Being an Advocate for Your Partner

Whenever one experiences a jolting change in life, it sends a person into an area where they rapidly attempt to make sense of what happened. When a crisis in life comes, it is beyond confusing. Some people experience depression, some are confused, upset, and angry. For others, it can lead down a dark path that manifests into a waterfall of bad decisions. Jolting events can change a person forever in ways that cannot be seen during the crisis. Lyn’s stroke and cancer journey changed me forever, however, I am choosing to use this change for the positive.

This jolting event suddenly forced a change in the outline of how I thought my life would go!  I think most people have an idea of how they see life going, or how they hope life will go. Of course, the path and journey changes as life unfolds, however, none of us can imagine a tragedy, or crisis. While I didn’t know my exact lifepath, I can safely write that a stroke, cancer, and Lyn’s passing were not amongst the chapters I planned for my life.

I told a close friend that at my stage in life, I never thought I would be in the position I am in—a widower. This new chapter wedged into my life and there was nothing I could do to change it, because it was suddenly written and inserted into the book forever.

However, this life jolt left me asking questions. At first, I was lost, and in a fog. I wrote in a previous blog that I was seeking answers to questions because I was trying to make sense of what happened.

Unfortunately, many of these questions cannot easily be answered because we do not have any control over what happened. Sometimes life just happens.

In Lyn’s case, a stroke and cancer just happened. We could ask all the questions we wanted, but it was not going to change the fact that Lyn had to recover from a stroke and go through cancer treatment. Thankfully our faith and trust in God quickly grabbed us and we understood that something out of our control happened. More than seeking answers to questions, that likely couldn’t be answered, I needed to focus on Lyn, because she needed me as her partner.

I quickly learned that I needed to become her advocate. I have always been interested in the medical field, and I find the brain the most fascinating part of the human body. While awaiting news about the cancer, there was not much we could do while Lyn was in the Intensive Care Unit (ICU). We had hours to pass, so I began to try and understand what Lyn was going through.

In all honesty I expected Lyn to bounce back within hours, which was completely based on nothing but a naïve understanding about the seriousness of her stroke, what had happened to the brain, and the treatment that is required. A parade of medical professionals was coming and going from Lyn’s ICU room, including Speech Language Pathologists (SLP). I watched as they were methodically determining a baseline for her to determine a possible course of therapy. The SLP professionals were doing their best to assess, and assist Lyn, however, there is only so much they can do on their quick hospital rounds. I needed to pay attention and be involved in Lyn’s therapy and recovery. I needed to be an advocate and helper.

As I watched the various professionals enter, I began to research the brain and strokes, and I quickly determined that Lyn was suffering from Aphasia, and a bit of Apraxia. Aphasia is a condition that prevents one from the ability to speak, write, understand language, and it can affect both verbal and written communication. 

Lyn had some temporary issues with Apraxia and had an inability to perform familiar movements on command. So, while Lyn could understand me telling her to swallow, or to smile, she could not complete the movement. She had the desire, but she could not execute the request. Lyn had an issue with her right-side strength, right side facial weakness, and the inability to swallow, or breathe through her nose. She was telling her throat to swallow, but she could not.

As I was watching the SLP professionals I was not only learning from them, I was rapidly learning on my own because I knew once released from the hospital, I was going to be the best cheerleader, encourager, supporter, and therapist Lyn could have. I felt I was the best advocate to support my wife and meet her needs. We were partners, and as partners you respond to what your partner needs.

I quickly recognized that Lyn completely comprehended everything being said and asked. Lyn had sharp long-term and short-term memory. She clearly understood what was happening, but it was very frightening because she had no way to convey what she was experiencing, feeling, and fearing. She was trapped in her mind and it was terrifying for her, and I could see this, and I needed to be her voice.

I had to be an immediate advocate for her and help the doctors understand that they needed to listen to me because I not only knew Lyn’s medical history, I understood the fear she was experiencing, and conveyed these fears to the doctor. For instance, I was quick to recognize Lyn had a fear of being laid flat in the bed for doctor examinations. I could see the panic and fear in her eyes and hear the fear as she cried when they tried to lay her flat.

When the doctor explained that they needed to do it that way, I asked the doctor if they understood her fear. They did not. I stated that she could not swallow or breathe through her nose and by lying flat she had the sensation of choking, and fear of suffocation! Lyn immediately shook her head, “YES!” This was a revelation to the doctor, and they came up with an alternate method of examination.

Being an advocate involved paying attention to what was going on with Lyn, but also conveying these observations to the medical team. Without me advocating Lyn would have had no voice.

As Lyn was laying in the bed, I came up with ideas to help her in brain recovery and create peace. I noticed that Lyn could sign her name almost perfectly. She could write our kids names with no effort by day two. She could even write a familiar basic sentence that involved one of our kids’ names. However, I also recognized that Lyn had zero ability to form a new sentence (in writing) or respond to a question that was a new thought. She also could not recognize the alphabet but could sign her name and our kids’ names! It was fascinating! Her long-term memory, and ability to write something familiar was completely intact, which amazed the medical staff.

I was able to devise games, or activities while sitting in the hospital to help her develop and grow. We were trying to have the brain create new pathways of communication. Once we began to discover what the stroke impacted, we were able to rigorously move toward exposing her brain to these things that could start the healing process. We saw rapid recovery!

Being an advocate for Lyn was such a vitally important part of her brain therapy and recovery.  While in the hospital she was getting two to four visits from the therapists, which was amazing and needed because they were the true experts that taught me just a bit about working with a stroke patient. Wow, I learned! However, I quickly discovered those short visits were lacking what she truly needed.

Lyn and I worked for short bursts throughout the day, and I discovered that I could start to comprehend her needs by simply spending time together. Many weeks passed before Lyn could say even a partial sentence, however we learned how to communicate through pictures, questions, and working through difficulty by simply being present and patient. I learned so much about my partner, her needs, and how I could best help by simply being together. I learned what true teamwork in a marriage looked like during this time.

However, it is important to add, that Lyn was also her own advocate during the entire journey. While she needed me to do a lot of the talking, she communicated what she wanted and needed. She was relentless and worked almost tirelessly to make progress in all aspects of treatment and therapy. It was a true team effort of advocacy, communication, discipline, and hard work.

As I continue through life, my experience as being Lyn’s advocate (and remembering her hard work) has helped me in being patient in other situations as well. It has also made me much more responsive to the needs of other people and has created a desire within me to advocate for those in need, when possible. While I never wanted a chapter in my life that included Lyn’s illness, I am a better person now than when the chapter was being written. I thank God for his good work in my life, and the blessings he has provided.