Support Groups: Tips and Traps

A big problem, if you're diagnosed with a serious or chronic illness or a loved one is diagnosed, is getting past the isolation to educate yourself, learn coping skills, and eventually, formulate a life that includes (but isn't defined by) illness. Good support groups are like the running water in this photo of a brook in winter. The water doesn't change the reality of the cold or the ice on the branch, but its motion, its presence, reminds us that the branch isn't alone in the cold... life and life's activity is still there.

The goals, structure, and pros and cons of support groups vary depending on the medical condition that brings people together, whether the group participants are the patients themselves or friends or family, and how good the group moderator/facilitator is.

If you are inquiring about a support group, you want to make sure you find the group that is most appropriate for you. For instance, get specific information about the following for possible groups: who runs it, the condition around which it is based (if it is cancer, for instance, is it a certain type of cancer, cancer in remission, incurable cancer, etc.), participants (patients, family members, spouses or significant others, children, or nonspecified), and the background and experience of the moderator, both in terms of ability to run a support group of people who are there by choice and whether they have direct experience with the condition in question.

I have participated in three support groups over the years: one for people with epilepsy who were working or had been employed, one for couples in which one member had epilepsy, and one for parents of children (of any age) who had a mental illness. All three were very helpful, and each was very distinct.

The first two were run by the state epilepsy foundation, were held in a city from which many possible appropriate participants could be drawn, and were moderated by an experienced social worker who had epilepsy herself (the same person, actually). The groups were focused in their makeup and goals, and the moderator was very good at enabling people to vent, rage or weep, but know when to gently stop someone so someone else could respond or have a turn. The moderator was like a good school teacher: Everyone had a chance, no one hogged all the time, and each person was kept on topic and polite in language. The moderator was gifted at seeing when a person's line of thought was going somewhere intensely personal and having them pause to see whether they wanted to continue or not.

The couples' and parents' groups differed because at least some of the participants did not have first-hand knowledge of the condition at hand. Indeed, the parent group had a very broad common base, mental illness, and the moderator was quick to point out that every person's inputs had value but one person's experience might have little or no implications for another family's experience or possible responses to a problem. On the other hand, the parents' group was the most polite, with people quick to empathize over someone's problems either medically managing a child's problems, handling the family/social/educational aspects of the illness, or accepting their personal limitations, and (I thought) very respectful that what was said at group was said in confidence.

Having noted all those things, I would not personally say anything in any group that I couldn't accept being repeated and attributed to me (or my family). In my case, because I had been a doctor before I had a head injury and developed a seizure disorder, I also had to avoid giving medical advice but not keep silent when someone said something that was factually wrong. I learned a lot of diplomacy in group, including the ability to see and accept when someone wanted help and when someone didn't really want help or advice, but simply the chance to vent their feelings without fear.

I am a firm believer that support groups can be immensely helpful at filling needs that medical care itself cannot fill, but only if they are well run, appropriate for your personal situation, and you are willing to make the commitment to show up, share honestly, listen thoughtfully, and respond thoughtfully.

Angels: a dog, a lot of people, and a revelation

It is December. For many that means there is music everywhere with lyrics about angels singing about peace on earth, good will among mankind. Some people believe there are actual angels, God’s intermediaries with us (from the Greek angelos, messenger), other people like the idea of angels, and others, well, I don’t know what they think.

I was not thinking of angels last Thursday, when the alarm went off and I had to get up and take Tucket into Boston for his therapy dog shift. I was thinking of caffeine. But then, he began to whine when I picked up the canvas bag with our volunteer things in it and the tail went furiously when I said it was time to “go visiting.”

I was in a good mood by the time we met people in the garage and kids and adults said “Ooh, look at the dog” and people began to pet Tuck. It took awhile to navigate through the lobby, decorated with tastefully winter-themed, but not too religious, ornaments and streamers. The hospital has over 1000 beds and numerous outpatient clinics and treatment areas, and it seemed a lot of people were working there, visiting, or had an appointment. I had to steer Tucket carefully among the crowds, a task made harder by people changing directions to come greet him.

We have been visiting since this summer, and I have become accustomed to staff saying “hello, Tucket” when we get on an elevator or arrive at the nurses’ station on an inpatient floor. Last Thursday there were joyful visits, some tender visits, and a few with tears. Tucket is gentle and attentive with everyone, and he seems to know when to move from one person to another, whether it is from child to parent, from employee to employee, or person to person in one of the waiting areas. The doctors, nurses, and other staff in the pediatric intensive care unit love him, and he them. He turns right coming out of the elevator every time, waits for the automatic doors, and cruises straight to the center of the workstation, where staff greet him, rub his ears, and tell him how wonderful he is.

Last week he was tired after the ICU, and the elevator that came first was nearly full. I said we would wait for the next when the group said oh no, there was room. So they made room for us, and while the elevator went down to the lobby people petted him and asked his name, and slowly pressed against the walls of the elevator and each other so he would have “enough room” to breathe.

I watched staff, well dressed visitors, and a few tired people who may have been there for treatment do the improbable: press against people they didn’t know in a crowded elevator in a city hospital at the beginning of flu season, and there were no complaints. There were smiles everywhere, strangers smiling at one another, at my dog, at me.

And then I had my Christmas revelation. There are angels all around us. We just don’t see them most of the time. We are all messengers, and like the people last Thursday, we can carry a message of peace and good will. Indeed, we can carry it all year round, just like my gentle, love-hungry dog.

Elizabeth Coolidge-Stolz (c) 2010

Three tails of the lovely Lily

I. The Clumping Cat Litter Incident: first written autumn 1998

We always had litter boxes in the basement. It is sunny and opens onto the yard. First Arthur and Dax, the cats we had when we bought the house, and then Rufus and Jacob, who came after those first children died at 15, loved the basement.

For Rufus and Jacob, it was a dog-free zone. Teddy never showed interest unless Jeff or I went down.  After Joseph learned to crawl, Teddy wouldn’t let him near the door from the kitchen to the stairs. All of Lily’s first winter with us, she had no interest in the basement, either.

Then spring came, and Lily realized the quickest way to the car was through the basement. She set up residence on an old couch and discovered the litter boxes. I realized she was eating cat poop when I saw litter on her nose. We placed a child gate at the top of the steps. However, she had the spine of a limbo dancer and it was impossible to keep the gate low enough to keep her out and high enough that a Persian at full speed could get under it without the occasional herding beardie bearing down on him. By summer, I had given up, taken away the gate, and started cleaning the boxes several times a day. Lily remained Princess Litter Nose.

One day Lily came upstairs with litter on her nose, and I cleaned it off. A bit later, while we were eating dinner, she suddenly looked distressed and began to heave and sway as if she were going to vomit. Instead, she gagged and I realized she was choking. I was standing up to try the Heimlich maneuver on her when she made one horrendous wheezing sound and was fine.

We bought a cat door, which Jeff’s father installed for us on his next visit. Joseph had never had interest in the basement, but the permanently closed door was an insurance policy for him, too.

Thus was I saved from the challenge of writing a tasteful obituary about a little girl who choked herself to death on clumping cat litter.

II. Lily at Twilight: First written autumn 2008

On New Year's Eve 1999 I took Lily for a walk at dusk around a reservoir near home. It was biting cold but with no wind, the sky darkened slowly, and you could identify homes on the shoreline by twinkling lights in windows. She was two years old and dragged me up the steepest parts of the path, which wound through four-story-tall pines. I wrote a poem when I got home, but somewhere in the years it has gotten lost. Not the memory, though. I will have that forever.

I will not have Lily forever. Even last winter, when at 10 years of age she tore a knee ligament running on ice in the backyard, the veterinary surgeon twisted her this way and that, said she wouldn't have guessed Lily was more than 6 or 7 years old based on her arthritis, and told us to repair the knee. Lily, who had the superb floating movement of her mother and father, started to flow across my yard again.

In January of this year she had a urinary tract infection, a first but not a big thing. Then it recurred. In September I realized she had begun to snort more, as if she were trying to clear her nose. She failed suddenly, developing nasal discharge that neither she nor I could keep clear and began vomiting up stomach content and mucus. After three days and roughly half the cost of my first new car, the prestigious animal hospital in Boston told us what is wrong: Lily has nasal cancer, and it has advanced, eating through the bone of her nose as it has grown. Underneath her coat, she has gone from a too slim 36 pounds in January to a gaunt 34 pounds.

Other than milking it to convince us she should sleep on the bed rather than in her crate, she seemed much better when she came home, reestablishing her dominance over her loving but clueless brothers with a growl here and a bite on the nose there for taking a bully stick she had discarded.

Yesterday her breathing deepened, and she was slow to get up. Last night, I hand fed her dinner (to keep food in her stomach I've gone to five small meals a day, which she gracefully accepts like the queen she is) and saw blood coming from her right nostril. After a friend came to stay with our son, we went into Boston with brothers in tow. No one, except perhaps Lily, thought she was coming home in a crate in the van.

She fooled us. Her breathing was, and is, very loud, but I understand why. No air passes through her nose anymore, just her mouth. The emergency vet marveled at the wagging tail and the tongue in the ear as she sat with Lily on the floor and examined her. I understand why Lily takes small bites and spaces them out. She cannot breathe and eat at the same time. I cannot understand how she can breathe and kiss at the same time, but she has always been a kissing flower.

The vet did not offer us the option of giving Lily her final peace. She said Lily was oxygenating well, fully functional, and had attitude. She suggested we take her home and consult her vet today. So, it is morning but we are in twilight. I will never forget the three hours we were at the hospital or that her half-brother Tucket lay down and put his head on the vet's lap after Lily kissed her and moved to the other side of the room lest the vet want to feel her up again. I will not forget Angus, who gets anxious in veterinary clinics, sitting like a statue next to Jeff, licking his neck.

Enjoy your days and your loved ones, for you never know when twilight will come.

III. Lily: First written winter 2009

A year ago today the Earth paused for a fraction of a second before picking up its rotation: Lily died. I woke up to blood around the bedroom, some of it so abundant it had mounded on the carpet. It had to be Lily. Her front feet were red, but she wagged her tail and wanted to go out to the backyard, where she put a plastic hot dog in her mouth and whacked her brother over the head with it. Then, she sat down and panted, and I knew we had run out of time.

The lobby of the animal medical center was full of volunteers selling holiday gifts at one table, with a woman making beautiful all-natural wreaths at another. I tried not to cry while I asked for an emergency evaluation and told them Lily had been diagnosed with cancer in September and her file should be available. We got the same young vet who had seen Lily in October.

The Lily I took to the hospital in December moved slowly, leaned against me, panted more openly. Yet she recognized the vet, who took one look at the congealed blood I had brought along in a whipped topping container left over from Thanksgiving and said, "Oh my."

We waited in an exam room before another vet came and said the hemorrhage was major and the only question was how long we would wait for the next. Lily was very calm, even when they put in the IV catheter. I sat on the floor beside her, the vet in front of her. I thought she would want to sit or lie down, but she stood and looked at the vet, even when I put gentle pressure on her back. Then, at the last moment, she turned her head quickly and kissed my face. The needle went into the catheter, and I had to quickly put my hands out so she didn't hit the floor when her legs buckled.

The time after that was odd and in slow motion. I stroked her and apologized she had mats, told her I loved her, apologized for pulling her slip collar over her head awkwardly, and realized I was talking to the ceiling as much as to her body. On my way out, the vet and two volunteers from the ornaments table hugged me, and the wreath lady gave me a bouquet of roses on behalf of Lily. One dried rose remains.

For the last month of her life I mourned that cancer had ruined her face. The tumor grew outward, through the bone, and mangled her muzzle. I tried to puff up the white hair so it wasn't obvious she looked like a Klingon, but she did rather than the mirror of her beautiful mother.

Now though, a year later, I can't remember the mangled face. I remember her luminous dark eyes and the fact that a girl who rarely did as told (her attitude was more ‘Leave a message and I'll get back to you’) stuck with me patiently at the hospital. I remember that her last act in life was to kiss me, and I am so grateful I had Lily, still have Lily, perfect and at peace in my heart.

Elizabeth Coolidge-Stolz © 2010

Essay: My Dog, My Son, Myself

Angus notices everything. He was the puppy who came out the morning after a rainstorm and realized one of dozens of twigs was an earthworm, that the sound of water at one place on our street signaled a storm drain he could not see. Although Angus has done better as he has matured, he still gets overwhelmed sometimes when there are too many stimuli, particularly sounds from sources he cannot identify.

In the woods, he is a different dog, confident, fast, smelling and marking and joyful. He is the dog I see at agility lessons. I love the woods, the sounds that reflect time of day, turn of season. One day this spring, we went into a forest and I heard a new sound, a gentle peeping. Frogs had come out at a shallow pond. The sound stopped as we passed, and I wondered at the lives in this forest that go on or end every day, independent of our existence altogether.

Last weekend I took Angus to a trail in another part of the same forest. I heard the sound, but it was following Angus’s gaze that I saw the squirrel in a tree. The squirrel watched us and ate a pinecone. Angus’s tail wagged. Knowing Angus, who has a gentle heart for skunks, birds, toads, and the lone snake that made our acquaintance, he wanted to say hello.

After several years of agility-based lessons with a kind and very skilled trainer, I am better with Angus. I read his body language better, and I prevent problems more often. When he does balk at a sudden sound (try not jumping when you hear a gunshot in the forest), I am more patient, prepared to ignore him for a few seconds while he collects himself, then saying “Let’s go” cheerfully or just making a clucking sound and starting again. I have learned how to give him the chance to help himself.

My first lessons with patience under pressure came with Joseph and the help of his kind, world-class psychiatrist. Joseph was diagnosed with autism when he was two years old, and he started having panic attacks when he was three. This was years before Angus came, Joseph was my son, and I was not effective. I would plead with a minimally verbal child and fall apart in tears almost as often as he did. But with medication, behavioral help, and time to mature, Joseph got better. He found his way.

There are times when I do not have the patience or concentration to deal with a possible Angus breakdown, and I do not take him risky places then. Joseph likes to have the TV on at the same time he plays his iPod, and sometimes I leave the room because he may be able to deal with the noise, but I cannot.

When I watch Angus or Joseph struggle, I remember that I had panic attacks frequently in the first year after my head injury, 25 years ago. Most of them were in relatively busy places, the hospital, the mall, the supermarket. I have vivid memories of suddenly going into a ball with arms over my head at a supermarket about a month after the accident when the bright lights, overhead music, and busy criss-crossing of loaded carts were just too much. A woman turned the corner, nearly bumping me, and I went down as if artillery had gone off.

My dog has wonderful strengths, but he will always have weaknesses. Despite his athleticism and love of wild country, he will never be a dependable hiking companion. He is the most affectionate dog I have had and he sticks near Joseph regardless of how agitated Joseph gets, devotion to his boy outweighing his anxiety. Angus is a great dog.

Joseph loves to read, loves to sing. He has grown into a smiling, joyful child who draws people to him. He will never graduate from high school or go to college, but he will have a loving life and a positive impact on people who know him.

I cannot cure my dog or my child. I could not cure myself after I had a head injury and developed epilepsy. There is much in life we cannot cure, cannot undo. But we can heal, can come into balance with ourselves, can discover the best life we can live. My dog is doing that, my son has done it, and, perhaps, I have as well.

Elizabeth Coolidge-Stolz

Mental Illness: we have met the affected, and it is us. Part II

When I was in medical school, a psychiatrist once said it is impossible to help someone with any form of mental illness if they do not seriously want help. I knew that because I had delayed seeing a doctor in college when I was depressed and had then found it almost impossible to spit out that I felt sad and tired all the time. It sounded defeatist, if not pathetic.

If you find your mental state, be it mood, thought pattern, intellectual abilities, memory, or other function changed for any amount of time in a way that is distressing and/or  people ask you if you're all right, consider talking to someone. If you are depressed enough you think about dying, certainly if you think about killing yourself, please get help immediately. Often you can make an anonymous phone call for first assistance, and you are not alone. As I found when I checked statistics to write Part I, mental illness is VERY common in every country.

Professionals who might be appropriate first people to talk with are not only psychiatrists, other physicians, and psychologists, but also nurses, social workers, clergy, teachers, and counselors. People who are already involved with the criminal justice system can talk to probation officers of other officials. If you don't get a listening ear and kind heart with the first person, try another. If you are truly afraid for your safety or that of someone else, go to the nearest emergency medical facility. Please.

It can be just as hard to watch a loved one or friend who seems to need help (or clearly needs help) and figure out how to get them effective care. If the person is rational, gently asking how they feel, mentioning you have noticed a difference in them and are worried, or directly asking if they would see someone may be good approaches. Think how well you know the person, what your current relationship with them is like, what their attitude to healthcare is, and how accessible healthcare is for them.

Although major depression can be periodic, the other most common forms of mental illness, bipolar disorder, schizophrenia, obsessive-compulsive disorder, and their close relatives are usually lifelong conditions. This is why healing from within, recognizing and managing positive dreams and abilities as well as medical care and objective measures of health, is so important in my opinion, and one reason why I founded healingwoman.net

If you have any of these conditions, and my son has two in addition to autism and other medical challenges, you need to find a life that includes your condition but isn't defined by it. Good healthcare, support groups with an experienced mediator, and educated/supported family and friends can help. If you have a loved one with mental illness, consider what resources are available to you in terms of support groups, volunteer-run organizations, hospital-associated groups or organizations, or religious supports. Professional counseling can help. (Some mental health resources, as well as ways to find help, are on the healingwoman.net website at Food for the Mind and Resources. Just check.)

Remember, especially if your loved one is diagnosed at a young age, that their needs and yours may change over time. I needed and benefited from a support group for parents of children with mental illness when Joseph was five or six. His behaviors were unpredictable and combative, he was distressed most of the time, and we were already involved with intensive medical care and educational supports. I found it a relief to talk with other parents (mostly mothers), finding I wasn't alone in wanting to do more or feeling guilty I wasn't more effective, angry that we had so many problems in public places with people staring, saying cruel things, or suggesting I keep my son at home. After several years, my husband and I had settled into a steady period and the time involved to attend group was more a negative than the positive it had been. That's ok. Change happens.

What should stay the same is that you love yourself, you love those affected by illness, and you do not give up, even if sometimes you have to admit there is nothing you can do to control things, either the illness of an adult or their willingness or ability to get or continue treatment. What you can learn to control is your feelings about their illness, your ability to see the rest of their life in perspective, and the ability to make sure you live your life as fully as possible.... sometimes remembering that healthy family members need attention too.

Finally, remember some tips for talking about mental illness, whether you are the patient or it is a loved one (and if a loved one, whether they are with you when you are talking about them). The affected person is neither good nor bad because they have a medical condition. They have a medical condition. Separate talking about the person from talking about the symptoms of the disease or the problems caused by it. Understand your limitations if you are not the patient and the patient is a mentally competent adult. People who are having psychotic episodes due to schizophrenia or bipolar disorder are psychotic: They can't be rational. The ability just isn't there at the moment.

Similarly, people with personality disorders (many of whom were the difficult, eccentric relatives of generations past) often cannot see that they have a problem. They see other people and circumstances as the problems. You may never get them to really want help. If that's the case, you need to manage your life and do what you can to help optimize theirs.

Most of all, talk, even if it is whispering out loud. The same psychiatrist told me that silence can be a prison. When someone can talk about illness, whether theirs or someone else's, they can begin to heal.

Mental illness: We have met the affected, and it is us. Part I

When I was a child, I didn't understand why some illnesses were discussed in normal tones and others in whispers. I remember my mother asking disgustedly once, "How can someone still think cancer is contagious?" but I knew there were things my family didn't talk about. I had my first episode of depression in college and found I wasn't the only family member to have it. With gentle asking, I found many friends who were battling it or had in the past, as well as other families that had multiple members affected. Almost none of those families talked about it. The stigma was in the whispers and the silence. Depression was not a nice disease.

Depression is a huge problem. The World Health Organization concludes depression is either the second or third leading cause of disease burden in the world and is number one in high-income countries. Furthermore, depression, bipolar disorders, schizophrenia, and obsessive-compulsive disorder account for four of the world's top ten causes of disability.

It is time for embarrassment over mental illnesses to be eliminated forever. Mental illness, disease that affects mood, thought, or behavior because of chemical imbalances in the brain, is illness. It is not weakness, it is not evil, it is not poor parenting. It is disease.

I should have known this from my time in medicine, that patients are people first, but I didn't really understand either the impact of mental illness or society's typical response until my son was a toddler. Joseph's most apparent problem is autism. However, he also has an atypical form of bipolar disorder, anxiety, and obsessive-compulsive disorder. He set a dubious record by being one of the youngest children seen at one of the most respected child psychiatry clinics in the world.

I learned lessons in the waiting room, looking at anxious children, tired parents. I remember one child begging his mother to ask the doctor to call his school so he wouldn't be expelled, saying it was so much better than the last one he had been thrown out of and he would try harder to sit still in class and not to blurt out his thoughts. I watched him a little more and realized he had Tourette's syndrome, a neuropsychiatric condition typically marked by repetitive behaviors and repeated vocalizations, often socially inappropriate ones. But mostly, I saw a little boy in pain over things he could not control. I watched my four-year-old running around the waiting room with my husband tailing him, responding to his anxiety by turning his hands into elevator doors, opening and closing them and saying "ding" like a bell. When he panicked, he would bolt toward a real elevator (his obsession) and we would chase him, running past people who stared at us as if we were all contagious with something.

Joseph is now a teenager, and with medication and behavioral management, he handles his anxiety better and bolts less often. But I sometimes see signs of the elevator obsession. I still see stares and disgust, if not fear, in some peoples' eyes when he runs into a fast food restaurant, bumps people on his way to the counter, and delightedly asks "What is the toy today?" Usually, people then notice that he walks awkwardly, that he speaks with a slur, that he is smiling broadly, and they relax a little. But not always.

There is no neat division of WE, the normal, and THEY, the affected. We are the affected, and we need to learn more about mental illnesses (diseases of brain function) and how to respond positively to people who live with them. In my next blog entry, I'll talk about educational and research organizations, support groups, and other ways to either live better with mental illness or help a loved one live safely and fully.

Essay: Meetings and Partings

Thanksgiving has come, which means in our home that Christmas is coming. My husband has already brought down the box of holiday books and videos, and my son will shortly be throwing things all over the family room floor rediscovering the joys of Christmases past.

One of his favorite movies is the Muppets’ Christmas Carol.  It is also dear to me.  In one scene, Bob Cratchit (Kermit the frog) sits at his kitchen table and looks around the table slowly, at the faces of his wife (Miss Piggy) and each of his children. Then, and only then, does he look at a crutch propped in a corner of the room. His family sits silently, waiting to see what he will say.

He says that life is made up of a series of meetings and partings and that his family has experienced their first parting with the death of Tiny Tim. He says that it is Christmas, and they are gathered together, and he is thankful for all of them. In his quiet voice, he reminds them that they are precious, each unique, and that --- perhaps--- the best time to appreciate them is in the wake of a parting, a loss.

I watch the movie every year, but I haven’t watched that scene in years, since my father died. Its memory is fixed for me (and perhaps inaccurate), but its significance is unchanged.

We gather for holidays as family, whether established by blood or love or both. Over time, the faces at the table change: There are no meetings that will not eventually result in partings. This is the way of things.

Yet my memories remain, of my father, of everyone else I have loved and lost and will hold forever in my heart. Rejoice in the faces at your table. Remember those who are gone. Love moves inexorably from one year to another, one beloved to another, but it survives. Love is the glue of time. It holds us together.

Elizabeth Coolidge-Stolz