What the word stroke means to me

To mark Stroke Awareness Month, we invited Cleo Hutton (Striking Back at Stroke: A Doctor-Patient Journal and After a Stroke: 300 Tips for Making Life Easier) to impart some of the wisdom she shares with people who recently have had a stroke.

For me, a 16-year veteran of stroke, the word stroke has taken on meaning beyond the medical definition. The word also describes our new life after being sent home from the hospital, when we must move from patient to person again and face the realities of living with stroke.

For me, this definition of stroke includes:

Strength

Time

Rehabilitation

Opportunity

Knowledge

Environment

Strength equals empowerment, choice, enthusiasm and hope. You may at first feel powerless as your body tires easily. The words power, choice, enthusiasm and hope may feel empty, as if they are not a part of your vocabulary after a stroke. But your inner strength shows in the first choice you have to make—to accept that you have reached a “plateau” in healing or to gather the will to overcome this new obstacle. As stroke survivors, we may have known that life isn’t fair, but stroke has certainly driven the point home. We grieve. But what we do after that is our making or breaking. We don’t have to go through the recovery process all alone; we choose to have our loved ones surround us with support, boosting our strength, and we are grateful for their concern for us. We hang on to hope for a better tomorrow. We are enthusiastic over our accomplishments.

Time is necessary to heal, evaluate and learn. These three activities do not necessarily happen in this order, but tend to ebb and flow. We slowly begin to learn all we can about our particular stroke and the parts of the brain affected. In doing so, we determine our strategy of compensating and how to best use our stroke-affected side so that other areas of our brain begin to take on new adaptive roles. In time, we begin to learn that anger can be our friend. Sometimes we get so angry we learn to do a new task no matter how long it takes! It is anger’s cousin, rage, we want to stay away from. In time, we learn to be our own best advocate. In time, we realize our limitations while continually striving to improve.

Rehabilitation will be ongoing. When we begin to slowly return from patient to person we realize that physical therapy equals daily exercises we perform at home. Vocational therapy involves our daily tasks such as bathing, making the bed and preparing meals. Recreational therapy now involves getting out into the community again. Emotional therapy includes family intervention. In time, we realize that stroke has affected each family member and that it is our responsibility to support them as well. The rehabilitation methods we began learning in the hospital will last forever as we become skilled at adapting to a new lifestyle.

Opportunity! Sometimes we have to knock on many doors to make this happen. Change is difficult. Again, we have a choice: to look at life as a reason for depression or as an opportunity. Among the many challenges are opportunities for growth in our spiritual, educational and personal lives. We may choose the opportunity to slow down and enjoy every day. We may choose the opportunity to learn a new skill. It is in the challenges we face every day that we find opportunity to grow into an even better person than we where the day before. Rather than handicaps, we choose to view opportunities. We slowly begin to shift our focus away from our stoke deficits and toward our assets.

Knowledge helps us to adapt to different ways of performing tasks. Learn all you can about your particular stroke, what area of the brain was affected and its function. Knowledge also means that family dynamics require patience and understanding. Be kind to yourself and your loved ones. Relax, regroup and take one task at a time. However, be careful that your loved ones don’t smother you with good intentions! There are so many things we need to learn to do by ourselves.

Environment: Ours must be safe and uncluttered. Soon, we discover adaptive skills that assist us in working our body and our mind. For example, we learn how to safely test water temperature with our unaffected hand. We practice picking up coins from a table in order to get our affected fingers working again. We make sure that friendships fill our environment to help us heal.

Every facet of your life will change after stroke. It will be up to you to find your definition of stroke—your meaning of healing.

—Cleo Hutton

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