Paul's Heart

Your Realness

My daughters and I were having a conversation about their late uncle, who passed away from ALS (Lou Gehrig’s Disease). It has been nearly eleven years, and I still miss him. As my older daughter understands and reminded me, “I know he was like a brother to you, not just a brother-in-law.”

Through Mike’s battle, he taught me many things. But one thing stood out, probably having the biggest impact on my life. Admittedly, I still have a hard time executing that lesson.

At the time of his diagnosis, I had been struggling with the diagnosis of all the different late side effects being caused by my treatments for Hodgkin’s Lymphoma. I was dealing with a swallowing issue, unbeknownst to me, caused by radiation treatments for Hodgkin’s Lymphoma. The mechanics of the whole thing is a separate post by itself. But the bottom line is that I was slowly losing the ability to swallow, to the point I could not even get water down. I often found myself choking unable to get anything down my throat.

A few months before things got really bad for me, my brother-in-law, had begun developing his own unique symptoms, his speech slurring. Many of us would joke that he had one too many “Jack and Cokes.” He was at a loss for what was happening, because it definitely was not caused by any drinking. Testing would reveal and confirm, Mike had ALS. The disease is discovered from either muscles twitching or getting weak, swallowing, or even, slurred speech.

As Mike’s speech issue and eventual swallowing progressed, he soon found the need to rely on artificial intelligence to assist his speech. At the dinner table, we soon discovered a problem, in stereo if you will. We both were having serious issues swallowing our food, caused by different reasons.

But if there is one flaw in my personality that I know that I am aware of, it is perspective. It can work for me, or it can work against me. No matter what I am dealing with, I will always believe someone is dealing with something worse than what I am dealing with. And with my brother-in-law, that was definitely the case. As I sat across the dinner table from him, me not wanting to eat for fear that I would be the one to actually choke at the table, Mike struggling to get anything down himself, I blurted out, “so Mike, which one of us is going down first?” After a few awkward chuckles, I continued, “I’m sorry Mike. I have no room to complain about this. What you are going through is far worse.”

Mike replied, “but that does not make what you are going through any less real, or severe. The only difference is each of our prognosis. That does not make your pain any less real, or relevant. Go easy on yourself.”

I would like to think it was at that moment, that after twenty-two years, I finally learned to do just that, but after thirty-three years, I still have not. Mike’s message is one that I share with any of my fellow survivors who have a moment, when one of their late term issues just happens to be overwhelming them, and they feel in the grand scheme of things, compared to other of our survivors, they may just have it better and therefore should discard their feelings. No, they should not. The feelings that they have are real, and have a huge emotional impact on their survival.

Look, during these three decades of survival, I have said goodbye to so many fellow long term survivors. A shorter lifespan, due to all the trauma that my body has been put through is expected by many of us, but by no means dwelt on. But that is a reality. Emotionally, survivorship takes its biggest toll, because that is when we are most likely not to give ourselves the slack when we need it most, especially if there is another survivor going through something we perceive as more serious. As Mike said, “it does not make it any less real, and deserves attention if necessary.”

A few weeks ago, I happened to crack two of my ribs, just sitting in my chair. I bent over to pick something off of the floor. I heard it, and worse, I felt it. And though I am known for having a fairly high pain threshold, because others have it worse than me, this is one time pain actually has my attention. This injury is likely related to osteopenia that I developed as a long term side effect from my treatments. But where is my focus? On my other fellow survivors. I consider this a minor inconvenience as I will be restricted from certain activities as my ribs heal. Though as I worry about my other survivors and their health issues, that does not make my injury any less real.