Choosing Joy is a Habit That Must Be Cultivated

 

 

Joy is not the same as happiness.  Joy is an inside job.  No matter the circumstance, how I feel or what I see.  Dr. Steven C. Riser says, “We can make a distinction between joy and happiness: happiness being dependent on external circumstances, while joy is internal, a result of being controlled by the Spirit.  Happiness is a feeling dependent on circumstances and usually restricted to moments when life is going well. Joy is an inner serenity of the soul, rooted not in circumstances but in a choice to trust God’s faithfulness, regardless of what is happening externally”. In scripture when James says “Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance” (James 1:2-3), he most specifically has in mind the trials that come as a consequence of one’s faith in Christ. But, “trials” can also include hardships and sufferings that Christians encounter even as they are following the Lord; unrelated to their public stance as Christians.

 

But how can I “Count it ALL joy” when the pain is so real.  Being on this health roller coaster with my husband has taught me, choosing joy does not mean that we pretend to be happy when we are not. , Choosing Joy is realizing that we serve a God who is bigger than our circumstance, and focusing on GOD instead of our circumstance causes the well of gratitude within us to overflow.  Focusing on God causes us to keep in the forefront of our minds that God is all powerful and he makes ALL things work together for good to them that love God, to them who are the called according to his purpose (Romans 8:28).  By focusing on God we are encouraged to remember “we walk by faith, not by sight” (2 Corinthians 5:7). By focusing on God we are reminded “Now faith is the substance of things hoped for, the evidence of things not seen” (Hebrews 11:1). And even on those “Job” days where one team of doctors, after another team of doctors, after another team of doctors come in with bad news, after bad news, after bad news and choosing joy is hard we still choose joy over despair, because 1 Peter 5:7 says “Give all your worries and cares to God, for he cares about you.”

 

 

Choosing joy transforms your life, and therefore all those you love and those who are watching how you handle adversity.  I’m amazed at the number of people whom I’ve never met who reach out to me and tell me how my husband and I have encouraged them.  Some people have shared their challenging work situations.  Some people have shared their challenging marital conditions.  Walking out what you say you believe is an awesome responsibility that has far reaching influence and impact.  People are ALWAYS watching you.

 

Choosing joy develops the attitude of gratitude. The thread of gratitude will become a lifeline to joy. Appreciate one thing, then another, then another, and pretty soon you will experience joy rising within you.

 

There isn’t a quantum leap to joy.  I must choose it moment by moment. Choosing joy is a habit that I cultivate regularly.

CHARLESTON 2011

 

 

I don’t know when my fascination with U.S. geography and specifically southern culture began.  I am a California Girl, born and raised but I have always been interested in the south.  Hot and muggy summers don’t bother me.  I actually kind of like them.  I love sweet tea and fireflies.  Oh and magnolia trees and Spanish moss. I’d only spent significant time in Maryland and Virginia.  But, I had also visited North Carolina and Alabama.  And I had visited Georgia and Florida multiple times. But, the one southern town that had captured my attention was one town I had never visited. . .Charleston.

 

One of my goals is to visit all 50 states.  At the beginning of 2011 I had only been to 20 states.  A trip to historic Charleston, South Caroline with its stately homes and lowcountry cuisine had to be #21.  So, for our 7 year anniversary (August 2011) we took a delayed anniversary trip to Charleston in September.  Thomas had never been to Charleston either.  But, it was never a city he gave any thought to.  But, being the Foodie that he is, once I shared with him Charleston’s rich culinary identity he was ready to explore the Holy City.

 

In September 2011, we boarded a flight at LAX on our way to Charleston.  When we landed it was sunny and hot.  We picked up our rental car and drove straight to our hotel, the French Quarter Inn.  It was a luxurious boutique hotel.  Our Traditional King Room with a spacious Italian marble bathroom was the perfect oasis for our 4 night stay.  Plus, I’d never heard of a hotel with pillow service.  It was like room service but instead of selecting food you selected a pillow from the Sound Sleep Pillow menu, and they delivered it to your room.  Wow.  Every day warm cookies and milk were served in the lobby.  Also, a selection of flavored iced teas, infused waters, and sweet and savory snacks were served at dusk.  We chose the perfect hotel for us.

 

We explored the city, and we also traveled to Mt. Pleasant to visit Boone Hall Plantation, home of the famous Avenue of the Oaks.  It is a 3/4 mile long pathway with 270 year old giant live oak trees draped with Spanish moss on both sides of the pathway.  This entrance into Boone Hall truly is majestic.

 

 

Thomas and I were in complete reverence when we entered the slave quarters on the plantation.  Thomas touched the brick of the “homes” and said I’m touching brick my ancestors made.  I’m touching the place where they lived.

 

 

After standing in silence in the slave quarters for a little while we ventured over to the Gullah Theatre to learn more about the Gullah culture and its music.  Thomas was selected out the audience to learn how to beat the drum the way they did.  The next time we return to Charleston we want to learn more about the Gullah Geechee culture.

 

 

The food in Charleston is AMAZING!  Its restaurants are on par with any restaurant you’d find in New York, San Francisco, Los Angeles, or Chicago.  Charleston may be a tiny city but it is jam-packed with great restaurants.  It has a remarkable culinary scene.  We wished we could have stayed longer so we could have eaten at more restaurants.  The seafood in Charleston is excellent!  One of Thomas’ favorite things to eat is Shrimp n’ Grits and I think he had it at every restaurant we dined in.  But his hands down favorite was the Barbeque Shrimp & Grits at 82 Queen, which was my favorite restaurant.  Made with Southern Comfort Barbeque Sauce, Applewood Smoked Bacon, Cheddar Cheese, and Scallions, it was DELICIOUS!!!

 

 

Thoughts of our trip to Charleston always bring a smile to my face, and I look forward to visiting again.  Until then, I’ll have to get my Charleston fix by watching Southern Charm.  That’s one reality show I got Thomas to watch with me.  He still won’t watch my 600 Lb. Life. But, Southern Charm he’s cool with.

 

I Know Exactly How You Feel. . .Uh. . .

 

 

My husband has been in and out of the hospital since before we were married in 2004.  But the hospitalizations have become more frequent since April 2012.  We walk this journey of health challenges in a pretty public manner, so many people know when Thomas is in the hospital or when he’s at home experiencing a health crisis.  We have legions of people following our journey and praying for us.  Most people comment on a post on social media, with words of encouragement or a prayer.  Others send encouraging text messages.  But every now and then I get a person who says “I know exactly how you feel.”  Really?  So your husband has been in the hospital 100+ times over the past six years?  Your husband has a tube down his throat and is on a ventilator to help him breathe?  You haven’t heard your husband’s voice in 6 weeks because he has a breathing tube down his throat, so he can’t speak?  Your husband has a feeding tube up his nose?   Your husband’s kidneys don’t work so he’s on dialysis?  When your husband is not in the hospital and he’s home you have to lift him off of the couch place him in a wheelchair, wheel him to the bathroom, lift him out of the wheelchair, pull his pants down, and place him on the toilet, and then when he’s done clean him up?  Oh wait. . .or maybe you have to drive him to 6+ doctor appointments every month and when you get to the appointment and park your car, you have to get the wheelchair out of the trunk of the car and wheel it around to the passenger side and lift your husband out of the passenger’s seat and place him in the wheelchair and push him into the doctor’s office.  Or maybe you haven’t held your husband’s hand in 5+ years because the lupus, scleroderma, and nephrogenic systemic fibrosis have so ravaged his hands that he can’t bend them and the skin is so broken down that the mere touch of a cotton ball gliding over his hands causes excruciating pain. Or maybe you haven’t felt your husband’s embrace because he’s unable to stand and lift his arms to hug you.  Or maybe you haven’t been a passenger in your vehicle in over 2 years, because your husband is no longer able to drive.

 

Sorry, but unless your spouse has CHRONIC health challenges you really don’t understand.  A few years back, my Dad was notorious for saying the forbidden sentence to me.  I’d tell him something I was going through with Thomas’ health and he’d say “I know exactly how you feel.”  I just let it slide because it was my Dad.  However, he made the same remark in future conversations.  Finally, one day he said “I know exactly how you feel”, and I exploded.  I said, “Dad, have you ever had to wipe Mom’s butt after she went #2? No.  Have you ever had to feed Mom because she couldn’t bend her fingers to hold a fork, to feed herself. No. Have you ever had to wheel Mom around in a wheelchair indefinitely. No. In your 51 years of marriage you’ve never had to be Mom’s caregiver, so stop saying you know exactly how I feel.  I hope when your best friend’s daughter died you didn’t say to him I know how you feel.  You couldn’t possibly know how he feels when all of your kids are alive and well!” My Dad listened to me and when I was finished he said “I won’t say that again.”  And he hasn’t.

 

When a friend or family member is walking a path you have never been on the best thing to do is to let them know you are there for them, praying for them and thinking of them.  Be compassionate. Uplift them. But unless you are walking the path they are on or have walked the path they are on, please don’t say I know exactly how you feel. Uh. . .no you don’t.

Why I LOVED Marvel’s Black Panther

 

 

Seeing a movie opening weekend is always a special treat.  The anticipation and the excitement are at an all time high.  You know you’re about to go on an adventure unlike any other.  And you want others to join you on the adventure.  That’s how I felt all week as I counted down the days for the opening of Black Panther.  Although I was spending all my time in my husband’s ICU hospital room at Ronald Reagan UCLA Medical Center in Westwood, I knew I had to leave Westwood for Wakanda.

 

Ah Wakanda. Just in case you’re in that small number of people who have no idea what Wakanda is, allow me to enlighten you. Wakanda is a fictional African nation appearing in American comic books published by Marvel Comics. It is the most prominent of several fictional native African nations in the Marvel Universe and home to the superhero Black Panther.  Technologically advanced and self-sufficient, Wakanda represents and celebrates everything from traditional African society to African-American political debates, from the preservation of identity to the strength and beauty of black women, all within its lush confines.

 

The women of Wakanda are beautiful and their sex appeal is obvious but secondary to their personality and skill. They are strategic opponents in battle, saving the life of Black Panther several times.  They are entrusted with protecting the nation.  They do not need to be rescued or sustained by men.  The women are graceful and determined, confident and supportive.

 

 

I loved watching the women interact with the men.  I witnessed an exchange of mutual respect and true partnership.  Each one wanting the other to reach the highest evolution of their selfhood.  Relationships where the two  individuals are independently successful and mutually supportive are the best.

 

 

Although it’s next to impossible to get me to leave my husband’s side in the hospital, I’m glad I journeyed to the utopia that is Wakanda, even if it was only for two hours and fifteen minutes.  I plan on visiting again, next time with my healed husband.

 

 

IN SICKNESS

 

 

When you get married, one thing that some people don’t realize is that the “in sickness” in “in sickness and in health” may actually be something you encounter.  I believe most healthy couples at the altar don’t think about it.

 

I encountered “in sickness” before I said “I do”. But the “in sickness” Thomas and I dealt with before we got married was something we navigated well.  Thomas had renal failure and dialysis three times per week.  At the time he had no other health challenges and renal failure and dialysis didn’t interrupt his life to the point where they were his life.  They were just aspects of his life.  Thomas worked.  He attended church.  He mentored young boys.  He was active and full of energy.  It wasn’t until a few years after we said “I do” that the “in sickness” part of our vows took on new meaning. It definitely threw a curveball into our marriage. Day to day life, long term plans, and goals have become unpredictable.

 

There are changed plans, canceled plans and backing out of things last minute. And that’s just a fraction of the physical side.  There is also the battlefield of the mind.  Battling negative thoughts, like What if he doesn’t get better? What if he has to spend months in the hospital? and the list goes on.  Then there’s battling fear and anxiety.  As a Believer, I know God has not given me the spirit of fear; but of power, and of love, and of a sound mind (2 Timothy 1:7), and I know I am not to be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, I am to present my requests to God (Philippians 4:6). I know this and I believe this.  However, sometimes my emotions get the best of me.  Chronic illness in marriage is no walk in the park.

 

Sickness in marriage will challenge you, confront you, and change you.  Nothing has assisted me in understanding my role of helpmate like the chronic illness my husband deals with on a daily basis.

 

People often tell me I’m amazing or I’m Super Wife.  They thank me for doing something that I believe is what a committed, devoted, God fearing spouse should do. I am just a wife, empowered by the Love of  God, to do what the world considers beyond normal and extraordinary.  I’m living the vows.  Every day I ask the Holy Spirit to help me to be what my husband needs that day.

 

The challenges that illness present have the potential to bring you closer or tear you apart. I have found that prayer, flexibility, support from family & friends, and compassion are keys to remaining close when illness invades your marriage.

Doctors can give the diagnosis, but only God KNOWS the prognosis

 

 

Saturday, February 3 is a day I will probably never forget.

 

My husband, Thomas, had been in the hospital since December 29 and various health challenges kept arising; internal bleeding, low blood pressure, atrial fibrillation, pneumonia, breathing issues, a lupus flare, and excruciating all over body pain just to name a few. There were also infections.  Those pesky infections kept coming.  Every time a blood culture was done something would grow.  There were bacterial infections and fungal infections. At one point, Thomas had four different bacterial infections and one fungal infection.  Thomas also experienced abdominal pain that would not go away.  On February 1 a CT scan was done and it revealed a hole in Thomas’ colon.  A perforated colon is a dangerous condition and can be life threatening. What makes this condition lethal is not due to the perforation itself but in the seeping out of the toxins from the colon to the bloodstream that can cause serious harm to the body. The most common treatment recommended is surgery.

 

On Friday, February 2 a surgeon came and spoke to us and stated Thomas was not a good candidate for surgery due to his frail health.  The surgeon explained this was a difficult surgery and recovery for a healthy person, so for someone in Thomas’ condition it was not a good solution.  He said, “It would be equivalent to a quarterback throwing a Hail Mary pass that most likely has no chance of being a success.”  So now what?  Do you just leave the hole alone.  The surgeon said we will give your husband the strongest antibiotics and hope for the best.  “Hope for the Best.”  That was it.  I felt hopeless.

 

Another doctor said it appears to be a small hole so it’s possible the hole could close on it’s own or an abscess could form and wall off the opening.  They also stated that although the hole wasn’t something interventional radiology (IR) could repair, IR could place a catheter to drain the fluid sitting in the abdominal area, that was causing Thomas so much discomfort.

 

So on Saturday, February 3 Thomas was wheeled down to IR for the procedure to place the catheter to drain the fluid in his abdomen area.  But 15 minutes later he was back in his room.  I thought that was fast.  And then a surgeon approached me and said the imaging that IR did revealed the hole in Thomas’ colon was much larger than they thought.  He said, “If we don’t do surgery your husband will die.  If we do surgery your husband might die.”  Will vs. Might.  My head was spinning. The surgeon who had just told me the day before there was no way he would operate on Thomas due to his frail health, now wanted to operate on him.

 

The anesthesiologist soon joined the surgeon at Thomas’ bedside and he was very direct.  He said Mr. Griffin there is a strong possibility you will not survive this surgery.  Are you sure you want surgery?  You don’t have to do it.  We have ways to keep people comfortable for the amount of time they have left. Thomas said I want the surgery.  The anesthesiologist reiterated what he said but this time said, “Mr. Griffin you most likely will not survive this surgery.”  My Dad, my Aunt, and I stood at Thomas’ bedside as he said, “I want the surgery and if I don’t survive donate my body to science”.

 

The surgeon and the anesthesiologist pulled me out of the room and said if there is anyone your husband wants to talk to or see he should do it.  I asked how much time did we have.  They said how about an hour.  We’ll send for him at 8pm and then they said you know what, your husband talking to his family and friends is more important so have the nurse call us when you’re ready. I went back in Thomas’ room and kissed him on the forehead then walked to the recliner behind his bed and sat down and cried.  My Aunt came and wrapped her arms around me.

 

I gave myself two minutes to cry, and then I jumped up and asked Thomas who he wanted to talk to.  My Dad called his Dad.  I called Thomas’ stepdad.  I then called Thomas’ mom.  Thomas would say a name and I would call that person and quickly explain what was going on and then put the phone up to Thomas’ ear so they could talk to him. I called a few local friends and of course my brother and sister who reside in Los Angeles and within 30 minutes Thomas had 12 people in his room loving on him.  We all joined hands and my aunt led us in prayer.

 

When Thomas was wheeled down for surgery, our family and friends proceeded to the waiting room, and I of course went down with him and my Dad and sister accompanied me.  We went as far as we could go with Thomas and at 9:35pm he was wheeled into the operating room.

 

My Dad, my sister, and I joined the others in the waiting room.  Now for the hard part. . .waiting.   Some talked. Some read. Some prayed. Some ate.  A security guard entered the waiting room just after midnight and told us the waiting room we were in closed at midnight so we had to move to another waiting area in the hospital.  As we walked to the other waiting area I called ICU to speak to Thomas’ nurse to let her know we were no longer in the waiting area that I told her we’d be in.  I wanted to tell her where we were moving to.  This way if the surgeons were going to come talk to me after surgery she could let them know where I was.  Thomas’ ICU nurse was on a break but the nurse who answered the phone was a previous nurse of Thomas and she said, “Mrs. Griffin your husband just got back to his room.”  I’m like Wait. What. Surgery is done?  She said oh yes it’s done I just helped get him situated back in his room.  I thanked her and hung up the phone and said Thank you Jesus!  I then shared the news with our family and friends.  Everyone was elated.  I then said to my sister they were supposed to call me or come talk to me when surgery was finished.  I wonder if the nurse I spoke with was talking about Thomas, so I called back and spoke with the same nurse and she reiterated your husband is back in his room.

 

We all took the elevator to the 4th floor, entered the ICU unit, went to Thomas’ room and there he was. Heavily sedated and intubated but very much alive!  GOD IS ABLE!

 

THE DAY I MET MAGIC

My sister and brother-in-law stopped by the hospital for a visit.  As we were sitting in my husband’s room chatting, my sister turned to me and abruptly said let’s go for a walk.  I never like leaving my husband’s side. I have my daily routine.  I like to be right there next to him so he knows I’m in the trenches with him, and so I can hear first hand what the doctors are saying about his ailments and treatment plan. But on this 76 degree winter day in Los Angeles I agreed to take a walk.  And my brother-in-law agreed to stay in the room with Thomas.  I grabbed my purse and off I went with my sister.

 

As we exited the hospital I felt the warmth of the sun on my face and immediately felt a sense of gratitude for living in a place where winter days feel like summer days. My sister and I didn’t have a planned destination, so we just talked and walked around Westwood.  We passed the various medical buildings and eateries and then stopped in front of a movie theater and continued our conversation about Thomas’ health, friends’ reactions to Thomas’ health, and inevitably a favorite Dixon Girls topic “What do you want to eat?” I wasn’t really hungry but it was lunch time and I needed to eat.  My sister said you want to go to Whole Foods.  I said sure.  We crossed the street and headed to my favorite grocery store.

 

When we entered the store I wanted to head straight to the sushi section.  My sister wanted to search for Manuka honey.  We didn’t find it because we were distracted by a dessert display filled with cookies.  One that looked like chocolate dipped Oreo cookies caught our eye. We determined it wasn’t an Oreo cookie because the shape was larger than an Oreo.  But whatever it was it looked yummy.  We decided to pass on the sweet treats and head over to the salad bar, but before we got to the salad bar we made a pit stop at the hot food bar.

 

As I was looking at the overcooked noodles I hear my sister say, “Earvin, how you doin?”  I look up and see Earvin “Magic” Johnson.  I thought to myself “My sister knows Magic Johnson?!  This fool never told me that!”  My sister continues towards Magic and he says hey and gives her a hug.  He has a look on his face like he was trying to figure out where he knew my sister from but was playing it off like he remembered her.  My sister then slaps him on his arm and says “I’m just playin’. I don’t know you.”  The three of us fell out laughin’, as I’m thinking to myself “This nut!”  I then said, “She said your name like she knew you”.  Magic said she did.  We chuckled again.  Then my sister asks for a picture.  I quickly told him my husband was in the hospital.  I figured if he was thinking about saying no to a pic he would change his mind after hearing that.  He said of course.   My sister snapped a picture of me and Magic, and then I snapped a picture of my sister with Magic.  I proceeded to tell him my husband was a Pistons fan.  He said, “It’s all good.  It’s Michigan.”  I also told him how my husband and I cried watching the video when he apologized to Isaiah Thomas. We thanked him for taking the time to take a pic with us.  He said you’re welcome and returned to getting his food from the hot food bar.  As we turned to walk away.  He said, “Tell your husband I hope he gets better soon”.

 

 

My sister and I walked away and laughed and recounted the moment over and over again.

 

You never know what you’ll miss out on if you stay in one place too long.  I think I’ll start taking a daily walk break. Getting out of your regular routine is where the magic happens.

 

 

 

Sometimes a Setback is a Set-up for a Step Up

Sometimes things don’t go the way you think they should go or the way you want them to go.  Disappointment tries to dig deeply into the soil of your heart where discouragement can grow.  You wonder will things turn around. You feel defeated but try to remain positive.

 

Wednesday, January 17 was a day filled with good news. It was Day 20 in the hospital for my husband Thomas whom I affectionately refer to as my Warrior Husband. And on social media his hashtag is #healedhusband

 

After a few rough days in the hospital, Wednesday greeted us with a smile. Thomas had been on a feeding tube for awhile, and the doctors wanted to remove the tube on Friday, January 12 but Thomas failed the swallow evaluation. If at first you don’t succeed, try, try again, so Thomas was given another swallow evaluation on Monday, January 15 but once again he failed.  The doctors said they’d try again the next day.  Thomas was determined to pass on Tuesday but he wasn’t given the opportunity to be tested because the machine needed to do the swallow evaluation broke.  Thomas was dejected.  I encouraged him by reminding him that a delay is not a denial and he could try tomorrow because I’m sure the machine would be repaired by then.  Thomas was so ready to have that tube out of his nose.  Nasogastric intubation is a medical process involving the insertion of a plastic tube through the nose, past the throat, and down into the stomach. Thomas was given liquid food through the tube. When you’re in a coma I’m sure this isn’t troublesome, but when you are fully conscious and alert like Thomas is the tube is quite annoying.  Thomas was so over that tube and ready to eat regular food again.  On Wednesday, January 17 Thomas was given a swallow evaluation for the third time and he passed. Yes!  Bye Bye feeding tube.

 

Shortly after the removal of the feeding tube the doctors informed us,  Thomas’ oxygenation had improved so he could be taken off high flow oxygen, and just use a nasal cannula for a little extra oxygen to help him breathe. Thomas had gone from intubation, to a BiPAP machine, to high flow oxygen, to a nasal cannula.  Thomas was so happy to almost be back to breathing on his own without any mechanical assistance.

 

Thomas felt two steps closer to better health.  We celebrated with a Pleasure Peach smoothie from Jamba Juice.  He had been craving one for about two weeks.  It was the first thing he wanted when the feeding tube was removed.  Our dear friend Micayla who also happens to be the Praise & Worship Leader at our church was so sweet to bring it to him. I can imagine that first sip tasted like biting into a juicy Georgia peach on a hot and humid summer day. . . sweet and refreshing.

 

Wednesday was a great day with several wins.  We could see the light at the end of the tunnel and were so grateful.  And then Thursday came.

 

Thomas did not sleep well Wednesday night, and by Thursday morning his breathing was labored and the carbon dioxide level in his blood was three times what it should be. As the day progressed his breathing worsened and the carbon dioxide level rose.  After only being discharged from ICU less than a week ago, the doctors said it was best for Thomas to return to ICU. So on Thursday, January 18 Thomas returned to the Intensive Care Unit. Talk about taking the wind out of our sails.  Why were we going backwards.

 

Thomas was transferred to ICU and I had to sit in the waiting area while they got him set up in his new room.  I was told someone would be out shortly to get me.  I waited and I prayed. Approximately 20 minutes went by and then a familiar face approached me.  It was Gwen!  One of our favorite ICU nurses.  I was like what are you doing here?  I asked this question because Gwen typically only works days.  She said they asked me to work the night shift tonight and I’m going to be your husband’s nurse.  I wanted to jump up and hug her.  You see, Gwen is like a Super Nurse.  She studies her patients and anticipates their needs.  She is proactive and is detail oriented. I knew Thomas would be in excellent hands with Gwen as his nurse.  She thoroughly explained everything that was going on with Thomas and what they were going to do to bring his Co2 level down.  She was confident and reassuring.

 

 

Thomas was put on a BiPAP machine Thursday night, and on Friday afternoon continuous 24/7 dialysis started, and he was also taken off all opioids.  This combination brought Thomas’ Co2 level down and once again he is breathing better.

 

It’s easy to focus on the perceived defeat and get discouraged but we must remember sometimes a Setback is just a Set-up for a Step Up.

We Can Break Up If You Want

 

 

It was spring 2001 and Thomas had just stopped by my place to visit, after his doctor’s appointment. He said he had something to tell me. I listened as he said my kidneys are failing and I have to go on dialysis. He then added “We can break up if you want. I’ll understand.”  I hugged him and said why would I  break up with you. I just assumed kidney failure was a disease we’d defeat together. As we hugged I thought of Cookie Johnson and wondered if this is how she felt back in 1991 when Magic told her he was HIV positive. I wondered if she thought of leaving him. They had only been married 45 days when he publicly announced he was HIV positive. She was married. I was not. Thomas and I had only been dating for a year and a half. But my choice was the same. Stay and help Thomas through this.

 

Thomas told me he had a follow up appointment to discuss the two different types of dialysis. I told him I wanted to go with him. The next week we met with a nephrologist. A nephrologist is a medical doctor who specializes in kidney care and treating diseases of the kidneys. The term nephrologist comes from the Greek word “nephros”, which means kidney or renal and “ologist” refers to someone who studies. The nephrologist explained the difference between peritoneal dialysis and hemodialysis.

 

Thomas opted for peritoneal dialysis. He felt this would be less disruptive to his lifestyle. The nephrologist explained he’d need to have surgery to place a permanent soft tube in his lower abdomen. He went on to say in peritoneal dialysis, a specific solution is introduced through a permanent tube in the lower abdomen and then removed. This may either occur at regular intervals throughout the day, known as continuous ambulatory dialysis, or at night with the assistance of a machine, known as automated peritoneal dialysis. The nephrologist said once the tube was placed in the abdomen it would be a couple of weeks before it could be used.  Thomas was scheduled for surgery.

 

Thomas and I arrived early the day of surgery and talked and laughed as we waited for instructions. Then the doctor came in and said we are going to place the catheter for peritoneal dialysis, but since it can’t be used right away I’m going to also place a temporary catheter for immediate use because you need to start dialysis today. Thomas and I sat there with blank stares on our faces. The doctor continued. Your labs show us if you don’t start dialysis right away you will be dead in a couple of weeks, so we must place a temporary catheter so you can start hemodialysis today. Thomas began to cry. I began to console him. The doctor explained that hemodialysis would be very temporary and as soon as Thomas’ permanent tube for peritoneal dialysis was ready for use then hemodialysis would cease and the temporary catheter for hemodialysis would be removed. The doctor said I’ll let you think it over for a couple of minutes. I said Thomas you have to do this. Do what the doctors tell you so you can live. He shook his head yes.  Thomas had two catheters placed that day; one for hemodialysis and one for peritoneal dialysis.

 

This was 18 months into our dating relationship. A little over 3 years before we got married. We never broke up.

Another Birthday means your life journey is incomplete

 

 

Are you serious? Another infection? Yes, replied the Infectious Disease doctor.  Not the news we wanted to hear Friday morning, January 5. . .Thomas’ BIRTHDAY.  We envisioned a day filled with good news from the ICU doctors, the Nephrologist, and the Infectious Disease doctors.  There was more news.  Pneumonia too? Yes. Not the way one wants to start off their 46th year.  But, Thomas and I live by the motto: LIFE DOES NOT HAVE TO BE PERFECT TO BE WONDERFUL.

 

In spite of the circumstances.  In spite of the not so great news.  There is ALWAYS something to be thankful for.  We were grateful for the doctors uncovering the infection sooner rather than later, so treatment could begin immediately.  And that pneumonia, we were thankful for having a reason for Thomas’ difficulty breathing vs. wondering why.

 

Celebrating a birthday in ICU takes creativity.  There is only so much you can do in isolation.  Thomas may not have been able to go out in the world and celebrate with his friends, but certainly I could bring that love to him.  Aha. . .it came to me. I’d ask Thomas’ family, friends, and social media family to send him birthday greetings via video.  Thank you Holy Spirit!  Thomas received videos from people as far away as Germany and Washington, D.C. and as close as our community in West Los Angeles.  Some videos made Thomas cry.  Some made him laugh. All lifted his spirits. Thomas was deeply moved by the love shown to him.  He was so appreciative.  He continually thanked me and everybody for doing this for him. It was my pleasure. The best marriages in the world are two servants trying to out serve one another.

 

 

Because Thomas is still intubated he is unable to speak.  Sometimes trying to understand his non-verbal communication is like a game of charades.  I’m thankful when his hands don’t hurt because that’s when he can write what he wants to say.

 

Although it can be frustrating not understanding what my husband is saying, I make sure I maintain the right attitude.  I also make sure my words are reassuring, comforting and positive. I reassure him that I will figure out what he’s saying so I can help him. I comfort him by letting him know what he’s experiencing is temporary and the tube will be removed soon, and he will speak again. I do my best to make sure my words are positive rather than negative.

 

This is not an easy situation, but we remember the Lord is with us, and what’s true about God on the mountaintop is true in the valley:

 

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.~Jeremiah 29:11

 

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.~Isaiah 41:10

 

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”~Joshua 1:9

 

We also pray together. And we lean on positive friends and family.  Celebrating Thomas’ birthday in ICU was not perfect, but it was wonderful.