project to get a grant to write this. Cross your fingers and toes for me!
This has the potential to reach a brand new audience of people and to teach others about young people and stroke.

I'm pretty excited. :)

Tuesday, June 17, 2014

A Quote That Inspired Me Today

For all you strokies who are facing your own battles today. Thank you for this Shana!

Courage does not always roar.
Sometimes courage is the quiet voice at the end of the day saying, 
"I will try again tomorrow."
-Mary Anne Radmacher

Saturday, June 7, 2014

Guest Stroke Blogger: Meet Lauren

Meet Lauren who suffered a stroke at the age of 23.  Lauren had an ischemic stroke due to 3 little holes in her heart she was born with, something that wouldn't have been found if she hadn't had her stroke. Isn't it scary how you can go through your whole life not knowing that there is an underlying condition hiding in your body? I'm so happy that Lauren is doing well. In reading her post, I couldn't help but feel good. Despite all she's been through, Lauren's smile shines brightly through her post. 

She is so strong and refuses to fall into the "why me?" slump. I wish her nothing but the best on her road to recovery. You can read all about Lauren's brave story HERE 
I love this quote from her post. 

"I need to have the discipline to embrace what has happened to me and get past it."-Lauren

You wear your badge of stroke honor proudly, Lauren! Welcome to the strokie club!

Thursday, May 29, 2014

Deja Vu

*My Mom had surgery on Tuesday at NYU Hospital, the same hospital where I was admitted after my stroke. Once she was in recovery, the doctors and nurses said they were going to move her to a room so I rode up with them and her. I kept thinking about my stay at NYU when I was in the Stroke Unit and how this was such a nice hospital with courteous staff. When we were all on the elevator, I kept thinking, this all looks so familiar and then we got off on the floor where my Mom was going to be stationed. I looked up and saw a sign that said Stroke Unit and a chill went up my spine. Immediately, I asked the nurse why she was being stationed on this floor and he said that the other side of the floor was general, not the stroke unit. I didn't feel comfortable AT ALL. Here was a place I was hoping to never visit again and I was thrust into it without being prepared or given a warning. It made me so angry.
Thinking back on it, I still get uncomfortable...but why? I know I am healthy and I am not (knock on wood) going to end up back in the ICU but still, I could have done without being on that floor unexpectedly.
When my Mom realized where she was, she just smiled and nodded. Of course she had bigger things on her mind, you know, like recovering haha. She's fine btw. I stayed with her as long as she needed me but I would be lying if I didn't say that I couldn't wait to get out of there! I kept watching the clock counting down the minutes of time that seemed to be moving super slow. The door to her room was open and I had a clear view of a man walking the floor with a nurse. He must have just had a stroke and was trying to get his bearings. I watched him walk very slowly and carefully with the help of an aid. Seeing the small smile that came across his face as he started to move with more ease made my heart swell. Small victories!
The next day, I went back and I didn't have such a strong reaction to the floor. I let go of the fear I had about ending up back in that place and tried to look at that floor fondly remembering the small steps I took down that hallway almost four years ago.

*Forgive my grammar this post. I am battling a terrible cold that has rendered me quite foggy.

Thursday, April 24, 2014

Is It Worth The Risk?

Cigarettes have a warning on them. This product may kill you by heart attack, stroke, etc. We know the risks but what about the risks of marijuana and strokes? Everyone always talks about ganja being natural and not having any consequence. You can even get a prescription for it however apparently a little around 2% of folks who have used medicinal marijuana have had a stroke from usage. WHAT? While 2% isn't a large number, it's still greater than 0. Are we as strokies willing to partake in such things that have even the slightest of a risk.

Let's talk about this more. I mean, we may enjoy the occasional alcoholic beverage, the glass or two of wine here an there but do we ever think of the risk? Mm, there might be a 5% chance that I am going to have another stroke if I have this Pinot. I never thought of risk taking in this way especially with things I used to do before stroke. The things you enjoy doing can now fatally harm you. Sleep...yes, having too little sleep can kill you if you're a strokie. Seriously. I laugh at this one all the time but it's true. Our brains need time to re-charge and rest. This is something I have learned to deal with the hard way being in Grad School. I haven't been getting much rest lately. Now I know that with anyone who doesn't get any sleep that the prognosis isn't good. We're grumpy, we hate everything. Imagine that being a strokie. Right now, it's 11:36pm, why am I not in bed? Why am I trying to hurt myself or put myself in danger (especially since I have crappy healthcare-thanks Affordable Care Act $651.21 a month) if I don't have to? Is the risk worth it? Do I want to end up back in the hospital because of a paper or play? No, Eljon. It will be there tomorrow. Just count Lovenox shots and go to sleep. This plays into the whole, take your time and breathe mantra. Easier said than done I know.

Have you encountered situations post stroke where you ask yourselves, "Is this worth the risk?" How did you deal with it? We all have our ways of dealing with these decisions. It's like having a little angel and a little devil on our shoulders....more like an Aspirin and a Warfarin tablet.  What do you choose? Is it ok to slip and risk once in awhile? I would love to know.

I'm going to sleep :) Be Well!

Wednesday, March 5, 2014

Your Eyes and the Cold and Stroke and BRRRRR

Anyone else have issues with their eyes post stroke?
Right after my stroke, I could have sworn my eyes changed. My glasses didn't seem to do their duty as well as they used to. I told my doc and she said that this will most likely get better as recovery went on and it has but in the winter...and I had forgotten about this...my vision sometimes goes back to that weird limbo it was in before.
Today I had a moment where I forgot that that used to happen and thought I was going a bit crazy but then remembered that old man winter is a foul person for another reason.

Any of my other strokies ever experience this?

Monday, February 17, 2014

The Challenge With Strokies And Grad School

My brain is mush.
It feels like it has been punched and pounded to a pulp.
No pills really help.
There's never enough rest.

It SUCKS! but it will be over in three months. This semester at Grad School is my most challenging. I have never had to read, write and think so much in as far as I can remember (which let's face it, can be true or not). I love being an MFA candidate. Love love love but it is sometimes very frustrating when a class of my peers discusses works in class and I can't contribute because my brain can't catch up or gets nervous and my words run away and hide.

I get frustrated when we talk about things we've read because I'm pretty sure I read some of these books in High School. I just can't remember them...They're still in that locked part of my brain I don't have the key for, the room of secrets and memories I can no longer access. I'm having one of those days. I HATE not being able to remember sometimes. Brain, you could save me countless hours of re-reading things...but on the flipside, who else can re-live the feeling of reading A Raisin In The Sun for the first time? I have to calm myself and realize that this can sometimes be a blessing. In a class setting of course it's not but it will be my little secret, one I can smile to myself about when I'm feeling upset in a room where everyone's memory was like mine once was.

Wednesday, January 22, 2014

Show Me Your Stroke Ink!

Happy New Year Fellow Strokies!

I hope your 2014 started off happy and healthy. For readers in the warmer parts of the world, please send some sun to NY! We could really use it.

How have you chosen to celebrate your stroke? I know. Really, Eljon? Celebrating your stroke? I stand by that statement. When going through recovery, you have to remember, you're getting to know your new self! So why not celebrate it? No matter what you have lost due to stroke, remember that you are a warrior. I read something in class that struck me and I think it applies to this situation. "Ask anyone who has ever changed a career, ended a long-standing relationship, or recovered from a serious illness or injury; they will tell you it is like a death, a dying of one's former self so that a new self may be born in its stead."Have any of you felt like that?

Recently I've been getting some emails about my stroke tattoo and have been encouraging readers to send me pics of their beautiful stroke ribbon ink. Below is Nicole's new stroke tat and her description of her body art. She is a two time stroke survivor.

The meaning of the purple cross-spirituality and courage. These are things that hit home for me, plus it's my son's favorite color. If it wasn't for him, I would have given up my fight. He keeps me going. I chose blue so it would tie in with the other two colors. -Nicole

Remember to speak to your doctor if you're going to go down the path of getting a tattoo after stroke. For me, I had to wait until I was off Warfarin for a few months. Blood thinners and tattoos don't mix. Seriously. You don't want to go to the hospital after getting freshly inked because you're bleeding out!

Please send me your pics if you have a stroke tattoo and I'll happily post them.

Be well!