Getting the Support You Need

Kathleen Flynn

Fall 1996

Imagine you arrive home from work one day and you notice your favorite fruit tree is laden with fruit. Upon closer examination, you see one of the limbs hanging so low with fruit that it looks like it might snap. Immediately you run to the garage, grab a tall piece of wood and use it to shore up the limb. Without hesitation, you have provided the support the tree will need to survive the season intact. Support in our own lives can be equally critical. But sometimes we feel hesitant, the act of support (either getting or giving) feels awkward, forced, intrusive, elusive or simply unavailable.

When my son was born with cystic fibrosis, I was hungry for information, coping strategies, understanding and "normalcy." Even though friends brought dinner and offered babysitting for my healthy child, I was still feeling singled out to carry a burden I didn't think I could bear. This led to feelings of isolation. I felt trapped somewhere between panic and despair. On a whim, I attended a conference focused on coping with children with disabilities. It was a life-altering experience. In one short weekend it became painfully obvious to me what support really was, why I needed it, what I could and could not expect from it and how I could hope to get through painful times. At first when I looked around at the roomful of strangers (it was a large group of 50 to 60 people, both parents and providers of children with all kinds of disabilities) it wasn't immediately obvious that we had anything in common. But in time, a commonality evolved in the group. Parent after parent spoke of the devastating feelings surrounding their child's diagnosis and other painful losses as the child was growing up. But for every loss, there evolved some hard-won victory for the child or some parental gain either in personal perspective, emotional or spiritual growth, or in a reaching out (like our fruit tree) asking for help with the burden. Don't misunderstand me. Any parent or provider in the room would have traded in any child's disability for health, given the opportunity. But many seasoned parents of "special needs" kids admitted to a positive side, an awakening or enlightenment. From each other and from these children, parents and caretakers were learning to look at life differently, to let go of certain expectations and illusions, to communicate more deeply with spouses, friends and health-care providers, to become advocates for these children, to live with and manage the fear and anxiety, to celebrate even minor victories and to enjoy and play on the good days.

A speaker at the 1996 CFRI Conference, Dr. Ken Moses, a psychologist from Chicago who specializes in families with special needs, emphasized over and over that different people will deal with crisis differently. For some, it is completely self-evident that they need help. For others they are not even sure they have a problem, never mind whether or not they feel they can seek help for it. Some people simply withdraw or go numb. While support can be encouraged, it should never be forced. There are people, who for whatever reason, cannot face the problem. Many care providers at the conference spoke angrily of parents who underreact to a crisis or who are in denial about the severity of the problem. Our facilitator urged us to first, acknowledge our own panic and helplessness in another's situation, and second, to look on another's denial with compassion. He described denial as the requisite amount of time needed to gain the inner strength and outer resources necessary to honestly face a problem. Without denial, one might potentially face a psychic break.

But for the individual who does want help, support groups can offer tremendous relief. Attendees can share common experiences, gather medical or legal information needed to deal with particular circumstances or develop coping strategies. Others might learn to express difficult feelings in a safe place, reassess inner resources, learn of outer resources for particular issues, develop friendships, and ultimately, recognize that they are not alone. What I came to realize (and this was perhaps the single most healing insight I received) was that most people on the planet-parents with chronically ill children notwithstanding-were struggling with difficult issues. It was only my isolated perceptions of others that led me to believe I was completely alone during a painful time.

If you feel the need for a support group, become proactive in seeking out other parents with children having CF, or teens and adults with CF. Inquire at your CF treatment center to see if there is a local group in existence. If not, ask your clinic social worker or nurse to give your name and phone number to other local parents with CF children of similar ages or other adults with CF. Better yet, create a flier expressing interest in a support group and ask if you can put it up at your CF clinic. Leave copies of the fliers in the office for the nurses and social workers to hand out when others express interest.

If you live within driving distance to the CFRI office, come to our quarterly support meetings held on Saturdays (early afternoon for parents, grandparents and family of CF children, and late afternoon for teens and adults with CF). These are facilitated by Dr. John Bartelt, Director of Counseling and Rap Sessions at our CF Family Retreat. Even if you live further away, plan on attending the Annual CF Conference and/or the CF Family Retreat. You can get any kind of support you need: intellectual, emotional, social or physical. Even if you can't afford to attend every year, one conference or camp session might carry you for several years. It might also give you ideas on how to develop more local support in your own community. Many participants raise money so that they can travel thousands of miles to get to these events because they are so important to the quality of their lives.

If it is impossible for you to travel and you are not interested in a support group, consider another medium. If you can get access to the Internet, you can join the CF mailing list known as Cystic-L. Cystic-L is made up of people from all over the world who are interested in discussing various topics related to cystic fibrosis. Many people communicate about CF, medical treatments, new scientific developments, living and coping with chronic illness, and emotional struggles and strides. Many new friendships have developed from this list. Each subscriber has the opportunity to contribute any material. You can also correspond personally with another member. If you have any questions about this process, please call Scott Wakefield (415) 856-3838 or direct them to you service provider. (See the article, "Communicating about Cystic Fibrosis on the Internet," in CFRI News, Spring 1994, page 7 [of hardcopy].)

If the Internet is not your thing, consider other sources. There are plenty of books available which deal with personal crises, parenting special needs children, living with disabilities and medical advocacy. (Living Through Personal Crisis, by Ann Kaiser Stearn, The Patient's Advocate, by Barbara Huttmann, R.N, After the Tears - Parents Talk About Raising a Child with a Disability, by Robin Simons are just a few. Also see the article, "Some Books for the Journey".) Read everything about CF that you can get your hands on. Call CFRI, (415) 856-0546. We have videotapes of the Annual Conference if you cannot make the trip out to Palo Alto, CA. Just immersing yourself in the study of the disease and hearing from people who either have CF or are living with it in their families will help you to feel more connected. It may lead you to seek out other sources of support. Every person must find their own way to feel involved or connected.

The important thing is not to hesitate. Shore yourself up in places where you feel most vulnerable. You don't have to carry the extra weight alone to the point where you feel you might snap. Just as we would not judge the tree for not being able to carry the weight of her branches, don't judge yourself weak for not being able to bear your crisis alone. There is so much fruitful gain to be had from a little extra support.

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