Back to School: Locker Nightmares

 Today, a friend of mine posted a photo of her son standing at his locker entering in his locker combination. Instantly, the photos jolted me back to my locker challenges while in high school.

We were assigned lockers our freshman year and given the combination. I CONSTANTLY had issues trying to find my locker. It was on the second floor. The teacher’s rooms and lockers were on the perimeter of the hallway which made a square. There were stairwells and an elevator in the center of the square.

Whenever I ascended the stairs, I could never remember if I had to go to the right or to the left to get to my locker. Inevitably, I would choose the wrong direction. I would often have to make nearly an entire lap around the square before I arrived at my locker. Although exercise is important, this was not a welcomed activity when I was trying to hurry between classes.

Once I arrived at my locker, there was the constant panic of remembering my locker combination. I frequently forgot the combination. Even though I might enter the combination 5 times a day, it was always a struggle to remember the numbers. On Friday, I would be fairly proficient at the combination. But by the time Monday came, I would have forgotten the combination over the weekend. I would struggle for five to ten minutes trying to remember the numbers. Eventually, I could usually get the locker open.

More panic came when we had one week off for Christmas. I would arrive back at my locker after a week off from school, and I would stare in bewilderment at my locker. What was the combination!?

And things were even worse after being away for a few months for summer vacation. I would look at my locker on the first day of school as if it was a foreign object. I would nearly cry trying to remember the combination.

When I could not remember the locker combination, I would push aside my pride and head to the office. I would sheepishly ask the secretary if she could look up my locker combination. It was not bad my freshman and sophomore years, but the shame I felt my junior and senior years was off the charts. I had had my locker for three and four years, respectively. And I could not remember the combination!!!

During my senior year, when I could not recall the locker combination, I could remember the approximate hand movements I needed to make to turn the combination lock on my locker. If I closed my eyes and just let my hand turn the lock from memory, numbers which were close to the combination were entered, and I often could pry the locker open upon entering the final number.

When graduating from high school, most people were happy for many reason, but for me, I was perhaps the only person excited that I would never have to use a locker again!

Bittersweet: Uploading my Final Cruise Video

For the last 12 weeks, I have been sharing with the world my adventures of going on a cruise. There were many, MANY unexpected twists and turns. I am so thankful and grateful I was able to go on this once in a lifetime adventure.

Editing these cruise videos as A LOT of work! I filmed on four different devices and had major issues with audio on one of the devices, which meant, for one video, I had to re-record all the audio.

Despite all these challenges, it has been a blessing to re-live these incredible days, week after week. It has reminded me of everything I was able to see and do. This week is the last video, and I am rather sad. Perhaps, in the future, I can go on another grand adventure, but for the moment I need to focus on my health.

To everyone who joined on this amazing journey, thank you. I appreciate all your love and support.

Patient advocate: A new role to fill

After spending over the last decade as being the patient, last week I was introduced into a new role: being the advocate for my dad’s medical care. It was odd going to a medical appointment, and the decisions being made did not involve my health. Although I have been the patient many times, I was unprepared for this new role.

 

During the appointment, I did not take notes. I regretted this as soon as we left the office as I was overwhelmed with things which needed to be done—including racing off to go to my own medical appointment. When trying to sort through what needed to be done next, I was foggy on the details.

After the appointment, I was placed on my dad’s chart as someone who could talk with the medical staff. In short order, I soon started corresponding with the physician and her office. It was very odd having this new role of authority. Shockingly, the medical staff took my concerns and questions seriously. I was not just a girl on life support—I was an advocate for my father.

Since the appointment, I have done some research to ensure the care my father is receiving is the proper course to follow. I am confident in the my father's medical care, but I always want to double check the tests which are being ordered are the correct ones.

I am slightly bewildered in this new role. I am not managing my own health. When I make a decision about my medical affairs, I am the one who will have to live with whatever decision is made. However, with my dad, he is the one who will have to live with whatever decision we agree upon. I have to keep reminding myself, we cast the lot, but God determines the outcome (Proverbs 16:33). As much of a novice as I am at being a patient advocate, I have to trust God is leading the way.

7 years of blogging. Thank you Milly for the inspiration!

In the summer of 2016, I learned that a very dear friend of mine had passed away. She had Mitochondrial Disease and died from respiratory failure. She never got a tracheostomy tube. Instead, she fought to her death using a BiPAP machine, which in the end was not strong enough to sustain her. She needed a tracheostomy tube.

I do not know many of the last details of my sweet friend’s death. I do not know if my friend, Milly, was advised she needed a tracheostomy tube, or if her medical team thought a BiPAP machine was all she needed.

In short, I was deeply grieved to lose such a dear friend.

On August 1, 2016, I decided I wanted to start a chronicle of my adventures in honor of Milly. Milly had a YouTube channel. I wanted to continue her legacy. The account was not supposed to be of any importance—just my daily life with Mitochondrial Disease. I was ambivalent if I wanted to be like my friend, Milly, and have a YouTube channel, or if I should just do a blog. In the end, I decided to do a blog. I did not have a camera, which was the ultimate tipping point of deciding against doing YouTube videos.

A few weeks later, my breathing did a dramatic nosedive. I was thrust into the world of medicine, begging doctors for help. I could not breathe. My blog soon became a source of solace when my world seemed to be crashing down. But together, we pulled through many harrowing situations.

Eventually, in April 2020, I did launch a YouTube channel. I had been given an old computer which had a built-in camera. The focus of my YouTube channel was educating people about
tracheostomy tubes and ventilators. I always think about my friend, Milly. If she would have found my YouTube channel, would a video of mine have helped saved her life? I will never know.

Instead, I try to honor my dear friend in all my videos and blog posts. May her memory be a blessing.

(For anyone interested, I just joined Instagram. My username is lifewithavent if you wish to follow me.)