Life has its ups and downs, and there are moments when everything seems to align perfectly.
I am married to my best friend and we work tirelessly to create a life that we can be proud of. It seemed like all the puzzle pieces were finally falling into place. I was on the cusp of achieving my dreams, feeling a sense of fulfillment and contentment that I had longed for.
My health was great, business was the best it had been in a while, I accepted a few positions to advocate for others and Adam and I were finally able to get started on the long list of outdoor-to-do projects.
But just when I thought I had it all figured out, life took an unexpected turn.
Two unexpected curveballs were thrown our way, shattering the illusion of stability and leaving us to pick up the pieces. For me, that curveball came in the form of two seizures, erasing a year of my life and robbing me of precious moments I wish I could reclaim.
That Morning
It was an ordinary morning, coffee was brewing, Adam was watching the news and I was in the shower when Adam heard a loud “thud”.
As Adam rushed upstairs to use the bathroom, he definitely did not anticipate what he would find when he pulled back the shower curtain. Instead of a peaceful shower, he was met with the alarming sight and sound of water running and the unmistakable sound of me having a seizure. The water continued to pour over me as I seized, and I can only imagine the panic that must have set in for him as he saw someone he cares for deeply in such a vulnerable state.
When the paramedics arrived at our home, I was unconscious so I had no clue what was going on but thanks to security cameras, I was able to see when I was able to advocate for myself, Adam, immediately sprang into action ensuring that those transporting me knew I had Severe Hemophilia A.
The Hospital
During my hospital stay, I only distinctly recall Adam being present. Additionally, I recall there was an incident involving the hospital system which prevented me from receiving my home-supplied Factor 8 medication necessary for blood clotting. At that time, the hospital lacked any stock of this critical life-saving medication.
For those familiar with my infusion routine, you know I typically handle it efficiently and without difficulty. However, on this occasion, despite my proficiency, my anxiety was overwhelming to the point I was audibly crying, shaking, I was having a full blown panic attack. I experienced significant fear regarding self-infusion, yet the hospital system would not assist, or allow my medication to be pushed through the IV that was already in my arm.
The particular hospital system did not have a hematologist on staff, so called one in from another hospital, and according to doctors notes, the hematologist that was called in, advised that I should be to be transported to the hospital system where my hematologist was due to my history of brain bleeds, but that hospital system did not accept my transfer because I did not have a fever.
With no viable alternatives, we proceeded with treatment at that hospital system. Upon discharge, we were advised to pursue follow-up care with the hospital network where I usually receive my medical services since they knew my medical history and was aware of my history of brain bleeds.
The Follow Up Anxiety
Since my seizures, I have had a vast amount of follow up appointments and tests to determine why these seizures happened and what the long term effect may be.
Each visit to the doctor is filled with anticipation and anxiety as we try to piece together the puzzle of why these seizures occurred in the first place. My doctors are uncertain of the long-term effects of these seizures or if my prior brain bleeds as a child may have contributed.
We discovered that an entire year of my life had been wiped away. I am still devastated to realize that one whole year of my life was missing from my memory, as if it had been erased from existence. It felt like a cruel twist of fate to lose precious moments that I had held dear. One of the things that happened that I no longer have the memory of my beloved grandfather's passing and our last Christmas holiday together.
Not being able to remember important events and cherished memories is heartbreaking, leaving me feeling lost and confused. The gaps in my memory have left me wondering what else I had forgotten and what other significant moments had slipped through the cracks.
It was a painful realization that I had to come to terms with, trying to piece together fragments of my past in order to make sense of it all.
Isolation
Society often wants people to believe the idea that asking for help is a sign of weakness.
We are conditioned to believe that we should be self-sufficient and capable of handling our own problems. This stigma surrounding asking for help only added to my reluctance to reach out. I felt ashamed and inadequate as if my struggles were a reflection of my own shortcomings.
One of the biggest barriers I faced was the fear of burdening those around me. I didn't want to be a source of worry or inconvenience for my loved ones because I had already worried them enough. This mindset only intensified my feelings of isolation and made it even harder to ask for the support I desperately needed.
It took a significant amount of self-reflection and courage to break free from the chains of silence.
Slowly, I began to open up to a select few individuals who had shown unwavering support throughout my journey. These individuals became my lifelines, offering a listening ear, empathy, and guidance. Their non-judgmental presence reminded me that I was not alone and that it was okay to lean on others during difficult times.
As I started to share my struggles and ask for help, I discovered the power of vulnerability.
Opening up about my experiences allowed me to connect with others on a deeper level. It created a space for empathy, understanding, and shared experiences. I realized that by being vulnerable, I was not only helping myself but also creating a safe space for others to share their own struggles.
Asking for help also required me to learn to trust again. Trusting that those who cared about me genuinely wanted to support me and that they were capable of handling my vulnerabilities. It was a gradual process, but as I witnessed the unwavering support and compassion from my loved ones, my trust in their ability to be there for me grew stronger.
It is important to remember that true relationships are built on honesty and vulnerability.
Holding back your struggles may create a facade of strength, but it will also prevent you from receiving the support and understanding you need. While there may be some who cannot handle or accept your vulnerabilities, there are also many who will rise to the occasion and offer you the comfort and strength you need. By opening up about your struggles, you allow others to truly see you and connect with you on a deeper level.
Do not let the fear of rejection hold you back from sharing your struggles. Your true friends and loved ones will stand by you through thick and thin, and you deserve to have that support in your life.
The journey of rebuilding my life after the seizures and the loss of memories was not one I could undertake alone.
It required me to confront my fear of asking for help and to challenge the stigma surrounding vulnerability. Through the power of vulnerability, I discovered the strength in reaching out and the importance of building a supportive network. Asking for help is not a sign of weakness, but a testament to our resilience and our capacity for growth.
Remember, it's okay to ask for help when you need it, and there are people who care and want to support you on your journey.
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