Not the Life You Wanted

We had a plan.

After years of discussion, prayer, and receiving guidance from friends and elders at our church, Ali and I finally agreed on the future of our family. The exact moment became an encouraging snapshot after years of discouragement and confusion. I had just picked up Ali from work and we were driving down Stadium Boulevard, when we lived in Columbia, Missouri. Both of us were in excited about each part of the plan for the future.

We were going to move to Los Angeles, California by June 2016 to join a new church in Long Beach. The lead pastor and I had been in discussions about starting a one-year paid internship, and after the internship, there were plans to start another church in a neighboring city. We chose to move to the city of Carson, which we both knew would be the most ideal to raise a family and start a new church. We had this amazing plan, and the best part was that we agreed and were enthusiastic on every major point.

We had a plan. We had a life we wanted.

Less than a month after this perfect snapshot, I went into heart failure. Due to this medical crisis, I was in a two-month coma, received a mechanical heart pump (LVAD) to assist “regular” heart function, and suffered a traumatic brain injury. I had to relearn to speak, move, swallow, and breathe on my own. On top of that, I could not stand or walk as a result of my TBI. Suffice it to say, our plan changed.

On the day I went into heart failure, my plan became futile. The expectations I had for myself were not simply altered, my expectations were destroyed and replaced with a dark cloud of vagueness. The life I wanted and had planned down to every last detail was snatched away. To be honest, I was disappointed.

We all have expectations for our lives. When our expectations and plans do not come to fruition, how do you respond?

What did you expect?

You have expectations. These expectations could be small things, such as plans you have for the day or to get your to-do list completed. You probably have larger, long-term expectations, such as meeting your future spouse, how many children you want, your dream job, how much money you plan to make at that job, and where you want to live while all other aspects come into alignment. Having desires is not inherently wrong, but what if those expectations never materialize?

We all deeply – and secretly – desire to be in control. Again, this is not limited to small or large aspects; we want to control all things, at all times. I’m exactly the same way. I have struggled with control for so long that I can not tell you a time I didn’t. I only started fighting against that instinct as a junior in college. A couple years later I heard a song that perfectly captures how much control has been a historical problem.

Yo What’s a king to a God?
Nothing but a king
A king that God put in that position just to reign
And never should the king test the God from which it came
Or the king gone need a prophet to come explain a dream

– Eshon Burgundy “Control Issues

The reference in that song is from Daniel 4, and control is not seen as a thing to be grasped. The King, Nebuchadnezzar, had a dream that Daniel interpreted as God’s judgment of Nebuchadnezzar. God promised to remove Nebuchadnezzar from power, but he responded by proclaiming God wouldn’t do so because Nebuchadnezzar had immense power and glory. God responded to this bold proclamation of control by declaring that He would take away Nebuchadnezzar’s kingship. He also made Nebuchadnezzar act like an animal to demonstrate to the world who was really in control.

God Plans Well

When life is not how you expect you probably feel the weight of uncertainty, and when all seems out of control you might feel angry. Most people attempt to force all their plans to fit into the reality they find themselves in. I’m willing to bet there’s an aspect of your life that you have planned and if that doesn’t manifest there will be overwhelming panic. Disappointment would have a huge door to fill your head with doubt and resentment. But, whose plan is guaranteed to bring joy: your plan or God’s plan?

If you’re at all curious, God’s plan might be exactly what you have in mind but it might not. If our plans do not come to fruition and God’s plan delivers the exact opposite of our expectations, we have the opportunity to hold onto our plan or surrender our plans to our all-knowing Creator. Embracing His plan was hard for me, and you might also struggle to release your squeeze on your misguided notion of control.

MaryLynn Johnson, writer and blogger of “Letting Go of Why,” wrote this:

He desires that we surrender our own plans to him so that we can be ready, willing, and available to go wherever he leads — regardless of whether it’s what we pictured or planned for ourselves. It is never easy to loosen our grip on our own desires, but it is the first step to experiencing the joy of embracing God’s will for us.

To Trust or To Doubt

A specific section from the book Matthew always comes to mind when contemplating how we respond to trials or unmet life expectations:

“The rain fell, the rivers rose, the winds blew and pounded that house, and it collapsed. It collapsed with a great crash.” The rain fell, the rivers rose, and the winds blew and pounded that house. Yet it didn’t collapse, because its foundation was on the rock. But everyone who hears these words of mine and doesn’t act on them will be like a foolish man who built his house on the sand. “Therefore, everyone who hears these words of mine and acts on them will be like a wise man who built his house on the rock.”
Matthew 7:24-27 

Before I go further, read that passage again. Notice something: the storm comes and hits both houses, not one or the other. Trials and suffering come for all of us. Not IF but WHEN the storm hits. The difference is not whether or not we suffer; the difference is what your foundation is when it comes.

Jesus states that if you doubt God and His plan, you have a foundation built on the sand, unbelief and doubt. The sand foundation is destroyed when the storm hits because of a lack of faith, and this doubt can also be seen as trusting in your plan more than whatever God has planned.

Jesus proclaims that whoever trusts in Him and His plan has built his life on “the rock.” Jesus is The Rock, so if you trust in Him and His sovereign plan for your life you are guaranteed to stand strong. Joy is solely experienced if you weather the storm with trust and faith in God.

This might not be the life you wanted, but God has made it abundantly clear that He wants this life for you.

Do you trust God to have a better plan? If so, you can expect this: you and your life will be better off than anything you could have come with.

Jacob Luis Gonzales

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Life Plugged In

Yes, that is an x-ray of my actual chest. And yes, you are indeed seeing a foreign object on the right side of the image. That foreign object affected life in almost every way possible.

On July 18, 2015, a Left Ventricular Device (LVAD) was surgically placed to assist the heart pump blood, which a weakened heart – in heart failure – cannot accomplish on its own. An LVAD is a mechanical pump attached to the left side of the heart and the aorta, the main artery. The LVAD helps the heart pump blood to the body due to the left ventricle’s decreased efficiency.

An LVAD is surgically placed with two resolutions in mind: death or future heart transplant. The “bridge to destination” option consists of temporary relief of heart failure symptoms but eventually will end with the patient’s death. The other option is called “bridge to transplant.” This obviously intends to be temporary until the patient is cleared for surgery and receives a new heart after time spent on the transplant list.

It also should be noted that the LVAD is powered electronically, so it requires an electrical outlet or short-term batteries. The two options, for all twenty-four hours, required being plugged in.

As the sedation wore off, a health care professional came into the hospital room with the hope of educating my wife and I about the newly-placed LVAD. Her name was Denise and she attempted to educate for the purpose of home care.Her multiple attempts fell short of success due to the exhaustion I experienced. I kept falling asleep during her educational discussions, and, besides exhaustion, there was no concept of what the heck an LVAD was.

As consciousness grew, there were a few things that became overt. Clearly, there was a chord coming out of my stomach (driveline), sleep was only possible in an upright position, and I was plugged into the wall. The driveline quickly became a small inconvenience, and once sleep became regular again, having to sit upright tube comfortable was another dismissed consequence of my hospitalization. But, being plugged into the wall created lasting issues.

All of life was plugged in. The unforeseen consequences of being plugged in at all times meant that three areas of life were unplugged. Three distinct aspects of life were virtually unplugged and exposed.

Pride Unplugged

Whenever the transition home was complete, I was forced to confess the necessity of other people’s assistance with my overall hygiene. This area of life occurs throughout your life without thinking, and it’s probably because you do it on your own with ease. Hygiene usually does not require too much introspection, and that commonly only arises when there is required aid from another.

Getting dressed and shaving are two simple examples. Once I was incapable of doing these two independently, pride emerged with a vengeance. Believing I did not need anyone’s help brought out the pride in my heart. Feeling the need to fight to show everyone that they were not needed, displayed a too high view of self and a low view of others.

But, the biggest shot to my pride was my inability to shower. This might need to be explained. Since an LVAD is an electronic machine, the external battery could never get wet. So, getting into a hot and relaxing shower completely vanished, and the only option for bathing became a sponge bath. A sponge bath can be done independently, but with the electronic equipment attached it is recommended to have help.

Pride can be described in many ways, but I believe the best definition is this: a deep feeling of pleasure or satisfaction in accomplishments; thinking of themselves as greater, better, and/or as all-sufficient. Before an LVAD was placed, there was plenty unseen pride in my life. Even though it appeared to be holy ambition, hidden beneath those good deeds was the ugly truth that I built satisfaction in myself and my “accomplishments.”

The truth burst forth through being served by others: I am weak and need God’s grace.

“But he said to me,“My grace is sufficient for you, for my power is perfected in weakness.” Therefore, I will most gladly boast all the more about my weaknesses, so that Christ’s power may reside in me.”2 Corinthians 12:9

Rest Unplugged

I have always had body image issues, so the physical changes were subtlety impacted me. The physical changes can discourage a person, and slowly but surely this occurred over time. All of the physical changes were due to the equipment associated with the LVAD, and these changes created self-consciousness, anxiety, and worry.

The equipment that every LVAD patient must deal with force visible physical changes. The HeartMate II, the model of LVAD that was surgically placed, requires two individual batteries that each weighed about ten pounds, and every model of LVAD has a half-inch driveline that is attached to the external controller. The equipment, hanging on my sides and exiting out of the stomach, can hurt your image of yourself. Self-consciousness and anxiety rushed into my heart, and I restlessly worried about my appearance.

An unseen effect of the LVAD was its pressure of my lungs and ribs. When making room for the LVAD in your chest, the surgeons are forced to create a “pump pocket.” One of the major side effects of this rearrangement of your major organs is that the LVAD can lay on your lung. So, sleep was elusive and painful unless the head of the bed angled at thirty degrees. Rest was inconsistent and a struggle. It sucked.

Rest cannot be simply defined by sleep. Rest can be defined in two ways: the freedom from anxiety and worry; stoppage of movement and activity for relaxation of body and mind. Rest could not be grasped in either avenue. Anxiety and worry haunted me and it was nearly impossible to experience relaxation through inconsistent sleeping patterns.

For almost two years rest could not be grasped, so I felt constantly discouraged and worn down.

“Come to me, all of you who are weary and burdened, and I will give you rest. Take up my yoke and learn from me, because I am lowly and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”Matthew 11:28-30

Community Unplugged

After the hospitalization and rehabilitation stints, there was overwhelming support from friends, family, and our local church. Every weekday night there were different people spending time with us, but, as expected, a gradual fade occurred. Community went from a constant to almost non-existent. Contributing factors were wide ranging, but community became an elusive reality.

The main rule for LVAD patients requires the patient tone within a two-hour drive from an LVAD certified hospital, so most people do not travel far or to new places. The inability to travel restricts possible vacations or long trips to see friends and family. The common perspective is that it’s safest to stay home just in case there is an emergency. On top of long distance restrictions, short distance restrictions are limited to the external battery life. The two external batteries only have power for twelve hours, which does not last as long as it sounds. Long and short distance restrictions limit any chance for quality community.

Quality community exists when quality time and quality relationships come together. If your time or access is limited for any reason, quality community suffers and it can slowly dissolve. If community dissolves, for any reason, it becomes a mere concept and loneliness develops into reality. Loneliness emerged as an everyday reality, but as of late community has resurfaced as an essential and place of true joy.

Community is subjectively defined, but my specific outlook is centered on the community in a local church. Community strives to see the needs of each other while loving and serving the world. Community dissolved in my life and I felt a disconnect over time. If you unplug community from life you will eventually slip into apathy and loneliness.

Unplug community and you become a lone wolf with no clear purpose.

Let us consider how to stir up one another to love and good works, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day approaching.Hebrews 10:24-25

Perfect Connection

With all that said, where can we find perfect humility, rest, and community? The world has nothing to offer because everything in this world will fail us. All of us are imperfect and can not strive hard enough to acquire humility, rest, and community. We have to look to something else… or someone else.

Jesus is the only solution for our anxiety, restlessness, and isolationism. He was perfectly humble (Phil. 2:7, 2 Cor. 8:9, Heb. 4:15, Mt. 20:28), offers true rest (Ex. 33:14, Mt. 11:28-29), and is perfect community within Himself (Gen. 1:26, Mt. 28:16-20, Lk. 3:22, 1 Pet 1:2). He is the source of all things, so he is the True power source for living a full and abundant life.

We don’t need to live life unplugged. We can live life plugged in.

Jacob Luis Gonzales

In the Wake of Trauma

An injury that is not visible to the naked eye effects approximately two percent of the U.S. population, and, in my opinion, is fairly often neglected when referring to the disabled community. I suffered this during my first hospitalization and no one had any clue it occurred until I regained consciousness.

A Traumatic Brain Injury (TBI) is not observed due to its clear internal damage, but they are detected through their effects. A TBI transpires when an external force or internal event damages a specific portion of the brain, and the effects of TBIs are wide-ranging and every single person’s injury manifests in unique ways. External forces take place through blunt force trauma, such as falls, collisions, vehicle accidents, assaults, etc. Internal events include chemical damage, infections, tumors, strokes, and if there is a loss of oxygen to the brain.

During the chaotic and stressful hospitalization at Barnes Jewish Hospital, my brain lost oxygen for an unknown period of time. The moment – or time period – there was a loss of oxygen has never been fully understood, but it could have been anywhere between five surgeries on bypass, being on an extracorporeal membrane oxygenation (ECMO) multiple times, having the same breathing tube for two months, having a 108 degree fever, and being revived over seventy-five times. The doctors could not come to a consensus of its occurrence, but they all are unified in my diagnosis: a cerebellar brain injury.

The month following my initial moments of consciousness were a mystery to every health care professional. My wife would later state that she had no idea what was wrong with me, and the doctors commented that there were no clear signs of what was happening. Since traumatic brain injuries commonly do not get diagnosed until after consciousness, the staff would need time to properly diagnose the injury. That month revealed my symptoms, which would later assist doctors diagnose me with a hypoxic brain injury.

A partial loss oxygen to the cerebellum creates a hypoxic brain injury. The cerebellum is located right above the brain stem, and it controls speech, balance, fine and gross motor skills. This particular section of the brain is necessary for reactionary tasks, so it can go unnoticed and underappreciated.

The common symptoms of a hypoxic brain injury are tremors, staggered walking, decreased muscle strength, slurred speech, and loss/worsened balance. Immediately I knew all of those side effects applied but the doctors needed time to verify. It turns out that the coma forced muscle atrophy, which worsened some of the side effects of the brain injury.

Lifting a hand sent the entire arm into severe tremors, handwriting became futile, and feeding myself turned out to be dangerous. There have been posts about my inability to speak, but there was no mention of how communication occurred. With tremors persisting, there was a number system developed to communicate common needs (pain, bathroom, suction the tracheotomy, and ice). As far as standing and overall movement, it was obvious that my leg muscles were to weak to stand on my own. When I was assisted by two physical therapists to stand up, it was clear that any shred of balance was lost.

The time spent in the hospital focused on showing any improvements in those areas but progress was slow and steady. The two months at The Rehabilitation Institute of St. Louis (TRISL) helped improve every side effect of the brain injury. As we transitioned home, out-patient rehab continued the progress from TRISL, and there was short rehab was facilitated through Mizzou’s Department of Physical Therapy. And finally, after my heart triansplant was successfully completed, there was period of time spent at the Shirley Ryan AbilityLab.  So, it’s hopefully clear that TBIs require plenty of time of treatment.

As important as quality rehab is in recovery, I believe that was goes unnoticed is the emotional toll a brain injury creates.

Coping with the multitude of physical side effects has been difficult, but handling the emotional side effects has proven to be equally challenging. The emotional side effects were not immediate but over time they grew. The emotional side effects came through two specific avenues.

1. I felt worthless.

I have struggled for the past two years with comparing the man I was before all of this and the man that I am today. I sometimes become angry that I can’t do the things that I loved anymore. I usually list off what I feel like was taken away from me: teaching, preaching, working, singing, writing, sports, etc.

Whenever this list forms in me head, which can happen instantly by simple visual or audible cues, I immediately feel worthless and useless. Or at the best moments I feel simply less useful.

2. I withdrew from people.

It became easier to stay away or create distance from people. Repeating my story turned into a task and – to be honest – it became annoying. Yes, rehab is important for treating the brain injury, but having an emotional support system has become vital in my future growth. Discussing my story has become routine, but my story of sickness and TBI do not define the entirety of life today.

But, withdrawal became easy at times because some people had a time being involved in life after the TBI. Feelings of resentment developed into apathy. Withdrawal developed easily because of the withdrawal I perceived from others.

Sharing those two emotional side effects of life after a TBI are not directed at any specific person. Sharing that is merely meant to describe how others might not see how individuals with TBIs might silently suffering around you. The physical side effects are easy to spot, but it must take love for the person to seek out the emotional side effects. Everybody, including me, has a duty to love those with TBIs with both physical and emotional suffering.

For anyone reading this who might be struggling with your worth because of a TBI or not, I hope you take this to heart:

“But he said to me,“My grace is sufficient for you, for my power is perfected in weakness.” Therefore, I will most gladly boast all the more about my weaknesses, so that Christ’s power may reside in me. So I take pleasure in weaknesses, insults, hardships, persecutions, and in difficulties, for the sake of Christ. For when I am weak, then I am strong.”

2 Corinthians 12:9-10

Jacob Luis Gonzales