“Ugh,” I groan as I drop the block from my rather tenuous left-handed grasp. I’ve been struggling for the better part of the hour-long therapy session with a weak hand that won’t cooperate. How long will it take to accomplish such a simple task? How many more repetitions stand between me and and regaining a sense of normalcy?
As a disabled young stroke survivor, I know all too well what it is like to lose almost everything. Waking up unable to speak, swallow, move my arm, walk – is a truly terrible experience I would never wish on anyone. But even despite all the hardship this experience has caused me, I feel grateful and extremely fortunate. Yes I lost a lot, but I gained a lot more. I have been blessed with an incredible support system as well as the rehabilitative resources needed to progress in my recovery journey.
I know am lucky. I am lucky to be alive and to have made the tremendous gains I have in a relatively short amount of time. And I realize that not everyone has access to rehabilitative resources like I have, so I’m trying to do my part to help change and improve the lives of others.
Last year I joined the board of directors of Children of Vietnam, a nonprofit with a mission to lift children and families in Vietnam out of poverty by providing them with education, employment, vocational resources, and financial assistance. I feel very passionately about the mission of Children of Vietnam (COV), and specifically about this year’s fundraiser to support children with disabilities.
This year, my fellow board members and I are cycling to end child poverty. I can’t cycle (yet) so to raise money, I am pledging to walk 1 million steps by my birthday (April 9). The money I raise will go to benefit the COV Hope System of Care for children with disabilities. Access is everything, and I want to help others the way I have been helped and empowered to succeed. I challenge all of you as well to join me in committing to 10,000 steps a day for the month of April. Join my team (Maddi’s team) and let’s cycle, walk, and move to end child poverty. Onward!
“Today I am studying a BSC in Business Administration and excelling in my studies. I have many friends who love and respect me and who I also love and respect. My disability is related to movement and is concentrated in my right hand. I do most things with my left hand.
“I am fortunate that moral support is with me everywhere I go. I am supported by my family, my university friends, and my online friends too. However, regarding financial support, unfortunately I haven’t found a job yet, although I hold a Warehouse Management Diploma. But that is not an obstacle to the successes I have achieved or those I will achieve in the future.
“There are many opportunities that I would like to realize. I learned management and loved this specialty, and anywhere I will be creative with my specialization. I have knowledge in the field of electrical installations, drawing Arabic calligraphy, and cooking.
“In Iraq, there are different fields of work for people with disabilities. We naturally play our part in society. Some people with disabilities work according to their testimony, some work according to their profession, and some work in the free field and in other job opportunities.
“Every disabled person has a beautiful talent. It is true that God took something from him, but He gave him something more beautiful and more special. Today you may see a disabled person, but he is a great painter, doctor, or scientist. God takes something but gives something in return. My advice to every disabled person is to discover your talent, be creative in it, and share it with the world.”
I’ve not been very active on my blog lately, so there are lots of updates to share. Earlier this year, I accepted a new full-time job in my dream industry, fashion. My office is not that close to my parents’ house, so in the spirit of change I decided to take another big leap of faith and move out!
I started my new job in June, and in September of this year I finally moved out and into my very own one-bedroom apartment! Not only am I starting a new career in my dream industry, but I am also fulfilling my longer-term goal to be independent.
In the past two months since moving in, my apartment is finally starting to come together and feel like a home. I still can’t drive due to my vision issues, but luckily it’s a relatively quick and inexpensive Uber ride to the office. I am adjusting to living completely on my own and having to do everything for myself (like getting rid of the cave cricket that mysteriously appeared in my closet☹️).
Once I settled in, I decided to host my very first party, a Halloween housewarming of sorts. An excuse to get my coworkers together and unwind after a long week with some wine and charcuterie.
If you would have told me four years ago that I would be living independently and entertaining guests in my very own apartment, I would have said you’re crazy. But never say never! My first party was a success, and I’m already brainstorming my next event. This is only the beginning and there is so much more to come. I am excited to grow and continue on this exciting adventure called life. Onward!
I realize it’s been some time since I updated my blog. In my defense, the past few months have been CRAZY. Tomorrow I’ll be beginning a new job, and I just signed the lease for my first apartment. That’s right, I’m finally moving out! Big changes involving my career and independence are happening and I couldn’t be more excited for what the future holds.
As sad as I am to be leaving my first job (I seriously could not have asked for a better experience), more than anything I am excited to begin this new chapter. If you happened to read my first book ( which I highly recommend btw 😉), then you know that I’ve always had a Passion for Fashion. Which is why it’s especially crazy for me to come to grips with the fact that this is actually happening, that it’s really me who is beginning a new job in luxury. What I had always previously thought of as a pipe dream is now about to be my reality. This truly is the manifestation of four+ years of hard work. In the past few years leading up to this moment I’ve learned that dreams can come true, but it doesn’t happen overnight, or even over the course of a few days or weeks. If we want something badly enough, it is worth it to put in the time and effort required to work towards it. After all, as cliche as it sounds, we really only do have one life to live, and that life is happening now. Go forward and chase your dreams and put in the work, enjoying the journey, because anything worth having in life is a process. Onward!
There’s a first time for everything, right? Ever since my stroke, I have faced a lot of firsts: my first time standing up from a wheelchair, my first steps, my first time moving my left arm. The list goes on.
A couple of months ago I found myself facing yet another first: my first foray into swimsuit modeling.
Allow me to explain. My friend Syanne approached me on Instagram with a vision she had for a swimsuit calendar featuring women with physical disabilities and their mobility aids/devices for daily living. And as scary to me as it sounded, putting myself out there in a way I wasn’t necessarily comfortable with, I jumped at the opportunity and immediately agreed. I welcomed it as a chance to normalize disabled bodies and show the world that we are normal people too, and just as capable of modeling as anyone else.
Before my stroke, I wasn’t afraid to post pictures of myself on Instagram in a bathing suit; in fact I enjoyed it, because I was proud of my body and liked receiving the validation from my friends. It made me feel better about myself.
After my stroke, I struggled a lot internally with my body image. I was no longer the carefree and confident girl I was. I gained weight, then I lost weight, and seemed to live my life in an on-off cycle of dieting to maintain my weight post-stroke. I really wasn’t confident about my body, and was constantly seeking ways to alter myself to look skinny and desirable. So when Syanne asked if I wanted to be a part of the swimsuit calendar, I viewed the invitation as an opportunity to embrace my new body image. Can I put myself out there for the world to see? I didn’t have unshakable body confidence, but maybe that was the point. Maybe that was okay, and by participating in this project, I would be doing my own small part to remove the stigma around seeing a person with disability empowered to model and exuding confidence. So, with that in mind, and as awkward as it felt, I posed in my bikini for the calendar.
For me, the swimsuit calendar was a powerful way to put images of amazing women with disabilities in front of people and force them to see that first and foremost, we are regular people. Do we look like the typical models you see in Sports Illustrated? – no, but most people don’t look like that anyways. We are real and messy and imperfect, all of us, and this calendar showcases our humanity. I, like Syanne, was frustrated with the lack of disabled models in the fashion industry, and figured this calendar would be a good way to increase representation and normalize disabled bodies.
Syanne found a site called Zazzle to print on demand our swimsuit calendar. She spent weeks laboring to put it together. And on the day of publication, Zazzle refused to print it and flagged the calendar itself as inappropriate, specifically due to “age restriction and language”. This raised some eyebrows on our end, especially when we went through the site and found products covered with expletives as well as swimsuit calendars that made ours look like your parents’ wedding photos. Syanne immediately engaged customer service with these inconsistencies, and what followed (after the normal runaround) was some confused finger pointing and an eventual acceptance of the calendar.
Now, I can’t say for sure why Zazzle initially flagged our calendar and didn’t publish it. If we’re to believe them, it was a mishandling from the initial customer service rep and an issue with “the algorithm”. And they did ultimately backtrack on their position. But I do think their initial reaction illustrates the whole reason I wanted to be involved with this project from the beginning.
People aren’t always prepared or comfortable seeing disabled people in spheres like this. If you were not disabled and saw a swimsuit calendar of disabled models, you might stop for a minute and wonder, what the heck is this? I’ve never seen anything like this before. My suspicion is Zazzle had a similar reaction. And that reaction is exactly what we are trying to eliminate.
I was ready for a disabled swimsuit calendar to create some skepticism among my circle, though from most it will be momentary and followed by support. Seeing the written reaction from Zazzle was a stark reminder how final and dismissive that skepticism can be.
Part of the goal of the swimsuit calendar was to normalize disabled bodies in fashion. If you look at the stats, about 15% of the world’s population has a disability. But we are just as normal and capable as anyone else. Zazzle’s response in rejecting our calendar is just a singular example highlighting how much work still needs to be done to normalize disability. And we’re just getting started.
¨Prost!¨ I exclaimed, clinking my stein of beer against those of my friends and the random German guys we had acquired as friends for the afternoon. I was in a state of absolute bliss. My trip to Munich turned out to be an unexpected collision of friends from many different walks of life, and I was so thrilled to be in Germany for the first time and see everyone at Oktoberfest! A dream come true!
In my pre-stroke days, I loved to travel. While living in Madrid, I got to see many other amazing parts of Spain and Europe. And the way I saw it, how could I come all the way to Spain and NOT go to Oktoberfest?? So I decided to cross it off the bucket list. On September 18, 2015, I traveled from Madrid to Munich with one of my best friends to meet some of our other friends from college. Oktoberfest truly was one of those once-in-a-lifetime experiences, every bit as bacchanal as one would expect. But in the best way possible.
Fast forward five years to my post-stroke life. In my post-stroke days, I love to travel too, but traveling looks different than it used to. Although I love my life now and feel that I have been blessed with a second chance, I still have bad days and don´t always feel my usual happy self. This past week I was feeling nostalgic for the old Maddi.
I was thinking back on my time abroad in 2015 and how simple things had been for me then. No stroke, no muscle spasticity, no significant vision problems. Five years ago life was good, and I wanted to go back to that time. It was this past weekend five years ago that I ventured over to Munich.
But wait a minute Maddi, you might be thinking. You just said you love your life and are blessed with a second chance. Why do you wish to go back???
Good question. I found myself wondering the same thing. And I think it comes down to this: I don’t necessarily want to go back in time as much as I want to feel carefree and independent again. Like the world was my oyster and I could conquer anything.
But with age comes not only the wisdom of gained experience, but the blessing (or burden) of increased responsibility. My life has done a literal 180 in the past couple of years since I suffered a life-altering stroke, but I choose to view my injury and recovery as a lifelong opportunity, a journey I can constantly grow from.
My responsibilities have changed, and while I can’t galavant around Europe given the pandemic and the fact that I (literally) can’t galavant anymore, I can still live my life and have fun and not let my disabilities hold me back from accomplishing amazing things.
Since Oktoberfest 2015, I had been joking with my friends about taking a trip back for Oktoberfest 2020: the five year reunion. However, with the onset of the coronavirus pandemic, it quickly became clear that a reunion trip was not going to happen this year. Bummer.
I was upset because we had been looking forward to a trip like this, a chance to reconnect with friends who now lived all over the world. The pandemic really was putting a wrench in all my 2020 travel plans. But I refused to let this bring me down. Despite our current global situation, I had in fact had some great times. Instead of wallowing in my sorrow, I decided to think of all the ways I’ve lived my best life during the pandemic, and make a list to show myself how much I had achieved and had to be grateful for over the past six months. As you may know, I’m a huge proponent of list-making. Here are a few noteworthy items from my list:
Daily walks outside
Publication of my book Fast Fwd: The Fully Recovered Mindset
Designed a scavenger hunt for my sister’s 21st
Traveled to Puerto Rico with friends
Visited Lizzie at the beach in NJ
Saw family in Fenwick Island
Ate crabs in Ocean City
Walked 10 km in Hilton Head
Swam in the ocean and in the pool in South Carolina
Dropped Bridget off at school
Bryn’s labor day party meeting lots of new friends
Sharika’s party and meeting friends of her and Jonathan
Survivor live weekly conversations with Tawnie
Chess moves with Greg
Podcast interviews with Jerry and Paul
Successful July renewal campaign at work
When I actually sat down to write a list, I quickly realized there were way more things I had to be grateful for than I originally thought. I might not be living and traveling how I thought I would be in 2020, but I am living and I am enjoying the moment, and that’s pretty cool.
I have been getting down on myself a fair bit lately, feeling nostalgic for a past version of myself that no longer exists. But what good is that? I am Maddi 2.0, and if independence and freedom is ultimately what I want, how am I going to figure out a way to get there?
There is a well-known saying I’m sure you’ve heard that applies directly to this situation. As it goes: Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why we call it the present.
This saying is honestly so corny it makes me cringe, yet I can’t help but think how true it is. We can spend our time worrying about what is in the past, fixating on a previous version of ourselves, or we can take advantage of the present moment and shape the future we desire. I was stuck wishing for the Maddi of five years ago when I could have been reflecting on the Maddi I’ve become since. I crave independence and travel, so instead of whining about it why don’t I do some serious thinking and devise a plan for how I’m going to get back there.
I may not be headed to Oktoberfest this year, but no one else is either because of the pandemic. And international travel will still be there for us to enjoy in years to come. In the meantime, I’ll focus on my goals for independence and save myself the unnecessary beer calories. 😛
On September 7, 2020 I had the honor of being a guest on the podcast of fellow stroke survivor Paul Cummings. We chatted about my new book, Fast Fwd: The Fully Recovered Mindset, and the importance of a positive attitude in transforming the trajectory of your recovery. You can watch our interview here. Connect with me on Instagram and if you haven’t already, be sure to subscribe to my blog at the bottom of the page to never miss an update, and order your copy of my book Fast Fwd today! Onward!
I recently had the pleasure of sharing my stroke rehabilitation journey on the show, Let’s Talk Stroke. In the interview, Jerry and I discussed all things recovery and my new book, Fast Fwd: The Fully Recovered Mindset. Click the link below to watch the episode, and don’t forget to order your copy of Fast Fwd! Onward!
For all the skeptics out there, let me explain. Every three months, I go see my doctor, a specialist in brain injury medicine, for injections that will temporarily relieve my muscle tone. The 800 units I get today (a hefty dose for sure), are spread out between various muscles in my neck, back, arm, wrist, hand, calf, and ankle. I get so many injections, you’d be hard pressed to find a muscle that DOESN’T receive the toxin. 😂
After I get all the shots (which can be a long process, sometimes up to two hours), it takes about a week for the medication to take effect and loosen my tight muscles. In the meantime, the only thing I have to show for an afternoon of needle injections is a series of nasty bruises on pretty much the entire left side of my body.
But when the medication takes effect a week later, it’s like magic (no joke). It is suddenly easier for me to open my hand and work on my exercises. I love getting Botox for this very reason, to provide me temporary relief from the tightness I feel constantly throughout my body.
Now that I’ve just received my injections, it’s time to commit to some serious work on my rehab. I have a three-month window to take advantage of my muscle looseness by strengthening that left side and rewiring my brain. Stroke recovery is a lifelong journey, but I am committed to the process and willing to constantly adapt to find new ways of accomplishing tasks. Onward!
As much as I hate to admit it, my mom is (almost) always right. Since I had my stroke, I’ve been living back home with my parents, undergoing all sorts of intense rehab and taking baby steps towards independence. My ultimate goal is to reach a point where I can move out and live successfully on my own. I’m not sure when that will happen, but I feel quite confident that it will happen. I’ve been working diligently towards this goal, achieving a series of smaller recovery milestones on the path to ultimate independence.
In October of 2019, I hit a major landmark: traveling for the first time post-stroke without my parents accompanying me. And it was an international trip too. Granted, I was traveling with my brother, so I wasn’t completely alone, but still… Little victories. There’s a first time for everything.
Then in February of 2020, I traveled alone alone down to Atlanta, Georgia, to visit my friend Megan. This was an exciting trip and a big deal for me. I’ve flown multiple times since my stroke with my parents, but I hadn’t flown by myself on an airplane without anyone to help me manage my luggage. That trip was a success, and proved to me that I could handle more than I previously thought I could. I was anxious for another opportunity to test my independent travel capabilities.
But then COVID-19 struck. And suddenly I wasn’t traveling anymore. But then again, no one was. Fortunately my whole family stayed home, healthy, and safe. Much as I wanted to travel places and exert my independence, there was nowhere to go with travel restrictions and state-wide shut downs.
Fair enough. So one aspect of my independence journey had to be put on hold for a bit. I wasn’t taking a step back in my recovery (a lateral one, maybe), so I began using my newfound time to make progress in other areas. But I’ll dive into that in another blog post. Back to travel.
A couple of weeks ago, I was FaceTiming a good friend from college, Jade, and by the end of our chat, I had made the decision to visit her down in Puerto Rico. I was ecstatic; some of our other friends were coming too, so it would be like a little Georgetown reunion. It had been way too long since I’d seen all these people together in the same place.
The whole trip was very last minute, but I managed to book a flight and a hotel without too much of a hassle. The following two weeks went by very quickly, and all of a sudden I found myself a mere two days away from my trip.
If you’re anything like me, planning and organizing post-stroke can sometimes be difficult. Ever since I decided to go on the trip, my mom had been pestering me to create a checklist of things I would need to pack to go to Puerto Rico. “Ugh Mom” I moaned. “It’s literally just clothes, bathing suits, and toiletries. I don’t need a checklist.”
But my mom had a point. “Things are different for you now, Maddi,” she said. “Remember that time that you left the charger for your Bioness at your friend’s apartment and then he had to mail it home to you? You don’t want something like that to happen again, because it’s going to be much harder to mail something back from Puerto Rico than it is from New York City. But if you make yourself a checklist ahead of time, then when you’re packing to head home you’ll have something to look back on to make sure you got everything. You really don’t want to leave something behind there.”
Ok, I had to admit, she had a point. My judgment isn’t the same as it used to be, and I could definitely see myself forgetting something important like my brace or my bioness charger at a hotel in Puerto Rico. And so, as much as I did not want to admit that my mom was right, I agreed to make a checklist of everything I would need for this trip.
I organized my checklist by priority level. I started with the items I could definitely not go without: my brace, my Bioness, my nighttime splint, my weight-bearing splint, etc. My list continued in descending levels of priority: bathing suits, enough clothes for the trip, toiletries, makeup. If I left behind an article of clothing or makeup oh, it wouldn’t be the end of the world, but what would be the end of the world would be leaving behind my brace or my wallet.
As annoying as it was to devise this master checklist, it was a great exercise in planning. My cognitive therapists would have been so pleased. If only they could see me now.
And so, I feel inclined to share this lesson with all of you. I’ve learned to not rely on my memory, or rather, what my memory once used to be, because I am a different person now. Sure, the old Maddi did not need to make a packing checklist, but Maddi 2.0 does. It’s unfortunate, sure, but I’m a different (better) person now, and I want to do whatever I can to make my life easier for myself. If that means making more lists, so be it. There are worse things.
And on that note, I need to go. I’ve got some packing to do.
And just like that, my newest book, Fast Fwd: The Fully Recovered Mindset, is published and out there in the world. April 9th was my 25th birthday, and what a way to celebrate with the publication of my latest book!
I have spent the past nine months working on a book about my experience with stroke recovery. You could say this book is my baby – it has many stories from my journey with recovery over the past three years and shares the various strategies I’ve learned through the rehabilitation process.
The most important thing that I have learned over the past three years is that recovery is primarily a mindset. Being fully recovered does not mean what I once thought it meant, and it will be a lifelong journey. But I’m willing to commit to that.
I strive to be strong and continue to persevere even if things feel tough and frustrating. Given the state of our world today and the global pandemic of COVID-19, I think that my book comes at a punctual time and can shed light on how to channel positivity and see the good even from a place of quarantine and isolation. While I had originally planned to host some in-person launch events to promote my book, I realize that now this will be impossible given that everything is closed down and we have entered a new era of social distancing.
That being said, I am still thinking and coming up with creative ways to launch my book virtually. I am excited to share with all of you that I will be hosting an Instagram and Facebook live series that includes conversations with people featured in my book and people who I feel embody the themes of positivity and overcoming obstacles. I will also do a virtual live reading of the introduction of my book and some other short stories.
If you are a fellow stroke or brain injury survivor struggling to find ways to do your therapy exercises in quarantine, my book may just be the thing to help you kick-start your rehab. My book includes therapy exercises and post-stroke life strategies that have helped me. I hope that the exercises I share can help you as well.
Please be sure to head over to Amazon and order your copy of Fast Fwd: The Fully Recovered Mindset, today. Oh, and if you do, please be sure to leave a 5-star review. The more reviews my book can get the better!
Thank you everyone for your support, I am so grateful. I will be sure to share with all of you the details for the virtual launch events that I’m planning. To kick-start the post-launch festivities, I will be doing an Instagram live with Greg Nance, ultra marathon runner and Dyad.com CEO. Greg is a close friend of mine and I have followed his journey since we first met in 2015. Greg is the perfect example of a person who finds ways to turn life’s obstacles into beautiful opportunities. As a serial entrepreneur and ultramarathon (read: crazy) runner, Greg has a very unique perspective that I can’t wait to discuss. Be sure to tune in Wednesday, April 15th at 8 pm EST for a conversation on mindset you won’t want to miss. We will be going live from my Instagram account (@maddistrokeofluck) for The Ultramarathon Mindset. Hope to see you there!
As always, please feel free to reach out with any questions and let me know what you thought about my book. Onward!
It’s absolutely crazy to think that the last blog post I wrote was right before s$!t hit the fan in mid-March. The last time I published a post, I had gone out to a brewery in Brooklyn to celebrate my friend’s birthday. Then I went to a Celine Dion concert. So much has changed since then. Four weeks ago could have four years (or honestly four decades). Our lives have drastically changed. Now I’m working from home, craving human interaction outside of my family (sorry Mom and Dad, Charlie and Bridget, I love you all), and I’m just wishing that businesses and restaurants would be open again.
As I’m sure most everyone else does, I miss traveling and hanging out with my friends on the weekends. But we have a new reality now, and I’m trying to remember that I’m not alone, and we are all going through this together. We are all experiencing the effects of COVID-19 in some capacity. It is affecting so many lives and taking so many. I honestly feel so fortunate to still be employed, able to work remotely, and be in the presence of loved ones. Who knows when the next time will be that my entire family is united under the same roof for an extended period of time?
I am trying my best to make the most of this time and enjoy the company of loved ones. It’s not always easy, but I am making a concerted effort to find the positives in this situation. I am taking more time for myself, going on daily walks outdoors, journaling more, and FaceTiming distant friends. I feel that in a way this experience is a blessing – I am grateful for the opportunity to catch up with friends, albeit virtually, and I am enjoying the time with my family.
Every day since quarantine began (weather permitting), my mom and I have gone on long walks outside. It’s a great opportunity to not only get some fresh air, but to chat and enjoy each other’s company. I look forward to these walks, and I cherish the time that I get to spend with my mom every day that we go for a walk. I am trying my best to live in the moment, and enjoy each second that I get to the very best of my ability. This global pandemic has really made me realize how precious the gift of life is – and one that we shouldn’t take for granted.
While it is easy to feel on edge with all this uncertainty, let’s make an effort to transform our negative thoughts to positive ones by realizing all we have to be grateful for. And remember, although things may be tough and you may feel isolated, you are not alone. Let’s support each other during this time and strengthen our human connection (virtually or from a safe distance of course). I’m always here to listen, so don’t hesitate to reach out. How are you making the most of your time in quarantine?
Sending much love and positivity–onward and upward!
This weekend has been a whirlwind of unexpected yet worthwhile festivities. My original plan was to go visit my dad out in Seattle this past weekend, but with the recent developments with the coronavirus, I decided to just stay home so I wouldn’t have to self-quarantine. Although I was upset that I would not be going out to the West Coast, I know that there will be other opportunities to visit.
Since I was no longer going to Seattle, I had no plans for the weekend, and after a flurry of Friday night texts with my friend Lizzie who was coming back to New Jersey for the weekend, we made some impromptu plans to head into Brooklyn for my college roommate Francisca’s birthday party. I really wanted to go now that I knew I’d be in the area, since I hadn’t seen Francisca in a few months. The fact that Lizzie would be home for the weekend and able to attend with me made it way more appealing, because I still don’t quite feel confident enough to navigate the trains and subways to Brooklyn alone. And even better, her dad agreed to drive us into Brooklyn, which made the whole commuting situation easy.
We met up with the birthday girl at Spritzenhaus in Brooklyn, and enjoyed some spicy mezcal drinks, lagers, and pretzels. It was so nice to catch up with old friends from college we hadn’t seen in years, as well as meet new friends.
After a couple of hours at Spritzenhaus, our group walked a few blocks over to Berry Park to continue the festivities. Francisca had reserved some tables at the rooftop lounge, so I ventured up the several flights of stairs to the roof. I can manage stairs fine, I’m just a little slow, and a lot of times I feel self-conscious about holding up a large group while I tackle the stairs. I’ve found that a lot of times it’s better for me to just wait until everyone else has gone up the stairs first, so that when I do it I can take my time and not worry about there being people behind me. I do the same thing on the train; before I disembark the train I will usually wait until every other person has gotten off.
For me, it is important to put myself in situations where I am set up for success. Like getting off the train last so I’m not stressed out by the people behind me anxiously awaiting to get to their destination. Or calling an uber from the train instead of struggling with the overstimulation on the subway.
All in all, our trip in to Brooklyn was a success, and getting to spend time with good friends was amazing.
When we got back from Brooklyn, Lizzie and her family invited me to join them that evening for a Celine Dion concert. Now that is just an offer I simply cannot refuse!
I have been making a real effort lately to listen to my body and recognize my limits. Was I too tired from our daytime excursion to go to a concert that night? I thought about it, and I felt fine. I am trying to recognize my limits but also push my limits at the same time, and figured that a concert that evening would be a good way to do so. After all, if I couldn’t be in Seattle like I had originally planned, then I thought that I might as well have a fun time with my friend and her family.
And so, to the Celine Dion concert we went. And let me tell you, she was incredible! What a performance. I’m so thankful for the opportunity to see her live and spend more quality time with Lizzie.
Saturday was a late night for me, but worth every minute. I wasn’t in Seattle as planned, but ended up having just as much, if not more, fun hanging out in the city with my friends. What a time to be alive, indeed.
I thought that by heading down to Georgia for the weekend I would be escaping the cold weather and snow in the Northeast, but turns out I was just ditching my mild Northeast winter for snow in the south.
On February 7, I flew out of Newark to Atlanta to enjoy a weekend with one of my best friends, Megan. Megan and I have a very special friendship and great how-I-Met-You story. Back in 2003, my family headed down to Key Biscayne, Florida for a nice spring break vacation. Little did I know at the time that on this trip I would meet a lifelong friend. Megan and her family were also headed to Key Biscayne that same week to see their friend Dwayne Wade play his first game for Miami Heat. Our families happened to stay at the same hotel, The Ritz Carlton in Key Biscayne.
One day while I was playing at the hotel pool, a girl approached me and asked if I wanted to play with her. Megan had seen me reading poolside and playing mermaids with my sister. She also loved to read, and so we bonded over our shared interest. For the rest of the week we spent time together reading, playing mermaids, and enjoying nachos and virgin daiquiris at the pool. We had a spectacular time, and when our vacation drew to a close, we decided to remain friends.
And so we kept in touch the old-fashioned way, through letters. For a long time we remained penpals, sending each other letters and books to read for our own book club. All throughout middle school before either of us had cellphones and could text, we would call each other on the landline and chat for hours. I visited Megan in Wisconsin while her dad was the basketball coach for Marquette, and again in Indiana when her family moved there for basketball. Megan has come to see me in New Jersey, down at the beach, and our families vacationed together in Delray Beach, Florida. Megan is one of my longest friends and I am so thankful that we have stayed in touch through the years.
Megan lives in Atlanta now, and her family is a quick drive away in Athens, as her dad is now coaching the basketball team at the University of Georgia. It is his second season, and I had been saying that I would go catch a game, and so this past weekend I finally did.
And so, after a half day of work on February 7, 2020, I grabbed my suitcase and headed to the Newark Airport to catch a flight down to Atlanta. I was feeling tired after a long work week, but I was so excited for this trip and really looking forward to spending time with Megan and her family. I needed this, and as I was scheduled for a bilateral strabismus surgery the following week, I wanted to have as much fun as I could the weekend before my operation.
I was so excited, but let’s just say that the trip down to Georgiadid not go as smoothly as anticipated. I called an Uber to take me from my house to the Newark Airport. Thankfully my driver was able to help me put my luggage in the trunk. I took off my backpack and set it next to me in the car. My Uber driver was from the Dominican Republic, and so we chatted in Spanish the whole way about the beautiful country. And when we arrived at the airport, my Uber driver gave me his business card. I enjoyed our conversation so I pocketed the card in case I ever needed to reach out. I grabbed my suitcase from the trunk and headed in to the airport to check my bag.
In planning this weekend away, I had decided that I would pack a suitcase and check it for the flight so I wouldn’t have to worry about managing a carry-on. I wasn’t sure I would even be able to lift a carry-on to stow above my chair. I figured checking a suitcasethis would be much easier for me. Unfortunately, when I made it to the kiosk and turned around to reach for my backpack and grab my wallet, I realized that my backpack was not on my back. Which means I left it in the Uber.
Thankfully, I had listened to my mom this morning and put my wallet with my credit card and ID in my jacket pocket, because it would be easier to access there than if it were in my backpack. I didn’t want to reach around into my backpack and hold up the security line, shuffling around until I located my wallet. And thank goodness I listened to my mom, because I didn’t even have my backpack with me to check even if I wanted to! I remained calm and opened my Uber app to try and find a way to get in touch with my driver. When I was unable to do so, I remembered that he had given me his card, and so I reached into my pocket to find my wallet, my phone, and my Uber driver’s business card. It pays to be friendly with your drivers! I dialed both numbers on the business card and finally got in touch with him, only to discover that he was with another passenger en route to New York. Since I had my wallet in my jacket pocket, I knew that I technically had everything I needed to fly down to Atlanta. My backpack had my chargers and AirPods, but that was about it. I could get by without it. So I proceeded to check my bag and head through security.
When I made it through security, I called my Uber driver again and he offered to drop off my backpack at my house when he was done with his ride. It’s moments like these where I feel especially grateful that there are kind people in the world. He was such a nice guy, and graciously offered to drive my backpack from the Bronx to my house in New Jersey, where my mom would be able to receive it on my behalf. The whole situation was a s***show, yes, but with the best possible outcome. My mom got my backpack, and I made it safely to the Atlanta airport, where Megan was waiting to greet me.
My weekend was off to a rocky start, but at least I had my wallet and my suitcase. Megan drove us to Athens straight from the airport. I was upset by my backpack mishap from earlier that day, but in the car ride over to Athens I made the active decision to not let it ruin my trip. I reminded myself how excited I was to get to spend time with Megan and her family. After all, I had the most important things I needed, mainly my suitcase and wallet, so I would be totally fine for the rest of the weekend. And my Uber driver was nice enough to drop off my backpack at my house so I knew it was safe.
I knew that we had a fun weekend planned and I was very excited for the basketball game and to see the town of Athens. So I put the backpack out of my mind and committed to enjoying my time there. After a good night’s sleep in Athens, I woke up to snow fall. Not a ton of snow – it was more like a flurry, but what I remember from my days of living in Atlanta is that the south can’t handle snow, and the state shuts down in a panic at the slightest bit of snow. It was flurrying, but luckily the restaurant that we were planning to go to on Saturday was still open. So we headed into downtown Athens for brunch and shopping, but most of the shops were closed due to the weather. Brunch was delicious, but the walking around made me tired, so I was thankful when Megan suggested we just head home because of the weather and rest up before the basketball game that night.
When we got home, I passed out hard. The nap was much needed. I am making an active effort these days to not overexert myself and really be in touch with my body and understand my limits. I was tired from a hard week of work and welcomed the opportunity to rest in between our activities that weekend.
After my nap I got dressed and we headed over to the game. Georgia played Alabama, and it was a really close game, but with Alabama ultimately winning 105-102 in overtime. After the game, we went out to enjoy some margaritas and Mexican food with an Asian flare. I was happy I had taken the time earlier to rest so I could handle our outing.
I was having a blast this weekend, but the fun wasn’t over yet. My flight home wasn’t until Sunday night, so on Sunday morning I said goodbye to Megan‘s family and we drove into Atlanta. We met one of Megan‘s friends for brunch at Barcelona Wine Bar and then walked around Little Five Points, did some shopping and got tarot card readings.
After, Megan and I drove to Ponce and did some more walking around and shopping. Since I had left my AirPods in my backpack (which was now at home, thank goodness), I bought myself a book to read on the plane ride home. When Megan dropped me off at the airport, I checked my luggage and got through security in no time. Because I wear a brace, I typically get patted down when going through airport security. For some reason, on my flight from Newark to Atlanta, I didn’t have to remove my shoes and no one stopped me to pat me down. However, on the flight from Atlanta to Newark, I was stopped because of my brace. It’s annoying constantly explaining to people that it’s just a leg brace and I need it to walk. inevitably I always end up getting a pat down. And it’s not always a quick process, either. That is part of the reason why I started arriving extra early to the airport when I have a flight. I never know how long security is going to take, and things generally take longer for me now. But this time, it was a fairly quick process and I got home all in one piece.
While I had packed my Bioness unit to wear that weekend, I ended up not wearing it because I didn’t want to deal with the stress of having to re-wet my electrode every four hours. Who knew if I would be at a place where I could run the electrode under water? I didn’t want the stress, and so for those two days I just wore my brace.
My trip to Georgia was fun and a much-needed escape from my busy day to day. Although I misplaced my backpack, and although it snowed, I kept a positive attitude and tried my best to not let the bumps in the road get to me. In recovery and in life, the attitude we choose to have can completely alter our trajectory, for better or worse. By choosing to stay positive about the weekend and not get down on myself, I ended up having a great time and enjoying myself. Life is too short to give in to negativity. Every single moment of every day we have a choice to make of how we want to live our lives. Will we choose positivity or give in to negativity? It’s up to us.
Now when I travel, I try to not set crazy expectations, because things can easily go awry. Nothing ever goes exactly as planned. Maybe we lose our backpack, or get tired early in the day and need to head back for a nap. Whatever it is, it’s important to remember to listen to our body’s cues, understand our limits, and take breaks when needed. There’s no shame in resting if that’s what we need to better enjoy ourselves later. The important thing to remember is that we (quite literally) only live once, and our life is happening now, so how are we going to make the most of it?
Stay tuned for a post in the coming weeks on my experience with bilateral strabismus surgery to correct my double vision after stroke. The operation went smoothly on February 12 and I look forward to sharing the experience with you all in the coming weeks. Onward! 💪🚀
As the year 2019 draws to a close, I have been taking some time to reflect on the major milestones of the year. There was the trip to Miami in February, where I had the pleasure of seeing Greg successfully finish the World Marathon Challenge (7 marathons in 7 days on 7 continents), and where I set a Personal Best for most steps taken in a single day (18,000!). On this trip I really pushed my limits and built up my endurance so I could walk farther distances without breaks.
There was my first round of constraint-induced therapy for my leg in Birmingham, Alabama in March, where I learned how to weight shift on my left side while walking. A subtle improvement, yes, but one that had a major positive effect on my gait.
I started a full-time job as a Junior Underwriting Associate in April, and managed on my own for a weekend away in DC to visit friends. I love my job, and feel blessed to work in an environment with amazing people who are fully invested in my development (and where I can use my Spanish on a daily basis too!).
In June/July I got the Bioness unit to help with my walking, and spent three weeks back in Alabama for a round of intensive constraint-induced movement therapy for my arm. I learned to embrace the Use it or lose it! Motto, and now involve my left hand in functional activities like fixing my hair, zipping my jacket, and tying my shoes. I definitely don’t perform these tasks as well as I used to, but the important thing is that I’m making an effort.
Fast Fwd to October, which was a big month for me. In October I walked in heels at my friend Hannah’s wedding, and then traveled to London to visit my sister and best friend. This was my first time traveling abroad post-stroke, and I managed without my parents. That week, I achieved the goal of independent travel and improved my sense of awareness when navigating crowds. My siblings and I also traveled to Dublin, where we drank Guinness at the Guinness Storehouse, visited Trinity College and saw the Writers Museum. That month, I also rode the subway in New York for the first time without help.
In November I resumed PT to improve my gait while wearing the Bioness, and in December I made it through my first busy renewal cycle at work.
And today, I achieved another recovery milestone while at the gym. I walked three miles in an hour’s time (59:09 to be exact ;)). When I started my workout, I began at my usual 2.5 pace, but decided 15 minutes in that I wanted to set a new standard and push my limits. So I escalated my workout from a speed of 2.5 to 2.8 to 2.9 to 3.1. Aggressive – potentially, but no progress was ever made by staying within your comfort zone. I was feeling good, my Bioness was firing correctly, and I was feeling inspired to end the year on a high note.
3.1 is the fastest speed I have walked at since my injury and one hour without any breaks is the longest I’ve walked on the treadmill. It makes me excited that I was able to walk fast and for extended time without breaks. In PT this month I set a 2020 goal to run a mile by the end of the year. I’m ready to level up, and would love to be able to run again, as it’s something I always enjoyed.
Fast walking is a start, and now that I’m getting more comfortable with the Bioness, I think running might just be feasible. I’m feeling thankful for all the blessings of this 2019 year, and I’m looking forward to seeing what I can accomplish in the 2020 year. New decade, new year, new chance to work hard to achieve our goals. Onward!
PS – If you’re interested in reading more about my journey with recovery and how I try to turn a traumatic experience into a beautiful opportunity for growth, be sure to pre-order your copy of my new book, Fast Fwd: The Fully Recovered Mindset, publishing in April 2020. Only 8 days left to place your pre-order, don’t miss out!
“Are you ready? It will just be a little prick,” my physiatrist warned. “Thanks for the heads up,” I joked. Prick, and the needle penetrated my left trapezius. My doctor turned the switch on the funny little contraption sitting in front of us, which started to hum faintly. “This is how we figure out where to inject,” he said. “The louder the noise from the machine, the more active the muscle is.” That’s kind of cool, I remember thinking. So we listen to the muscle to get a sense of where the spasticity and tone is most prominent and inject.
But as cool as it sounded in theory, the reality was this was more than just a little prick, even for me, someone who has always had a high tolerance for pain. Even as a child, I was never scared of getting shots. After all, it was just a needle. In and out, right? Well if you’ve ever gotten Botox, you know it’s not so simple. The needle goes in, and stays in until the doctor has found the correct muscle and injected. For me, the whole process could take an hour’s time. But it helped. A lot.
To hear the rest of the story of my experience with Botox injections for spasticity management, head over to my Indiegogo campaign and pre-order your copy of Fast Fwd: The Fully Recovered Mindset! My publisher, New Degree Press, has officially approved my manuscript for publication in April 2020, and I’m so excited! Like I say in the video on the campaign page, this book is not just for stroke and brain injury survivors, but caretakers, friends, family, or anyone trying to understand life after stroke.
As you will see on the campaign page, there are many options for pre-order. I would be extremely appreciative to have your support in ordering a copy or sharing the campaign with anyone who may be interested. If you opt to purchase a copy of my book, you’ll be invited to join my beta reader community to give feedback on early chapters, be involved in helping me select my cover design, and much more.
I was compelled to write this book because I wanted to share my journey with stroke recovery in such a way that would benefit other survivors. Recovery can be a long (very long) and isolating journey, but it doesn’t have to be. I am here for you and want to help however I can. As always, if you have any questions or just want to chat, don’t hesitate to shoot me a message at firstname.lastname@example.org or DM me on Instagram (@maddistrokeofluck). Thank you all for your support in this book-writing endeavor, and I look forward to connecting with you and hearing your stories. Onward! Here is the link to watch my promotional video and order your copy of Fast Fwd: https://www.indiegogo.com/projects/fast-fwd-by-madeline-niebanck/x/22095378#/
Thanksgiving has always been one of my favorite holidays. My mom’s side of the family drives up to our house in Chatham from Maryland, and we all celebrate Thanksgiving together. I love spending time with my family and enjoying a delicious meal. My dad fries a turkey outside and smokes another (and it’s delicious!). My mom makes all the side dishes, from mashed and sweet potatoes to stuffing, brussels sprouts, mushrooms, cranberry sauce, fried oysters, and my favorite, homemade applesauce. My job is to make the drink, and I’ve spent the past two years refining the spiced rum punch recipe. This year‘s was better than last, and it was a big hit with the adults. And we can’t forget all the amazing desserts – pumpkin pie, trifle, and lately in the Niebanck house, fried candy bars (I guess since my dad fries the turkey and oysters he figures why not just fry everything we have, including leftover Halloween candy).
One of my favorite parts about Thanksgiving is a new tradition that my cousins and I started three years ago: a post-turkey walk to the local cemetery. Morbid – maybe, but it’s something I now look forward to every year. It’s a great opportunity to get some movement after a big Thanksgiving dinner. We’ve documented the walk with an annual photo at the cemetery, and looking back at these photos, it’s crazy to see how much my cousins have grown up!
It’s also cool to think how much improvement has been made in my mobility since that first post-stroke Thanksgiving walk. At Thanksgiving 2017, I had just gotten rid of my cane, and definitely couldn’t walk the uneven ground to get to the cemetery by myself. In 2018, I had a toe off brace instead of an AFO, and while I was able to walk unassisted, I still had trouble with curbs. And in 2019, I can navigate the uneven terrain on my own without assistance on the big curbs. Who knows, maybe by next Thanksgiving I’ll be running!
No matter what your stage in recovery, don’t give up because anything is possible. I know that recovery is hard and it’s disheartening at times when you don’t see improvements, but those obstacles you face are opportunities to keep pushing forward to achieve your goals. Recovery is a process, and it’s important to continue working on our goals and appreciate the journey. This Thanksgiving I’m especially thankful for my loving family and the fact that I wake up each morning with a chance to work hard towards my goals. It truly is a blessing, and one of which I am especially grateful for. Tomorrow is never a guarantee, and so it is important to make the most of each day. Each day that we wake up is amazing in and of itself. So what are we going to do with each fresh start we get?
This past weekend, I hit another major milestone. I took the subway by myself for the first time post-stroke. Which may not seem like a huge deal, but trust me, it is. And, in retrospect, is probably still not the safest thing for me to do, but I needed to prove to myself that it was possible. I wanted to show myself that I could get around without help.
On Friday after work, I packed my backpack for the weekend and hopped on the train to New York Penn. I was headed to the apartment of my college roommates for an evening of catching up. I’ve been taking the train a lot on my own, but navigating crowded situations with my vision loss is still a challenge. It’s busy in Penn station, and no one is paying attention to what’s in front of them and instead focused intently on their phone screens. Aka a messy situation for a person with visual and spatial awareness issues like me. Lots of potential for accidents.
While on the train, I decided that once I got to the station, I would try to take the subway to Chelsea, since my friends’ apartment was only one stop away and a two block walk. But I knew that if I were to actually do this, I’d have to be hyper aware of things on my left side. I don’t always pay attention and have been known to run into signs or people on my left side because I didn’t see them. But if I were to do the subway on my own, this simply could not happen.
And so when I got off the train, I headed over towards where the subway was and made my way to the E downtown line. I took my time walking, and stopped to read the signs to make sure I was heading in the correct direction. I was extra careful, looking over my left side constantly. And when my train arrived, I hopped on (thankfully it wasn’t crowded), and hopped off one stop later.
Luckily, one of my other college roommates who was going to dinner happened to also have just gotten off the subway, and so we managed to meet up near the exit and walk over together (shoutout to Find my Friends for helping us locate each other). It’s times like these where I find technology to be very beneficial to my life.
The trickiest part of this little adventure was definitely making sure that I saw everything. Prior to having a stroke, I never thought about visual scanning, but I knew that if I were to be walking by myself in the train station, there was no room for error, and I had to be as careful as I could. So I walked slowly and deliberately, taking my time to scan and read all the signs and make sure I wasn’t headed towards collision with passerby. I make sure that I allow myself ample time to navigate, so I’m never in a rush. I need to take my time.
I was so proud of myself for taking the subway all by myself, but still don’t quite feel 100% confident in my ability. I know I’m vulnerable with my walking and lack of awareness, so this is all still a work in progress for me. But it’s all steps in the right direction, and I know I’m getting there slowly but surely.
When navigating public transport, there’s so much to be aware of. And because of my vision loss, I have to be extra aware with my other senses. I tried to pay extra attention to the sounds that I heard, to warn me of when someone was approaching. Cultivating a sense of awareness is much harder than I would have thought, but the more I practice it the more it improves. I know that the more I place myself in situations slightly outside of my comfort zone, while remaining safe, the better I will get. How are you working on spatial awareness after stroke? As always, please don’t hesitate to reach out to me via email (Maddiniebanck@gmail.com) or Instagram (@maddistrokeofluck). I’d love to hear how you work towards your goals of increased independence post brain-injury. Onward! 💪
Today, Tuesday, October 29, 2019, is World Stroke Day. And as a survivor myself, having suffered a stroke two and a half years ago at the age of 22, I wanted to use this post to reflect on the big changes and lessons I’ve learned since.
Maybe I’m just in a travel mindset after having returned from 8 days in the UK, but what immediately comes to mind for me in terms of progress post-stroke is in the form of increased Independence while traveling. As I mentioned in my previous post, 2 weeks ago I left the country for the first time since having a stroke to fly cross the pond with my brother to visit my sister and best friend from college. I had been to London once before, so I didn’t feel the pressure to be constantly on the go and sightseeing every minute of the day. The nicest part about this trip was just hanging out with my friend Freddy and my siblings, just enjoying each other’s company and chatting over good food and drinks.
For the first part of our trip, my brother worked from the London office, my sister had class, and Freddy had to work on producing some new songs, so I took the opportunity to focus on rehab exercises and on writing the first draft of my new book. Lucky for me, I was able to spend the week in Freddy’s roommate’s room, as he was out of town for the week.This turned out to be perfect because I had space to set up my things and do some exercise. When Freddy was working or out playing football with his friends, I was in the apartment grinding out exercises.
As much as I try to get a lot of exercises in during the work week, it’s really hard because, quite frankly, after a full day of work I’m tired and rehab is the last thing I want to do. But I figured that having a week off from work was a special opportunity and I needed to use it to my advantage to get done things I’m typically too tired to do during the week.
Over the first few days in London, I did a lot. I treated my siblings and some friends to a nice dinner at Yauatcha Soho. It was delicious: edamame truffles, venison puffs, roasted duck, and much more. And let’s not forget the most delicious lychee cocktail I’ve ever had (it tasted dangerously like juice).
And our night didn’t end there. After stuffing ourselves full with delicious Aian food, we walked off the meal. We headed over to enjoy drinks at Swingers, a mini golf themed bar close by the restaurant. While we regrettably didn’t play any rounds of mini golf, we did enjoy a delicious honey and lemon infused cocktail before heading across the street to Mahiki for some red bull vodkas and an evening of dancing.
It didn’t end up being a super late night, but I was still pleased by my ability to stay up later than usual. I’m like a grandma, in bed by 9 end up at the crack of dawn. But I prefer it that way. And as much as I do enjoy a night out, it takes me longer to recover from them now, so it all needs to be planned out well in advance so I can prepare myself mentally.
The next morning, I was surprisingly not hungover and enjoyed a productive day of writing and well over my daily goal of 10,000 steps. Freddy and I took my sister shopping, which was a lot of fun. For essentially the first two years after my stroke, I had little to no interest in shopping. And I loved shopping. I could spend money like it was my job. But lately I’ve been enjoying trips to the mall to walk around and look in the shops. I’m not sure what changed, but I take it as a good thing that I’m getting back to activities I once used to enjoy.
Perhaps because I am more mobile these days, I am able to find pleasure in activities like window shopping, because I am not weighed down as much by fatigue. Because I am able to walk now without assistance, I feel that I owe it to myself to spend as much time as I can moving. And yes, this gets to be hard since I work a desk job 5 days a week, but I do what I can and get my practice walking to the train station before work or on the weekends at the gym when I have more time.
But back to London. Up to this point of the journey, I was most proud of myself for recognizing when it was time to take a break from my activities and just relax. I knew that Monday with dinner and drinks was going to be a big day/night for me, so I prepared accordingly by resting up and not running myself to the ground with too many planned activities beforehand.
Knowing my limits and recognizing that I can’t do everything like I used to has been the biggest adjustment to my new life. But that doesn’t mean that I can’t still enjoy the same activities that I did before having a stroke. I just enjoy them in a slightly different way now. And ultimately I think it’s for the better. I know that I can still go out and have a good time but without drinking (and getting to sleep at a more reasonable hour; I love my sleep now).
I like to say that I am high on life and can still enjoy a night out with friends while sipping on a cocktail or club soda. I don’t need alcohol to have a good time (but it definitely helps ;)).
I’d love to connect and hear from you about your experience with travel post-stroke and what you’ve learned about yourself through recovery. I can be reached via Facebook (Maddi Niebanck), email (email@example.com) or Instagram (@maddistrokeofluck).
I woke up in a cold sweat the night before my flight to London. There was a lot on my mind: what if I couldn’t manage traveling on my own? What if I got lost in the city and couldn’t find my way back? Since having a stroke, I had never traveled anywhere without my parents, and I definitely hadn’t so much as left the country in over two years. This trip would be a big test, an experiment for me to see what I could handle and do on my own.
The next evening, my brother and I would be heading to London for an eight day holiday to visit our younger sister (who was studying a semester at Kings College), and my best friend from Georgetown. I would be spending the week at my friend Freddy’s house in West London, and my brother would be staying with some coworkers who recently moved to the city. I was so excited; I hadn’t been back to Europe since I studied abroad in Madrid in 2015. So this trip felt long overdue. But a part of me was also nervous for this adventure. I needed to prove to myself and to my family that I was capable of independence abroad. This trip would give me a good idea of where I stood in terms of what I could do on my own and what I still needed to work on.
My siblings and I had semi-planned out a bunch of fun activities for this week, including day trips to Dublin and Oxford, some nice dinners in London, and of course, some shopping. I was taking the whole week off from work, and my brother was working out of the London office for two days, so I figured this gave me some time to focus on my exercises and writing while he was at work and my sister in class.
Before we departed for London Heathrow, my mom told me to pay extra attention to my body and the signals it gave me of tiredness. Neuro fatigue hit me harder now, and when it did it hit me like a ton of bricks. I had to be extra cognizant of my body’s signals so I didn’t over exert myself.
I would definitely be going out for drinks with Freddy and my siblings, so I had to keep in mind my limits when it came to alcohol. Alcohol affects me differently now, and while I still do enjoy social drinking with good friends, I can’t handle as many drinks as I used to. When I have a couple of drinks in me now, the liquor negatively affects my walking and slurs my speech. I wear a brace and already have a slight limp, so I like to joke that my normal walking looks like I’m drunk, so I can’t actually get drunk as I’m already impaired.
When we went out to dinner, on multiple occasions the bouncer standing outside the bar stopped me and asked if I was okay to come into the restaurant, because they didn’t allow drunk people inside. so I found myself many times having to explain my situation until the bouncers but I just look like I’m drunk even when I’m not, because of the way I walk. This happened a few times over the course of the week, and got to be a little annoying. But I understand the bouncers’ point of view. Here comes a girl who can’t walk well, trying to get into the bar. Took a lot out of me to remain patient and calmly explain myself.
I knew that this week in London I’d have to really monitor my eating and especially drinking, because no one wants to see a drunk girl hobbling out of the bar who can’t walk well to begin with.
After suffering a stroke, I also realized that my metabolism had changed. I couldn’t just eat whatever I wanted anymore without consequence. I started to notice that I gained weight when I ate carb heavy meals. So for the past two years I’d been making an effort to restrict my diet to low carb. I essentially hadn’t had a slice of pizza, a beer, or bread in two years. All this effort, and I was just maintaining (or sometimes gaining) weight. It was really annoying. And the last thing I wanted was to come back from a week in London to discover I’d gained ten pounds.
I was on holiday, yes, so I could loosen up my diet a bit and enjoy myself, but weight loss/maintenance was still important to me, so I couldn’t go crazy.
In the next few posts I’ll talk about the specifics of my trip and how I managed London, Dublin, and Oxford post-stroke. Spoiler alert: I did actually break my no beer rule and have a Guinness at the Guinness factory in Dublin. Stay tuned, and as always please reach out and share with me your experience with travel post-stroke or tbi. I’d love to hear about how you manage travel and neuro fatigue. Shoot me an email (firstname.lastname@example.org) or DM me on Instagram (@maddistrokeofluck). And don’t forget you can subscribe for blog updates on my website. Look forward to hearing from you. Onward!
The 5th of October, 2019 began for me like any typical Saturday morning as of late: breakfast, weight bearing, get dressed, chug some coffee. Except it wasn’t any typical Saturday morning, because today one of my very dearest friends was getting married. It felt like Christmas; I was so excited for this day, and couldn’t believe it was finally here.
When the bride, Hannah, asked me to be the maid of honor at her wedding a year-and-a-half ago, it felt like I had all the time in the world to prepare for the big day. I set an ambitious goal that day to walk down the aisle in a pair of heels. And at the time, this goal seemed lofty and unattainable considering I still needed a leg brace and my balance was extremely questionable. The brace severely limited my footwear options, so I found myself wearing a lot of tennis shoes, since that was just about the only thing that worked for me. But prior to having a stroke, I loved rocking a pair of stiletto heels for a night out on the town. I would love to get back to that eventually, and figured if I just practiced a little bit in the months leading up to the wedding I would be okay for a (tiny) pair of heels.
In May of 2019, I got myself a Bioness units to help with my walking. I had experimented a bit with the Bioness when I was in physical therapy, and it helped tremendously with my walking. The Bioness is a cuff that wraps around the calf right below the knee, and it sends electrical stimulation down to the foot to lift the ankle, facilitating a heel-toe strike. I needed this help, because without the assistance of a brace or Bioness, my left ankle would invert and slap flat-footed to the ground. I figured if I bought myself a Bioness, not only would I hopefully improve my gait, but I would have more options for shoes, and maybe even be able to wear heels for the wedding. Two months before the wedding, I really amped up my practice in the Bioness, and once I bought myself a short pair of nude heels that I could wear with my bridesmaid dress, I began practicing wearing those with the Bioness on too.
And it wasn’t pretty at first. I knew that I would really have to practice every single day to get comfortable enough to walk down the aisle in heels. Over the summer, I lost confidence in my walking while wearing the device, and got nervous that it wouldn’t perform well and turn my ankle in instead of out while I was walking. And I think that this fear started because there were a few times I was wearing it that I felt it misfired, causing my ankle to invert. And so I became more cautious, looking at the ground when I walked and afraid that with the next step I took my ankle would turn in. I think it was probably all psychological, but I became really nervous and didn’t want to wear the device for fear that it would do the wrong thing.
I realized that this was a problem and that I needed to kick the nerves if I was going to wear heels at the wedding in October. I began practicing a little bit after work every day. It probably wasn’t going to look as good as I wanted it to, but I just wanted to be able to make it down the aisle.
The night before the wedding, the whole bridal party met at the church to rehearse. And here I found out that as the maid of honor, I would be processing down the aisle unaccompanied. So the pressure was on. I was also told that I would be sitting up on the altar next to the bride on her left side. I knew that this was going to be a problem for me, because there was no railing at the steps leading up to the altar, and I needed something to hold on to to get up the steps. And so the priest kindly offered to assist me up to the altar once I reached the steps. I was thankful for this and my anxiety temporarily dipped, but I was still hella nervous that I wouldn’t be able to make it down the aisle alone. What if I fell down on my walk towards the altar? There was no one with me to ensure my safety. I said a quick prayer for confidence and grace processing down the aisle the next day.
The following morning I awoke with a slight sinus headache (or hangover from the rehearsal dinner, who can say. I popped some Advil and met the bridal party bright and early at the salon to get our hair and makeup done. I opted for a blowout, because my hair is naturally wavy and I wanted to emphasize the curls.
After the salon, we all went to the bride’s family’s house to get dressed and take pictures. The photographer wanted some photos of the bride outside, and so I held the train of her dress and carried it in both hands while walking outside in my heels. This was no simple feat. Not only did I have to think about my foot placement while wearing heels, but I also had to manage my left hand well enough to carry the train of Hannah’s dress and not drop it. So to accomplish this mission I opted for what I fondly refer to as “the smushing technique”: mash my left hand against the fabric to hold it up as opposed to struggling to maneuver my uncooperative fingers around the fabric.
And it worked. I was able to walk in my heels and carry the train of Hannah’s dress outside so we could take pictures. We then took a limo to the church and I got out for the moment of truth, aka the procession to the altar in heels.
I grasped my bouquet of flowers in my left hand and rested my right hand on top for stability. All of the bridesmaids walked down the aisle one by one with their groomsmen to accompany them, and once all the bridal party finished processing, it was my turn.
I walked down the aisle alone with my flowers in hand, laser-focused on keeping a smile on my face and not looking down at my feet. After what felt like an eternity, I made it to the altar where the priest took my arm and walked me up the steps to my seat. Once the gorgeous bride made it up to the altar, she handed me her bouquet to hold for the duration of the ceremony. And boy, did my arms hurt. But I kept telling myself, it’s only an hour, you can suck it up.
At the end of the ceremony, I walked over towards the best man, who took my left arm and escorted me down the steps and out of the church. I was a little nervous about this, because I don’t trust my left arm to support me, and the best man stood to my left. I always prefer to hold on to my surroundings with my strong arm, the right. So we casually switched sides and headed out. This way, I felt much safer if there were to be a slip.
With the ceremony behind me, I got back in the limo and promptly changed into a pair of sneakers for the reception. Following an afternoon of photos at The Mansion at Natirar, I danced the night away (or tried to) in the company of dear friends and family.
The huge bucket of ice water sits across from me, filled to the brim. It’s my first of three weeks at the Taub Clinic at the University of Alabama at Birmingham, and I have no idea what I’ve gotten myself into. My occupational therapist for the next few weeks returns with what appears to be a hand splint and a big smile. “Today we’re going to start by trialing a new strategy for weight bearing with that left arm,” she tells me. “We’re going to do an ice bath.”
Ok, so that explains the mysterious bucket of ice and water in here. But what was an ice bath and how on earth was it going to help me?
Since my stroke, I’d been very fortunate in the sense that my body seemed to react well to whatever therapeutic intervention we tried: osteopathic manipulation to correct the rotated vertebrae in my neck (which is still a work in progress), or even Botox injections for the tone in my neck, arm, and leg that prevented normal muscle movements and caused my hand to flex and contract instead of open. I could send the message a million times from my brain to my hand, telling it to open, but my hand had a mind of its own. Open, I’d think, and instead it immediately does the opposite, tightening into a fist. Muscle tone, and the inability to effectively control the actions that I wanted performed was my biggest challenge. And this is why Botox was so important for me to get every couple of months. The Botox injection temporarily paralyzed the troublesome muscles, like my ankle, bicep, and finger flexors, so that I would be able to focus on strengthening them. The only problem for me with the Botox is that it wears off after a couple of months and I have to go back for more. I started getting injections six months after I had a stroke, and found it extremely helpful, giving me extra time to focus on my rehab exercises without the intervention of unwanted muscle contractions. But after two months, I found that the botox would wear off and my arm would get tight again. I wanted to correct this situation but wasn’t sure how.
Which brings me back to the ice bath. That first week in Alabama, my occupational therapist told me that weight bearing was the most important exercise I could do to rehabilitate my arm. I had a slight shoulder subluxation, which meant that the head of my humerus did not sit correctly in its position in the shoulder. Therefore my shoulder joint was slightly dislocated. All of that being said, I was anxious to try any method that might help mitigate the negative effects of muscle tone, fix my shoulder position, and strengthen my arm.
My occupational therapist told me that she wanted me to submerge my hand in the ice water up to my wrist five times in five second intervals. I did, and the intense cold of the water burned. We then dried off my hand and stretched my fingers, placing my hand into the weight bearing splint. My hand went in easily, without its usual problems causing it to tighten up unexpectedly. With my hand easily secured in the splint, I did weight bearing exercises to practice putting weight through my left hand. It was severely out of practice. After lots of weight bearing exercises, I took my hand out of the splint and was surprised to see how loose my fingers were. My occupational therapist said that the ice bath temporarily paralyzes the finger flexors, removing the tone from the equation so that I would have a window of about 30 minutes or so to focus on finger activation while everything was nice and loose. And now that I know the secret to success that is an ice bath and weight bearing, I can’t go a day without doing it. If I don’t get anything else done, weight-bearing is the one thing I absolutely must do. And it has made all the difference in mitigating my tone.
Apart from weight-bearing, my three-week stint in Alabama also opened my eyes to the importance of using my affected side and attempting to incorporate it into daily activities. I had gotten by basically by just using my right hand for everything. I figured that because my left arm and hand was paralyzed, I might as well learn how to do everything with my other hand. But when I got to Alabama, this was not the case. I was told I could only use my affected side to complete tasks while I was there. Use it or lose it, my therapist told me. It only takes a few days for the brain to rewire positively or negatively, and what had happened for me was that my brain decided that I didn’t need to acknowledge my left side since it wasn’t participating in any activities. But in order to positively rewire my brain, I needed to make an effort to incorporate my left hand into every activity I did, even if it couldn’t actually help. Eventually, if I kept at it, there was the potential that my brain would rewire to acknowledge my left side. and so I began to at the very least attempt to use my left side in tasks like opening and closing doors, zipping jackets, and tying my shoes.
In my next post I’ll share more about my experience at Taub with rewiring my brain, and how this simple mindset shift from ignoring my left side to actively engaging it, has made all the difference in my recovery.
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Sometimes life is great, everything is going your way, and you feel on top of the world. When I graduated from Georgetown University in May of 2017, I felt like I could do anything. I walked down Healy Lawn the morning of May 20th to receive my diploma and reap the fruits of a rigorous yet fulfilling academic career. I then proceeded to celebrate (maybe a bit too much) with all my best friends and family.
So yeah, you could say I was living my very best life. I was so excited to turn the page and begin my next chapter. I had a job lined up in Boston that I was excited about, and three months to relax, travel, and catch up with friends before I made the big move.
But sometimes when things are going exceptionally well, it feels like the universe wants to spite us and show us that ultimately, we don’t always have complete control over our situation, and it can change at any moment. Shit happens.
Barely a week after I shook President DeGioia’s hand and received my diploma, my life as I knew it changed forever.
On May 30, 2017 I checked into New York Presbyterian Hospital for brain surgery. Since childhood, I was plagued with terrible migraines, culminating in a series of migraines lasting over 20 days when I was in high school. My neurologist decided to order an MRI, which confirmed our suspicions that there was something else going on. It was discovered that I had a rare arteriovenous malformation (AVM for short), in the right occipital lobe of my brain. I made the decision to have brain surgery once I graduated college to remove the risk of a potential rupture. I was informed that with each year of life there is an increased chance of the AVM bleeding and causing a stroke or even death. I wasn’t a huge fan of the idea of brain surgery, but I was even less a fan of dying from an AVM bleed, so I decided to go in for brain surgery and have it removed. The doctors told me that if everything went well, I would rest and recover for a month or two and be in perfect condition to move up to Boston and start my job at the end of the summer.
Well, let’s just say that didn’t happen as planned. One of the pre-operative procedures caused a blood clot in my brain which burst, causing a massive brain hemorrhage and an emergency surgery. On his way into surgery, the neurosurgeon told my parents that “the situation was grim. It doesn’t look good,” and then he rushed off to the OR.
7 hours and 6 liters of blood transfusions later, I lay completely paralyzed on the left side of my body in a hospital bed in the New York Presbyterian ICU. Upon waking up from a coma a few hours later, I had no idea what had happened and it was unclear what recovery from this might look like.
I’ll be using this blog to share weekly posts about my biggest takeaways from my journey with recovery. I want to empower and inspire others by sharing my experience.
Obstacles are opportunities, and I believe that within my struggle with stroke lies an awesome opportunity to empower others to find meaning in the face of hardship.
More to come.
Hi, my name is Maddi. In this journal I share my journey with stroke rehabilitation, in the hopes that by sharing my experience I can empower and inspire others to find ways to repurpose or find meaning even in the face of hardship. Join the journey and subscribe below for updates on my latest posts.
Hi, my name is Maddi. In this journal I share my journey with stroke rehabilitation, in the hopes that by sharing my experience I can empower and inspire others to find ways to repurpose their lives in the face of hardship. I hope that by sharing my biggest takeaways and learnings with you, I am able to show you that even if the situation looks grim, there is always a positive side. It’s all in your perspective. Join the journey and subscribe for updates on my latest posts about my recovery.