Hope and acceptance

Watching my son struggle against cancer for the past six years has been extremely difficult. As a parent, you do everything in your power to shield your children from harm. When all you can do is watch helplessly as your child suffers, it eats away at your psyche like a virus. As a person of faith, you pray with every fiber of your being for a miracle. You enlist others to join your prayers. Yet when the miracle does not come, doubts creep in.

Last night, we played host to my nephews. We sat around eating unhealthy snacks, playing board games, and engaged in pop culture commentary. The later consists of tuning into New Years' Eve coverage from Times Square with the sound muted. When some icon appears on the screen, we take turns putting words in their mouth. By the time the ball dropped, we had our share of laughter, occasionally even the side-splitting variety.

Somewhere during the festivities, I got a smartphone notification that my son had just posted something on the social media site for cancer patients to update family, friends, and support group members abreast of news and views. Unlike Facebook, you can keep it real, so to speak.

Much to the chagrin of our teenage guests, my wife and I suddenly checked out mentally and clicked the link to read his post. It cuts to the heart of trying to psychologically adjust to suffering.

The biggest challenge has been that I was simply unprepared. Once I was diagnosed and on a stable treatment, it was easy to say that I understood my disease and limitations. I became comfortable operating within the parameters my illness set. 

Yet when everything abruptly changed, I was not prepared. I was unprepared for the frustration and helplessness of repeated hospital stays. I was unprepared for the brutal nausea that left me sleeping on the cold bathroom floor as much as anywhere else. I was unprepared for the terrifying ER visits where my severe electrolyte imbalance caused a dangerous (and if not treated, potentially fatal) issue with my heart. 

I was unprepared for the incident that happened in Key West, one minute I’m fine and the next, I’m my own version of a babbling looney toon. And more than any of that, I was unprepared for phone calls this week from my neurologist after I’ve had some lingering memory, confusion, and word difficulties from said incident. Looks as if my complicated medical history made the initial diagnosis a bit difficult but it appears that the lovely incident was caused by a roving blood clot (small stroke). I have to go in for a battery of scans and other tests to be sure that there are no remnants from a clot and then add some meds to be sure it doesn’t happen again. What’s frustrating is that I knew this was a distinct possibility. 

As I read it, I could not help but think how I unprepared I was for the cancer nightmare that began shortly after his 18th birthday. When the initial shock wears off, you eventually reach a state that might be called acceptance. As long as the disease is in some semblance of medical control, you gain breathing space. Although more often than not, it feels more like holding your breath until the crisis hits.

What makes hope difficult is that the oncologist is very realistic in his appraisal. He does not sugar-coat anything. He lays out the clinical probabilities and discusses the likelihood of treatment success and side effects. Don't get me wrong. He has the best bed-side manner of any physician I have ever encountered. There is no shortage of care and compassion. My son can email him 365/24/7 with an issue and he will always respond within hours. He also does everything in his power to prepare us for everything.

Despite the doctor's best efforts, we struggle with things we were told were possibilities, even likely occurrences. Mentally we know better than to engage in blind hope, but indulge in it anyway. Then reality leaves hope on life support and you fight with everything you have for acceptance.

But it doesn’t matter. I’ve learned recently that knowing something is possible or even inevitable is meaningless when it comes to mental preparation. Anyone can lie and say they’re prepared for something, whether it’s progression in an illness, potential side effect, or even death. But knowing does not lead to acceptance. 

In some ways I know it’s a good thing. Even when we’ve been told something bad will happen, we cling on to each remaining thread of hope no matter how tattered and frail. Even the most rational refuse to accept morbidity as a guarantee and that optimism is undoubtedly necessary. 

But it also leaves us gravely unprepared for each next step. I’m finally realizing that I am definitely not prepared for anything worse. Like before, I will learn to live within my limitations. The mantra is “you’ll never be prepared for worse, so don’t bother trying”.

Faith has been a blessing in this nightmare. There are people in my congregation that seem to "know" when I need a lift. It is frankly uncanny and downright unnerving at times. Sometimes they show up out of the blue.

A few weeks ago, I was walking home and a car slowed stopped alongside me. The window rolled down. It was someone that sings in the choir. Saying she has a big personality is an understatement. She offered me a ride. I told her I was not far from home. She insisted. The ride to my house was a mere four blocks but then we chatted for an hour outside in the car. She told me her own battle with cancer and we had a very real conversation. When she drove off, I walked into the house in far better shape. It was a lift I did not know I needed until some of the weight was lifted.

That is just one in a hundred stories I could tell. Too many times to write it off as chance.

I have friends and acquaintances among the "none" crowd - religion is not their cup of tea. Some like to chide me on faith because God has not answered my prayers that my son be restored to health. I try to explain that faith is not some insurance policy against bad things happening in your life. God is not there is grant wishes and respond to my every whim. I wish that were true, but that is shallow, immature, and what separates belief from superstition. Sometimes I just give the Holy Spirit indigestion with a far less gracious response. When they look surprised, I say that there is no commandment to suffer fools gladly. Strangely, some even seem to prefer that answer.

In all the times I have prayed for my son's health, the answer has always been the same. In effect, "fear not, he is my hands." That is the greatest gift of all, but it is not the one that I want most.

Faith is about having a real relationship with the divine. In my heart of hearts, every prayer is answered.  Sometimes I know things are going to turn out well and they turn out even better than I anticipated. Sometimes I know things are not going to go as desired. Even though the worst may happen, there are many unexpected blessings that allow me to keep going and even grow in faith. All of makes no sense to people who lack the gift of faith.

On some level I am prepared for the worst, at least from the standpoint of faith. That does not mean blind optimism or even acceptance. Just the confidence of knowing that somehow, someway I will come out on the other side of whatever storm that comes, emotionally scarred and physically battered perhaps, but spiritually whole.