Arlene
54
CPRS (Chronic Pain), 3 strokes
Combat with Strokes
I live in Kelowna and I have been here for my entire life. I have been married for thirty five years and I live with my husband. I have two adult children in their mid thirties. I have been living with chronic pain since 2002, and permanently on disability since 2008.
In 2016, I had a stroke. I was not feeling well in the morning, so I called my doctor’s office and said there was something wrong going on. I found that I was driving with difficulties, and my vision was like I was in a tunnel. It was really a weird feeling. As I got closer to my Doctor’s office I knew something was going on. As soon as I walked into the doctor’s office, the receptionist looked at me and said something was wrong. I was having a stroke in front of my doctors. I started feeling numbness, and it soon moved down my left side, which I also had chronic pain on. The hospitals stopped the medications that I was using, so I had no medication for my pain. I could not get my words out, which was terrifying to me because I used to be a wonderful communicator. I was a great writer, and I also read a lot. Not being able to communicate was really scary. I was having a stroke, but I couldn't even tell them what was there. It took me two months to understand that I had a stroke. It was hard to understand how it happened.
After three weeks or so I slowly began to write again. It took me six months to watch television: which appeared as scene after scene. But after watching four scenes, I often found that I could only focus on the first scene, because my brain could not move on.
The first stroke was seven weeks before my son was to be married. This was hard because I wanted to be able to dance with him at his wedding. I worked really hard, walking around the house so that I could at least stand up. Eventually, I was able to dance with him at his wedding.
The lasting issue I had from my first stroke was basically weakness on my left side. The memory issue was the biggest problem which is still ongoing.
I had my second stroke in 2018. With that stroke, the neurologist decided to give me medication that would break up the clots in my blood. With the first stroke, the doctors did not know when I started to have the symptoms, so they could not give the medication to me. My husband said that with the first stroke, he looked online and saw that I was searching “am I having a stroke.” So I could have had issues prior to my symptoms, not realizing it was a stroke.
My brother-in-law passed away at age 68, a week before I had the second stroke. The neurologist told me that each event happened when I was stressed, which was probably the cause of my second stroke.
I stayed in the hospital for several weeks. They intended to take me to rehab, but I refused. The hospital was already too overstimulating for me, and when I went down to the rehab area, it was just too much. The area had no space on the wall, no place for my eyes to rest. There was a lot of movement, noise, and the beeping sounds calling for nurses was also unpleasant. They would have put me into a room of four, and I would have had to deal with all of the noises of of visitors, nurses, doctors, physical therapists and patients. I told the hospital that I was not going to rehab, so they just let me go home, with no support whatsoever.
With the third stroke, my husband and I went to my cousins’ reunion in the summer of 2019. The stroke happened a week after we arrived home. This one was not as bad as the previous two strokes because it happened at home when my husband was around. He called the ambulance and I was taken to the hospital emergency. I was put in a room that was next to door where people came in and out. Because it was an emergency room, there were people screaming, yelling and running everywhere. I was also having chronic pain, because each time I had a stroke, my pain issue became secondary to the stroke. It was difficult for the nurses to help me.
I signed myself out of the hospital after a week or two. I felt the hospital was just not a place conducive to healing. At home, I am at least able to control my environment, which I find more helpful.
Community
With my first stroke, I was let out of the hospital with no follow up. I came back home, and I was on my own. My husband and I had to do everything on our own. My husband had to switch the bedroom around so we were closer to the washroom. I had a walker, and a special seat for the toilet.
I was on my own with no support for a hear and a half. During this time we bought elementary school books for writing and arithmetic practice. I also started a twelve piece puzzle, moved on to a sixty piece puzzle, and at this point in time I am working on a three hundred piece puzzle.
One day I posted my sixty piece puzzle on facebook and wrote about how proud I was to finish the puzzle without my husband’s help. One of my friends asked us if I have ever heard of BrainTrust. I did not know what BrainTrust was, so I phoned them. https://braintrustcanada.com/
“We can help you. We are here for you.” I heard. So I went to the organization with my husband, who drove, as I was unable to drive for five months after my first stroke. At BrainTrust I was interviewed, and they decided that there were a couple of programs which could help me. One of these programs was called “Returned Balance”. It was a program for people with different kinds of brain injury who sat together and told their stories, and connected with people who understood their stories, which was a breakthrough for me. It was amazing getting to know others who understood what I was going through!
BrainTrust also had a yoga program for people with brain injury. The program was wonderful because the lady understood that I had chronic pain, and there were movements which I could not do. She did not push me, but instead taught me other movements which I am able to do.
In another program, I was introduced to a set of problems which were used to train my cognitive skills as well as my hand-eye coordination. It was amazing that Brain Trust was there for me.
I had two more strokes after my first one, but each time BrainTrust, and all my friends that were there were always able to support me. The comparison between the first and the later strokes was totally different.
On Anxiety:
Here is a post Arlene wrote last fall, when she was anxious about a potential cancer diagnosis. This was just before she recognised she needed to speak with the doctor about medication to help with anxiety. She was feeling so overwhelmed with all her medical issues, including the brain injury.
What I have learned in my journey with this body and injured brain of mine is, it's best to be honest. Honesty can be contagious and if things were more honest in this world, we all would be better for it. The answer I have for that question took some time to figure out. I know I will feel this way again, and maybe my friends and family feel this way sometimes..so here is my exceedingly honest and maybe somewhat uncomfortable to read answer... I currently am doubting if I will be able to take on any more obstacles. I am finding my soul is vastly overwhelmed and it makes me feel fearful, and that makes my confidence in my own handling of these stumbling blocks diminish. This in turn makes me doubt my inner strength, and this then creates feelings that were similar to those worst moments of my journey here. It is hard. But deep deep down in the furthest regions of my humanity, under the heavy blanket of doubt, and the fear that is wrapped in rancid yellowed tissue, under the heavy block of stumbles, here is where I lift the golden wreath of love with my elusive strength. I know tomorrow will come and I will see this moment from a renewed view of a different day.”
Change:
For my family, the biggest change was my memory loss. I used to always be the one who remembers everything for my family, but all of a sudden, I was unable to do so. Not only was my stroke hard on my family, but for me to realize that I am not the same person before, was frustrating.
After the last stroke I started to experience anxiety. I never experienced anxiety in my entire life. With anxiety, it was so hard to do anything. When the pandemic popped up, my mental health issues, chronic pain, and recovery from strokes added many burdens. As a result I had to take medication to combat the anxiety.
I was able to figure out some ways to help with the situation. For example, I used to be very anxious about cooking, and thinking about the recipes. Now, I write down menus so I know what I need to have on my plate for each meal. I also have a system of daily routines which helps me go through the day: I don’t watch television, I am on my computer for a couple of hours, I craft a lot, I walk my dogs, and on Wednesday and Saturday I clean my bathrooms. Developing schedules is very helpful for me.
Another change was that I had a harder time doing things outside of what I originally planned. For example, last night, we planned to make stuffed peppers with chicken. My plan was to make taco seasoning, but my husband wanted to do another different kind of seasoning. So I had to stop myself from worrying about the change, even though things like that would have never bothered me before.
I still have a lot of work to do, but I have learned to be grateful for everyday I live, everyday I am still above the ground--whether it was a bad day or not--I am still alive. I am certainly not grateful for the strokes, but I am grateful for the lessons I have learned from having the stroke. My life is different now than it was before, and I have accepted who I am now.
I have lost many friends who don’t understand that I can not go out and be in a crowded restaurant. When I go to a restaurant, I need to be against a wall, in a corner where it is quiet. My friends that I have known for over 30 years, don’t get it. I don't blame them, or mind that they don't understand, because it also took me a long time to understand my situation.
I look fine, and I talk fine. When people look at me, they would not think that I have a brain injury. This experience is common for us brain injury survivors because it is an invisible disability. People sometimes misunderstand us, and find it hard to be empathetic to people with disabilities they can’t see physically. The misconceptions about people with invisible disabilities was probably one of the toughest things for me.
Views on Life (Writing from Arlene):
I have been asked many times: 'How do you stay positive with the challenges you have?'
The simple answer is that I always, regardless of the situation, seek gratitude. This is not an easy task, and often I really have to work at it. I will always look for the one little thing that I can grasp onto that will remind me to be grateful. Life can be hard, unpredictable, unkind, harassing and relenting....but for me, there will always be moments of peace, clarity, acceptance, love and understanding too.
I find that I have to PRACTICE gratitude everyday in order to find it...it's an adventure finding it some days. On those days, if I can't seem to focus on the good, I see that the adventure of trying is something to be grateful for.... Gratitude, humour, acceptance and love have brought me to a place where I can feel I can move forward, regardless of the challenges.
Today I am grateful for the simple act of waking up to spend one more day with those I love and admire. Like this rock I found a few months ago...I look and find love in the hard places. It's a good day.
Future:
In ten years, I will advocate for people who have gone through what I have. It has been four years since my first stroke. The longer I am from then to now, the more I am understanding, the more I see those who have harder times than I did. I feel very lucky for my abilities now, and I would like to help more people who have had similar experiences to me.
I met a gentleman at BrainTrust who has nerve damage as well as brain injury. We just connected because we have similar experiences, and the connection honestly changed both of our lives. In ten years, I want to connect with people, even in a minute moment, even just by saying “I hear you”.
Letter to 2021, from Arlene:
Hello 2021
This is the time of year many will find themselves looking for the direction they would like to see their lives move in the next year. I had so many things I thought I would do in 2020. We all know that this year was exceptionally difficult and that no one could have predicted the outcome.
I am choosing not to look back with sadness, regret or even a moment of negative thoughts, because I am still here. I don’t want to exhaust all my precious energy on anything that has happened this year which cannot change. In recent years, I have learned that I could be gone from this earth in moments. This realization has helped me become enlightened regarding what is truly important to my soul.
This has been a year that I have learned from and a year that I also have been exploring what life means to me. I have been exceptionally hopeful all year, even as the world around me was changing so drastically.
I did learn a few important lessons with the help of connecting with three things: One is a group of grateful people who also live with Chronic conditions including pain, and the other a book that guided me through the year and showed me new perspectives. And finally, the connection with my husband and family.
I have been able to cultivate what is important to me and how to manifest changes that I needed to make. Perspective is one of the biggest tools I have been working on. And for me, this has opened a new world of understanding of various situations. I feel that a veil of ignorance has been removed, and replaced by knowledge. This has resulted in a significant sense of freedom and understanding, it is life changing.
I have also been working on my listening skills. This is one that has been a rather hard chore for me. Due to my brain injury, listening is something I must purposefully initiate and concentrate on in order to feel I am successful. I have a very intimate relationship with all forms of communication, but at times it feels like it is genuine hardship to be able to communicate properly. I am not a patient woman (any of my family members will attest to this!), so frustration often materializes and sends me into a fit of tears. Regardless, I have been practicing listening every moment I can (I remind myself to stop and tune in to what I need to focus on).
This past year, I have worked on Reflection, Acceptance (of what has happened, past and present), values that are important to me, and my willingness to change. I have done this by writing my Intentions every day. If these intentions don’t happen, I have worked on acceptance of this. I have reflected on how I treat myself and others, which, at first, was not the same. So, through reflection I re-aligned my self-worth and confidence. This had been shattered each time I had a stroke, so it has been a challenge. I have thought ferociously about what values are important to me and gained understanding through experiences. These lessons have helped form my present self and change my outlook at the wonderful life I have been given.
It is the last day of this year and I have been thinking about how I will be approaching the new year. I don’t want to write resolutions, because they are so like writing my intentions (which I do every day anyway). I want to give myself a general guide to the shaping of the new year for my benefit. My brain requires me to have guidelines, and in giving myself these, I find that my anxiety is often aided.
In the past I have done yearly projects, such as my year of “YES” (where I did everything that wasn’t going to harm me, but scared me), my year of Gratitude (where I took pictures of something I was grateful for every day for 365 days) and the year of recovery (after my first stroke).
This year I have decided it will be the year of C.L.E.A.R...V.I.E.W.
C- Caring
L- Learning
E- Editing
A- Art
R- Reading
V- Venture
I- Improvising
E- Encourage
W- Writing
I look forward to focusing on ways to care, for my family, friends and strangers. I want to learn something new this coming year. I would like to edit my life, dispose of things I don’t need or want anymore.
I want to work on my art and read while I can. I want to venture outside of my comfort zone and improvise when I need to. I want to help encourage anyone who will listen about how gratitude has settled into my soul and opened my heart. And lastly, I want to continue to write, because I find this has been a self-affirming, positive road to travel.
I don’t know what this next year will bring to me and my loved ones, but I do know that I have the tools to make it through any of the bumps in the road ahead. I now have something to focus on and continue to do.
All of this is possible because of a group of grateful people, a book and the love of my family. I have a purpose and I am excited to see the new year’s adventures unfold. I can only imagine what grand adventures await me.
Interviewed and recorded by Vivian Liang
Edited by Ricky Ladyshewsky
Excerpts of writing from Arlene Hildred