Update and a Plea

Hey all!

I wanted to give everyone an update on Jake and our family. A few days ago Jake turned 28, it’s weird think about him getting older. Time has been a tricky thing to track since he got sick and I often have to remind myself that life is moving on and we’re actually growing older, looking at my two-year-old SHOULD put time in perspective. This week also marks, nine months post heart transplant for Jake. Every day I’m constantly reminded of the person that gave my husband his life and I grow more thankful with every month that gets added to our marriage.

Healthwise Jake has been doing well since his bought with rejection. The rejection subsided fairly quickly with minimal damage done. The rejection, however, did prolong the course of steroids that Jake is still currently on. We are hoping with continued stability that we will finally be able to complete his steroid course within the next month. The side effects of the medication have been fairly minimal, with the exception of severe muscle cramping and insomnia. All of this is continuing to improve and Jake says he’d take this over being electronic again any day.

Physically Jake continues to progress, however, his brain injury still is fairly unpredictable on a day to day basis. Some days dressing and walking with his walker is a breeze, other days it is an impossible and frustrating task. We are hoping to see continued progress with therapy and as we come off many of the medications that are increasing tremors, shaking and cramping. We are currently balancing therapy for Jake, therapy for Eden, and an abundance of medical appointments; along with this, we are also preparing for our big move to North Carolina in May. Life is stressful, tiring but overall good.

In December you all helped us to raise enough money to stay in transplant housing through May, which we were blown away by and are extremely grateful for! Financially though, we are still really, really struggling. I hate having to continually do this but I have a plea, please, please help us if you can. We raised enough money to cover rent, which has already been paid to our landlord, but it’s been a cold winter here in Chicago and with the new year our regular bills have increased and our income has decreased substantially.

Jake is now on Medicare, which is a wonderful thing, however, as a result, our monthly income is now only $600 due to the deduction for Medicare from Jake’s disability check. Costs of Jake’s prescription drugs have nearly doubled, our heating bills have been outrageous, and my exemption status for food stamps has ended and as a result, we have lost a decent amount of food allowance. We’ve started receiving bills for Jake’s transplant, final rejections from insurance in regards to bills from Jake’s initial sickness, and collections/ garnishments notices for bills we haven’t been able to pay.

Right now, we are able to pay our essential bills inconsistently, medication, electricity, and heat have been our priorities. This means the daily hospital parking charges on our credit card, private student loan bills, and medical bills in collections are not getting paid. As of right now, we are close to $60,000 in unpaid medical debt that is all in collections and this is after insurance, appeals and financial aid packages! Now some of our bill collectors are seeking garnishment. The good thing is disability is exempt from garnishment and that is our only form of income.

However, in order to receive social services such as Medicaid and food stamps when we move to North Carolina, I will have to work, as they will now have a work requirement in order to receive healthcare. I’m excited about the prospect of working and being able to provide for my family, and finally move away from fundraising, however, we have income caps we have to stay under (about a maximum of $800 per month) and working hour minimums I will have to meet (minimum of 20 hours worked per week). Now, with the possibility of garnishment, it looks like I will be working to have my wages garnished while potentially paying for childcare and hopefully not grossing too much money where Jake and Eden would potentially lose their healthcare.

So, with this all being said, I need help. I need help to start getting my family out of this pit so that I can get a job and take care of my family. For now, I need money to feed my family and to keep our heat on, because it’s still winter in Chicago. We are moving into an apartment attached my parents home in North Carolina in May, which they are allowing us to live in rent-free. The only catch to the free apartment is right now, the bathroom is not accessible. My main priority for the home is to make adaptations to the bathroom so Jake can get to the toilet, if possible I would like to do some mild construction to the shower so that Jake can use that too. The adaptations will need to be made before the end of May because I can’t move Jake into an apartment with a toilet that he can’t even get to. I need to start paying some of these bills that are at the point of garnishment so that when I get a job, I’m not working for free and leaving Jake and Eden alone.

Here is what I need:

  • Food & Utility Bills: $800
  • Bathroom Remodel: $5,500
  • Medications & Copays: $2,000
  • Hospital Bills: $2,000
  • Gas & Parking: $500
  • Moving Expenses: $1,200

Total: $12,000

Please consider helping if you can and here are some ways you can donate.

Thank you for your constant prayers and love and support. Jake would not be alive if not for your generosity.

 

 

 

 

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Mending, Moving and Money

IMG_0027.jpgHey All! It’s nearly 5 months since Jake had his life saving heart transplant and almost a whole year since we moved to Chicago! Time is a complete blur. Jake is doing well, we’ve had a couple health complications as a result of the transplant but, everyone said the first year post transplant is a bit of a rollercoaster and luckily ours has been fairly mild compared to what we’ve endured in the past. I wanted to share an update of where we stand right now and our plans for the future.

Mending

Jake is healing well and definitely getting much stronger. Open heart surgery for anyone can knock you down for awhile; going into to open heart surgery on an infected mechanical heart pump, with a brain injury and a severe disability is a whole ‘nother ballgame. The transplant sent Jake back about a full year’s worth of physical therapy progress: it sucked, but we were prepared for it. He currently is attending outpatient therapy 3-4 times per week at the Shirley Ryan Ability Lab and has been making great strides…literally. Jake has moved from a platform walker to a standard walker and not only has improved the distance he can walk but also his endurance. He still cannot walk independently and uses his wheelchair a vast majority of the time, but from what I have seen, it wont always be like that. From a health standpoint Jake’s new heart has taken to his body better than expected. He has had one moderate bought with rejection and a slight stiffening in the relaxing of the new heart but he is healing in both areas at this time. His only major complaint right now is the steroids he is required to take as part of the first year of anti rejection medication regimen. They have made him swollen, moody, and unable to sleep; luckily this too will pass and he should be off of the steroids sometime between December-January. Eden and I have been mending too through this whole endeavor. Eden had two whole months without mom and dad at home and there is still some remanent separation anxiety from that. I, for the first time since early 2015, am able to sleep more than 4 hours a night. Between every 8 hour IVs, 4 times a day medications, a small baby and a husband on life support I never rested before Jake’s transplant, now I can sleep, not a lot but I can sleep without paralyzing fear. All in all we are all on the mend.

Moving

One year ago, we discovered that we would not be getting a transplant anytime soon in Missouri, we had been turned down from every transplant program we applied to and we got news that Jake was battling two pretty severe infections. We decided to take a BIG risk and decided to take a doctor at his word at the University of Chicago and we packed up and moved from Missouri to Chicago with no guarantee that he would actually be accepted for transplant. It was one of the best decisions we made in our lives and luckily it has worked out for us. We now have to make that big uprooting decision again. Jake’s transplant team here in Chicago requires that we stay one year post transplant to receive medical care, that takes us to May 2018; we then have the option to transfer transplant centers and move out of the Chicago area. Since the transplant has gone pretty well and Jake is staying healthy we have decided that we will be moving at the end of May. We are moving primarily for monetary reasons, Chicago is extremely expensive and frankly we have never been able to afford living here but, this city gave us an opportunity no other city was willing to give us. While grateful, we cant make it here much longer, so we will be moving again, this time to Raleigh, NC and transferring medical care to Duke. My dad last year got a job in Raleigh and bought a house with a basement apartment if we ever needed a place to live; with an uncertain future a free place to live with quality medical care is the best decision for our family. While we wont be moving until Spring, we will most likely begin working on plans to move within the next couple months because establishing a new transplant team will take many, many months. We are excited to have some stability for awhile while we transition out of medical uncertainty and hospital life.

Money

Now to the most nagging of our challenges in life: money. There is no nice way to say it, we are poor, debt ridden and drowning financially. If our finances were a year it would be 1929. As of right now, we will run out of money around Christmas, like I said Chicago is expensive and transplants are not cheap. So, here’s the awkward point where I say I need your help, I need your help to get my family through the next 7 months. Due Jake’s need for Medicaid and his inability to work we have an income cap of $1,500 per month and right now Jake’s disability brings in $795. With these restrictions on income and the amount of care Jake and Eden need at this time I cannot work, not because I don’t want to, mainly because I would have to make over $150,000 a year to even out the medical and caregiving costs that I have right now under income caps. So here is where we need help.

Rent in Chicago through May 2018: $10,000 (We have to pay in full by January 1st since we do not credit qualify)

Transplant Medication for the next 7 months: $1,000

Therapy and Doctor’s Copays: $4,000

Utilities for through May 2018: $2,000

Transportation to Therapy & Hospital Appointments: $1,500

Groceries Supplement for 7 months: $1,500 (we only receive $400 per month in foodstamps)

Medical/ Loan Payment Plan: $1,500

Moving costs in May: $1,000

Remodel of inaccessible bathroom in NC: $6,000 (needs to be done before we move)

Current Due Hospital Bills: $44,600 (we haven’t even gotten transplant or rehab bills yet)

Total: $73,100

While we have been BLOWN AWAY by fundraising efforts in the past I am not going to even to try to fundraise that amount, hospital bills have been piling up for over two years and they haven’t killed us yet. I do need to raise $40,000 by next summer in order to get us to a place were I can start repairing my credit so that I can begin looking for a job (I’ve only worked in finance and needed a clean-ish credit report in order to be hired for every position I’ve held). For now though, I need $10,000 to get my rent, medications & utilities paid to ensure that we can stay in Chicago to get Jake the medical care he needs in Chicago until we can move and I need to raise it before Christmas.

So, please pray for us as we embark on this next part of our journey. Pray that Jake’s rejection remains at bay, pray that Eden’s terrible twos are over soon (haha), pray that we don’t lose our housing and if you can give, please give.

We have a few ways you can donate:

Gofundme: https://www.gofundme.com/aheartforjake

Venmo: @aligonzo

Mail: 1258 S Blue Island Ave Unit 101, Chicago, IL 60608

Thank you for loving my family and helping us through every trial.

We love you all. 

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

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

Two Months of Oblivion

Oblivion is a heavy word, but what I’m writing about today is a heavy topic. I rarely talk about the two months I was in a coma, and you might understand why after you read this post.

For those who are not aware of my whole story, after I was admitted to the University Hospital – located at the University of Missouri – I was placed in a medically induced coma for roughly two months. The period of time before the coma began is not super clear to me. The memories of being there are flashes of images to me and even those memories are fuzzy at best. Ali can go into great detail of each day, every incident, and all the health care professionals that treated me. I simply do not recall anything past a certain point.

No memories. No consciousness. Just oblivion.

The two months of oblivion I experienced were torturous, for those who were by my side and also for me. Everyone who spent time at Barnes Jewish Hospital (the hospital I was flown to for immediate medical care) witnessed horrifying things occur. People saw my heart stop over 75 times, five open-heart surgeries, three ECMO placements, two fist-sized leg wounds created, a 108 degree fever for 24 hours, and countless other minor health care concerns. While friends and family were seeing all this happen right in front of them, they could not see the hallucinations that continuously horrified me.They could see the physical pain, but they would have no idea the emotional and psychological pain I was experiencing.

The best way I can explain these hallucinations doesn’t convey the deep toll it took on me. The vivid images that I would be hallucinating include rape, murder, executions, human trafficking, torture, and addiction. I know how that could sound, but there’s an added element that I have not told you.This element was confusing and devastating because I couldn’t intervene in what I was seeing.

I was paralyzed.

This would make sense later, but whenever these hallucinations occurred without restraint or possibility of ending. I was an active observer in each hallucination without the physical capability to end the horrifying event I was witnessing. Only when the oblivion began fading into reality did I start to puzzle together what was happening. Well, I wish it was that simple.

The beginning of consciousness is not at all like what you see in any television show or movie. I did not just open my eyes and it all became clear. I certainly did not see all my friends and family standing around me, and at that exact moment we began talk about how much we loved each other.

My experience of waking up was literally the exact opposite of those portrayals. It took a month from my initial moments of consciousness to being fully aware of my environment. I could only recognize my wife, Ali, and the occasional family member at first. It took weeks to be able to recognize groups of people at a time, which was overwhelming for me and I’m sure troubling for others. The most emotional part of gaining consciousness was my inability to form the simplest words. I couldn’t tell my wife that I loved her because I literally could not remember how to speak.

While this is occurring there were a multitude of other challenges that I was experiencing. On top of realizing I couldn’t speak, I realized I was unable to eat, move, or even breathe on my own. I woke up with a feeding tube inserted in my right nostril, a trachea in my neck attached to a ventilator, I had staples in my chest (which I didn’t understand), and two wound vacuums (wound vacs) on both inner thighs. Also, unknown to anyone, I was continuing to have hallucinations, and this time the hallucinations were incorporating those around me. To say the least, this is not the image you see in any Hollywood production.

The reality of this month was not a touching scene from a mainstream film. Regaining consciousness was messy, horrifying, and confusing. During this month, as I mentioned before, I started incorporating real-life individuals into my hallucinations, so this made it increasingly difficult to distinguish between oblivion and reality. My nurse was trying to kill me, family members were involved in terrorism, friends were trying to kidnap me, and I even choked my mom because of an unknown perceived threat. Only at the end of the month was I able to understand that these horrifying visions were due to the medicine they were administering.

Adding more fuel to the fire, the inability to sleep lasted an entire week. This was due to the hallucinations, but it was also a result of the blood dripping down my airway from my tracheotomy. I legitimately would choke on my own blood every thirty minutes or so. A nurse would have to suction the blood out, causing violent coughs and chest pain. To this day, this was the worst part of my recovery. That should give you a picture of how awful this was. Now, during this month there were a couple things that gave comfort, reassurance, and even joy.

The first comfort was recognizing my wife, Ali. Seeing her in my vicinity relieved most anxiety that was experienced, and any time without her would be just a waiting game until she came back. This was exhausting for her since she was seven months pregnant, and it was painful because she witnessed her husband go through surgery after surgery without much hope. The odds of survival for every surgery were slim, and now I’m asking her to be by my side all day. She didn’t have to spend eighteen or twenty hours every day with me, but she did. She was always there. She loved sacrificially to a level many people can’t imagine or handle. The other comfort I found occurred when she played a song for me. I had heard this song plenty of times, but the lyrics hit me in a divinely profound way.

The lyrics come from a song called “How Deep” by King’s Kaleidoscope:

Behold the Man upon a cross,
My sin upon his shoulders
Ashamed I hear my mocking voice,
Call out among the scoffers

It was my sin that held him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished

In the fog of consciousness and anxiety, I felt comfort that I can only describe as coming from God. I experienced a deeper understanding of my sin being placed on Christ on the cross, and how at one time I mocked him and fought against His love. After the first section, the second section was truly the comfort that I needed. It was my sin that held him on the cross, and He went all the way to death to see that I was redeemed from and forgiven of my sin. Even as I lay there in pain and suffering I somehow understood and related to His suffering, and His suffering was for me in this moment. Even if I didn’t see the purpose of my pain, I knew that He personally understood my suffering; He knows.

The last line of the verse was the pinnacle of comfort. He died so that I might live. As I lay there immensely blessed to be alive. Gratefulness overflowed for simply being alive. He gives life and sustains life. Gratefulness was only experienced in shallow ways prior, but this moment gave a new zeal and gratefulness for life. It is finished. What a comfort it is to know that His death on the cross completes the work He was destined to do! His perfect life, sacrificial death on the cross, and triumphant resurrection from death was finished.

My two months of oblivion will hopefully continue to lead me to years of abundant life.

“But God proves his own love for us in that while we were still sinners, Christ died for us. How much more then, since we have now been declared righteous by his blood, will we be saved through him from wrath. For if, while we were enemies, we were reconciled to God through the death of his Son, then how much more, having been reconciled, will we be saved by his life. And not only that, but we also rejoice in God through our Lord Jesus Christ, through whom we have now received this reconciliation.”
Romans 5:8-11

Jacob Luis Gonzales

Spoken & Written Words Matter

Screen Shot 2017-08-23 at 11.38.18 AMWords matter. But is the spoken word more or less important than the written word?

I used to love speaking in front of people, and I used to think I was pretty good at it. Whether that’s true or not is not the focus, but my attitude is important. When I think of words impacting others, I used to think that spoken words were more impactful than the words written down.

Don’t get me wrong, I loved reading. I used to love reading books, articles, newspapers, and I even loved to read outlines of sermons. The collection of books is getting too big even for my liking. But at the end of the day, I never valued written word the same as spoken word. If I am even more transparent, I took for granted the spoken word as something to be expected.

Don’t we all take for granted how we audibly communicate with each other? It’s doubtful that you have recently taken time to be thankful for the ability to express yourself through spoken words. Gratefulness only comes when there is realization of blessings experienced, and rarely do people realize the blessing go saying “I love you.”

Think about how powerful words are in life. You can express love, hate, fear, sadness, joy, trust, faith, etc. The Bible speaks of the importance of words and the necessity of having control of your words. The spoken word can build others up or tear them down. They are so important that we listen to music, podcasts, radio, sermons, classes, and discussion panels.

But what happens if you couldn’t speak again?

Well, that happened to me. One day I was able to freely speak and when I woke up I was unable to say even one word. I couldn’t tell my wife that I loved her. Something so simple became impossible. The impossible felt so defeating and paralyzing, and each attempt to squeeze a single word compounded the emotional turmoil. Seeing loved ones hunched over my hospital bed and trying to comfort me was beautiful and torturous. I felt both peace and frustration because I understood everything and had no way of reciprocating the love that was being spoken to me.

Ever since then, I have been a steady road of recovery. I have gone from not being able to speak a word to being near clear intelligibility. Of course, this journey is not over and will be a lifetime of slow improvement, but in two years I have improved more than doctors ever thought possible. I’m still in therapy today, but hopefully one day I will have the confidence to teach again.

For now, what do I do to express myself?

Write. Here on this blog.

Back to my ramblings about the importance of the written word…

For now, the best method that I have to communicate with all of you is this blog. The importance of the written word is chiefly shown in the Bible, God’s word. God’s word includes His spoken words as well, and both His spoken and written words are of the same value and have the same significance. The example of God’s spoken and written words being of equal importance has shown me that this blog can be used for good things.

Whether someone says or writes the following sentence, hopefully it will be used to encourage and motivate:

God loves you.

Jacob Luis Gonzales

Learning Contentment

1

Satisfaction is a simple yet profound experience. There is nothing better than being satisfied, but most of us struggle to find meaningful satisfaction.

I would have to say that ever since I’ve gotten sick I have struggled with satisfaction.

Looking at my calendar today, My appointments would make it appear that I try to stay busy and focused on recovery, but most days I fail to meet any expectations I set for myself. I usually fail to do eighty percent of my to do list. Why is that?

After some thought, I believe I have one driving agent: discontent.

To make this very clear, I feel like I have to say a couple things to anyone reading this. Discontent is the real issue and laziness is my response. Laziness is the outward expression of the discontent I feel inwardly. I am slow and hesitant to share my discontent.

There’s a big part of me that doesn’t want anyone to know this struggle. Most of my hesitation comes from my focus on disappointing people who are so encouraged by what God has done in my life. I fear that sharing my battle with discontent will discourage those who seem more grateful then I sometimes feel. Not to say that I’m not grateful or encouraged, but I definitely don’t experience joy as much as one would expect.

My dissatisfaction (discontent) with life as I live it now comes from the the long-lasting effects of my health issues. I struggle with being discontent in my inability to stand and walk independently. I struggle with being discontent in my vocal abilities – going from teaching and preaching to fumbling over certain letters. I struggle with being discontent in my physical strength. I struggle with being discontent in handwriting and typing. Those are general examples, but I felt it would be good for me to explicitly state for transparency sake.

I was reading the book of Philippians yesterday, and I just felt this heavy weight of conviction. I knew I was reading something for exactly what I was currently experiencing.

“I rejoiced in the Lord greatly because once again you renewed your care for me. You were, in fact, concerned about me but lacked the opportunity to show it. I don’t say this out of need, for I have learned to be content in whatever circumstances I find myself. I know both how to make do with little, and I know how to make do with a lot. In any and all circumstances I have learned the secret of being content — whether well fed or hungry, whether in abundance or in need.”

Philippians 4:10-12 (CSB)

I underlined the word “learned” for a very specific reason. Learning something requires experience and a deep understanding, but those verses don’t say what sustains his ability to rejoice in the midst of plenty or in need. That’s sort of the problem, isn’t it? Most of us, me very much included, search for the answer for the key to contentment (satisfaction).

Just read the next verse.

“I am able to do all things through him who strengthens me.”

Philippians 4:13 (CSB)

Okay, before you dismiss this verse because the cliche this verse has become, think about the beautiful context. Paul wrote this because of the suffering he was experiencing (torture, beatings, shipwrecks, long-lasting health issues, etc). He is not saying that he can do anything just because he believes in Christ. He is stating that in suffering and times of peace he has learned contentment. But, how the heck do you learn contentment?

Jesus is the answer.

If I really want to be content I will reflect on Christ and learn from Him. He is the perfect example of enduring suffering while being content with His purpose. He suffered throughout His life, including the heinousness of the cross, and yet the Bible says He willingly submitted Himself (contentment in the Father’s plan).

Philippians 4:13 says “through Him,” so all those things I am struggling to be satisfied with can only be satisfied with faith in Christ and His plan for me.

Now… all that said… I doubt that at times. I don’t always actively buy into the truth of that verse. I am not perfect, so there are times when I am discontent even as I acknowledge the Bible is truth. There have been days, weeks, and months over the last two years where I have ignored this struggle. I have put on a good face and said things are going well, when the truth is this: I am dissatisfied.

How am I going to learn contentment? Being in the word of God, prayer, journaling, being open with friends, family, and my church family. Also, I think I’m going to look into counseling, which I hate saying publicly but I think its important to be open right now.

If you want to be involved, these are a few things to consider trying: prayer, talking with me about non-therapy things (any medium is fine), sending sermons/Scripture/music, etc. If you want to be involved in this journey towards contentment, it would be greatly appreciated.

I have not experienced contentment as of late, but hopefully God will guide me towards a deeper faith and understanding the Gospel of Jesus.

Jacob Luis Gonzales

No Rejection! What Next?

Hey all!

We just got the pathology report from Jake’s second biopsy post transplant and once again there are no signs of rejection. His white counts are coming down, neuro report is clear for any negative activity, blood clots are superficial and he is starting to feel better. At this point the hospital talks discharge because he is SO STABLE! So, what next?

To put it in the simplest terms: A LOT!

Discharge? Does that mean going home? Not for Jake. Because Jake is in a wheelchair, he usually uses his arms a ton to get around and be independent in most daily tasks. However after a major heart surgery there are two rules: don’t push and don’t pull with your arms. 🙄 Jake is back to square one physically: total assistance with every task for at least 4 more weeks. As a result we will be going to an in patient rehabilitation center right here in Chicago.

This afternoon we filed transfer paperwork with the social worker to the Rehabilitation Institute of Chicago (The Shirley Ryan Ability Lab). This is the number one rehab center in the WORLD, 26 years and counting. The newly remodeled center just opened in March of 2017 and it’s the highest quality I’ve ever seen! See the photos below!

If approved we will be at the center for at least five weeks. So looking at coming home mid July. We however have a ton to do before we get home. Not just get Jake’s strength back but also a lot of remodel back at the apartment. Jake is now super immunocomprimised, and we have mold issues in one of our bathrooms, and ten year old carpet and we never updated the shower to make it accessible for Jake because when he was electronic he didn’t take showers.

So now comes my least favorite part of my life since Jake got sick. We need money, and we need it for two reasons: 1. Updates and sanitizing our apartment so it’s safe for Jake to come home & 2. Pay for six more months of rent and bills in Chicago. We unfortunately did not get insurance approval for transplant until March when we were expecting approval in January. So for that reason we only fundraisers money through December 2017. But now the doctors here at University of Chicago want us to stay until Jake’s one year transplant mark in May of 2018. So here is the breakdown of expenses.

Mold Removal: Should be paid by landlord

Updates to bathroom & Shower: $400

Carpet Replacement (Yup we have to foot this bill): $2,000

Professional Cleaning of Furniture: $300

Cleaning of Air ducts and sanitizing of washer & dryer: $300

Professional Sanitizing of Apartment: $300

Six months more rent: $12,000

Six months more bills: $5,000

Transplant Medications until Medicare and Supplemental insurance kick in: $5,000

Hospitalization for Transplant and Rehab: $3,000

Follow up visits and biopsies: $2,000

Current Medical Debt Outstanding: $37,500

If you want to give you can do so here:

https://www.gofundme.com/aheartforjake

Or mail to:

Jake Gonzales

1258 S Blue Island Ave Unit 101

Chicago, IL 60608

If you liked to donate more tangibly we have an amazon wishlist that you can find below. It’s mainly cleaning supplies, bathroom adaptations and spf stuff (as Jake is at very high risk now for skin cancer).

https://www.amazon.com/registry/wishlist/1XWFJ88KIHNCE/ref=cm_sw_r_oth_ip_wl_o_PNimzbYVVGH0Q

Thank you all so much for the prayers and love!

The Waiting Room

by: Jacob Luis Gonzales

Feel the chill
hear the silence
see the devastation
in this waiting room

Nothing will fix it
something uncontrollable
possibly ending
impossibly empathizing

Who can help you
what can they say
when is the right time
where can I find peace?

Hope seems lost here
doubt grows larger
joy escapes with time
anger grows towards all

Crying for my friend
knowing my love
hearing his voice
wanting one more chance

He loves me so much
I doubt my chance to respond
they all fail to comfort
she might never know her dad

Surgeons unaware of the cause
family provides more headaches
friends say nice words in vain
husband unable to express his love

God seems angry at me
I feel like its punishment
He has proven His love before
I just don’t feel it

Please save my friend and husband
Thank you for bringing him back
Please help me feel Your love
Thank you for our family of three.