[Editor's Note: Connie Kennemer has multiple sclerosis. Her letter has been reprinted from "...And He Will Give You Rest," Vol. 3 Issue 8, August '99, and is being used with permission. Her letter and other articles for caregivers can be seen on the Rest Ministries Website.]

This week I read a letter that made my heart wince. It came from a desperate young woman living with the ravages of chronic pain. Her words, however, depicted not her own despair, but her husband's. She tearfully described the sorrow and panic and guilt she felt as she realized that it was her condition that was holding him under the angry waves that threatened to destroy him. Her words begged response as she called out for someone-anyone!-to help this man who was sinking under the heavy burden of her pain. The climax of her cry came in this sentence: "I love him so much that I even thought of leaving him so he wouldn't have to see me like this...or deal with all of this." Her words cut through my mental landscape like a machete. I was taken back by the range of emotions it stirred.

My mind flashed to scenes from a movie I had recently rented: "Simon Birch." I fell in love with this miniature twelve-year-old who was wise beyond both his size and his years. In a gut-wrenching scene that you hope only happens in the fantasy of novels or the silver screen, Simon is responsible for the bizarre accidental death of his best friend's mother. The trauma is cruelly magnified by the fact that the woman he "killed" was his surrogate mother-the only loving mother-figure Simon had ever known. I am still haunted by the gripping scene when Simon straddles the lonely bridge and breaks the silence with a cry meant for heaven's ears-"I'm sorry! I'm sorry!!"

I have been a traveler on that bridge. I, too, have "apologized" to heaven-and to all those who are wounded because I am wounded. I'm sorry that Rex's life has had to readjust to my illness. I'm sorry that many of his dreams for our family have been scrubbed. I'm sorry for ways MS has impacted my son... my parents... my friends. If those I love could only know how sorry I am...

For all the caregivers that spend themselves-some willingly, others because they must-hear me on behalf of all those who suffer with chronic illness or constant pain. As you battle hopelessness, helplessness, depression, anger, frustration, know this: Our suffering is intensified by the losses that our diseases have inflicted on you. We did not choose the path we stumble down. We still grapple to accept our condition and struggle not to blame ourselves for the debri that it has dumped on you. But in our weakness, we offer each of you this gift-our "catharsis", if you will- We are sorry. WE ARE SORRY! Thank you, Simon Birch, for the moving scene of a broken person on a bridge we all must cross. And in the crossing, find ourselves more whole.

[Editor's Note: This article first appeared in Paraplegia News and can viewed along with other helpful information for family caregivers at the National Family Caregivers Association Website.]

What is caregiving and how do you define a family caregiver? What is the common thread that ties together those of us who care for spouses, children, parents, siblings, partners or friends who are chronically ill, frail, or disabled?

It certainly isn't the tasks of caregiving. They vary so much, from helping a developmentally delayed child learn new skills, to taking an aging parent to frequent doctors appointments, or suctioning a spinal chord injured spouse virtually every hour every day.

It surely isn't the number of years involved. Caregiving can last a few short months . It can last three to five years. At times, caregiving is a lifetime commitment.

Location varies from situation to situation. Although most caregiving goes on in the home, and most caregivers and recipients live under the same roof, talk to anyone whose parent is in a nursing home and you'll quickly learn that caregiving doesn't end when someone else is responsible for day to day care, or when caregiving takes place long distance.

If it isn't the responsibilities or tasks, and it is not the length of time, if it isn't the location - what is the essential bond of caregiving? What does caring for a spouse with multiple sclerosis have to do with caring for parents who are losing their independence, or a child with epilepsy.

In 1994, when the National Family Caregivers Association (NFCA) conducted its first caregiver member survey, we were seeking to find that common bond, to define the link between all caregivers. We found in no uncertain terms that the common bond of caregiving is its emotional impact. In 1997 when we surveyed our members again, we found the same thing.

The common bond of caregiving is the intense sadness we feel because someone we care about has suffered a brain injury, is losing their mobility, will never achieve normal life functioning. It is the sadness that comes from wanting the miracle of normalcy.

The common bond of caregiving is the upheaval of changing family dynamics that occurs because life has been turned upside down and because there is no set timetable for working through the painful stages of grief which caregivers and care receivers all experience in their own personal and private way.

The common bond of caregiving is the sense of isolation that comes from living outside the norm, from having everyday activities of life - dressing; walking; toileting; breathing, thinking clearly - that everyone else takes for granted, become such a big focus in your own life.

The common bond of caregiving is the frustration we all experience because it is so hard to get things done, because non-caregivers just don't understand, because healthy people park in handicapped parking spots, and because people who are supposed to have the answers often don't.

The common bond of caregiving is the stress we feel because we don't have enough leisure or personal time, and the common bond of caregiving is unfortunately often the severe depression that so many of us suffer.

These are the common bonds of caregiving that tie us to one another, that develop in us an innate understanding of each other's pain, each other's lost dreams, each other's fears.

These shared emotions, these very difficult emotions, are the common bond of caregiving. But there is another common bond, another shared emotion, that we don't recognize as often as we should. It is the inner strength that most of us never new we had.

It is the fortitude to go on despite the pain It is the wellspring of hope we always dip into. It is the power to make a difference. It is the clever way we solve a difficult problem. It is the knowledge that we have been tested by fire, and we have survived.

Our inner strength is the gift we have been given. It is the "pay back" for the pain, and although many of us would gladly trade it in for an easier life and our loved one's health and well being, we nevertheless ought to recognize its extraordinary value.

The problem is I don't think most caregivers do recognize it. I think most caregivers are so caught up in the act of caregiving that they don't step back and look at the extraordinary things they do. I think that many caregivers don't even identify themselves as caregivers.

This is not surprising. The term caregiving does not exist in most dictionaries. Caregivers have not been counted in a US census and are therefore not officially recognized as a significant minority. Caregiving and caregivers, are invisible.

I wish it weren't so. I wish caregivers were given their just due. I wish caregivers themselves would recognize their value, acknowledge their individual achievements. Empowerment is an overused word, but it is the one that comes to mind when I think of what I want for caregivers.

Empowerment for me means a sense of self-confidence, a belief in one's ability to have some control over situations, a sense of pride, a feeling of self-respect and self worth. For the most part, we use our inner strength to help our loved ones and to get through difficult caregiving days. We need to begin to use it to take better care of ourselves, to feel proud, to experience the beauty of self love.

I received a letter recently, actually an e-mail, from a member of the National Family Caregivers Association. She said that NFCA had become a great solace to her. She said that we made her proud to be a caregiver.

Proud to be a caregiver. I mulled the phrase over in my mind for quite some time before I realized that the true definition of caregiving is buried in that phrase, in the understanding that caregiving is a role that tests our abilities, our faith, and our character.

What is caregiving? How do you define a family caregiver? I think I have the answer now - you define family caregivers by their emotions and their spirit, by the sadness in their eyes, but also by the determination in their hearts. Caregivers are very special people.

[Editor's Note: This article first appeared in Paraplegia News and can viewed along with other helpful information for family caregivers at the National Family Caregivers Association Website."]

Who am I? How do I define myself? How do you know me? These are heady questions; ones we ask ourselves all of our lives as we try to establish our identities, and find a place for ourselves in this world.

I define myself in many ways - first with my name. I am Suzanne Mintz, Suzi to those who know me since childhood. Just by looking at me there are many things you can see that give you some idea of who and what I am. I am obviously female. I am caucasian. I'm a brunette, and I am petite.

These are all part of my physical presence, the outer shell, your first impression. They are characteristics that describe something about me. They are the descriptors I might relay to a person on the phone when planning on meeting them for the first time. They don't provide a complete picture, but they begin to create an outline.

We define ourselves in others ways as well, by our professions, by our religion, by our ethnic background, by our hobbies. Each label carries with it a set of facts, images, statistics. Some of them we choose. Others we do not. The point is, who we are is the summation of many different facets of our life, and the categories into which we fit, whether by age, gender, job description, etc. tell us something about ourselves, and they tell society something about us as well.

None of us like to be stereotyped, but we don't like feeling all alone either. By identifying with a group we gain some recognition. We fit in. We belong. We also gain knowledge about ourselves. I feel comfortable when I walk into a room full of women in "their middle years" because we share things in common. Our bodies are changing and with that our identities. I can talk to these other women and be validated. Because of research on women in their late forties and early fifties, I can turn to a book and learn what else to expect. I can gather statistics, information, become as educated as I want about this facet of my life. Identifying as part of a group can be very beneficial.

Who am I? I am the sum of all of my labels - and then some. I am wife, mother, daughter, Jew, Sherlock Holmes fan, fair weather jogger. I am a type "A" personality. I am a writer. And yes! I am a family caregiver too.

It is not the first way that I describe myself, but it is definitely part of who I am, and I believe it is a part that all of us in this role need to own - for our own sakes and for the common good.

Yes, I am a family caregiver! It is becoming a mantra for me, and I think it should for you as well.

By identifying myself as a family caregiver, part of a group, I am building recognition of what I do. I am saying I am not an isolated instance, an oddity of one. I am part of a group of people - in fact a very large group - with common issues, characteristics, needs and concerns. We caregivers so often fall into our roles, just taking on tasks one after the other, as a matter of course, feeling feelings we are afraid to own. By giving a name to our situation we validate our experiences, and all of our feelings. We say to the world: Here I am. Look at me. Acknowledge me. Help me.

By identifying ourselves as family caregivers, we are in a position to fight for our rights, to begin to change the way society regards us, to start feeling better about our situation because we are identifying it for what it is - a painful job that we are so often asked to do alone, regardless of physical, emotional and financial costs.

For too many years I did not have a name for what had happened to my life when my husband Steven was diagnosed with multiple sclerosis. For too many years I was angry and unable to be comfortable with myself.

By identifying myself as a family caregiver, and by asking you to do the same, I no longer feel alone, angry or displaced. In fact, I feel strong and empowered. Armed with statistics and stories, I hold my head high and reach out for help with dignity. I talk to the press and members of Congress. I meet with other groups whose issues converge with those of family caregivers and chart a course for change in our healthcare system. I feel okay about my pain and understand my frustration, but best of all, I now take true pride in myself and all I have overcome in my role as a family caregiver.

By all of us identifying ourselves as family caregivers we are saying that family caregiving is not just a personal issue for those involved, to be dealt with only within the confines of our family, but rather a national issue that must be addressed. By identifying ourselves as family caregivers, we are calling attention to the inequities in our healthcare system. By identifying ourselves as family caregivers, we are saying we matter. By identifying ourselves as family caregivers, we are alerting researchers, policy makers, payors and others, in a position to make a difference, to the impact of family caregiving on us as individuals, on our families, and on society at large.

Being a family caregiver is not the end all and be all of my identity, but it is definitely part of it. It cannot, and should not, be denied. So who am I? I am Suzanne Mintz, woman, wife, mother, daughter, writer, Sherlock Holmes fan - and yes, a family caregiver!