KATHY RUSSELL
Today I am happy just to be alive and to be able to draw a decent breath.
Attitude and Depression with CF
Counteracting Feelings of Depression–Autumn 2003
BY KATHY RUSSELL
On a beautiful sunny day such as today, it is difficult to remember why I feel so depressed on some days. Today I am happy just to be alive and to be able to draw a decent breath. There are other days that I feel as if there is no reason for my existence, I feel totally useless and of no value to the world. Why the big differences – that is a good question.
I have lived nearly double the average lifespan of one who has CF. I should feel great about that – and I do, sometimes. But on other days, I am not too sure about anything. When I have to struggle for air and drag myself through the simplest tasks, I wonder why I’m still here.
Then there is the survivor’s guilt to deal with. Each time a friend dies; while I mourn the death I also wonder why I am so lucky and why I get to survive. One time the mother of a friend, who had CF and had died shortly before our conversation, asked me why her son died and I lived. I was stunned by her question. I realized that she was speaking out of grief but it still hurt to have her voice it in such a way. I told her that I have no idea why I get to live when others die but that I was grateful that I survive.
I am grateful but I also feel tremendous pain and guilt because so many people who have CF don’t get to live as long as I have. I deal with it better on some days than on others. I try to not let it get me down so badly that I get ill, but sometimes I do end up getting more congested and feeling bad after a jag of real sadness.
I had to quit working when I was not quite 32. That was much younger than I had planned on retiring. My health was deteriorating rapidly and I knew I couldn’t continue as I had been. It certainly made a tremendous difference in our lifestyle. My income had paid all of our taxes and we lived on my husband’s salary. Then, all-of-a-sudden, we didn’t have that extra income. We didn’t have the funds to do many of the “fun things” in life. It was terribly depressing. Here we were, two young marrieds, just getting started with our lives and we had to alter all of our plans.
We were living in California, away from all family and friends. We had moved to a new location in the month before I stopped working. Paul, my husband, was working long days and I didn’t get to see much of him. I felt totally alone, at times.
For about the first three months after I stopped working, I spent much of each day sitting just below the edge of a cliff, overlooking the Pacific Ocean, wondering what had happened to my life. I knew that most people rate a person’s value by what they do and how much money they make. Now I was a non-working person who had no income. In my eyes, I had no value to the world.
Many times, when I was deep in a funk, I thought of just leaning forward and letting go. I never did because I loved my husband and I could never do that to him. He was what kept me sane and kept me wanting to keep on trying. Also, I knew that suicide is a permanent solution to a temporary problem.
Instead of letting go, I gave myself time to heal. I started to see the beauty in the patterns of the waves. I started to enjoy the soaring and dipping of the sea birds that flew before me. I looked across to Santa Catalina Island and remembered the words of an old popular song. I watched the whales as they migrated through the channel. I realized that we all have our own journeys to make and that each journey is unique. I knew I had to make some changes.
Since my disability case was in process, I had to wait to see if I would get to collect on the Social Security payments I had been making. In the mean time, I decided to enjoy my life to the best of my ability. Even though I had limited energy, I still could do many things around our home. I started cooking more things from scratch. I always had loved baking, so I started to make our daily bread. (The neighbors in our condo were “driven nuts” with the good smells emanating from my kitchen.) I also made jams and jellies and my neighbors commented about the aromas from those too. I started enjoying my days.
After doing my normal morning tasks, I would get a book and go out to sit by the swimming pool. Although I never have been a swimmer, I still like the feel of sitting by the pool and seeing the beautiful reflections from the water. Also, I enjoyed the warmth of the sun on my tired body. There were others who sat there to read and we began to discuss our choices of books. Nothing was formal; we just liked to talk about the current best sellers or whatever was piquing our interests.
I began to enjoy just sitting and reading and the occasional chat with others. I found that I started to feel better. I still was not interested in participating in “social” activities. I preferred spending most of my time alone. I knew that I had to become someone with whom I could stand to be alone, before I could be someone that others could stand to be around.
About a year after I stopped working, we moved back to Oregon. We got a place with some land and a wonderful old barn. We could have a large vegetable garden and I was happy again. I was feeling stronger than I had for quite a while. I always have been more an “ant” than a “grasshopper” so I loved being able to can and freeze foods for the winter.
Eventually, my claim for disability benefits was denied. Once again I was in a blue funk. I suffered all the feelings of worthlessness, all over again. Not only could I not work, I was made to feel like a fraud. Although I knew intellectually that I was much better off not working, I still felt tremendous guilt for being a non-contributing member of society. I took a long time to finally overcome those feelings.
I always have been a volunteer. It was something that I was taught, almost from infancy. I went with my mother to help “stuff” Christmas Seals, long before there was a CFF. By the age of three, I was quite able to pick up a letter and a pack of seals and put them into an envelope, then put that envelope into a box in a specific order. I enjoyed doing the work and it was a way that Mother could keep an eye on me, while doing her volunteer work. I helped with the Christmas Seal campaign for the next 15 years and always enjoyed it.
After we were married, Paul and I volunteered with the Oregon Chapter of the CFF. Paul served on the Board of Directors and we worked on the annual camp for children who had CF. (I even volunteered as camp nurse one year.) We had a great time helping to make a special week for those kids.
In California, once I got over my initial funk from quitting work, I helped Paul with his Junior Achievement group. Once again it was great to help youngsters accomplish something. I am sure that I got as much out of the effort as they did. It did not take much time or energy but it helped me to regain a feeling of value.
Back in Oregon, I volunteered with my city, doing Neighborhood Watch presentations and chairing the Crime Prevention Advisory Committee. I also volunteered on the Neighborhood Accountability Board; to help keep kids out of the juvenile justice system.
For the past nearly 14 years I have been volunteering with USACFA, the publishers of CF Roundtable. I started by doing research for the founders to help get the organization established. Later I served as Treasurer and President. I have the opportunity to meet many people in person, by mail, by e-mail, or by phone. I am involved in a world of wonderful people. I am grateful for those contacts. I may be unable to hold down a paying job but I am able to keep busy with volunteering and helping others. When I don’t feel well or am just plain tired, I can let my volunteer work go. I know it will be waiting for me, when I feel up to doing it.
At times, I am tempted to spend my time worrying about the future. Then I remember something that my mother-in-law taught me – “Worry is like a rocking chair, it gives you something to do – but you don’t get anywhere.” Also, there is no sense in worrying about things over which you have no control. If there is something that I can affect and that I can control, I try to deal with that. If something is out of my control, I try to keep it out of my active thinking. I try to enjoy each moment and live it to the fullest.
Intellectually I know that I am a person of normal worth, but emotionally, sometimes, I am not sure. I must work hard all the time to combat all the things that can depress me. Some days I succeed and on others, I don’t. Keeping busy with various activities and putting a little “gusto” into every day helps to counteract those feelings of depression.
Kathy is 59 years old. She and Paul live in Gresham, OR. She is a Director of USACFA and her email address is: krussell@usacfa.org