KATHYY RUSSELL
I am delighted to have the chance to get old!
Dealing with the Fears of Aging with CF
Not Aging is the Real Fear–Summer 2002
BY KATHY RUSSELL
For many young people who have CF, they are afraid of not aging. I never had that fear when I was young. I was diagnosed with CF when I was 12 years old. I overheard the doctors telling my parents that a diagnosis of CF was considered to be a death sentence, since all the children who had it were expected to die before age eight. They felt that I wouldn’t live more than another six months. My reaction was different from that of many other people who have heard such things. Since I already was 12, I figured they didn’t know everything. I decided that nothing, not CF or anything else, could kill me that easily. I decided to live as long and as well as I could.
Now, I am 58 and my perspective has changed. I know that CF is a disease of people, some of whom die as children. The far end of my life isn’t as far away as it once was. My friends who have been healthy all of their lives are starting to get fatal illnesses. Many have developed heart disease or cancer and have had to undergo surgeries, radiation and chemotherapy. I have worried along with them and their families. For some, I have mourned their deaths. For others, I have celebrated their recoveries. All of us have learned to appreciate every day and to make the most of it.
I could spend my days wondering who will be next…will it be me or will it be a friend? I choose to spend my time enjoying my family, friends and life. Most people who are as old as I am wonder if they will be able to get older. I am not waiting for the death of anyone. Rather than being afraid of aging, I am delighted to have the chance to get old!
Today, a young person who is diagnosed with CF has every reason to believe that he or she will live a long successful life. There are new medicines and treatments that were not available to those of us who are old. Research is finding new keys to survival and new ways to live even better than before.
Longer life expectancy carries new concerns. Where once people who had CF didn’t have to worry about planning for retirement, now they do. Planning for education and careers is extremely important. Being able to get and hold the right job can make a tremendous difference in one’s lifestyle and health.
I have heard from young friends who have CF that they are worried about meeting the “right” person with whom to share their lives. They are concerned that no one will want them because of CF. They are scared of entering the dating world because of CF. Will the cough, or the pills, or the digestive problems scare off any potential mates? Will a boyfriend or girlfriend run at the sight of machines, IVs, oxygen, CPT, or any of the other things that go with CF? How will they react to a hospitalization? These all are valid concerns. I believe that the answer is that if they are as fortunate as I was, they will find the right person.
My husband Paul and I have been married for 37 years. Most of the time has been pretty good. Paul has had to put up with illnesses and surgeries and missed commitments because of CF. He has stayed with me through good and bad. He has helped care for me when I have been ill and has helped me to realize that I needed to go the doc, when I thought I was okay. Thanks, Paul.
I never expected that there would be a cure for CF in my lifetime. I never put my life on hold while waiting for “the cure”. I lived each day as if it were the last, while planning for the near and far future. I went to school, got a good job, and started on a wonderful life. I got married, we bought a house and furnishings, and we enjoyed our life. When I started getting too sick, too often, because of my work…I retired. It necessitated some changes in our life plans, but we adjusted. (See CF Roundtable Spring 2002) Life went on. We always have been able to change our plans and move on.
One friend, who is a little younger than I and also has CF, told me that a major concern is the aging of our parents. When we were younger and we got sick, our parents could help us with our care. Now, just as we are getting older and need more time to care for ourselves, our parents are aging and need more help from us. This can cause some real conflicts within ourselves and within families. Setting our priorities can be difficult.
I helped care for both my mother and Paul’s mother before their deaths. My mother had severe reactive airway disease and her doctor was considering testing her for CF shortly before she died. She was having more and more trouble just getting through each day. During her final illness, it was very hot weather. I was trying to stay inside my house and stay away from the less than great air outside. Mother needed help with nebulizers and other meds and treatments. I felt quite torn between taking care of myself and going to her home to see to her needs. I tried to do the best I could for each of us.
Paul’s mom lived with us for several months before she died. She needed almost constant supervision because of her health problems. It was a little easier for me to care for her because she was living with us. I didn’t get as much rest as I needed and I did get very tired but I managed. I am happy that I could help each of our mothers and don’t feel guilt for having been unable to do more, because I did what I could.
Doing what we can is a key to living well. All of us who have CF must do the best we can to follow the prescribed regimens and do all the prescribed treatments. I know that it sometimes seems like too much inconvenience to do all the “stuff” we are supposed to. But the way I figure it, if I don’t do what I am supposed to and I get sick…I can’t blame anyone but myself. I do realize that doing everything that I am supposed to is no guarantee that I won’t get sick but at least I feel like I have tried to stay healthy. Recently this was brought home to me when I battled pneumonia once again.
Living with CF has often been described as being similar to living on a tightrope. We have a narrow path that we must follow. If we venture too far from that path, we fall off and end up ill or hospitalized. Those falls from the tightrope get more and more difficult to survive as we age. Each added bit of scarring or other damage to our bodies takes an ever-greater toll. Keeping our balance on the tightrope becomes trickier.
As we get older, we take longer to recover from illnesses. Always, in the backs of our minds, is the knowledge that someday we won’t be able to recover. We mustn’t let that knowledge become the uppermost thought in our minds. It is all right to be aware but we need to put it into perspective. Every living thing will die at sometime. From the moment of birth, we are moving toward our eventual demise. The real trick to life is to make the most of the time between birth and death and to fill it with wonderful and great times.
As Paul and I evaluate the rest of our lives, we must try to plan ahead for as many contingencies as we can. We have no children and we know that we must have a good game plan for the time when one of us is incapacitated or dies. We can’t rely on anyone else to be there to assist us. We try to assess what our needs will be in both the short and long terms. Then, we try to cover our needs for the contingencies. Who knows how successful we are at it…only time will tell. In the mean time, we are living life to the fullest and looking forward to many more tomorrows, without any fear of aging.
Kathy & Paul live in Gresham, OR. Kathy is a Director of USACFA. Her email adress is: krussell@usacfa.org