If my tears could put out the flames

I lie in my bed. A raging migraine threatens to steal another night of sleep. I try various relaxation techniques. Nothing works. In a last ditch effort, I click open the AT&T TV app on my iPad. I flick through some programs and land on a news show recorded earlier in the night.

I am startled and shocked to see the city of Minneapolis in great distress. The streets are littered with broken bottles; shopping carts line the walkways. Vulgar profanity pours forth from the lips of rioters. "We want justice!" they scream as they vandalize anything and everything they can.

My heart breaks as I see a Target store being looted. Target, of all places, should be one of the last places these thugs should be robbing. Target is headquartered in Minneapolis. They provide millions and millions of dollars to local charities and scholarships to those pursuing higher education. Target is dedicated to helping struggling communities fight poverty. I want to scream at the idiots on my computer screen, "Stop this right now! You are only hurting your own communities!"

A reporter on the ground is in front of an Auto Zone auto parts center. Flames erupt as people light the store on fire. Tears spring up in my eyes. That was someone's business. That building was the result of years and years of hard work by a person to provide for his family. That business provided jobs...jobs which have now gone up in smoke!

Another helicopter shows people looting a Dollar Tree store and other adjacent businesses. Again, tears cascade down my cheeks. More owners have lost their businesses. More people have just become unemployed. During a time when unemployment is at an all time high, countless more families will now struggle to keep food on the table and a roof over their heads.

A massive fire erupts a short distance from the Target store in a housing complex still under construction. The reporter states it was a subsidized housing complex. My heart breaks some more. The wait time to get affordable housing is often many years. How many people have just lost their dream at affordable housing? Will this fire bankrupt the housing company? How many more people just lost their jobs?

As the imagines stream in, rioters throw molotov cocktails at the police. People scream profanity; cars are destroyed. The streets look as though a war has broken out. A man is reported to have been shot to death. My head swims. Tears stream down my cheeks. I wonder how businesses have been destroyed. I wonder how my people lost their jobs. I wonder how many innocent people have just been victimized.

I wait for black leadership to stand up and address the situation, but there is only silence. I wonder if this is the dream Dr. Martin Luther King Junior imagined the USA would be when he gave his "I have a Dream" speech nearly 57 years ago. Dr. King worked to his last day preaching peace. In less than six decades, we seemed to have lost Dr. King's leadership and words. What a tragedy. If only my tears could extinguish the flames of hatred and the fires burning across Minneapolis and St. Paul...if only the rioters would resort to peaceful protests and resist violence...what a path we could create for unity and understanding.

Social Distancing: Welcome to my world

Social distancing used to looked down upon in our society.  Sit by yourself, you are being anti-social. Decide not to go to a function, but opt to stay home, you are a social recluse. See someone you know and greet them from a distance with a wave, you are not being very friendly.

Having a tracheostomy and using a ventilator to breathe means I am extremely immuno-compromised. Particles in the air go directly into my lungs, without being filtered by my nose and/or mouth. This means bacteria and viruses have immediate access to my airways and bypass the complex immune safeguards in the upper airways which prevent people from constantly getting sick. With a weakened immune system, I have been practicing social distancing for several years, but my methods go above and beyond what most people observe during this pandemic.

Most state governments require/strongly suggest people stay six feet apart from one another. Although this is better than making out with the person in front of you in line, six feet is not enough distance to protect you from air droplets expelled while talking. Most studies suggest social distancing begins to be effective at around 12 feet. (I think we all know this. If someone is sick in a room, instinctively we move as far away from the person as possible. We do not mark off six feet from the sick person and believe we are "safe". No we move as far away as we can, and we will often leave the room if we cannot get far enough away from the person.)

I constantly use social distancing any time I am out in public. At church, I sit in an area all by myself. (Being in a wheelchair, I can sit anywhere I can find floor space.) If I cannot sit by myself, I will move to the overflow room and find a place away from everyone. During Sunday School class, I get close enough to hear the teacher, but I try to remain at least 20 feet from anyone. In the rare event I go to the grocery store, I try to shop at off peak hours. I also try to go down aisles in which there are no other customers. If an aisle has a lot of people, I will skip it and come back when hopefully the section has cleared out.

I often do not have a lot of energy to go to social events, but there are times when my desire to attend a function outweighs my fatigue. One of the many factors which guides my decision about attending a gathering is where it is located and the current health of the community. If the event is to have a lot of people in a small enclosed space, I will skip the function. If the gathering is in a large outdoor area, I may go. Also, if it is cold and flu season or if there is a "bug" going around the community, I will often not attend. The likelihood of someone having the illness at the function poses a risk too great for my comfort.

One last way I try to social distance is by not shaking hands. I know everyone loves to do this, but I am always accompanied by medical equipment. Even if someone shakes my hand and I try to go wash my hands, I will then inevitably touch my wheelchair as I make my way to the bathroom. Now everything on the person's hands are on my wheelchair. If I wash my hands, as soon as I propel my wheelchair, the germs are again back on my hands. I try to resolve this issue by occupying my hands with the ventilator which is sitting in my lap. If someone wants to shake my hand, I will act as though I cannot let go of my ventilator. The person will usually change course and pat my shoulder or back.

Stay at Home: I thought I would be more productive

When the Coronavirus was exploding on to the national stage, I was in the hospital sick with pneumonia and kidney issues. I was ready for a break. I felt as though I had been running a marathon for many months. In September, a major sewage back-up in our home exposed me to a rare, potent bacteria. My doctors ignored my tests results. I then became extremely ill in October. I was hospitalized with pneumonia and meningitis. I continued to fight this infection through November. In December, I got a bad cold followed by a sinus infection. At the end of the month, I was throw from an electric cart. (I suffered no broken bones, but I was extremely banged up!)

In January, my respiratory tract was again a mess. I then started on the path to get a port-a-cath. I had the procedure and spent the month of February in the worst pain of my life from port-a-cath complications. In March, the port-a-cath was removed. I again had pneumonia. I was hospitalized two weeks back-to-back. As I was in the hospital the second time, everything was closing around me. Thankfully the hospital I was at stayed open, allowing my mom to visit me. Right after I was discharged, the hospital closed its doors to all visitors.

After making it through all those medical adventures, I was ready for a break. When the order came for us to stay at home, I was relieved to have doctors' appointments cancelled and to be required to remain in the house. Although this seemed like it would be a nice vacation, it actually was quite exhausting. I extremely sick after being hospitalized. I had to frantically get medical care over the phone and via online telemedicine. Tests and procedures the doctor wanted, I had to travel about 45 minutes to an urgent care clinic, laboratory and also an emergency department. Things which would have been easy to do, were now monumental ordeals.

After several trips, I was able to get everything done on April 12. I also was finally feeling better. Now to enjoy a vacation. I rest and relaxed, but I felt so guilty. I had a huge number of things I needed to do which have been postponed for many months due to illness/injuries. And there were several projects I wanted to complete while I had the time. But, it seemed, all too soon, the weeks slipped by. I continued my daily routine, but nothing else was accomplished. I would see folks doing these "around the house" projects and marvel at people's skills. I then would look at a stack of unopened mail and a pile of clean clothes waiting to be put away. Simple things in my life continued to not be done.

And that is what it is like to have a chronic medical condition. You have big ideas and grand dreams about what you want to do, but the energy and the time needed to complete projects always seems to be short in supply. I often think "Tomorrow, I will do x, y, z." When tomorrow comes, muscle spasms, a bad headache or life gets in the way. The energy you were going to use to wash your bed linens was instead used to clean up a mess made in the kitchen when a pan full of greasy water slipped from your hands and splattered everywhere.

I am happy most states around the country are beginning to open up again. It will be a blessing to see more photos and videos of people going about their daily lives. Although my life will not change much, it is such a joy to live vicariously through those around me and to imagine what my life might be like if I did not have chronic illness.

Help from the grave

In the fall of 2017, I was having trouble breathing. My respiratory rate was extremely fast. Although I had received a tracheostomy and was started on invasive ventilation, my doctors did not know a lot about ventilator settings. During a visit by my respiratory therapist (RT) from my durable medical equipment (DME) company, my RT asked if I had ever seen Dr. H, the medical director for the DME company. I replied I had not. The RT told me Dr. H was very familiar with ventilators and neuromucsular conditions. She probably could help me out. I did an internet search to find Dr. H's contact information. I called and was able to set up an appointment to see the physician.

Dr. H was incredible. She worked extremely hard and constantly thought about ways to help her patients. If you could not make the journey to see her, she would do appointments via FaceTime. I have never seen a person dedicate so much time and energy towards one's patients. She was never too busy to answer your questions.

During my appointment with Dr. H, the physician immediately knew I needed testing to figure out my ventilator settings. She sent me to the hospital where I was admitted. She adjusted my settings and did numerous tests in the hospital which revealed extremely useful information such as my diaphragm muscles were nearly paralyzed. She summoned the help of the neurology team from the hospital's neuromuscular team. They also ran tests which yielded insightful information regarding my Mitochondrial Disease. At the end of the week, my breathing was better. Dr. H said I could continue to follow with her, but since I was already established with another doctor at a different hospital, Dr. H thought it was better to go back to my doctor. We parted ways.

In the spring of 2019, as I was sitting in my hospital bed trying to get the heater on my ventilator to work, I went to my DME company's website to find their phone number. When the page appeared, there was a picture of Dr. H with the words about how she is an angel. The message confused me. I went to the DME's Facebook page in which I found a notice for Dr. H's memorial service. I was shocked and stunned. Dr. H died!? She was only 60 years old. The photos from the memorial service showed about 5,000 people crammed into a gymnasium. It was standing room only. I wondered as I gazed at the photo if all these people knew her or if it was more of a hospital social gathering. I mean, how could one person affect 5,000 people's lives?

In March 2020 (a year after Dr. H's death), my pulmonologist abandoned me. I needed urgent medical treatment. I could no longer go to my regular hospital since my pulmonologist made it clear there was very damning information in my medical chart there. So, I went just a stone's throw away to the hospital where Dr. H used to work.

The emergency department (ED) doctor looked up my chart. In my medical records, Dr. H's name was listed as one of the doctors who saw me during my only visit to the hospital in the fall of 2017. The ED physician asked if Dr. H was my doctor. I said yes. He then said what a wonderful person she was. I could see this man really loved Dr. H and as he spoke about her, I could feel his broken heart.

When I arrived in my hospital room, an internal medicine doctor saw me. He also asked if Dr. H was my doctor. I again said yes. Tears sprang up in this man's eyes. He did not say anything for a few seconds. He choked back tears and said what a wonderful woman she was, what a terrible loss it was she passed away and what a tremendous hole she left behind her.

When a pulmonologist visited me, the scene played out almost exactly as I was asked if Dr. H was my physician. I was asked who now was my pulmonologist. As God had worked it out, I had just lost my pulmonologist the day before. So, I told the physician I was in need of a pulmonologist. He told me I could follow up with him.

I was shocked so many people knew Dr. H. Furthermore, when it was found out Dr. H was my doctor, I was given the utmost attention and care. It was as if the doctors were trying to show honor and respect to Dr. H for all her hard work and effort...and now since she has passed away, the only way the doctors could now pass on this love was by taking good care of Dr. H's patients.

As I think back to the photo of 5,000 people packed into a gymnasium for Dr. H's memorial service, I know Dr. H did not affect 5,000 people's lives. No, she impacted far more people--patients who could not travel to the event, healthcare professionals who had to work during the memorial service and people who were too upset to attend. Although Dr. H lived only 60 years, she made the most of those years and profoundly changed the world...and her legacy continues to help her patients today.

When God provides

Recently, I have been extremely stressed out. My ventilator supplies have been greatly reduced. I have been informed they do not know how long the shortages will last, but inventories across the USA are very low.

Unfortunately, my respiratory therapist does not visit me often. I am usually left scrambling and begging her to visit because I am extremely short on supplies. She is supposed to visit every month. Since August, she has visited me twice.

I carefully use and reuse my ventilator items. I often use them well beyond their normal life. I am short on several items, but I have been informed I must reuse and make do with the supplies I have due to the shortages nationwide. To say this response by my respiratory therapist sent me into a rage would be understatement. I have been reusing my supplies. There comes a point when the plastic breaks and cracks. When this happens, my ventilator ceases to function properly. I do not have any supplies to reuse!

Moreover, one item I have been using is not the standard equipment provided by my durable medical equipment company. However, I have in the past been able to receive this item. The company special orders it and sends it directly to my house. I am not sure if they can no longer obtain the item or if my respiratory therapist does not want to fill out additional paperwork to get the item. Nevertheless, I have been informed this one item I can no longer receive.

I was rather frantic when hearing this news. I have been searching online for other ventilator supplies and know many online stores are completely out of stock of numerous items. I am not completely out of the item I need, but when it is unknown how long the ventilator supplies will be depleted, I grow a little bit panicked.

I went to an online auction site, which is one of the only places you can obtain medical equipment without a prescription. I searched for the item I needed. I found I could purchase one unit for $15. The price was not too bad, but I really did not want to pay that much. I continued to scroll. I left the website and took a break. Shopping online always makes my heart race. I am in constant trepidation about if I should or should not buy an item. I like finding the best deal and am continually asking myself if this is the best price.

I returned back to the online auction site. I scrolled again from the top of the page. Now, this time, I saw one of the listings was for a lot of eight. With shipping, the price was $41. So each item costs just a little more than $5 each! Wow! That's a great buy! I quickly made the purchase.

As I wait for the purchase to be completed by the online seller, I smile. Once again I found myself in need, and once again God abundantly supplied me. It is times like these my heart overflows with joy and gladness. During a time when ventilator supplies are in extremely short supply, God allowed me to find exactly what I needed for an incredibly cheap price. Praise God!

Showering: The joy of simple things

There was once a time I did not think about the effort and preparation it took to take a shower. But since I have entered the world of chronic illness, there is always something which makes showering a challenge. I used the have an intestinal feeding tube. The tube extended from my abdomen to the outside of my body. It rubbed and irritated the insertion site (stoma) if it was not secure. The cloth bandage I used to secure the tube was not ideal to use in the shower. I had to invent my own waterproof device to secure the tube while showering.

Now, I have had peripheral catheters. These IV lines extend about two inches from the insertion point in my upper arm. Moreover, the insertion site is covered with a plastic adhesive dressing which cannot get wet. To take a shower, I had to cover the dressing with a cloth sleeve. Over the cloth sleeve, I wrapped my arm in plastic cling wrap. (Plastic wrap is always a challenge. Now imagine trying to use just one hand to wrap your opposite arm in the plastic wrap. Yes, it was a Herculean feat!)

Once my arm was wrapped, I then used rubber bands to secure the top and bottom of the plastic wrap to ensure water did not drip down my arm into my dressing. When showering, I tried not to use the arm with the IV line; I would hold my arm out of the water and try to use just one arm and hand to wash. Although I am very grateful for the peripheral IV lines, showering was something I did as little as possible due to the tremendous effort it took to keep my IV line dry.

Tonight is the first time in three months, I have not had a line to cover. Oh, to just be able to shower and only have to worry about keeping water away from my tracheostomy, what bliss! (I do have a sponge cover for my tracheostomy tube. This helps absorb water and prevents water from entering my trachea. But since it is only a sponge, I have to be very careful to not get a lot of water draining down the front of my neck, or the sponge will become saturated and leak the water down my trachea and into my lungs. There is nothing quite like drowning when taking a shower!)

I am often not happy God has placed so many medical maladies in my life, but without all these obstacles, I would not be grateful for many things in life. God has blessed us in many, many ways. We are often blind to these kindnesses until they are taken away. May we rejoice in all that we say and do.

"Whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks through Him to God the Father" (Colossians 3:17).

Living on borrowed time

There are certain days of the year we tend to take note of--our birthday, New Year's Eve/Day, our country's Independence Day, important religious days and celebrations. Then, there are the rest of the days of the year on which important events can happen in our lives which often go unnoticed by the rest of the year.

For me, May 3 is a major day in the year. It was on May 3, 2017 when I underwent a tracheostomy procedure to get a tracheosotmy tube placed and be started on invasive ventilation. I am not sure if I have remembered this day the last two years, but this year seems so different.

When I was researching invasive ventilation and tracheostomies, I discovered the average life expectancy for a person with a neuromuscular disease (Mitochondrial Disease is a type of neuromuscular disease) needing to use a ventilator to breathe was 2-5 years. Perhaps for the first two years of using a ventilator to breathe, I felt entitled to live. But, now that I am crossing over into the years when a person may pass away, my life seems more urgent. I know there is no expiration date stamped on the bottom of my foot, but I am also not blind to the fact a ventilator is only a stop-gap intervention. My disease continues to progress. Ventilator complications are always a threat.

As I gaze at my ventilator and listen to the air it pushes in and out of my lungs, I marvel at this piece of technology. A machine small enough to sit on a stand next to my bed sustains me through each day. I wonder how it is possible. I wonder how many people in the centuries gone by died because this device was not yet invented.

With each day, each week and each month, I praise God He has allowed me to live on. I know life support keeps me alive, but it is God who sustains me. Three years ago, He could have impeded my path to getting a tracheostomy. He could have put up road blocks and stumbling stones which may have deterred me from going through with the procedure. But, none of that happened. Instead, time after time, God opened doors and moved mountains to keep me on this path called life. I am grateful for these last three years. I am truly living on borrowed time.