Post-Stroke 2020 Self-Reflection

Last year at the stroke of midnight, we bid adieu to 2019. The illustrious red carpet was rolled out with excitement as we obtusely herald a promising year. In retrospect, as we near the end of this ominous year, we were naïve to proclaim it would be filled with hope, dreams, and contentment. Instead, like dementors from Harry Potter, 2020 inhaled our thoughts and emotions. We were marred with a life of darkness around the world encased with pathogens, civil violence, political malignity and mistrust which doesn’t come close to scratching the surface. Looking back with hindsight and what would transpire, I wish I took advantage of 2019 normalcy as much as possible. I didn’t fathom the world would transform at an alarming rate.

We forget that we share a common bond that each one of has been plagued by these 2020 issues one way or another. Dejectedly, instead of unifying, several people went on different paths to destroy one another. Darkness prevailed causing a divide and pitting us against each other. I think back to 9/11, when evil invaded with malicious destruction. Much like this year, it was unexpected. The difference between 2020 and 2001 is that we pushed back our agendas, political lines forgotten, people embraced on another, and we became one. I understand that 2001 vs 2020 is like comparing apples to oranges because it’s intentional versus a mystery. Personally, I will say this has opened my eyes that sympathy is far gone and for that I am frustrated. There have been feel good stories sprinkled through platforms yet the dementors continue to suck the human emotion with each story. You can see for yourself if you read the comments section. I try to steer away from comments for my own mental health, but I’m a glutton for punishment due to curiosity. With everything going on in this world I don’t know if and/or when the narrative will flip but I’m going to be optimistic. I know it’s hard to be optimistic, even if we try and it’s not successful. We all need to keep pushing optimism because it’s our saving grace at this moment.

My personal 2020 journey brought a mixed bag of emotions. I had my stroke, ruptured aneurysm and hydrocephalus, each one complicated requiring multiple surgical procedure. I nearly died a couple times, and I am in constant fear that it will happen again. In retrospect, for years I joked that I would have a stroke because I’m constantly stressed and feel the need to analyze something until I go mad. I never thought this joke would come to fruition at the age of 37. I have personally made a promise to myself to never joke about health outcomes. One, it’s not a laughing matter and two, it might happen. Aside from the stroke, I never thought I would be on Amazon looking for face masks to match my outfits. I started off with the standard medical mask because I thought this wouldn’t snowball like it did. Yet here we are at the worst point of this pandemic. I see the reason for the face mask, yet I don’t think it’s plausible to keep one on for eight hours a day while working if you aren’t used to it. Running into a store for 20-30 minutes is feasible but as soon as I leave that store the mask is off. Medically, I understand all the precautions that are mandated. I for one feel that proper hand washing, and distance is the best solution, especially when you are in line at a store. I also appreciate all the hand sanitizer stations at all buildings.

Flipping back to my health scare, I feel contention with 2020. Front and center of my mind, I think of my horrid near-death manifestations. Before my stroke, I always tormented myself with what if scenarios, especially with health. I admit this one took me by surprise. On a cold dreary night in January, I didn’t know that my life would change forever with SAH stroke, ruptured aneurysm and hydrocephalus. As I was surgically operated on that was just the beginning of my battle. I had to learn how to recover physically and emotionally. I was the rare breed of SAH strokes that only suffered balance and short-term memory issues. I was miserable because I didn’t want to admit that I needed help or look fragile. I had two choices- fight or hide. I selected to fight, because that is my nature, but my fight faced a wall-the pandemic. I became a prisoner in the hospital and after clearance, my home. My sentence started at the end of January, and during the early months of summer I was able to attend a few events, go on vacation, and shop. I’m thankful for the time away from home, but I must protect my health at all costs. I’m thankful that my company took this pandemic serious and allowed us to work from home. I was initially scared that when I was cleared to start working again, I would be back in an office. Even without the orders from the top, my director and manager understood my health concerns and told me to stay home and work.

I know that this will be an unpopular opinion, but I feel that my brain bleed was a blessing in disguise. Remember that I noted that I’m a fighter, so I allowed myself to feel every emotion possible. By doing this, I learned a volume about myself and resilience. Each passing phase opened a window to understand how other people feel, and in return, this gifted me with compassion that I lacked. I want to rephrase that; I have compassion, but not the level it has transformed to date. While I worked hard on myself to get back to normal, I also poured my heart and soul into researching and finding gaps in the stroke and brain aneurysm community. I wanted to be a part of the solution rather than a statistic. By doing this, it allowed me to connect with people that were otherwise strangers. I had the privilege to hear their own personal stories, watch their progress, see their optimism. This was all breathtaking, if you ask me. I don’t feel enough credit is given to stroke survivors. It’s an assault to the brain that leaves a person with numerous issues. It takes time for the brain to heal. It’s not overnight, a year or two, -it’s ongoing. Yet, I sit back and marvel at this beautiful group of people who wake up every morning and press on trying with all their might not allowing this horrendous situation to dominate their lives. They have pride with progress they make, or they sit back and cheer someone on that might be struggling. This community will assist one another by contributing toward podcasts, sharing our stories, or just a simple check-in to see how you are doing. It’s unity, which 2020 is lacking, but if you look hard, you will find a group.

All stroke journeys are different. For myself, I wanted to document everything, regardless of how stripped down and vulnerable I was. I started on my phone in the hospital, switched to writing on paper, typing on the computer (which took a lot of practice), to making videos. It was therapeutic and if it resonated or helped someone else, that was a bonus. Fact, I don’t like taking pictures of myself, or be in a in a picture. I wanted to push that perception of “vanity” away so I could document how much I progressed physically. I didn’t want to plaster platforms with pictures, I also wanted to find a meaningful quote to give inspiration or some insight on how I’m feeling. My creative side came out and I started to dabble on an app where I could attach other photos and quotes. For my stories, I selected music to go along with my creation which has meaning. These are affirmations, a reminder, and a kick to push me or others in the fighting position. I suppose this takes place over arts and crafts that stroke survivors do during meetings. Becoming creative is essential and an activity. The purpose of stroke survivors becoming creative is to keep your mind going, enhancing thought and tapping into the part of your brain to become stimulated. It allows you to release your emotions. It’s a good technique and I encourage others to find something that allows them to put it into practice, whether you have suffered from a stroke or not.

Touching on the other side of managing my stroke during the pandemic era, I was forced to learn ways to find comfort in life in order to mitigate everything going on around me. While recovering, I didn’t have much to do but watch TV. I dreaded hearing the daily briefs about the pandemic and numbers going up as a reminder of how serious this is. I had to do what was best for my own mental health. I began to pause in life which I desperately needed. Instead of a full calendar of things to do, I was given the opportunity to rest and figure out my life. I had to look at the joy and that encompassed time with my husband and yorkie babies. I was able to reset, when my body needed to reset. Don’t get me wrong, I miss social gatherings with friends, but in time, that will come back. For now, I’m finding peace at home. I don’t have to battle traffic to get to work, walk the dreaded parking lot with the wind slamming against my face. Waiting in herds to get on the elevator, walk all over the place for meetings. I’m able to wake-up, get ready and begin working with zero distractions. To be honest, this is probably the most productive I have ever been. I do miss social interaction with co-workers. However, I am more focused on work and most importantly putting clients first. I don’t know what the future of going back to work will look like, not just for my company but for many companies that have the capacity to work from home. There will also be that fear that with any little cough, all bodies will pop up from their seats and look at the person as suspect if it’s COVID-19 when it could be the common cold or allergies. Trust me, I have been given dirty looks myself when I sneezed and coughed at Target picking up some items. It was during the spring and I’m allergic to pollen. The death looks, were all on me. I was tempted to make a t-shirt that says I have allergies. I also had to get a COVID test before I could return to physical therapy because when they called, I was having a bout of allergies and sounded bad. I was negative, but it took two weeks for my test to come back, which is the time period they gave me if I didn’t get one.

To circle back more on the pandemic, I think this has been a tremendous learning experience for our world. While we have be told to practice good hygiene, this pandemic has made it washing hands more essential into frequent practice. Instead of standing right on top of someone in line, we now have little circles of distancing ourselves. Personally, I love this because it grinds me when someone is directly behind me and too close for comfort. I hope this continues even when the numbers go down. Now if I was 21 and back in my drinking days, I would be irritated that my nightlife was robbed. Since I’m nearing 40, places closing early don’t really impact me, but it does impact owners of bars, and the crowd that has been waiting forever to experience the nightlife. The only thing that I hope relaxes is the mandatory mask guidelines. While I understand the importance of it as this point, this can’t be a permeant solution. So, with all this said, and I know people have a mixture of opinions on the matter. Regardless, I hate portions of the 2020 pandemic era, because it has robbed children of proper education, companies shutting down and people trying to figure out how to pay the bills. Personally, I have decided to take advantage of this situation to tackle things I have never had time to do, enjoy peace and quiet, decreased obligations and finding a passion project.

Now for my passion project- to give context I have noted that 2020 is a learning year about my stroke and how I handled it. 2021 has been proclaimed the project year where I will take everything that I have learned personally through self-reflection and research. I have many projects in mind and I hope to accomplish them. It will be laborious but if I can pull it off, it will give me a sense of purpose and heal my wounds. First, I plan on taking part of my blog and writing a book and adding other information. Second, I will take everything I have learned personally or through research to piece together a comprehensive mental health plan for stroke survivors to legislators, starting in my state. I have reached out to the senate, and neuroscience department, and they have assisted me on how to go about this. My plan is to mitigate risk early with more education at an early age and use more descriptive words that alert people that it’s not just a headache. I want to introduce enhanced mental health care when a patient is discharged. Hospitals, at least In my area, give you a stroke book that goes over the physical part of healing. In the back there are resources to contact for support groups in your area. The gap that alarms me is that there is no explanation of what to expect emotionally after you are discharged. Maybe I was the only one, so I might be speaking on my own behalf, but I didn’t realize the number of emotions I would feel until it dawned on me that I was going through grief. No one told me I would go through that, so I initially thought I was falling apart. It wasn’t until I started researching that pieces came together that I wasn’t falling apart, I was going through grief cycles and they will not end. They get better in time, but it does not end. At first, I didn’t want to feel these emotions because I didn’t want the perception that I was weak. Once I let the wall down, I realized that I was strong by letting the emotions flow and learn from it. To date, I’m still processing information about how I feel. I stated that I’m nearing my one-year mark, so I’m reliving the night over and over. It comes in my dreams; it pops in my head while watching TV. I either breakout into a sweat with my hands shaking or I start to cry. I know I have PTSD, and I’m working on this to not control me. I have made a bargain with myself that I will let myself feel unhinged for the first-year anniversary but after that it’s going to be a celebration. Do I get scared this will happen again? Yes, I’m in constant fear this will happen again, and I have had head injuries that have caused issues like a concussion. I always trying to protect my shunt. Now that my migraines are back, I start to have mini panic attacks that this is it. Yet, I remember what the feeling was that immediately prompted me to seek help- the rubber band snap. I have been given sample meds to help migraines, but it only caused more issues. I did start taking my nightly headache medication, which isn’t really giving me results. I still don’t understand why migraines and brain aneurysm are not related. I have come across two studies where it was thought that migraines do have a correlation, however their studies could not be concluded because of the lack of participates, and lack of communication. I pose a question, that if someone develops migraines later in their life, is a yearly scan warranted to check vessels. However, there is red tap with private and socialized healthcare, and I don’t see this being an option unless you want to pay out-of-pocket.

The next portion of 2020 is people. I have learned a great deal about people in and out of my life. When I had my stroke, friends who I haven’t physically seen for years, came down to see me. That left a massive imprint on my heart. Several friends and co-workers reached out via messages to check on me and cheer me on. Friendships developed in 2020 along with the stroke community. One friend I want to mention is, Christy. We went to school with each other since middle school. Since my stroke we have not missed one day of talking to each other. It’s a friendship that was unexpected but extremely welcomed and refreshing. Somedays, we just ask how the day went, others we vent, and at times go down memory road. I absolutely cherish this friendship and thank her for being my rock. Sadly, I also learned that some people disappear when something happens. Suddenly you are treated as if you died, because contact has ceased. It makes you question those friendships, if they were all surface, and if there isn’t anything you can bring to the plate, the plate is thrown on the floor and shattered into pieces. These friends, whom I will not name out of respect for their privacy are people my husband and I have helped in their time of need. Never asking for anything in return. Secrets still tight lipped. It’s sad, but I feel that I gained more than I lost. Perhaps I should phrase this as I am disappointed in these particular people. I have also encountered some careless people that have made my life hard and recovery difficult. To this day a few of these people continue to be difficult. I don’t understand. Yet, I’m okay with that. Emotional intelligence is not for everyone. Overall, I’m thankful for those who have cheered me on, showed me support, offered to help, and after the pandemic simmers down, we can celebrate.

Last, I want to emphasize how proud I am of my determination. I have mentioned this over and over, yet I want to stress why I’m proud. The moment I got up from the sofa and felt that rubber band snap and crawled to the bathroom violently vomiting, I could have laid down on the bathroom floor and just passed out. Instead, I immediately did all the right things by getting emergency help. I had a rush of adrenaline, that got my body off the floor to get myself down the stair ready for the EMT. At the hospital, I could have let them treat me with a migraine cocktail and remain silent. Yet, I demanded a CT scan. This demand saved my life when the found blood coursing through my brain. When I was transported and told I might die, because I inquired, I had tears but deep down I said, “no you won’t”. Through my 19 days in ICU with a massive brain surgery, I fought like hell to keep my mind going. I lacked comfort, my pain was out of control, I couldn’t sleep, and I was afraid. Yet, I kept going. After I was discharged two weeks later, I fell. I could surmise that they were weak legs from my stroke. Yet, I called my neurosurgeon and had a CT scan and sure enough it was hydrocephalus which required surgery the following day. That was the worst pain I have even endured in my life. I would take 100 craniotomies over the shunt surgery any day. Even though I cried, felt helpless for a period, I didn’t let my sense of humor go. I still made fun of myself, tried to laugh, kept my brain going. I didn’t want to give up. I returned to work mid-April. This is a bit soon for two surgeries for the type of stroke I had.

To date: Stroke, ruptured aneurysm on the 28th of January. Craniotomy on the 5th of February. VP Shunt the 5th of March. With all these massive situations and recovery, I was determined to go back to work. Since I kept my mind going from day one of this misery, it prepped me for my return. Did going back to work take a toll on me? No. Now, if I had to physically go back in the office it might be a different story because I was still a little leery on driving. I jumped back into work as if nothing had happened. Thanks to the work from home policy, I was able to logon early because my stroke fatigue came at the same time every day. Also, it allowed me to do physically therapy in the summer and have doctor appointments without interfering with work. So, while 2020 did not start off well for me along with a destroyed world, I personally feel like I have made significant changes, progress, and learned I have a fight in me that I did not know I was capable of.

So, while we all curse 2020, think of something you have changed in your life that made a significant difference. Do you feel more stressed at home, or are you finding that quality time at home is a reset button you needed? If not, did you learn that you have compassion that you didn’t feel you possessed? Overall, I’m going to take the direction that this stroke happened for a reason, and it was to give me purpose. So, while we say goodbye to 2020 and hope it burns to the ground and I will also dance around the flames, I feel that I have more positives than negatives in terms of self-growth.

So, cheers to 2021 and let’s hope we continue to problem solve and evolve.

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