Debilitating Illness Archives

If you have a strong body and good health you are indeed blessed.

I remember a day when I had good health and a strong body.

I remember being able to do whatever I wanted to do.

I remember hours spent playing basketball or softball.

I remember playing tackle football after church.

I remember walking for hours in the woods hunting deer, rabbits, or squirrels.

I remember hiking in the Huachuca Mountains.

I remember hiking to the top of Miller Peak.

I remember working long hours, with little sleep, and getting up and doing it all over again. And doing this for days and weeks on end.

I remember what it is to be a man’s man.

But, that is all I have these days……..just memories of a life that once was, a life I will never, ever have again.

Usually, at this point, someone is thinking, “I wonder if he has tried______________?”

Whatever you were going to put in the blank space, I have tried it. Diets. Foods. Drugs. Supplements. Tests.

Been there, done that.

I know you care and that’s why you send me the “new” information you have found. I know you want me to be in good health again.

But, it is not to be.

There is no fixing me.

God didn’t fix me, prayer didn’t fix me, and all the king’s horses and all the king’s men can’t put Bruce’s body back together again.

Life becomes one, slow, painful slide towards death.

Sometimes, I get periods of time where life flattens out. No new problems to deal with, no new adversity to fight.

These times become what I call The New Normal.

18 months ago, my right elbow started swelling and hurting. I went to the orthopedic doctor and he gave me a cortisone shot. The elbow problem went away.

About 9 months ago, my left elbow started swelling and hurting. I went to the orthopedic doctor just like before but this time the cortisone shot only lasted for a while and then the elbow began swelling and hurting again.

There isn’t anything structurally wrong with my left elbow. It just swells and hurts. It has been this way for months now.

My left elbow problem becomes a part of The New Normal.

Just one more thing to add to a long list of things I must deal with every day.

Think this is no big deal?

Add to the elbow problem, swollen and painful hands. Add to this chronic, never-far-from-me, lower back pain.

Then………think about wiping your ass.

A simple bodily function, yet it requires me to grit me teeth to stand the pain as I try to do what billions of people do every day.

The New Normal.

Family and friends rarely inquire these days about how I am doing. I understand. They see me handling The New Normal so they assume I am doing just fine. They have their own lives to live, their own problems.

Those of us who life which chronic illness and disability often feel like we are just another piece of furniture. While everyone else is busy living life to its fullest, we just try to get by til tomorrow. They get so used to use being right where we are that they forget about us. Often, we become invisible to those we love the most.

I have no answers to this problem. I don’t fault my family and friends. I have very little to offer them these days. I don’t contribute like they do. I am just taking up space. In the busy-ness of life family and friends assume that I will be here tomorrow. Just like every other day. I am right where I always am. A life that pretty much covers the distance from the bedroom, to the bathroom, to the Man Cave, and to the living room.

If I feel up to it my world expands to the yard or a short drive to a nearby town to shop or eat. These trips become harder and harder to do. When you can’t drive you have to rely on others to take you here and there and let’s face it………they have a life too. So…….for the most part, I suffer in quietness and loneliness. Maybe I should have been a hermit.

This is my New Normal.

I have no power to change any of this. All I can do is adjust to my New Normal.

One of the hardest things for someone with a chronic illness to do is to embrace their reality. We remember a past when things were different. We remember a different life. In many ways, chronic, debilitating illness has made us into a different person. Whoever we were before is long gone. We must accept who we are NOW.

Often, the great struggle is not with pain or lack of mobility. The biggest battleground is the mind. With our mind we can bring up memories of the past. With our mind we can survey the present. With our mind we can gaze into the future. Often, despair sets in.

It should come as no surprise that many people who have chronic, debilitating illness see a counselor on a regular basis. The mental toll such illness brings is overwhelming. Struggles over meaning and purpose become matters of life and death. The counselor often becomes the firewall between the sick person and the gun or pills. I know that is how it is for me.

For you who are healthy and full of vim and vigor this post probably sounds defeatist or even whiny. “I should be glad I am alive or that I have a spouse and children who love me,” some might say.

I wouldn’t argue these points but I do wonder how they might respond to life if they had to walk in my shoes for awhile?

Imagine losing your strength and vitality. Imagine losing the capacity to work and do things that give your life meaning and purpose. Imagine there never being a day or moment that you are not in pain. Imagine your life being reduced to sitting in a recliner and watching TV hours on end. Imagine not being able to drive and having to be driven everywhere you go. Imagine a life of walking with a cane or being wheeled around in a wheelchair. Imagine this is your life day in and day out. Imagine going to sleep only to wake up and start it all over again.

This is my New Normal.

I write this post not as a complaint or an attempt to elicit sympathy or understanding. I write this post to give voice to my fellow sufferers. I write so they can know that there is someone else who understands. Perhaps, united in our suffering, we will find the necessary strength to make it another day.

Pictures: Bitstrips and Lisa Copen

This entry is part 1 of 12 in the seriesBook Reviews

The Sound of a Wild Snail Eating is a delightful tale of Elisabeth Tova Bailey’s interaction with a wild snail. Baily, afflicted with an illness that keeps her bedfast most of the time, interweaves her story affliction with the story of a wild snail. In 189 pages Baily succeeds in telling a reader everything they will ever need to know about snails. After reading the book I felt like I have earned an advanced degree in snailology.

One early spring day a friend of Baily spotted a snail in the woods and decided to take the snail back to Bailey so she could see it. The friend dug up a few violets, put them in a pot, and delivered the pot and snail to Baily.Bailey’s friend brought her the snail because she thought her invalid friend would enjoy it. Her reaction was:

Why, I wondered, would I enjoy a snail? What on earth would I do with it? I couldn’t get out of bed to return it to the woods. It was not of much interest, and if it was alive, the responsibility—especially for a snail, something so uncalled for—was overwhelming.

Thus begins the relationship of Elisabeth Tova Bailey with a lowly common forest snail. Over the course of a year Bailey details her interaction with the snail.She paid close attention to the habits of the snail. What did it like to eat? When and how did it sleep? How did the snail procreate? (as she found out quickly and in great numbers)

If the book was just a science book about snails I suspect that some readers might bore of all the snail minutia dispensed by Bailey. Personally, I loved the minutia about snails because I love minutia in general. Just the kind of knowledge one uses to impress to people at a social gathering? Things like…. Do you know snails have teeth? Do you know that snails are hermaphrodites?

I found myself drawn into Bailey’s story not so much because of the subject, a snail, but because of Bailey’s debilitating illness.

Bailey writes:

There is a certain depth of illness that is piercing in its isolation; the only rule of existence is uncertainty, and the only movement is the passage of time. One can not bear to live through another loss of function, and sometimes friends and family can not bear to watch. An unspoken, unbridgeable divide may widen. Even if you are still who you were, you cannot actually fully be who you are. Sometimes the people you know well withdraw, and then even the person you know as yourself begins to change.

There were times when I wished that my viral invader had claimed me completely. How much better to live an exuberant life and then leave as one exits a party, simply opening a door and stepping out. Instead, the virus took me to the edge of life and then left me trapped in its pernicious shadow, with symptoms that, barely tolerable one day, become too severe the next, and with the unjustness of unexpected relapses, that, overnight, erased years of gradual improvement.

I wept as I read this passage. It resonated deep within me. As a fellow pilgrim on the road of debility I understood the cry of Bailey’s being. The remembrance of what once was. The lament over what has been lost. Sometimes, it is a simple thing, like a snail, that comes along to give us a bit of purpose and meaning.

I heartily recommend The Sound of a Wild Snail Eating. If you do read this book please share with us what you thought of the book.