How Polio and PPS Impact Our Character, Personality and Emotional Experiences

Highlights from PHI’s June 2024 Town Hall with Hal Goldberg:

I want to talk about the grieving process, because it’s something that is definitely part of polio and post-polio syndrome. Grieving is the process by which we separate from a lost dream. In other words, removing it from the center of our life to focus more on the peripheral, on a new obtainable dream.

For example, if it’s important for us to be outside communing with nature, maybe we used to do that on a bicycle. Now, we can no longer ride a bicycle, and that is a loss. So, perhaps the next step is riding an e-bike. Then we can no longer ride an e-bike. The next step is maybe just trudging along, followed by walking with a cane, followed by using a walker, followed by being in a wheelchair. We’re still having our needs met to be in a natural setting, but each time that we lose that functioning, it’s a loss. And we grieve that loss.

When we lose something, whether it be a loved one or a prized possession, we haven’t lost anything that we had, not one thing. What we have lost is our projections, our fantasies, our dreams of what will be. When someone we love dies, we still have everything that we had with them, except for the future. And that’s what we are grieving.

When we were younger, we thought that loss just maybe happened to the unfortunate few. Now that we’ve all aged, we know that’s not the case. We are losing people we care about. We are losing physical functions. We’re compromising our cognitive functions. Loss is not something that any of us can avoid. We’re at a point right now where we have learned that the hard way. So how do we deal with that loss? How do we deal with that emotional pain?

There are four ways to deal with loss. One is by acting out. We can act out through the use of drugs, through overeating, through binging, through desertion, through leaving relationships, through financial irresponsibility, through becoming a workaholic, always keeping too busy to stop and think, always moving from one task to another. These ways of acting out are generally either immoral, unethical, illegal or dangerous.

The next way we can deal with it is disconnection, through isolating ourselves, through withdrawing from any social environment, through refusing to talk about the issue, just shutting down.

A third way is impacted affect. That means our life is totally dominated by just one feeling state. That could be depression. It could be anger. It could be guilt. All the feeling states are very normal. When we’re stuck in one feeling state, whatever it is, that’s impacting how we see the world.

The fourth one is grieving. Grieving is wonderful. It is spontaneous. We are all born knowing how to grieve. We don’t have to be taught it. However, we have to realize that whatever loss we have, it brings up all of our past losses, and that can feel awful. When we experience a loss, we might go back to when our mother died or when we first contracted polio. We’ll say, “I thought I worked that through. I really did not believe that was still an issue.” The reality is, yes, you did work it through. The reason it feels the same is because those feeling states are exactly the same. But we’re different people, we’re in a different place, and we have gained from all of that.

Question: When you speak of the grieving process, is it time-bound or does it go on forever? Are there stages?

Hal Goldberg: I don’t like the word “stages” because to me that implies there’s a sequence. I see it more as “states” of grieving. Elisabeth Kübler-Ross, who was the foremost psychiatrist working with terminally-ill people, broke down the feeling states of terminally-ill people into five states: denial, anger, bargaining, depression and acceptance. That was groundbreaking in its time (the late 1960s). Now, we know how much was missing from it. Her belief was that there was an order to grieving. First, we deny, then we get angry, then we bargain, et cetera. What we have found is that there is no sequence at all.

In direct answer to your question, is it ever over? Elisabeth Kübler-Ross’s theory was “yes.” I think the belief now is “probably not.” What happens is the loss is right here, and it’s with one 24/7. You can peek around it at times, or you might be able to enjoy a conversation with a friend or a movie or something. But you’re looking around to see that because that loss is [in front of you]. And as time goes by, it moves [to the side]. At this point, it’s still a part of you, but you have the choice of when you want to look at it, and your life is clear in front of you.

Question: About twenty years ago, I started going through what was then diagnosed as post-polio syndrome. I found myself not being able to do certain things. I don’t remember it being particularly difficult at the time because my husband was still alive, and he just automatically did all the things that I couldn’t do anymore. He passed away two years ago. We were married and partners in business for 50 years.

So, I’ve been going through that grief. What suddenly occurred to me when you were speaking was that I’m going through almost like “double grief.” Not only did I lose my life partner, but now I lost the person that gets things out of the cupboard for me or puts gas in the car or does those little things that you don’t think about when there’s somebody there doing them for you. It was just automatic because that’s the way we lived.

I have a lot of anger that I never had before. I think the anger is coming from not only the loss of my spouse, but that I can’t do simple things easily anymore. How do I fill up my day when I can’t physically do that much?

Hal Goldberg: You are hit more with your own physical compromises than you thought you would be because now you are the only one to put gas in your car; you’re the only one to get something off a high shelf. Will you ever get over it? I guess the hope is that we will continue to embrace our abilities. Post-polio will not impact your mind. It will not impact your heart. You are still you 100%, and you will continue to learn and to grow.

When you talked about being good at giving help and not good at asking for help, that is pervasive for most of us. However, think about how you feel when you give help. It feels so good to be able to provide assistance for someone else. I can’t imagine that your children and your grandchildren would not jump at the chance to give you support. By asking them for help, my belief is you’re doing them a favor also.

I think there are two clusters of feeling states in my experience. The first one is soon after one realizes there is a loss. I can no longer walk without braces. I can no longer pick up my grandkids. There are a couple of feelings that come from that, denial and anxiety. Their function is to prepare us for the major change that loss will demand upon us.

Denial is very important and very positive. It buys time for us to discover both our inner strengths and our external supports needed to face the loss. If we didn’t have that time to deny, we would likely go crazy being hit with the impact all at once.

After denial is anxiety. We all know how awful it feels to be anxious, to not be able to sit still, to just be nervous constantly. That mobilizes us. It focuses us on the energy needed to make changes, both the internal changes and the environmental changes needed because of the loss. That’s when we realize it will change our whole life. This loss will change our feelings, our thoughts, our actions, our belief system. These are precursors to the feeling states of grieving.

What are the feeling states of grieving? For me, the big four are fear, guilt, depression and anger. They all serve a purpose. Fear is fear of abandonment, fear of being deserted by family or friends, fear of how vulnerable we are. Will I ever be able to get through this? Can I keep myself safe? What am I going to need help with next? What fear does—the positive part of fear—is facilitate recommitment to attachment, to loving in spite of the vulnerability, in spite of our fear of abandonment.

Another feeling state is depression. We might question our competence. We’re wondering if we still have any value in this world. Do we have any value to society? What that does is act as a medium for redefining our competency, our capabilities, our value to the world, our potency.

Another feeling state of grieving is guilt, or blaming oneself for something bad that has happened. Guilt facilitates us being able to resolve the questions of meaning and significance. What is the impact on our feelings and thoughts about what’s happening in our lives?

The fourth feeling state is anger, which allows us to redefine ourselves because we all have that sense that life is supposed to be just. This profound loss that we’re experiencing right now is not right. We can be angry at our spouse even over little things. We might be angry at the medical community. We can be angry at God. Someone much smarter than me once said, “The only pain we can avoid is the pain we create for ourselves by trying to avoid pain.”

I think one reason it’s really helpful to understand this grieving process is that, as behavioral science researchers know, we try to feel the way we think we should feel. As we grieve, even though our sense of loss and our emotional pain will still be right here, it’s possible that this knowledge will help us work through it a bit more quickly.

How does one keep a positive attitude in the face of continual changes, not only those related to polio and PPS? Just as you’re grieving one loss, then there’s another limitation [that occurs]. Keeping a positive attitude all the time is too hard of a challenge. We have to give ourselves permission to be scared, angry or sad. If we’re stuffing those feelings down, they’re going to come out and surprise us in ways that we are not aware of.

We need to recognize that uncomfortable emotions are part of the healing process. I hear people say, “I’m afraid if I start crying, I will never stop. I’m afraid if I let myself be sad, I will never be able to get out of it.” Just the opposite. When we allow those emotions in, as we deal with them, as we work them through, we always emerge a little stronger.