For the last few weeks, I have been itching to go somewhere, and do something which involves other people. The holidays have come and gone, and I was not invited to go anywhere. I am disheartened to see photo after photo of fun parties and social events with folks wearing sparkly clothing and wide-eyed smiles.
Today, I woke up and remembered my church Sunday school class was having a party some time soon. Was it today? Was it next week? I could not remember the time or date. Thankfully, I was able to contact a Sunday school class member via Facebook to retrieve the necessary information.
I arrive an hour late to the event. Everyone is finished munching on the lovely food displayed around the kitchen. The hostess decides it is now time to play a game. Everyone is to tell a fact or short story about themselves. It can either be true or a lie. The game is played, and I am grateful I do not have to move. I simply have to listen to people talk. An hour passes when the game comes to a conclusion. I am exhausted. If allowed to, I would curl up on the floor and take a nap. My lungs feel heavy and congested with sputum. I am trying with all my might to not constantly cough my head off. I need to get home and run my nebulizer to loosen up the thick sputum in my lungs.
As I am packing up my ventilator and heading for the door, a sweet, smiling woman approaches me. "Will I see you tomorrow?" I am baffled. What is tomorrow? There is no church. Bible study is on Tuesdays. I remain clueless. I ask, "What is going on tomorrow?" The smiling woman replies, "Game night!" Oh, yes, I remember. My church hosts a weekly game night in the winter months. In a churlish tone, I reply, "No. I rarely leave the house." I bluntly end the conversation and leave the party.
I feel bad. My tone of voice was sharp with the woman. I did not intend to be mean to her. I was tired. I am annoyed the woman thought I had energy to play several hours worth of games when I was dragging to just get through one hour of sitting upright using a ventilator to breathe. I know she was trying to be nice, but when I get tired, my social skills wane.
When I arrive home and rest comfortably in my bed with my nebulizer running, allowing me to cough up endless amounts of sticky sputum, I suddenly feel overwhelmed with sorrow. I wonder if the woman was offended by my words. I wonder if my words came off as discourteous as they sounded in my head. I pray to God that He can help this woman understand that I did not intend to be rude. I was just tired and in need of a nap. Oh well. At least my craving for social interaction has been quenched, and now I will think twice about going anywhere knowing my socialite skills quickly deteriorate when my energy levels run low.
Thursday, January 31, 2019
Tuesday, January 29, 2019
Humbly going about in a wheelchair
Recently, my pastor gave a sermon about being humble. He emphasized the fact that God does not like the proud but gives grace to the humble. As I was listening to the sermon, I kept thinking if a person wants to have a humbling experience, for one day go about your daily life in a wheelchair. Go to work, the grocery store, the pharmacy, school or wherever you might journey during your normal day but do it all using a wheelchair.
When using a wheelchair, there are many physical and mental obstacles. Some businesses do not have ramps, automatic doors or bathrooms which are large enough to accommodate a wheelchair. Then, there are people who stand in the middle of walkways or ramps and expect you, the person in the wheelchair, to move around them. This often means you have to attempt to travel on the grass or go over a curb to continue on your way. Many people will stare at you. Everywhere you go, it feels as though there are a thousand eyes watching you.
Some people find the need to tell you how insignificant you are. They speak to you as though you are a three year old. They laugh when you struggle to reach for an item on the grocery store shelf. They race in front of you or even cut in front of you in line. They make jeering comments toward you and act as though you do not have ears and cannot hear their hateful remarks. I even had one man take his grocery cart and intentionally slam it into my wheelchair. (Praise God I had just moved my arm, or I believe he would have broken it. My wheelchair suffered several hundreds of dollars worth of damage.)
There also are many blessings. Healthcare workers are often very kind and compassionate toward a person in a wheelchair. I once had to travel from my doctor's office to another adjacent building to have some testing done. It was about a 15 minute walk and required the use of three sets of elevators. A women in scrubs, I believe she was a nurse, saw I was struggling to wheel myself up a very long, steep ramp at the beginning of my journey. She asked if I needed assistance and then proceeded to wheel me the entire way to my testing facility. I was dumbfounded and nearly started to cry after receiving this woman's incredible act of generosity.
The list of both blessings and curses could go on and on regarding the use of a wheelchair. But, I believe if a person wants to understand what it is like to be forced to rely on others and to be forced into challenging situations, use a wheelchair for a day. Your view of the world will drastically change. The things you often take for granted such as walking on uneven surfaces or freely stepping over objects will suddenly become sources of blessings. Being wheelchair bound is truly a humbling experience.
When using a wheelchair, there are many physical and mental obstacles. Some businesses do not have ramps, automatic doors or bathrooms which are large enough to accommodate a wheelchair. Then, there are people who stand in the middle of walkways or ramps and expect you, the person in the wheelchair, to move around them. This often means you have to attempt to travel on the grass or go over a curb to continue on your way. Many people will stare at you. Everywhere you go, it feels as though there are a thousand eyes watching you.
Some people find the need to tell you how insignificant you are. They speak to you as though you are a three year old. They laugh when you struggle to reach for an item on the grocery store shelf. They race in front of you or even cut in front of you in line. They make jeering comments toward you and act as though you do not have ears and cannot hear their hateful remarks. I even had one man take his grocery cart and intentionally slam it into my wheelchair. (Praise God I had just moved my arm, or I believe he would have broken it. My wheelchair suffered several hundreds of dollars worth of damage.)
There also are many blessings. Healthcare workers are often very kind and compassionate toward a person in a wheelchair. I once had to travel from my doctor's office to another adjacent building to have some testing done. It was about a 15 minute walk and required the use of three sets of elevators. A women in scrubs, I believe she was a nurse, saw I was struggling to wheel myself up a very long, steep ramp at the beginning of my journey. She asked if I needed assistance and then proceeded to wheel me the entire way to my testing facility. I was dumbfounded and nearly started to cry after receiving this woman's incredible act of generosity.
The list of both blessings and curses could go on and on regarding the use of a wheelchair. But, I believe if a person wants to understand what it is like to be forced to rely on others and to be forced into challenging situations, use a wheelchair for a day. Your view of the world will drastically change. The things you often take for granted such as walking on uneven surfaces or freely stepping over objects will suddenly become sources of blessings. Being wheelchair bound is truly a humbling experience.
Thursday, January 24, 2019
Part Two: A day of mourning
On October 27, 2018, I wake up and praise God it is another Saturday; it is another Shabbat. I listen to synagogue services online. My heart swells as I listen to songs sung by a beautiful cantor's voice. I find myself continually praising God for this glorious day and this wonderful day of rest.
As I make my way to the kitchen to brew some tea, I notice my mom has the television on. I see images of people fleeing a building and swarms of police flash on the screen. Being Shabbat, I do not allow myself to read the words scrolling across the bottom of the monitor. It is God's holy day. I do not want to spoil a holy day with the world's problems.
I make tea for my mom and deliver it to her. She tells me, "There's been a shooting at a synagogue in Pittsburgh. Several people are dead." My breath catches in my throat and tears fill me eyes. I know this was an act of anti-semitism. I know this was a targeted shooting.
I immediately think back to the man who had just attended Bible study with me. His wicked words against the Jews and against Israel float through my mind. I am grateful at this moment for God directing this man into my life. I am grateful God has allowed me to witness how intense hatred toward God's chosen people is still alive and well all over the world, including right here in my own neck of the woods. I thank God for preparing my heart and mind for this event. I also reflect that if the shooter was a little more educated about history, he would have waited two weeks to enact his hatred. In two weeks, on November 9, it is to be the 80th anniversary of Kristallnacht--The Night of Broken Glass. Instead, this man's act of violence only prepares synagogues across the U.S. and the world that although it has been 80 years since the Jews were intensely persecuted under Hitler's regime, the world has changed little. Although there may no longer be a centralized unit of hatred toward the Jews, there is still an active group of individuals around the world plotting and scheming ways to terrorize God's chosen people.
On Saturday evening, I log on to Facebook. There at the top of my newsfeed is a statement from one of my Jewish friends. She states her immense sorrow about the day's events. She also shares how she has been a victim of hate crimes her whole life because she is a Jew. My heart breaks as I read her remarks. My mind wants to reject that anti-semitism is alive and well, but I know Jews around the world are constantly being persecuted. My soul mourns. Perhaps, nothing will ever change until Messiah sits on His throne.
"What has been will be again, what has been done will be done again; there is nothing new under the sun. Is there anything of which one can say, 'Look! This is something new'? It was here already long ago; it was here before our time. No one remembers the former generations, and even those yet to come will not be remembered by those who follow them." (Ecclesiastes 1:9-11)
(For Part One click here)
As I make my way to the kitchen to brew some tea, I notice my mom has the television on. I see images of people fleeing a building and swarms of police flash on the screen. Being Shabbat, I do not allow myself to read the words scrolling across the bottom of the monitor. It is God's holy day. I do not want to spoil a holy day with the world's problems.
I make tea for my mom and deliver it to her. She tells me, "There's been a shooting at a synagogue in Pittsburgh. Several people are dead." My breath catches in my throat and tears fill me eyes. I know this was an act of anti-semitism. I know this was a targeted shooting.
I immediately think back to the man who had just attended Bible study with me. His wicked words against the Jews and against Israel float through my mind. I am grateful at this moment for God directing this man into my life. I am grateful God has allowed me to witness how intense hatred toward God's chosen people is still alive and well all over the world, including right here in my own neck of the woods. I thank God for preparing my heart and mind for this event. I also reflect that if the shooter was a little more educated about history, he would have waited two weeks to enact his hatred. In two weeks, on November 9, it is to be the 80th anniversary of Kristallnacht--The Night of Broken Glass. Instead, this man's act of violence only prepares synagogues across the U.S. and the world that although it has been 80 years since the Jews were intensely persecuted under Hitler's regime, the world has changed little. Although there may no longer be a centralized unit of hatred toward the Jews, there is still an active group of individuals around the world plotting and scheming ways to terrorize God's chosen people.
On Saturday evening, I log on to Facebook. There at the top of my newsfeed is a statement from one of my Jewish friends. She states her immense sorrow about the day's events. She also shares how she has been a victim of hate crimes her whole life because she is a Jew. My heart breaks as I read her remarks. My mind wants to reject that anti-semitism is alive and well, but I know Jews around the world are constantly being persecuted. My soul mourns. Perhaps, nothing will ever change until Messiah sits on His throne.
"What has been will be again, what has been done will be done again; there is nothing new under the sun. Is there anything of which one can say, 'Look! This is something new'? It was here already long ago; it was here before our time. No one remembers the former generations, and even those yet to come will not be remembered by those who follow them." (Ecclesiastes 1:9-11)
(For Part One click here)
Tuesday, January 22, 2019
Part One: A night of brokenness
It is another Tuesday night in October 2018. I am joyous because on Tuesday evenings there is Bible study, and I love going to Bible study! The fall festivals--Feast of Trumpets, Day of Atonement and Feast of Tabernacles--have recently come and gone. A new year has begun on God's calendar. With all my health challenges from the last year, I am excited to start anew.
To my delight, at Bible study, a new couple has decided to join the group. I am overjoyed when new people attend as they always add insight into the study. Almost as soon as Bible study begins, I am shocked and overwhelmed with the new man's hatred toward Jews and Israel. Any time the man talks about Jews or Israel, I can see flames of abhorrence rage in the man's eyes. He continually states how backwards the Jews are in their thinking...they are all going to hell...they are dirty...and the man's animosity toward Israel and the Jews continues for the rest of the study. I am simply blown away with this man's remarks. I try to counter this man's thinking and show him that he needs to read his Bible. "You do know that Jesus is a Jew. If you hate Jews, you hate Jesus. You do know that the Jews are God's chosen people. You do know that the land of Israel is God's chosen place for His people and His temple." The man tells me I am all wrong. No, Jews are vile. Jews deserve to go to hell.
I try to continue guiding our group through the Book of James, but grief and sorrow threaten to overtake my soul. I constantly check the clock. I wish and hope that the study ends soon. My heart is broken. I have read about people hating Jews and hating Israel. But, I thought this only occur in other places in the world such as Iran, Syria and Saudi Arabia. I thought anti-semitism in western society was a thing of the past. We were just a few weeks shy of the 80th anniversary of Kristallnacht--The Night of Broken Glass. (On November 9, 1938, a Nazi propagated attack on Jews across Germany occurred in which over 250 synagogues were set on fire, over 7,000 Jewish owned businesses were looted and destroyed, and dozens and dozens of Jews were killed.) It's been almost 80 years since this great tragedy! We have moved forward as a people. We have seen beyond false propaganda and fallacious beliefs...haven't we?
The man and wife attend Bible study the next week. I become very stressed when I see the couple. I pray to God this man's erroneous ideas are changed. I pray God can change this man's heart toward Israel and the Jews. I pray God resolves this situation. I do not want to pray that I wish these people would never show up at this Bible study again; however, I am not sure I can continue attending if I must endure minute after minute of this man's repugnant remarks. Thankfully, God hears my prayers. The couple decides they have a busy schedule, and Bible study was not going to fit into it. The man and wife cease to attend Bible study. Relief flows through my veins upon hearing this, but I am also extremely sorrowful. I pray that this man can have a change of heart and learn to love the Jews, love Israel and love Jesus. Nevertheless, God uses this situation to prepare me for the future.
(For Part One click here)
To my delight, at Bible study, a new couple has decided to join the group. I am overjoyed when new people attend as they always add insight into the study. Almost as soon as Bible study begins, I am shocked and overwhelmed with the new man's hatred toward Jews and Israel. Any time the man talks about Jews or Israel, I can see flames of abhorrence rage in the man's eyes. He continually states how backwards the Jews are in their thinking...they are all going to hell...they are dirty...and the man's animosity toward Israel and the Jews continues for the rest of the study. I am simply blown away with this man's remarks. I try to counter this man's thinking and show him that he needs to read his Bible. "You do know that Jesus is a Jew. If you hate Jews, you hate Jesus. You do know that the Jews are God's chosen people. You do know that the land of Israel is God's chosen place for His people and His temple." The man tells me I am all wrong. No, Jews are vile. Jews deserve to go to hell.
I try to continue guiding our group through the Book of James, but grief and sorrow threaten to overtake my soul. I constantly check the clock. I wish and hope that the study ends soon. My heart is broken. I have read about people hating Jews and hating Israel. But, I thought this only occur in other places in the world such as Iran, Syria and Saudi Arabia. I thought anti-semitism in western society was a thing of the past. We were just a few weeks shy of the 80th anniversary of Kristallnacht--The Night of Broken Glass. (On November 9, 1938, a Nazi propagated attack on Jews across Germany occurred in which over 250 synagogues were set on fire, over 7,000 Jewish owned businesses were looted and destroyed, and dozens and dozens of Jews were killed.) It's been almost 80 years since this great tragedy! We have moved forward as a people. We have seen beyond false propaganda and fallacious beliefs...haven't we?
The man and wife attend Bible study the next week. I become very stressed when I see the couple. I pray to God this man's erroneous ideas are changed. I pray God can change this man's heart toward Israel and the Jews. I pray God resolves this situation. I do not want to pray that I wish these people would never show up at this Bible study again; however, I am not sure I can continue attending if I must endure minute after minute of this man's repugnant remarks. Thankfully, God hears my prayers. The couple decides they have a busy schedule, and Bible study was not going to fit into it. The man and wife cease to attend Bible study. Relief flows through my veins upon hearing this, but I am also extremely sorrowful. I pray that this man can have a change of heart and learn to love the Jews, love Israel and love Jesus. Nevertheless, God uses this situation to prepare me for the future.
(For Part One click here)
Thursday, January 17, 2019
A 2-day drive just to go to the grocery store
At my doctor's appointment last fall, my pulmonologist was very upset she was not able to assist me. She wanted to place me on IV antibiotics for my pseudomonas infection; however, my infectious disease doctor said no. Not knowing what else to do, she sent me home, telling me to "hang in there" until my next appointment.
Well, zip a dee do dah, my next appointment was finally here! After suffering for several months with increasing low grade fevers, more sputum production, increased coughing attacks, progressively more painful ear aches (similar in intensity to an ear infection), increasing sinus pressure and post-nasal drip, etc., I thought relief was finally in sight! The short story, no. Nothing happened at the appointment. I was told to follow up again in three months. I left the clinic wondering why I had wasted my time traveling an entire day to see my doctor to now spend a night in a hotel to drive back home in the morning. What a waste of my time and energy.
As I was lamenting my story to a friend, she interjected, "Well, you did get to go to the grocery store!" I nearly started laughing. Yes, near the medical center, there are two grocery stores and one wholesale club which carry a large selection of organic food. When I travel to the city, I try to stop at one of the stores to stock up on organic items which I cannot get where I live--tomatoes, pears, fennel, daikon, green beans, jicama, rutabaga, spices, etc. I often bring along 2-3 large coolers and stuff them as full as possible before making the long journey back home.
As I recall to mind all the delicious food I was able to buy on this trip to the medical center, I start laughing. Even though my medical appointment was a burst, there was a silver lining. I went on a two-day trip just to go to the grocery store!
Although my symptoms are continuing to worsen, at least in the meantime, I can make some delicious soup with all my newly purchased organic goodies. Bon appetit!
Well, zip a dee do dah, my next appointment was finally here! After suffering for several months with increasing low grade fevers, more sputum production, increased coughing attacks, progressively more painful ear aches (similar in intensity to an ear infection), increasing sinus pressure and post-nasal drip, etc., I thought relief was finally in sight! The short story, no. Nothing happened at the appointment. I was told to follow up again in three months. I left the clinic wondering why I had wasted my time traveling an entire day to see my doctor to now spend a night in a hotel to drive back home in the morning. What a waste of my time and energy.
As I was lamenting my story to a friend, she interjected, "Well, you did get to go to the grocery store!" I nearly started laughing. Yes, near the medical center, there are two grocery stores and one wholesale club which carry a large selection of organic food. When I travel to the city, I try to stop at one of the stores to stock up on organic items which I cannot get where I live--tomatoes, pears, fennel, daikon, green beans, jicama, rutabaga, spices, etc. I often bring along 2-3 large coolers and stuff them as full as possible before making the long journey back home.
As I recall to mind all the delicious food I was able to buy on this trip to the medical center, I start laughing. Even though my medical appointment was a burst, there was a silver lining. I went on a two-day trip just to go to the grocery store!
Although my symptoms are continuing to worsen, at least in the meantime, I can make some delicious soup with all my newly purchased organic goodies. Bon appetit!
Tuesday, January 15, 2019
88 days then freedom
For nearly the past three months, it seemed every time I would log on to Facebook, I would see nearly the same post--it was a desperate plea from Jayme Closs's grandfather and other family members to never let Jayme's search be forgotten.
On October 15, Jayme was abducted from her rural Wisconsin home after her mother and father were shot and killed. The trail for Jayme and her captor was cold. For 88 days, the hope that Jayme would ever be found seemed less and less likely. Then, in the blink of an eye, Jayme found a way to escape. Jayme found a woman who just happened to be walking her dog. (This also just happened to be the woman's first day in the area as she was staying in a nearby cabin.) The woman and Jayme found the closest house to call police. The residence of the home just happened to be home. After calling the police, Jayme's captor was found driving his car on a nearby road. Although many may say these events were an incredible series of luck, I side with Jewish rabbis who state, "Coincidence is not a kosher word." After 88 days of ceaseless prayers, God set-up a series of miracles.
As the world moves forward, many say this story has a happy ending. Jayme has been found. She has been reunited with her family. Her captor has been captured. Everything is back to the way it should be. However, this is anything from the truth. Jayme has lost her mother and father. She witnessed a horrific event and was then terrorized for 88 days. Jayme now has to adjust to a new life--a new home, a new living arrangement with new family members, new found fame and dealing with the endless emotions from these events. Although Jayme is now safe, Jayme's family endured 88 days of intense stress and worry. They, too, will have to deal with unceasing emotions as they try to move forward.
We also must not forget Jayme's captor. As much as people want this man to get the death penalty or at least life in prison, we must not give in to these throughs. We must forgive and love this man. As Jesus says, "...love your enemies and pray for those who persecute you, so that you may be sons of your Father who is in heaven; for He causes His sun to rise on the evil and the good, and sends rain on the righteous and unrighteous" (Matthew 5:44-45). Additionally, we must remember we are all sinners. We have all messed up in this life. Jayme's captor is no different; we must pray for this man to repent of his sins. "If a wicked man restores a pledge, pays back what he has taken by robbery, walks by the statues which ensure life without committing iniquity, he shall surely live; he shall not die. None of his sins that he has committed will be remembered against him. He has practice justice and righteousness; he shall surely live" (Ezekiel 33:15-16).
Also, please remember to pray for the criminal's family. I cannot imagine what it must be like to learn a family member killed two people and abductor a young girl. The guilt the family must feel. The shock and awe which overwhelms them. They desperately need our prayers as they deal with all these new revelations.
And lastly, please pray for forgiveness. Everyone involved in this case needs to forgive each other. This type of forgiveness is perhaps the hardest thing anyone has to do, but it must be done. Only through forgiveness can healing come. Only through forgiveness can one go forward. May God's grace and mercies abound. May His shalom never end.
On October 15, Jayme was abducted from her rural Wisconsin home after her mother and father were shot and killed. The trail for Jayme and her captor was cold. For 88 days, the hope that Jayme would ever be found seemed less and less likely. Then, in the blink of an eye, Jayme found a way to escape. Jayme found a woman who just happened to be walking her dog. (This also just happened to be the woman's first day in the area as she was staying in a nearby cabin.) The woman and Jayme found the closest house to call police. The residence of the home just happened to be home. After calling the police, Jayme's captor was found driving his car on a nearby road. Although many may say these events were an incredible series of luck, I side with Jewish rabbis who state, "Coincidence is not a kosher word." After 88 days of ceaseless prayers, God set-up a series of miracles.
As the world moves forward, many say this story has a happy ending. Jayme has been found. She has been reunited with her family. Her captor has been captured. Everything is back to the way it should be. However, this is anything from the truth. Jayme has lost her mother and father. She witnessed a horrific event and was then terrorized for 88 days. Jayme now has to adjust to a new life--a new home, a new living arrangement with new family members, new found fame and dealing with the endless emotions from these events. Although Jayme is now safe, Jayme's family endured 88 days of intense stress and worry. They, too, will have to deal with unceasing emotions as they try to move forward.
We also must not forget Jayme's captor. As much as people want this man to get the death penalty or at least life in prison, we must not give in to these throughs. We must forgive and love this man. As Jesus says, "...love your enemies and pray for those who persecute you, so that you may be sons of your Father who is in heaven; for He causes His sun to rise on the evil and the good, and sends rain on the righteous and unrighteous" (Matthew 5:44-45). Additionally, we must remember we are all sinners. We have all messed up in this life. Jayme's captor is no different; we must pray for this man to repent of his sins. "If a wicked man restores a pledge, pays back what he has taken by robbery, walks by the statues which ensure life without committing iniquity, he shall surely live; he shall not die. None of his sins that he has committed will be remembered against him. He has practice justice and righteousness; he shall surely live" (Ezekiel 33:15-16).
Also, please remember to pray for the criminal's family. I cannot imagine what it must be like to learn a family member killed two people and abductor a young girl. The guilt the family must feel. The shock and awe which overwhelms them. They desperately need our prayers as they deal with all these new revelations.
And lastly, please pray for forgiveness. Everyone involved in this case needs to forgive each other. This type of forgiveness is perhaps the hardest thing anyone has to do, but it must be done. Only through forgiveness can healing come. Only through forgiveness can one go forward. May God's grace and mercies abound. May His shalom never end.
Tuesday, January 8, 2019
The eleventh year
As the calendar flips to a new month and a new year, I celebrate another year with Mitochondrial Disease. I am entering the eleventh year since my world was flipped upside down after I had an emergency laparotomy procedure done. With the exception of my birth, I had never been in the hospital prior to this emergency operation. I was told post-surgery, it would take some time for my body to recover from my procedure. I had no idea what a normal recovery should have been. I thought having a racing heart when standing and constantly feeling as though I was going to pass out was "normal" after having surgery. I struggled and struggled to "recover", but I never did. As hard as I tried, my health progressively got worse.
At the time, I had no idea that I had Mitochondrial Disease. I had no idea that even prior to my surgery the constant fatigue, muscle weakness, muscle pain, tremors and migraines were not normal. Everyone always talks about the aging process. They complain about aches and pains. I assumed after I reached the age of 18, my body was showing the signs of aging. I was no longer a youth. My fatigue and constant exhaustion were my body's reaction to the aging process. I did not complain about my symptoms. I was just growing old like the rest of the world.
As the weeks and months rolled by after surgery, my symptoms began to be worrisome. I could no longer climb stairs, walk more than a few feet or stand more than a few seconds without blacking out. My body would shake from extreme exhaustion just trying to do the simplest things such as showering. I desperately tried to "get better" but my health seemed to continue to deteriorate.
I found myself in deep despair. What was wrong with me? Would I ever recover? Everyone assured me I was young; I would outgrow my symptoms. My health woes would soon pass. I would soon be on the road to better health. I would soon be back to my regular life.
As the years passed, the hope of ever recovering faded. When a new health crisis arose, doctors would look at me in great sorrow and say, "You are too young to have this health issue. You are too young to be this sick." Instead of comfort, the doctors' words often made me cry. Yes, I was young. Yes, I should not have this many health issues. Thanks for reminding me that instead of pursing higher education and fulfilling my dreams, I am stuck in a failing body.
Now, as I am entering year number eleven since my health took a significant nose-dive, I try to remain optimistic. As God has taken away many things in my life such as the ability to breathe on my own without the use of a ventilator, I try to embrace the things I can still do--I can type, I can read, I can enjoy the taste of many wonderful foods, etc. I know at any time, God can take away these luxuries. I understand that as hard as my life is, it can be so much worse.
Although now no one ever speaks to me about recovering from this illness, I cling to God and know that if He desires, He can heal me at any time. Since He has chosen not to do so, I must embrace the fact the He is using me in my current state of health to fulfill His will. As tough as it is to live with this knowledge (and to live with this disease), I rejoice knowing that God is using me. What a blessing that is!
At the time, I had no idea that I had Mitochondrial Disease. I had no idea that even prior to my surgery the constant fatigue, muscle weakness, muscle pain, tremors and migraines were not normal. Everyone always talks about the aging process. They complain about aches and pains. I assumed after I reached the age of 18, my body was showing the signs of aging. I was no longer a youth. My fatigue and constant exhaustion were my body's reaction to the aging process. I did not complain about my symptoms. I was just growing old like the rest of the world.
As the weeks and months rolled by after surgery, my symptoms began to be worrisome. I could no longer climb stairs, walk more than a few feet or stand more than a few seconds without blacking out. My body would shake from extreme exhaustion just trying to do the simplest things such as showering. I desperately tried to "get better" but my health seemed to continue to deteriorate.
I found myself in deep despair. What was wrong with me? Would I ever recover? Everyone assured me I was young; I would outgrow my symptoms. My health woes would soon pass. I would soon be on the road to better health. I would soon be back to my regular life.
As the years passed, the hope of ever recovering faded. When a new health crisis arose, doctors would look at me in great sorrow and say, "You are too young to have this health issue. You are too young to be this sick." Instead of comfort, the doctors' words often made me cry. Yes, I was young. Yes, I should not have this many health issues. Thanks for reminding me that instead of pursing higher education and fulfilling my dreams, I am stuck in a failing body.
Now, as I am entering year number eleven since my health took a significant nose-dive, I try to remain optimistic. As God has taken away many things in my life such as the ability to breathe on my own without the use of a ventilator, I try to embrace the things I can still do--I can type, I can read, I can enjoy the taste of many wonderful foods, etc. I know at any time, God can take away these luxuries. I understand that as hard as my life is, it can be so much worse.
Although now no one ever speaks to me about recovering from this illness, I cling to God and know that if He desires, He can heal me at any time. Since He has chosen not to do so, I must embrace the fact the He is using me in my current state of health to fulfill His will. As tough as it is to live with this knowledge (and to live with this disease), I rejoice knowing that God is using me. What a blessing that is!
Thursday, January 3, 2019
2019: A Look Forward
As the new year begins, a blank canvas lies before us. One can only imagine the colors and landscapes which God will paint as the year progresses. What wonderful new surprises and blessings await us. What hardships and sorrows lie before us.
I look to an email I wrote ten years ago in which I was overjoyed to be alive. A health crisis should have sent me to heaven, but God intervened and saved my life. I was thrilled to have another year lying before me. I was excited to dive into another year. I look with a heavy heart at this enthusiasm. That following year was full of much heartache, grief and sorrow. My health took a downward turn and has continued on the road of unfortunate health.
I now look at each year as a new challenge of endurance. I know many obstacles await me. I know my faith will be tested over and over again. God has promised as we grow in our faith, we will face many trials. My mind wonders what hurdles must I clear this year. Will the pseudomonas infection in my respiratory tract be healed? Will the infection become worse before it gets better? How many doctor's appointments and days in the hospital will this year hold?
I always make a new year's resolution that I will stay as far away from the medical world as possible. However, I know this is always unrealistic as I already have three appointments scheduled for 2019. Instead, I opt to fulfill my dream--being a medical missionary. I know in this dream of mine I see myself as a physician in some far off land saving gravely ill children. I am able to perform some simple lifesaving technique which saves an entire village. However, this is not God's plan for me. Instead, my medical missionary work is completed by being a patient. When I am in the hospital, I am on-call 24/7. I am constantly on the mission field trying to be the best possible Christian and at the same time, trying to save souls. Through kindness and sharing God's word, I work from the confines of a bed situated in a single room. Although the way in which I complete this task is different than what I had imagined, the end result is the same--working the medical mission field.
May 2019 be filled with much joy. May 2019 be your best year yet. May God richly overfill your cup with many mercies, blessings and miracles. Whatever lies before us, may we glorify God in all that we say and do. May we let our light shine, and may we be a beacon of hope to those around us. Shalom.
I look to an email I wrote ten years ago in which I was overjoyed to be alive. A health crisis should have sent me to heaven, but God intervened and saved my life. I was thrilled to have another year lying before me. I was excited to dive into another year. I look with a heavy heart at this enthusiasm. That following year was full of much heartache, grief and sorrow. My health took a downward turn and has continued on the road of unfortunate health.
I now look at each year as a new challenge of endurance. I know many obstacles await me. I know my faith will be tested over and over again. God has promised as we grow in our faith, we will face many trials. My mind wonders what hurdles must I clear this year. Will the pseudomonas infection in my respiratory tract be healed? Will the infection become worse before it gets better? How many doctor's appointments and days in the hospital will this year hold?
I always make a new year's resolution that I will stay as far away from the medical world as possible. However, I know this is always unrealistic as I already have three appointments scheduled for 2019. Instead, I opt to fulfill my dream--being a medical missionary. I know in this dream of mine I see myself as a physician in some far off land saving gravely ill children. I am able to perform some simple lifesaving technique which saves an entire village. However, this is not God's plan for me. Instead, my medical missionary work is completed by being a patient. When I am in the hospital, I am on-call 24/7. I am constantly on the mission field trying to be the best possible Christian and at the same time, trying to save souls. Through kindness and sharing God's word, I work from the confines of a bed situated in a single room. Although the way in which I complete this task is different than what I had imagined, the end result is the same--working the medical mission field.
May 2019 be filled with much joy. May 2019 be your best year yet. May God richly overfill your cup with many mercies, blessings and miracles. Whatever lies before us, may we glorify God in all that we say and do. May we let our light shine, and may we be a beacon of hope to those around us. Shalom.
Tuesday, January 1, 2019
2018: A Look Back
As I reflect back on this last year, I can barely comprehend all the trials and challenges I have had to endure. I have never kept track of all the days I have spent in the hospital; however, this year is ranked number one for days spent in the intensive care unit. From May through October, I was constantly in and out of the hospital. The time between hospitalizations was sometimes less than 24 hours. The main reasons for the hospitalizations were respiratory infections, pancreatitis attacks and anaphylactic reactions.
In 2018, I fought eight different hospital-acquired infections. I became infected with my first bacteria in July of 2017. Finally in May of 2018, I was free from this infection. However, in the meantime, I acquired several other infections. The most potent infection I acquired was from a hospital ventilator. I had a procedure done in which a cyst was drained and removed from my pancreas, and my pancreas ducts were enlarged. Unknown to anyone, the hospital ventilator used during the procedure harbored a bacteria called pseudomonas. It took a few weeks for the bacteria to take hold. However, when the pseudomonas became comfortable, it exploded into a very dangerous infection. I was hospitalized for 12 days..and yes, during this hospitalization, I acquired another bacterial infection.
The other notable experiences for 2018 were my two major anaphylactic reactions. (I also had a few other anaphylactic reactions while hospitalized, but the reactions were minor compared to these other two.) My first major reaction happened when my neurologist insisted I receive intravenous immunoglobulin (IVIG). I had a very, very bad feeling about this treatment. I delayed receiving the treatment for as long as possible. Finally, when there were no more excuses and no more days in which I could lobby for more time, I received the infusion. Within 20 minutes of the poisonous liquid slowly dripping into a vein in my arm, I was clinging to life. I had an anaphylactic reaction and was wheeled (just down the hall) to the emergency department. My other major anaphylactic reaction occurred when I received an intravenous antibiotic. Praise God, a home health nurse was at my home when the drug was administered. When the reaction happened, the nurse had IV Benadryl and epinephrine. She administered those drugs and called 911.
The Book of James has been tremendously helpful this year. And in fact, I feel like the following verses sum up most of 2018:
"Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing" (James 1:2-4).
In 2018, there were many times in which crazy events occurred which endangered my life. I often was alone in this fight. It was me against the medical system. Thankfully, during these times, God allowed me to see that although I might have been alone in the physical world, in the spiritual world, I was surrounded by God's love and grace. Each challenge was a test to either cling to God or trust in my own ways. As I learned to trust God more and more, I seemed to have passed each trial. When a test was passed, God moved me on to new, more complicated situations.
As I have grown in my faith, I am trying to embrace my trials. When everything seems to be falling apart or when God seems to be slamming many doors closed, I stop and thank God for these situations. I know with each new obstacle, I must have cleared the one before. I know I should be rejoicing because I am climbing the ladder of faith. As hard as it is to have to wait or have to do things in a very complicated manner, I must continue to trust that God is in control. My vision is limited; His is infinite. Many times the path which seems to be the easiest and the straightest is often the one fraught with the most toils and dangers. The path which seems complicated and convoluted is often full of many blessings and miracles. If we allow ourselves to trust God, He will abundantly overflow our cup with His love and mercy.
In 2018, I fought eight different hospital-acquired infections. I became infected with my first bacteria in July of 2017. Finally in May of 2018, I was free from this infection. However, in the meantime, I acquired several other infections. The most potent infection I acquired was from a hospital ventilator. I had a procedure done in which a cyst was drained and removed from my pancreas, and my pancreas ducts were enlarged. Unknown to anyone, the hospital ventilator used during the procedure harbored a bacteria called pseudomonas. It took a few weeks for the bacteria to take hold. However, when the pseudomonas became comfortable, it exploded into a very dangerous infection. I was hospitalized for 12 days..and yes, during this hospitalization, I acquired another bacterial infection.
The other notable experiences for 2018 were my two major anaphylactic reactions. (I also had a few other anaphylactic reactions while hospitalized, but the reactions were minor compared to these other two.) My first major reaction happened when my neurologist insisted I receive intravenous immunoglobulin (IVIG). I had a very, very bad feeling about this treatment. I delayed receiving the treatment for as long as possible. Finally, when there were no more excuses and no more days in which I could lobby for more time, I received the infusion. Within 20 minutes of the poisonous liquid slowly dripping into a vein in my arm, I was clinging to life. I had an anaphylactic reaction and was wheeled (just down the hall) to the emergency department. My other major anaphylactic reaction occurred when I received an intravenous antibiotic. Praise God, a home health nurse was at my home when the drug was administered. When the reaction happened, the nurse had IV Benadryl and epinephrine. She administered those drugs and called 911.
The Book of James has been tremendously helpful this year. And in fact, I feel like the following verses sum up most of 2018:
"Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing" (James 1:2-4).
In 2018, there were many times in which crazy events occurred which endangered my life. I often was alone in this fight. It was me against the medical system. Thankfully, during these times, God allowed me to see that although I might have been alone in the physical world, in the spiritual world, I was surrounded by God's love and grace. Each challenge was a test to either cling to God or trust in my own ways. As I learned to trust God more and more, I seemed to have passed each trial. When a test was passed, God moved me on to new, more complicated situations.
As I have grown in my faith, I am trying to embrace my trials. When everything seems to be falling apart or when God seems to be slamming many doors closed, I stop and thank God for these situations. I know with each new obstacle, I must have cleared the one before. I know I should be rejoicing because I am climbing the ladder of faith. As hard as it is to have to wait or have to do things in a very complicated manner, I must continue to trust that God is in control. My vision is limited; His is infinite. Many times the path which seems to be the easiest and the straightest is often the one fraught with the most toils and dangers. The path which seems complicated and convoluted is often full of many blessings and miracles. If we allow ourselves to trust God, He will abundantly overflow our cup with His love and mercy.
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