Thursday, August 29, 2019

From guilt to happiness, five dollars not wasted

Many years ago, I traveled to Orlando, Florida to compete in a national competition. At the beginning of the week, the contestants and their families enjoyed a fun day at Universal Studios. I had made four new friends during orientation, and we happily ventured off to the park. We left our moms at the front of the park, and the five of us explored the property.

At the back of the park, there was a fun zone which included several carnival-type games. One girl in the group exclaimed, “Oh look! Let’s go play this game!” She eagerly sat down at a water gun game and paid the theme park employee a dollar to play. All the girls joyfully sat down and also agreed to play the game. (Side note, ever since I was a small child, I have been very frugal with my money. I do not spend money on frivolous actitives or things. I prefer to save every penny and feel rich than to spend money and feel poor.) I declined to play the first game. I watched as the girls screamed with laughter as they played the game. When the competition ended, the winner received a small orange and black tiger. Feeling left out, I agreed to play the next game with the girls.

We played many times, and I ended up spending five precious dollars. During one of the games, I won a small plush tiger. I was happy I won, but I also felt very guilty. How did I get pressured into spending five dollars to win a stuffed animal? I am twelve years old. I am too old for this type of activity and this toy! For the rest of the day, the five of us went on numerous amusement rides. When the sun set, we met our moms and went back to our hotel.

At the end of the week, I was outside one of the ballrooms where the competition was being held. There was a five year old girl screaming and crying. My heart broke, and I asked the girl what was wrong. The little girl’s mom replied, “She won a stuffed animal at Universal Studios, and now she lost it. We can’t find it anywhere. She hasn’t stopped crying. I don’t know what to do.” I asked the mom if the stuffed animal was a small orange and black tiger. “Yes,” replied the mom. “She won it playing a water gun arcade game.” I happily chirped up. “Oh, I won one of those too! I have it in my room upstairs. I will go get it for your daughter. Wait here. I will be right back.”

I raced through the conference center and to the hotel lobby. I took an elevator up to my floor. I quickly ran to my room, grabbed the tiger off my bed and raced back downstairs. Soon, I arrived at the conference center. The woman and her daughter were still there. I held out my tiger to the little girl and said, “Here you go. Here is your tiger.” The small child immediately grabbed the toy and hugged it tight against her chest. She instantly stopped crying and started playing with the stuffed animal.

The mom looked at me in amazement. She didn’t know what to say or do. I told the mom, “It was my pleasure. I hope she enjoys the toy. I hope this stops her tears.” I then walked away and felt a HUGE relief. I had felt so guilty all week for needlessly spending five dollars on a carnival game. But now, I was smiling. I was able to give the tiger, which was causing me so much grief, to a a very upset little girl. Now she was cheerfully playing with the toy, her mom was free from her anxiety, and I was happy again. Perhaps spending the five dollars was not a waste after all. How wonderfully God works all things for good.

Tuesday, August 27, 2019

Don’t cry, it’s only the past...

Many, many moons ago, I started out on an adventure I was sure was going to lead to a life of bliss. I was going to accomplish great things. I was going to change the world. Although God graciously allowed me to begin my incredible quest, He cut my dreams short. Despite fighting and fighting to keep on going, God continued to crush me with medical emergencies and debilitating conditions. Soon my life was nothing more than me lying on the couch, trying to figure out what to do with my life.

As the years have rolled by, I have told myself if God heals me, I would go back to chasing my dream. If just one person from university was still going through residency or fellowship, I had time to magically catch up. (Although this is a crazy idea because if I ever wanted to finish my career, I would have to go back to school and would have to start all the way back at the beginning.) Despite all logic, I still had hope that God could do a few miracles.

Year after year, more and more of my classmates finished their training programs. This year was the year in which the last remaining classmates completed their programs. I try to be brave. I am quite proud of everyone's accomplishments. But the tears stream down my face. Perhaps it is reality finally setting in, or perhaps it is the last flicker of hope vanishing before my eyes. But my heart breaks to see so many people achieve their goals, and I am not among them.

I know it is dumb to ask, “What did I do wrong?” I know everything is from God, and my dreams were not His will for me. But still, no matter how much God distances me from my lifelong wish, my heart still yearns for it. I wipe away the tears and try not to focus on the past. I look to the world to come, a place where there are no tears and no disease.

Thursday, August 22, 2019

Someone like me

As the years have progressed and God has given me various medical obstacles to overcome, I often must resort to using medical devices to get through my day. In 2010 when my intestines stopped working, I needed to use a feeding tube. First I had a nasojejunal feeding tube—a tube which went up my nose, down my throat, through my stomach and ended in my small intestine. After ten days, the tube was replaced with a J-tube, a tube which went directly from my small intestine to the outside of my abdominal wall.

Shortly after getting my feeding tube, I was overjoyed as I saw a boy in a wheelchair also with a feeding tube. Here was someone else going through the same challenges of using a feeding tube. For a few short moments, I did not feel so alone in the world.

As time has progressed, using a wheelchair is my normal mode of transport. I know using a wheelchair is not that uncommon, but being  a “young” person (i.e., someone under the age of 80) in a wheelchair often triggered people to ask when I was going to recover from my injury or surgery. It seemed unimaginable to folks that I had a chronic medical condition which will make it necessary for me to use a wheelchair for the rest of my life.

Two years ago when I received my tracheostomy and started using invasive ventilation, people would stare at me wherever I went. As uncommon as it is to have a feeding tube or use a wheelchair, using a ventilator to breathe is even less common. I did not realize this, but the only time I have ever seen another person on a ventilator is in the hospital...and most of the time the person is in a drug induced coma as his body heals from some severe trauma or bad infection. I have never met another person who uses a ventilator as part of his everyday life.

This winter as I was exiting the grocery store, I caught a glimpse of a man around 65-70 years of age with a tracheostomy. He did not require a ventilator to breathe, but he did have a trach tube in his throat. I was overjoyed to see this man! I tried getting his attention, but unfortunately, he was walking  in the opposite direction from where I was. In that moment, I suddenly realized how isolated I often feel. No one else has to carry around 17 pounds of medical equipment just to breathe. No one else has to deal with trach tubes, tubing, tubing connectors, distilled/sterile water for my humidifier, constantly checking my ventilator for air leaks and battery levels, etc., etc. Very few people I know have to intentionally isolate himself from others because he has a weakened immune system. Someone sitting next to me sneezing could mean a lengthy stay in a hospital and severe damage to my airways. Besides being mentally isolated from the rest of the world, I am also often physically isolated to protect myself from illness.

This life can be a lonely path to travel, but I am thankful for God’s abundant mercies and kindnesses. God often reminds me that wherever I am, He is right beside me, leading me in the way I should go.

Tuesday, August 20, 2019

Perspective: From annoyance to love

During one of my doctor’s appointments, my physician requests I have a chest X-ray and have some blood work done. It is nearly 4 p.m. My mom and I know we have to make a mad dash to get these procedures done. The lab is located on the ground floor of my clinic building. Radiology is located in another building, about a 15 minute walk away.

My mom and I decide to do lab first. We arrive at the place a little after 4 p.m. We check in and wait...and wait...and wait. At 4:35, I tell my mom we need to go to X-ray as they close at 5. This lab is open until 5:30. If we are fast, we could probably have the X-ray done and be able to make it back to the lab before 5:30.

My mom and I race off to X-ray. We check in and wait to be registered. I have the X-ray done and am rolling out of radiology around 5:15. My mom runs, pushing my wheelchair, trying to make it back to the lab before 5:30. At 5:25, we arrive at the lab. I sign in. The woman at the check in desk then stands up and locks the door. The waiting room is empty. After five minutes, I am called back to have my blood drawn.

The laboratory technician is a beautiful young girl around 20-25 years of age. She is very nicely dressed. I notice she took much care to coordinate her outfit and jewelry. Her hair is professionally pulled back, out of her face. When the young woman speaks, I immediately hear her Caribbean accent.

As the technician is checking the information on my work order, she begins talking to me. She tells me how it has been an extremely chaotic day. A number of things have happened which have caused her to have an over abundance of work. She has been struggling all day to get everything done as well as draw labs. The beautiful girl is nearly on the verge of tears. I notice her hands are slightly shaking, a sign that the day’s stress is greatly wearing on her. I am shocked she is telling me all this. 

I am familiar with Caribbean culture. People at work are always professional. They pay great attention to ensuring they look their absolute best for work. They are polite but reserved. They do not express emotion. They will ask how they can assist you. They talk only about business; they do not speak about personal matters. Knowing the Caribbean code of conduct for work, I know this woman must be in a great deal of agony. I am her last patient for the day. If everything goes well, she should be clocking out and on her way home very soon.

I am not sure what to do. I try to give the woman some words of comfort, telling her I hope the rest of her week goes well. The woman quickly finishes taking my blood. I am soon out the door and on my way to the car. As I think about the lab technician, my heart breaks. While I was annoyed with the wait time at the lab before deciding to go to X-ray, I never thought that there may be a reason the lab seemed to be in so much chaos. I pray to God, “Oh LORD, help this lab technician have a wonderful, peaceful night. Allow her body to find rest and recover from today’s stress. Please allow the rest of her work week to be one of little stress and much joy. Please forgive me for my shortcomings. I was so wrapped up in my own world of worry, I forgot to pray for those around me. Amen.”

Tuesday, August 13, 2019

Perspective: Hooray for easy clean-up

My parents lent our minivan to family members so that they could go on a family outing to the beach. When the car arrived back home, I needed to rearrange some things in the car. When I opened up the tailgate, I saw there was some sand on the carpeting. I did not want the sand to spread and make a bigger area to clean up. So, I retrieved a dust pan and hand broom, hoping I would be able to sweep up the sand without having to use the heavy vacuum cleaner.

When my family members saw me with the dust pan and small broom and subsequently saw the sand in the back of the van, they immediately started apologizing for the mess. I was perplexed by their apologies. I think my family thought I would be mad about the small mess. Anger or bad thoughts were the farthest thing from my mind. The van went to the beach.  The van now has some souvenir sand on the carpet. No big deal. I would have been shocked if the van would have come back in perfect, pristine condition. I was just silently praying clean-up was going to be simple.

With a few quick flicks of the broom, the dry sand easily swept up into the dust pan. I smiled. “Hallelujah for dry sand! I don’t have to get the vacuum cleaner.” In my head, I am doing a happy dance. A few steps from the van were some bushes conveniently located to receive a dusting of fresh sand. Once the sand was quickly cleaned up, my family members seemed relieved everything went so smoothly.

Everything in life is a matter of perspective. You can be angry about things which happen, or you can find ways to praise God when a fast remedy to the situation is found. I was happy my family was able to go to the beach. I was delighted to view photos and videos from all the fun they had. Perhaps, God knowing I was not able to join my family on their outing, intentionally left a little souvenir behind in the van so I too could play for a few moments in that beautiful golden sand.

“Rejoice in the Lord always. And again I say rejoice!” (Philippians 4:4)

Thursday, August 8, 2019

Think before you speak

I know many people have good intentions, but sometimes words can be said which do not bring cheerfulness to a conversation. People often say things without understanding their words can inflict more harm than good.

Being chronically ill for many, many years, the one phrase which often rips a hole into my heart is: “You are too young to have all these health issues." I believe when people utter this phrase, they intend to bring sympathy or comfort to me. However, their words often have the exact opposite effect. I usually do not think about how different my life is compared to other people my age. When folks remind me that I have too many health problems for someone my age, I instantly am saddened.

For what it is worth, I have been very gleeful as the digits in my age increase. Suddenly, my youth is fleeting away. Hooray! I am now old! People stopped telling me how unfortunate it was for me to be so young and have so many medical problems. However, this changed again when I received a tracheostomy and started using invasive ventilation. Now, once again, I am "young" and have too many medical issues for a person my age. <sigh> I am not sure how old a person on a ventilator has to be before people stop reminding him about all his health challenges.

Sometimes, people's remarks often have me scratching my head. I was talking to a man who is nearly 80 years old. He was describing some of the aches and pains he has, and some of the blood work he had to have done to make sure he did not have various diseases. With the exception of PSA (prostate-specfic antigen), I have had all the blood tests he mentioned numerous times. At the end of the conversation he tells me, "At least you have your health. You don't have to worry about all these health issues us old folks have to deal with." I paused, looked at my ventilator and then shook my head. I remained mute, but I thought, "You are talking to a person who has been constantly in and out of the hospital for the last two years, uses a PICC line to receive IV antibiotics, uses a ventilator to breathe and uses a wheelchair for mobility. Yep. I am the poster child for ideal health." LOL!!!

Lastly, this comment made me nearly fall to the ground laughing. I was talking to a nurse, giving him a short medical history. He reviews my systems asking if I have various common medical conditions such as heart disease, diabetes, high cholesterol, etc. When he gets to the respiratory system the conversation goes as follows:

Nurse: You smoke.

Me: No.

Nurse: Well, you used to smoke.

Me: No, I have never smoked.

Nurse: WHAT!!!??? You have NEVER smoked and have all these respiratory issues!? That's so not fair! You didn't do anything to deserve this.

Me: Does anyone really do anything to warrant bad health? "The LORD gives and the LORD takes. Blessed be the name of the LORD." (Job 1:21)

The nurse shakes his head and continues asking the rest of his health history questions.

You may be asking why the last interaction is so humorous to me. I have had similar encounters with other people. They see my tracheostomy and ventilator and believe this is a direct result of smoking. One young lady, after seeing me on my ventilator, told me she was going to stop smoking. She said she did not want to end up on a ventilator. Perhaps when kids see me on a ventilator, it might scare them into not smoking or quitting. What a blessing for God to use my respiratory failure to help others prevent future lung damage.

"He who restrains his words has knowledge,
And he who has a cool spirit is a man of understanding.
Even a fool, when he keeps silent, is considered wise;
When he closes his lips, his is considered prudent."
(Proverbs 17:27-28)

Tuesday, August 6, 2019

A wonderful day to enjoy God’s blessings

A half hour before my mom and I are to check out of our hotel, the electricity goes out in our room. The power surges, the lights flicker on and then everything goes dark again. This happens one more time. Then, abruptly, the generators take over and scattered electricity returns to the hotel. Some floors have electricity to power the lights in the guest rooms while the hallways remain dark. Other floors have electricity to power the hallway lights while the guest rooms do not have power.

Immediately after all this occurs, I am praising God. Since we were in the process of packing everything up and getting ready to check out of the hotel, I had unplugged all my medical equipment and my iPad. I could not imagine the possible damage which may have occurred by the power surges if these devices would have been plugged into the wall outlets.

I check the elevators and find a huge line of people with their luggage in tow all trying to get to the lobby to checkout of the hotel. It seems only one elevator is working...and since it is just 15 minutes before the hotel’s checkout time, the one elevator is working overtime.

My mom and I decide to wait 45 minutes before attempting to use the elevators. When we make our way to the bank of elevators, we are very blessed when the one functioning elevator quickly appears on our floor empty. We enter the elevator and happily share it with another couple trying to check out. We briefly discuss the power outage. The woman is complaining about everything that is wrong with the hotel. I am shocked by her horrible criticism of the resort. Every time she says something negative, I immediately find myself silently praising God for something positive. I begin to wonder if this woman’s perception of the world is tainted by her negative attitude. I am grateful when we arrive safely on the ground floor.

My mom checks out at the front desk and then summons the valet to retrieve our car. It is pouring rain, and I am overjoyed this hotel has free valet parking. When our car arrives, I again rejoice that we can load up the car under the protection of a large overhead canopy. When the car is packed, we drive away from the resort. I think to myself, “Despite the rain, the clouds and the lack of electricity, this truly has been a wonderful stay. God has overwhelmed us with an abundance of blessings.” As we leave the resort property, the rain stops. I breathe a sigh of relief and again send up another praise to God for clearing up the weather. As we continue to drive, the clouds break up, and the sun shines. I smile as I think how quickly God can change any situation in the twinkling of an eye. What a wonderful God we serve!

Thursday, August 1, 2019

Wee! I’m three! Happy Anniversary!

It is hard to believe three years have passed since I first created this blog. I reflect back on my life. So much has changed. What started out as a tribute to my dear friend Milly morphed into a journal about my life with Mitochondrial Disease and respiratory failure. I could have never imagined all the crises I have had to endure, the endless days in the hospital and the many times God could have taken me home to heaven.

Instead, here I am—a bit weaker and a little bit more fatigued but more determined than ever to love God and allow His light to shine through me.

Each day, I study God’s word, gleaning nuggets of insight and knowledge which carry me through life’s obstacles. When situations become chaotic and fraught with many toils, it is often hard to see God in the midst of everything. However, with much patience and reflection, I have learned to view all things as God-ordained. As tough as some days are, God may be working in the background to set-up an incredible miracle. It is only when we endure hardship can we fully rejoice in God’s abundant blessings.

Whatever the future may hold, I am grateful I started this blog. Y’all have showed me so much love and compassion. I am truly blessed. I know whatever trial God puts me through, y’all will be there, cheering me on and giving me words of encouragement. Thank you! Happy Third Anniversary!