One of the things that I wanted this project to do was to give a voice to people who have suffered at the merciless hands of a stroke. It is such a devastating thing, and sometimes we need to send those stories out into the world so others can offer love and good thoughts, or to teach people what we have learned.
I am honored that people are choosing to share their stories here. They are hard stories, but it is so important that they be told. Today, Molly from Life with the Campbells tells her husband’s story. It is amazing, and painful, and wonderful.
We have all read about people who have survived disaster and triumphed. I always thought that those folks were strong, heroic and fine. I admired and applauded them. But I never suspected that I would be called upon to join their ranks. I had no faith in my abilities to overcome adversity. But in one second, my life turned upside down.
The phone rang in my office at four in the afternoon. I was wrapping things up, getting ready to go home, but I wasn’t in a hurry, because my husband Charlie was golfing, and on those days, I didn’t have to cook dinner. At the other end of the line was our minister. A member of Charlie’s foursome, he was warm and low key, but he informed me that he was at the emergency room with my husband, who had “fainted” on the course. But just in case, he thought that it would be wise if I got over there immediately. Just a “precaution.”
On my way over, I knew in my gut that something horrible was happening. I arrived in the ER and was ignored as docs and nurses scuttled around. Charlie looked normal on the gurney, smiling and saying to everyone the same thing, over and over: “Hi. I am fine.” He was obviously NOT fine, but I still knew nothing, and no one offered me any information. I felt like a bystander. But then one of the docs said to another something about “Stroke,” and I felt as if I had been shot.
Finally, someone took notice of me, the wife. A doctor turned to me and confirmed who I was. His face softened, and he informed me that Charlie had had a Stroke, and that they had called in a neurologist. They were rushing Charlie up for an MRI or CAT scan or something. I was in such a state of shock, I don’t really remember.
From that point onward, I was surrounded by a chaplain, who in her heart of hearts wanted to help me, other doctors, and some kind of “spokesperson” for the whole group, who tried to ease me into my new world of decisions, pending tragedy, and the need for strength. I was urged to get on the phone and call my family. I was told to get my daughters around me immediately.
In a daze, I called somebody. I still don’t remember who I called, or in what order. I remember trying to reach my daughter in Los Angeles, who was starting a new job that day. Her old employer told me not to worry, and that they would get her home to me. I then thought of my other child, a senior in high school. How would I tell her? How would I help her? How was I going to keep on functioning?
The next hours were filled with decisions about Charlie’s treatment. A new drug called TPa was available for strokes caused by clots, and Charlie qualified. His clot was completely blocking his carotid artery. I had forty minutes to decide whether to use the drug. TPa is a miracle drug, but has very high risks associated with it. By this time, with my younger daughter clinging to my side, we had to make a decision which might help Charlie, might not, and might even kill him.
We decided to go ahead. The drug was administered, and Charlie went immediately into the intensive care unit. Friends began arriving, and the rest of my life began.
Charlie’s stroke had been brewing for a long time. The clot that blocked his artery had been growing probably for years. The week before the stroke he had a blinding headache, which I now realize was a harbinger of the stroke to come. The damage to his brain was massive, and Charlie’s language and comprehension centers were gone.
As a result, Charlie had what is called “aphasia,” which has many forms. Aphasia is a general term for language loss. Charlie had more than one type of aphasia, and cumulatively they had two results: Charlie could say words very clearly, but they made no sense when strung together. He couldn’t understand what was said TO him, either. He was locked in a jumbled world in which everyone around him spoke a foreign language, and he could not make himself understood. He also could not recognize people, except for very close friends and family.
The doctors were of two minds. The TPa had not affected the clot, but it also had not killed him. One group of docs of gave up and told me to prepare myself for a life of care giving and learning how to interpret Charlie’s needs. Another group was very reassuring, telling me that in six months, no one but I would know that my husband had suffered a stroke.
With such polar advice, I was torn. I was battered. I was dead inside. This had l transpired over a period of 48 hours, and my mind and body were reeling. It was at this point that my daughters and I sat at the kitchen table, and I wondered if it would have been better if Charlie had died. I was fifty. He was fifty seven. How would we both deal with the years ahead of us? How could life be worth living if my husband couldn’t communicate? I thought about my charming Charlie, who loved people, loved “schmoozing,” and loved life, reduced to needing me to translate even the simplest things.
My twenty-three year old daughter said, “Mom, this is a gift.”
I clung to that. Through the weeks of rehabilitation in which Charlie and the speech therapist hacked their way to new pathways in his brain. Weeks in which Charlie used the “F” word more than any others. I held on to the “gift” through worries about finances, mounds of medical paperwork, and all the errands I had to run. The “gift” never seemed to materialize during those days of grief for the husband I had lost. For Charlie was gone. In his place was a guy I didn’t know, and sometimes didn’t even like. This man had no sense of humor, no gleam in his eye, and no depth.
The optimistic doctors were right, though. With extremely hard work, Charlie’s brain rewired, and speech and understanding returned. By six months, he could speak almost normally, and he could track conversations, although it took all his powers of concentration to do so, and he was exhausted by his efforts.
I was not prepared for stage two of the Stroke. As Charlie recovered and began to realize that his life was indeed not at an end, he experienced a transformation. He became giddy with joy, childlike in his appreciation of the world, and he literally bubbled over with enthusiasm. This manic personality was offensive to me, drawing attention to us in public, causing me embarrassment, and widening the gulf between us. I felt tremendous guilt. How could I feel this way? Why couldn’t I embrace the new Charlie? Instead, I lapsed further into mourning for the husband I had lost. I became hostile at times, depressed at others. But in the back of my mind was the “gift.”
It took about four years of therapy. I had to consider my own needs, and contemplate a life without Charlie. Charlie had to decide if he wanted to work to regain part of his old “self” while holding on to his newfound joy in living. Our commitment to marriage was stronger than the Stroke, and we fought our way back to one another.
With friends, therapists, family, and our own fortitude, we made it. Charlie will tell anyone who will listen that if you can survive a Stroke, you can get your life back. I tell anyone who will listen that the “loyal wife and helpmeet” is often a myth, and that tragedy brings a load of negative emotions with it. I hated every minute of the journey. I was not always positive and supportive. Caregivers often despise their roles.
But now that we are ten years out, I know that there was a “gift.” We now understand each other better than we ever did, pre-Stroke. Charlie does only the things he loves doing, and he is busier than he has ever been. I emerged at the end of the tunnel as a writer. Life doesn’t hurt any more. We have perspective. We have wisdom. But we didn’t always believe what that twenty-three year old girl knew: this whole journey was indeed a “gift.”