It’s innate for us to have semblance of control in our lives. If gives us consistency, direction, predictive outcomes, and most of all power. Once it’s knocked out, things are disorderly and discompose. One might wonder if you can regain it or if it will feel different and/or multiform. Medical trauma is one of the largest contributors to knock control away. It’s something that you can’t pilot, especially if it’s spontaneous. Your liberties once stalwart is stripped and you flounder your way to get it back.
This is a hard pill to swallow because medical trauma is different for everyone. Stroke victims suffer in various ways, from mental anguish and/or physical and cognitive disabilities. There isn’t a one size fits all manual to cure or help stroke victims. We each process things differently at a variant speed. We can read stories from sources that speak on behalf of outcomes, but the truth is, no one can tell us when control will resurface because it’s up to the individual when they want it back.
It’s paramount as a community that we share our unique stories because a physician, therapist, or others can’t tell us how this journey is going to take shape because they aren’t living it. So, I candidly implore that you read other stroke survivor blogs, or follow groups where people share their experience. These platforms exist so you can gauge where you have landed in your recovery or help, but as I have always expressed, we are not alike. I have two examples: 1) You might be someone that must rely on someone to do physical activities. It’s either temporary or permanent, and it’s a sense of control that you no longer have. Some people have adjusted well and look at control different in these circumstances. 2) I have come across questions about VP shunt surgery and the expectations for recovery. When I go down the comments list it varies from “I recovered quick” to “It didn’t hurt” or it was “hard”. For me, it was one of the worst surgeries I’ve had, and my recovery took longer than my craniotomy. The bottom line, we like to seek advice because we are trying to keep control of a situation that is out of our hands or to establish a baseline to see how far we have come. I look at it as reassurance before entering a danger zone.
With my case, I like control, yet not all things in my life fit neatly in that box. To the best of my ability, I do what I can to make sure control stays in my lane. When I had my stroke, there was nothing to predict that this event was going to happen and saving my life was not up to me. I had to relinquish management in the hands of credible healthcare clinicians. It was toilsome because I fiercely tried to fight what was happening to me. I didn’t relish that I couldn’t steer the direction of my health. Yet, I had to. I did a lot of thinking and problem solving in the hospital and I realized that I had to let go of thinking that I could control my surgeries, or survival. However, I did find that I could control my way of handling the situation. It was messy and took several different detours, but I found that the more I thought I had control, I could amend managing my expectations and recovery.
Once I was in the clear after two surgeries, I was no longer in the hands of a medical team, which at that time I considered my crutch. If something went wrong, there was an immediate response time. This did not give me solace and containment. It was now my que to get my life back into order. First, I did everything I could in order to undoubtedly understand what I went through in detail. I ensured my house was set for medical emergencies if one were to happen again. I was in physical therapy to control my movement. You name it, I did it. The one thorn that was very hard to overcome however was controlling my emotions. It comes out at different periods of the day, provoked or unprovoked, and questioning when it will stop is distressing. I went through different websites to understand the emotional side of things and it’s vacant. I’m absolutely lost over the lack of tangible information that isn’t glossed over for stroke survivors. I visited other forums of survivors for emotional guidance, but I realized we are so diverse. I remember talking to my husband, that it seemed hopeless according to everyone’s posts. My husband brought up a good point that people tend to post when they are going through something at that moment. There isn’t a need to post on the forum when they are having a great day because it’s a great day. That gave me a moment to pause and think that it’s true. Lately, I have several good days, but I don’t go on the forum to say, “hey everyone, I’m doing great”. Then there are other stroke survivors that are several years post-stroke who have it figured out, or at least on the surface. They offer advice that’s very insightful, but I wonder if they still have issues with control. I’m slightly tempted to ask them for research purposes. It does give me immense comfort when I see “I’m 8 years post-stroke".
In my infancy of gaining knowledge 8 months post-stroke, ruptured aneurysm and hydrocephalus (and a spider bite- just thought I throw that in there because why not) I found that my healthy recovery was to regain control with an open and honest format. It’s helpful but not a misleading. With my mental health all over the place, I was on the quest for structure. First and foremost, I had to acknowledge I was not dealing with this well. Staggeringly I struggled with fifty percent feeling like a nut and the other fifty percent feeling sorry for myself. On the surface, it looked like I had it together. I had composure, tried to illuminate the room with laughter and comforting words. This was my way to control how others around me felt. I wasn’t thinking of myself in the moment, I was more concerned with my husband, family and friends. If they saw that I was stable, it would give them peace, yet it wasn’t giving me peace. This wasn’t healthy. My analytical self-looked up the PTSD and the seven stages of grief. I wrote extensively about it in my blog “Greif to Zen”. I understood after reading about it that we go through grief, but what it doesn’t point out is that once you hit number 7, it doesn’t stop. Maybe a lot of people know that, but this is new to me, so I was baffled. I discovered in time that the process won’t be loud like it was in the initial phase of recovery. It eventually becomes a quiet voice that eerily reminds me of what happened. I understand that I can’t stop emotions from coming but counteract what I do by gathering enough tools to help support me when I go through them. The toolbox grows each time you circle back. One of the tools that I learned was honesty and the second one was let it be. If I’m feeling sad because a memory is triggered, or perhaps I’m stuck on something because my memory is struggling, I will be honest and say that it sucks, and I might cry, or get angry. Once the emotion passes, I feel good, back in control. I didn’t suppress it. It seems funny to say that I felt control by letting something I can’t control flow. But that’s the point of this journey- control looks different than it was before. I will admit, I had no clue there were several different emotions out there.
That’s a journey itself, but I kind of like experiencing them.
Now for the negative. There are other aspects of my life that I’m still struggling with that I can’t grasp to fix. I still have massive body dysmorphia, as I have gained a little weight from being sedentary with lack of exercise. I worry that I have lost control to stop it. I have tried going on walks, eating less, eating healthy. I just can’t seem to shake it. I suffer from short-term memory loss, but I can usually recall it back within a few minutes. Not bad, but still frustrating. When I try to express myself out loud and someone doesn’t get it, I find myself getting frustrated because it makes sense in my head, but my words aren’t matching. I’m struggling because it’s out of my hands. I can’t control how people treat or view me. I don’t expect special attention, however I think there are some instances that people seem to forget that I ever had a medical trauma still trying to process this and fragile. With that, I can’t cure my body's metabolism, it’s crazy because before my stroke I couldn’t gain a pound no matter how hard I tried. It’s such a trivial issue, but it’s not to me. I can’t snap my fingers and retrieve information at speed or what comes out of my mouth. I try, but it’s something I will never have control over, but I can transform these issues into another form of control. Doesn’t make sense but I can’t continue with these factors and stumble, because it’s counteractive to give a boost that I need in order to regain some sense of ascendency over these things. In true form of how I problem solve, I wrote down what I can, can’t, and possibly control. I needed to visualize it so I could understand what made sense. I know there are items might regain but it will take work. My ah-ha moment came when I realized that my mentality is the key. It’s the essence of discipline to get into the right mindset to work on other areas.
There are other little quirks that I won’t go into detail, but overall, this is an experiment for me to redefine what control means to me post-stroke. I want people to understand that we are all different so what works for me might not work for you. The common goal is that we are all seeking a way to get things back. We share common concerns on long-term impacts on our life and question if another occurrence might happen and if the outcome will look different. There is no crystal ball that will give you an answer. The best thing that you can do is manage your expectations into reality and take a win for the things that you can dominant, and let go of the things you can’t, while also spinning it into a positive direction. It’s empowering once you have all these moving pieces set into something you can manage. When you read about other survivor stories or concerns, take a piece of it as a learning experience, but don’t mold it into your own well-being. For me, I want to implore to my fellow survivors' that control is different, but only you alone, can materialize from it.
Sadly, it pulls at my heart that there are limitations for some survivors and that’s access to healthcare in a timely fashion. There are several people who have continued to voice their concern that something is happening to them that doesn’t feel right. Instead of calling a provider, they ask others about medical advice from people who are not credential clinicians. It pains me because I don’t know what the circumstance is. Are they afraid of calling help? Are they in a country that has a lot of red tape? Is the facility difficult to get a hold of? Or are they trying to gauge if it’s normal before they make a call? Or sadly, did they call and not get the answer they were seeking. Full disclosure, I did this in the beginning of my journey. Yet, I wasn’t seeking medical advice, I was just trying to make sense of what I was going through. With that said, I feel that the platform is becoming a form of triaging something for another survivor and that can land in a dangerous territory because if person A posts that they have been developing massive headaches that have categorically become chronic. Person B might be inclined to say it’s normal, because they have daily headaches. There is a potential that this can be dangerous sign for person A, but because people have stated it’s normal, they might not seek medical care. This person is explicitly seeking answers to gain control over a feeling or medical issue through reassurance. I do believe that these groups are beneficial to talk things out, but I highly recommend that if you have something physically develop, or your emotions are too much of an overtaking, a medical professional is the best course of action to control your healthcare worries. On the flip side, if you participate in answering questions, which I have done myself, please use disclosure that first of foremost they need to contact a medical professional.
All and all we share a common denominator in this community-control. Not the same type that we once had pre-dating our stroke or medical trauma. Yes, it sucks, we have a lot of work in the coming days, weeks, months and years to figure how to regain it back, or mold it into something different. Yet try to take splendor with this work. We get a second chance to reinvent ourselves. To me, that sounds exciting, that I can come out of this ordeal as different. For me step one is acceptance followed with becoming realistic, authentic, and raw to help elevate me to the next level. Never be afraid to demand something that you need. Never hold back your feelings because you worry people will perceive you different. You will never know the impact that authenticity plays to benefit someone else who is scared to express what they can’t figure . Not to contradict what I mentioned about triaging on platforms, I am about expressing your journey becoming beneficial.
There is an old saying in all recovery groups about accepting the things you can and can’t control. I used to roll my eyes at that saying, but now I understand the value of this. If you are struggling with control, please reach out to someone that is clinically trained. If you just want to talk about your journey to feel a kinship or gain some perspective, please reach out to other stroke survivors because they know better than anyone else what you are going through. Take care of yourself, allow some grace, time and healing. This is a life altering trauma and the fact that you are alive and given a second chance, is something to marvel at.
Last, medically speaking, I believe there is a major gap in healthcare for survivors to quickly connect with a professional wondering what is and isn’t right and key. This is control taken away, and there needs to be more research about the ways to combat this rather than someone using other platforms to get their medical needs answered. I feel that, and I don’t know if others share this, but once you are discharged, it seems rushed when you phone it in. Or, perhaps the whole picture isn’t analyzed. This is something, I am advocating for.
Stay tuned for my next blog, “Dear Wendy” which is formatted as my future self giving advice about what I'm going to endure. So far, it’s a tearful one.