Updated: Nov 18, 2020
In two months, I will mark my one-year post-stroke anniversary. At this moment, I’m struggling. My mind is doing a pirouette with mixed emotions. On one hand I’m illustrious that I didn’t curl in ball and feel sorry for myself. I metamorphosed to make my story heard and to make a change. On the flip- side, the closer I get, a tsunami of flashbacks torture me. The hang-up has left me feeling uncertain what I’m going to do with one-year mark. I see people celebrate like a birthday. I’m leaning in that direction, but I know I’m going to have a mental breakdown and cry because it still haunts me. Perhaps this will only happen my first year and then it will subsequently get easier as the years go on.
For the better part of the year, I have sorted through every emotion possible and plastered the range for everyone to see. As I started to understand my despair, I began to obsessively research about my type of stroke, strokes in general, brain aneurysms and hydrocephalus. I was Alice that went through a rabbit hole of anger and frustration, which took me by surprise. I didn’t find what needed, and I know there are others like me that feel the same. I wish I had a modicum of unthinking with the nature of this beast because it would be more liberating. Yet, I couldn’t let it go which only increased my thirst and deep obsession to understand. I knew there was a disconnect, but I had to examine all the pieces to figure what it was. I concluded it encompassed awareness, life plan after discharge and making information more transparent.
My initial interest burst when I did a goggle search for support groups. There wasn’t a lot to select from, and if there was, the topic didn’t fit my narrative. I looked through Facebook and found groups geared toward my stroke. At first it seemed beneficial and supportive. As time passed, I noticed a shift on the forum. People used the group as a form to solicit advice from non-professional. I understand human behavior to seek input when you have acute pain. These seekers are inquiring what is normal or not. I cringed because it's a dangerous line to cross. I have vocalized several times that it’s okay to talk about what's ailing you, however your number one action should involve placing a call to your doctor. For those giving advice, your experience might be different than theirs and your answer could put them at a medical risk. I came close several times to send a message that while it's great you want to relate, please use a disclaimer to contact a medical provider after giving your advice. I also came across a hydrocephalus group that turned out to be non-supportive and dishing advice just the same. I remember my breaking point came when a new moderator was introduced. Their tone was harsh and they became a dictator which rubbed me the wrong way. These are vulnerable people, and the tone was utterly wrong. I immediately distanced myself from this specific group, and I often wonder if others did the same. This is why I use Instagram. The platform is different, uplifting and supportive which is exactly what I needed. In time, I forged healthy relationships with people that had my back and in return I had their back. Who would’ve thought that Instagram would provide the relief I desired? Generally, when we think of this platform, it’s visual not informative. After entering the world of stroke via Instagram, I felt my momentum shift along with my mood. I could direct people to my blog for multiple purposes. One to support, second to give information and the third give another perspective.
Next, I transitioned into videos. I was scared when I did my first one because I didn’t have a script to go off. It was just me rattling out what was on my mind or what I was struggling with. As I continued to do video segments, I got more comfortable and felt like I could get more information out than in writing. I wanted to reach out to a wide audience, so I did blogs for people who like to read and videos for those who are visual. The remarkable part of doing videos which I didn’t expect was it provided another form of therapy. With all this progress there is a downside to this.
Spending my nights writing blogs, doing videos, research, begging groups to provide me information, began to wear me down. I never felt that I wasn’t providing value, and the problem was that I was beginning to relive my experience repeatedly. As I dived into the research, my blood began to boil over. Yet, I continued to torture myself, because I thought it was my duty because I was given a second chance. I won’t stop. I will never stop. So, I had to get creative and think of different topics, so it didn’t feel like a loop. So, I’m in a conundrum right now. Where do I go from here?
I lightly mulled over this for months. Now it’s at the front of my mind. I learned that 2020 is my learning process with handling emotions and recovery. My one-year mark will begin the construction phase by laying everything out that I have learned. My hope is to take segments of my blog and add more material so I can turn it into a book. I also want to become a resource to the stroke and brain aneurysm world by public speaking (if that ever comes back), campaigning for more awareness and volunteer to help new stroke victims and their family members. I want more traction. Support and advocating are critical pieces of recovery. Which leads me to the next part for this reason.
In recovery I learned that there are two qualities of humanity- good and bad. When I had my stroke, I had several people reach out to ensure I was doing okay. Others ignored the situation or were flippant and difficult during my recovery. That’s okay, I don’t expect to be treated like someone special, but I felt that I deserved a little more than the responses my family got from others. Yet, I have grace because I understand people process information and react in their own way. It doesn’t mean they don’t care, it’s not in their genes to show it. Remember that when you feel like you are not worthy by another person- they may care they just don’t know how to show it. Another piece that I learned was the frustration of doing paperwork which got mixed up several times and the communication was all over the place. I spent most of my recovering on the phone rather than healing. I remember hanging up the phone and crying to my mom that I just want to rest and not be stressed out. My husband did the best he could, but this process was new to him and his focus was on me as it should be. So, while I’m processing what happened along with my two surgeries and the excruciating pain, I had to be an advocate for myself to get the ball rolling. All of this made patient advocacy critical for that patient and their family. The advocate can get everything figured out so the patient and family can focus on healing and the advocate can be the point of contact. So, with learning all these things how has my mood changed?
My mood has been shifting all over the place. It started three months ago; I haven’t identified the source of why it changed. I saw myself dip into darkness. I’m still drowning. I’m trying with all my might to see the light and be happy, but I just find myself caring less about things that I used to care about. I know it's depression and it’s strong. I did a piece about the seven stages of grief and how it’s on a constant loop. I’m in the anger phase of that loop. Will it flip over? Of course, so I’m not overly concerned, but it makes life rather difficult right now. I have tried to blame it on the pandemic, the world, the lack of people understanding, politics, lack of human compassion etc. Blame can’t be my go-to every time I feel a certain way. I am responsible for my mood and only I hold the power of how the outside factors affect me. I just thank God my home life and family and friends are my solace. Speaking of my solace, that’s an extra factor weighing on me.
Recently I had two scares with my parents. My father had an accident requiring major surgery and my mother was admitted for high blood pressure after visiting a wound care clinic. I didn't want to get news that my two rocks in my life are having medical issues and I'm completely helpless. I understand now how my husband felt during my stroke- helpless. Both my parents are doing good right now, but when you get the call, your heart sinks. Of course, my parents say it’s nothing compared to what I had, but I always say you can’t compare. A medical emergency is a medical emergency and it’s scary. I just can’t handle anymore crises now. I wish I had my sister’s attitude, where I know she is concerned but, on the surface, it seems under control.
Stress is another factor that is weighing me down. I have so much of it and some of the stress I can’t change. Before my stroke, I was able to handle stress like a pro. In fact, I thrived on stress because it motivated me. I was like a junkie, I needed more of it. I no longer have room for it and I’m not handling stress like I did before. I find myself getting flustered and angry about things. I look in the mirror and ask what the hell happened to you. It makes me feel weak, and that’s something that I have never liked. I pride myself on being a strong woman, never backing down or making concessions to someone. Yet, I must do daily reminders that I am strong. I did all the steps to rise above and control my destiny. It’s something all of us must remind ourselves.
Fear is something that I am going through as well. I fear that I’m going to have another stroke. There are headaches that come that feel equal to the one I had with my stroke. I feel vertigo, speech slowing down and stroke fatigue. It doesn’t happen all the time and it comes at night. These things that are happening, could be from stress or pure exhaustion.
I know my ten-month period seems like doom and gloom right now, but I assure you that I don’t feel this way every minute in my life. I still have that smile, laugh, jokes, sarcasm and hope. It all boils down that I'm getting closer to reliving the worst moment of my life. With December, although I despise the cold, my mood is generally happy because I love the holidays. I love seeing Christmas lights, the Menorah. It’s peace. An added bonus- it's my wedding anniversary month. The bliss of remembering the warm Florida temps, the waves crashing, the Christmas lights on the palm trees. The special moments of exploring with my husband. These are things that make me pause and smile.
To end, I need to remind myself that I’m still in the infancy of my medical trauma and processing everything. I need to work on myself emotionally, as we all should do. I know I feel darkness right now, but I never doubt there will be a light to guide me out. This is my truth- no sugar coating the experience.