THE MONSTER WITHIN (A STORY OF SELF-DISCOVERY AMID ADVERSITY)

“I take you to be my husband/wife, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish until death do us part.”

This was the solemn vow that my husband, Roel, and I exchanged during our wedding day … the vow that has bound us together for many years thereafter … and the vow that served as our lifeline when, subsequently, our world would crumble and the very foundation of our marriage would be put to a test.

It was around this time last year when we learned that Roel had Stage 5 Chronic Kidney Disease (CKD), a complication caused by years of living with diabetes. CKD is a progressive and irreversible renal dysfunction that could be fatal if left untreated. At that point, only two options were left open for us –a lifetime of dialysis or a kidney transplantation.

Initially, we were both in a state of shock and denial. After all, he was not experiencing any of the symptoms associated with kidney disease. It was only much later that we understood that, in its early stages, CKD could be virtually silent. Only the trained and experienced eye of a professional could detect an abnormality upon a cursory physical examination. In Roel’s case, what set off the alarm bells for his nephrologist, who had not seen Roel for quite some time, was his grayish complexion.

After all the diagnostic test results confirmed our worst fear, Roel promptly and fearlessly accepted his fate. He methodically studied the situation, analyzed the pros and cons of our two options, and listened to his doctor’s every instruction – all while maintaining a brave front for me and the kids, dealing with his demons and fears in private, and keeping up with the pressures and stress from his work. I never saw him buckle under the hefty weight of all those burdens.

Me? I was wallowing in alternate states of pain, guilt, anger and depression.

PAIN. I was hurting for him. At 40, he was supposed to be in the prime of life, not some perennially exhausted and emotionally drained dialysis patient or kidney recipient.

GUILT. I was suffering from bouts of guilt. If only I’d watched his diet more carefully or pushed him harder to hit the gym or forced him to see his doctors regularly, maybe, he would not have been in that wretched position.

ANGER. I was giving in to anger attacks and emotional outbursts. I would often catch myself talking to God and questioning His “will”. On a few occasions, I even reached the point of bargaining with Him.

DEPRESSION. I was succumbing to depression and hopelessness. Faced with the uncertainty of our situation, I feared for the future of our family, especially for the wellbeing of our three children. Not even work or household chores could divert my attention from the worries that continued to press down on me. I totally lost control of my emotions. I would often find myself weeping and sobbing in the unlikeliest of places – at the church, in the office, in the car, at the supermarket, in the dining table, at the restaurant. Even my dreams would be invaded by sorrow, grief and anguish and would soon turn to nightmares! During that particular point, I felt like an absolute emotional mess. I felt hopeless, helpless and worthless. And I felt like we were utterly alone.  

But, alas, the urgency of Roel’s condition (his creatinine level –the chemical waste product in the blood that should be filtered by the kidneys- was not showing any sign of improvement) snapped me out of my negative emotions.

While still in the process of finding a viable kidney donor and pooling our financial resources for the costly operation, and in the face of the graveness of the situation, we had no choice but to go through with the dialysis.

If the pain in learning that Roel had CKD lays in the uncertainty of the situation, with dialysis, the pain was in the actual experience.

Roel had to undergo dialysis sessions three times a week, with each session lasting for at least four hours. He was on a low sodium, low potassium, low phosphorus, low protein and low fluid diet, and combined with a low purine (anti-gout), low glucose (anti-diabetes) and low fat (anti-hypertension) diet, that meant virtually starving himself. But even then, he could hardly walk due to the severe gouty pain and swelling in his feet (Because his kidney function was already down to 11%, most of the toxins were building up in his bloodstream regardless of his food intake.). He had to be injected with erythropoietin, also thrice a week, for anemia. But after each dialysis session, he would still be too exhausted and drained of energy to do anything else. Twice, he even passed out due to miscalculation in his ideal dry weight. But all these were nothing compared with the emotional torture that he had had to endure each time he went to the dialysis center. Most of the patients there had lost all hope of ever going through kidney transplantation for any one of these reasons: lack of financial resources, difficulty finding a compatible kidney donor or one that could pass the stringent requirements of the National Transplant Ethics Committee, or failure to meet the requirements as a possible kidney recipient (high-risk patients, for instance, are discouraged to go under the knife as it could just cause them more harm than good).

I couldn’t imagine staying in a place for hours surrounded by people at varying stages of suffering and hopelessness, but my husband had to go through that over and over again. I could only do so much for him at that point. I could quit my then new job to keep him company 24/7, but I could not, for the life of me, alleviate his physical pain. I could hold his hand forever, but I could not offer my arm when his had already grown hard and purple with countless pricks. I could drive for him, but I could not make his legs strong enough to take even a single step without swaying or groping for something to hold on to. I could cook for him, but I could not force either his taste buds or his appetite to function properly. I could provide him with words of love and comfort, but I could not allay his worries and fears. I could chat with him endlessly, but I could not erase the memories of all those times spent at the dialysis center, and all the emotions those memories must have evoked in him. 

Just like during his pre-dialysis days, I felt utterly hopeless, helpless and worthless then.

During the next month, in our vigorous search for a kidney donor, we asked among relatives, friends, colleagues, neighbors and even strangers, but to no avail. As much as I wanted, I couldn’t be an organ donor for my husband because I was, myself, hyperlipidemic and borderline diabetic. It was then an enormous blessing when our eldest son volunteered to take on the task (This story would have to be for another blog post!) and when the father-and-son tissue crossmatch yielded an excellent result. It was definitely a cause for celebration until the day of the transplant came, when I was suddenly overcome by a deluge of emotions.

I was relieved thinking that, after the operation, Roel would no longer have to experience being dialyzed again. I was happy that he would be given a new lease on life. I was worried that something might go wrong during the operation. I was agonizing because, at that very moment, two of the most important persons in my life were lying on separate operating tables, putting their lives on the line in the name of love for our family. I was consumed with guilt because, instead of my son, I should have been the one doing that ultimate sacrifice. I was – am! – Roel’s wife and, as such, should be his partner in bearing the heaviest of burdens for our family. I was supposed to be the one putting my life on the line for my husband.

Again, I felt hopeless, helpless and worthless.

Today, almost a year has passed since the kidney transplant. Both my husband and my son are in impeccable and stable health condition. Things in the Aquino household have finally settled down and we’re now almost done picking up the broken pieces of our lives. We have inspired people with our story and we have learned valuable lessons from our journey. We have come to realize that the crisis we had vigilantly struggled through was, in fact, a blessing in disguise. Without our solid commitment to our wedding vows, though, I don’t think that we could have made it through.

But sometimes, in the stillness of the night, I am still assailed by negative thoughts. Doubt would come creeping over me, slyly trying to convince me that, through it all, I was nothing more than a hopeless, helpless and worthless household fixture.

In the past, it would have been very easy to convince me of that. But, not anymore. Now, I know myself better. I could declare with conviction that I have always been and will always be a tough yet devoted mother to our three beautiful children, a painstakingly supportive wife to Roel, and a fearless and strong-willed woman who is constantly ready to take on whatever life has in store for me.

With my husband, nine months after the kidney transplant
With my husband, nine months after the kidney transplant

(Read this for more info on the symptoms of kidney disease: http://lifeoptions.org/kidneyinfo/ckdinfo.php?page=3)

(Read this for more info on the stages of grief: http://www.stages-of-grief-recovery.com/7-stages-of-grief.html.)

(Read this to know more about dialysis: https://www.kidney.org/atoz/content/dialysisinfo.)

Advertisements

4 thoughts on “THE MONSTER WITHIN (A STORY OF SELF-DISCOVERY AMID ADVERSITY)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s