Interview with Sharon Dale Stone
author of A Change of Plans

The eleven stories in this collection are very personable. Each one brings out the personality of the individual woman and highlights different aspects of her experience. As a reader, I feel the women are speaking to me as though we are good friends. Their stories give insight into the practical issues of living day to day with disabilities. Even more moving are the ways they got through it all, recovering and reclaiming their lives. They each show incredible courage and strength, as well as humour and creativity in dealing with such a tremendous upheaval in their lives.

Q Can you describe what a hemorrhagic stroke is? How is it related to heart stroke, or is it?

A A hemorrhagic stroke is what happens when there is bleeding in the brain, and this is often, though not always, caused by a ruptured aneurysm. An aneurysm is a weak spot in a blood-vessel wall and it may be congenital (present at birth) or it may be an abnormality that develops as a person ages. Sometimes hemorrhagic stroke is referred to as a brain hemorrhage, or a cerebro-vascular accident (CVA). There is also increasing reference to a stroke as a "brain attack."

There is no such thing as a heart stroke. All strokes necessarily involve the brain

Q Your narrators had strokes anywhere between ages eight and fifty. How representative are these women of the larger population of women who have had a hemorrhagic stroke before the age of fifty?

A Since there's no central database and no research on women's long-term experiences, it's not possible to know how representative they are. Hemorrhagic stroke can have any number of consequences and there's no way of knowing what all the potential consequences are. What I can say is that they are NOT representative of women who have been left with impairments so severe that they need ongoing assistance with personal care activities. They are not representative of those who aren't able to accept that life with impairments can be a good life — those who suffer from treatment-resistant depression or who manage to successfully commit suicide. Nor are they representative of those who survive a hemorrhagic stroke with no impairments at all, or those who, because they have no residual impairment, do not consider their experiences to have lasting psychological impact. They are not representative of those who live in abject poverty. As well, the women in this book are almost all of European descent, and almost all heterosexual. Beyond these qualifications, though, I suspect that these women are broadly representative of those who were left with physical impairments not severe enough to rob them of the ability to care for themselves and those who were left with cognitive impairments not severe enough to rob them of the ability to read, write, understand speech, and express themselves. The women in this book are married, single, and divorced. Some have children, some do not. Some work outside the home full-time, others are unemployed. They represent a wide variety of social locations and experiences.

Q The narratives are such a friendly conversation between you and the women about their stroke experiences, how they recovered and reclaimed their lives. How do you think women survivors of stroke — especially those with invisible disabilities — will react to these stories?

A I hope that these stories will be empowering for women survivors of stroke. That's why I put the book together. I feel confident that any woman who has survived a stroke and been left with impairments will find something in these women's stories that will resonate with their own experiences. I think this will be especially true for those with invisible impairments, because these are the impairments which are surrounded by silence in so many ways, which leads so many of us to feel inadequate, and we can even doubt our own bodily experiences. I hope that these stories will let women know that they are not crazy or lazy, and they are not alone in what they experience.

Q What are some of the most common after effects of a stroke? You mention two that appear in most of the stories: fatigue and memory loss. Are there others as well?

A Stroke affects everyone differently. While most of the women in this book talked about fatigue and difficulties with memory, not everyone did. While these difficulties are common, I don't know that I would want to say whether these are the most common after effects of stroke. Actually, I would say that a more common after effect is one-sided weakness. It's rare to survive a stroke with no one-sided weakness, although the degree of weakness can vary tremendously. I also suspect that mild cognitive impairment is very common, though here again I wouldn't want to say that it is most common.

Q What comes through in these stories is the remarkable inner resources the women draw on throughout their recovery that help them learn to walk again, how to get dressed, reclaim independence and self-esteem. Some women, it seems, also have to deal with depression. What resources could help those women cope better with depression?

A It's important to point out that not everyone in the book talked about depression, and even most of those who did talk about depression were able to move beyond it after a while. It seems to me that for some of us, depression is a way of mourning our losses, and maybe even a necessary stage to go through before we can get on with our lives. Without doubt, though, supportive relationships are essential to allow us to move beyond depression. I think the evidence is clear that in the absence of support, depression can deepen and lead to thoughts of suicide. For anyone coping with depression who doesn't have at least one person in their lives that they can call on for support, I think they should look as hard as they can for others with experiences similar to theirs. If there isn't a face-to-face peer support group that they can access, there are incredible resources on the internet, including web-based support groups. If they can afford it, counselling would also probably be very helpful.

Q Does this remarkable inner strength speak to you as the author and as a survivor?

A Yes, the inner strength of these women resonates with my own experience as a survivor, and as an author I was not surprised to find everyone showing inner strength. At the same time, I have to say that I don't think there's anything remarkable about our inner strength. No one knows what they can cope with until they are actually faced with a situation, and I think it is the exception to find someone who lacks the inner strength to move beyond stroke. The vast majority of us just do the best we can with what we've got.

Q Are women generally told how hard it is going to be to recover and that they might not recover all their functions? Do women believe what they are told, and if not, why not?

A Some women were told right away how hard it would be to recover and were even told that they would not recover. Two of the women were even told they should move into a nursing home. Yet none of these women with a gloomy prognosis believed what they were told. I suspect that's part of the reason why most doctors and rehabilitation professionals don't give a gloomy prognosis — the women aren't willing to hear it. Beyond that, it's really not a good idea to give predictions about what will or won't happen, because there is truly no way of knowing. Stroke affects everyone so differently. It's not possible to predict what will happen, even when there has, in an objective sense, been extensive damage.

Q All of the women in these stories mention experiencing some sort of indignity after their stroke at the hands of nurses and doctors while in hospital. What can be done about this? Is there a way to push for greater sensitivity training around the needs of stroke patients?

A Education! I can be flippant and say that medical professionals should be forced to have the experience of being patients themselves! More realistically, I think that they should be required to study and take seriously the emotional experiences of their patients or clients. There's a growing literature on this, and my book is another contribution. I would also point out that the problem is not restricted to stroke patients, but is pervasive. Anyone with a serious and lengthy illness has a story to tell about indignities. Nurses are now taught some of this information during their training, but they can also find it difficult to apply their knowledge in respectful ways, mostly because lack of funding for staffing hospitals sufficiently means that they simply don't have the time to be as caring as they might want to be.