J. Michael Jones

The Fear of Becoming Extraneous

I’ve written before that I believe the MO of most of our behaviors is the quest for value. This is the reason we have careers, why we stride to be good people, good parents, good husbands, or wives, just to name a few. Money is like the blue ribbon at the county fair, the more we have, the more value it seems to instill. I’ve spoken to many people who deny this. They say things like their self-esteem is intrinsic, or from God, or whatever. If they are being honest, then they are far better people than me.

Imagine for a moment that you were (falsely) accused of being a child molester and no one on the planet believed you, that you weren’t. Would that not influence your sense of self-worth, even if it weren’t true? I wrote a novel once based on that premise, the only novel I finished but never published.

When cancer comes into your life, suddenly all the things that gave you meaning, and value start to dissolve. Your future is suddenly gone. Those plans for retirement, evaporate. Your career abruptly ends, and I never realized how much my career was part of my sense of value to society. Then your physical strength starts to fade. I can still open jars that Denise cannot, but that’s about it. She can far outpace me in any other physical challenge. But as a man, I wanted to be the hero. I wanted to be the one who climbed the mountain and punched the dragon in the nose to save the entire village. But now? I couldn’t punch a chicken in the beak to save a grub worm. Shameful.

As a chronically sick person, my standing within the family also suddenly changed. I went from being the anchor, the person of strength, to a piece of furniture, and not the best furniture at that. This is not self-pity talking but just the way it is, observed honestly. I noticed that family members stopped asking me for advice, or even talking to me the way they once did as if I were a tattered chair. I was always the trip planner, and now I’ve become the trip inhibitor. For a couple of years, the phone calls stopped. That is the way they cope with an intrusive blob that came into our family, I the bearer of that blob. I always wanted to be the giver of blessings to my family, not the taker of those. But with those inevitable changes, you can’t help but to feel extraneous to the family.

We sufferers also go from being the “breadwinner” or at least a major financial contributor, to suddenly having no income, but costing huge amounts of money. In my case, insurance has covered most of this expense, yet I have a great cost (about 2 million dollars so far) to society. I can’t bear to look at those payments by insurance companies. Am I worth that? It doesn’t feel like I am.

I am part of an online support group for sufferers of Multiple Myeloma (MM). I don’t go there often because it is difficult. The people who post there are either experiencing overwhelming suffering and death—most likely—or are thriving. The thrivers are climbing mountains to punch the dragon in the face. But MM can have no symptoms whatsoever, or it can cause horrible symptoms, depending on how it manifest.

In that MM support group, how people look—their physical appearance in other words—is often a topic of interest. The women talk about it most, and suggest it is only an issue with them. But I beg to differ.

We all deal with the shock of growing older and the impact that has on our physical appearance. Billions are spent in aesthetic clinics trying to mitigate those changes. But this process is accelerated for cancer patients. With the disease, most must stop exercising the way they were before. Most of us are on steroids, which caused us to gain weight around the waist, gives us a red, moon face. Most of us lose all our hair at some point, then chemo keeps it thin. So, what I’m saying, most human beings base some of their feeling of self-worth on their appearance. While everyone has some angst about growing older and losing any youthful attractiveness, but with cancer, often that process happens over night, as if on steroids (pun intended).

With the list of all those losses, and there are more, the cancer patient, or at least this one, begins to feel that they are at least extraneous to society, if not a burden. I would say that the psychological battle, trying to believe that you have value when so many things are screaming that you don’t, is more formidable than the physical battle against the cancer cells themselves.

One of the reasons I write (novels) is to help fill this new void. While I no longer have the grandiose idea that I can succeed at it, meaning earning an income, it is something I love to do. Call it escapism. But I—almost literally—feel that I’m living in the world of my protagonists. The characters become my imaginary friends. And, for someone who must live as a hermit, whose wife is working full time, it is profoundly important to me. When I get a positive review from a published book, it not only makes my day, but makes my week if not my month. I only feel then that I’ve made a positive contribution to society. But I fear that even this is unsustainable. Writing can be an expensive hobby if you are not earning income from it, and if I incur more expenses, then this search for meaning will be self-defeating.

Several of the caregivers in the MM group have shared how their husbands, boyfriends, etc. have become despondent, choosing to forego all future treatments. Therefore, I believe. I’m speaking for them. Despondency is always a threat. This may be our greatest risk, our most formidable fear.

Yes, I know that we must find our value intrinsically. As a Christian, it is value instilled with my creation. Nothing can add or take away from that. But in the real world, it is a daily battle to not feel worthless when so much has been taken and society appears to be saying to you, that indeed you are.

The Fear of Becoming an Asshole

I don’t feel well. Most likely, I will never feel well again as I have sustained permanent damage and I will need to stay on this chemo for life. I have pain. Everyday is a fight to stay alive, to avoid infections that is the most common cause of death in MM patients. Yes, others have greater pain and feel worse than me. But what I have leaves me in a state of irritability. What used to be routine, getting up, showering, putting on my clothes, now takes tremendous effort. It leaves me feeling irritable. When a bolt won’t come out of an engine that I must repair, I swear. I don’t have the energy to fight with it. When I drop something and bend over and have a jolt of pain in my spine, I swear. Denise doesn’t like it when I swear, and I feel her pulling away.

When you have any big trial in your personal life, the tendency is to make you a narcissist. It is hard to focus on the hardships in other people’s lives, and there are many. It takes an extra discipline to listen to them and to honestly remove your focus from yourself, to them.

In this state of fatigue and irritability, I have little tolerance for criticism or with people who interfere with my task of trying to stay alive. My fear is that the way I deal with this is by becoming an irritable asshole, giving other people more of a reason to avoid me. It is a constant struggle to keep a smile and to go along with the normal people, when I don’t feel like it. I no longer feel that I am a good man. I, the once world-traveler and adventurer, am now a home-body. I love my home, my lake, my dog, and of course my family.

Losing The Battle of the Mood

The physical battle in fighting cancer is hard enough, the mental battle much harder. It is the battle of depression and self-pity, and it is life-threatening.

I will never forget an interview I saw with Barbara Walters and Christopher Reeves. He was like the perfect man, and that is why he was chosen to be Superman in the movies. He had checked all the boxes for having value in our society, youth, handsome, fame, money, and just being a good man. But then he had a fall over a horse and severed his high cervical spinal column, leaving him instantly as a quadriplegic. Barbara asked him, “Do you ever feel sorry for yourself?” He had to talk through with pauses because he was on a full-time ventilator. He answered, “I give … breath … myself … breath … five minutes … breath … each morning … breath … for self-pity … breath … otherwise it would … breath … totally consumed me.”

This is the battle we face. There are plenty of points that are self-pity worthy, but we just can’t allow ourselves to go there. Then we become despondent, depressed, and stop all the battles to survive. I’ve watched many people choose death because of mood, although their cancer did not dictate it. This fear is that someday I will lose this mental battle and succumb to it all.

Conclusion

You cannot write about “fears” without sounding negative. So, to counterbalance what I’ve written, I want to be clear about the things I am grateful for.

Yes, due to risks of fatal infections, I am a hermit, but I live on three acres on a lovely mountain lake. Save the cancer, I would be envious of myself. My cancer is in full remission right now. I can’t imagine the nightmare if I had so many side effects from the chemo, then it wasn’t working. I am deeply grateful for that. While a hermit, I’m not alone. I know other patients who have no spouse, no caregiver, or friends. I can’t imagine how they have a motive to live.

When your life becomes fragile, it is like you have been transported from a lessor cosmos to this, higher one. The grass is greener, the sky bluer than ever before. I have never loved life as much I as do now. There are no bad days, come the bright sun or dreary rain.

So, my point here is, self-pity or any of the other points, are the fears that I have, and I think others have in these situations. I’m voicing those fears outside my head, for me and for them. It is a formable battle, but it doesn’t mean that we have succumbed to those temptations.

Mike,

The Hermit at Loch Eyre.