July 3, 2014

How My Husband's Stroke Changed my Life

How My Husband's Stroke Changed my life: Redefining Our Relationship was written back in 2007 for a contest on a site that is now pulling all its content off the web and giving the rights back to the authors of the articles. I won the contest and wanted to preserve my article, so I've moved it here.

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My husband had a massive stroke that left him right side paralyzed and with no verbal or written ability to communicate. An event we thought could never happen to us did happen. It destroyed our previously comfortable and often complacent lives in much the same way that a forest fire destroys acres upon acres of land after a lightning strike ignites a single tree. The fire engulfed us and when it burned itself out, it forced us to rebuild and redefine our lives. It was hardest thing we've ever had to do.

It started with a bad headache. No big deal. We all get headaches. Don took a couple of aspirins and went about his day. By noon the next day the headache was worse and he was walking funny, dragging his right foot. It was time to go to the hospital---wrong. We should have gone the day before. One thing a stroke does is make you play the "what if" game for months to come. What if we had gone to the ER when the headache started? What if he had quit smoking earlier in his life or, better yet, never started. What if I had known the symptoms of a stroke? The what if's eat you up alive in the early stages of accepting a permanent disability and the changes that come with it.

Within days after the stroke, two neurologists declared that Don would be "a vegetable for the rest of his life." He was too unstable, at the time, to be moved to a nursing home but that was the recommendation, the only choice given.

"He is too young for that!" my heart cried. I didn't know that strokes happen to people of all ages including to babies in the womb. I didn't know that a thirty-nine year old woman could have a stroke while getting a face lift or that a twenty-four year old guy just back from Iraq could get in a car accident and have a stroke. I didn't know that an athletic guy of thirty-something could have a tiny hole in his heart causing a stroke or that an eighteen year old girl who smoked while on birth control could have a stroke. I know these things now. I've met these people.

Don spent the next one-hundred-and-one days in the medical system. A month in the hospital to get stabilized, a month in a nursing home gaining his strength, and finally a third neurologist gave him a chance at rehab and he was moved again. After the in-patient rehab ended, Don was in out-patient therapies four days a week for five months. I was at his side every single day of those eight months and he was anything but a vegetable to those of us who knew him before the stroke. His body was broken and he couldn't talk but he was still "in there."

When he left the in-patient rehab program Don couldn't go back to his house or to my house---we weren't married at the time. Neither house was a good candidate to remodel to make them accessible for his wheelchair. So I brought him "home" to a one bedroom apartment and I moved in with him. He couldn't care for himself.

Those first eight months were terrible and when we weren't going to therapies I was dealing with selling off his equipment: three front-end loaders, assorted pick up trucks, a street sweeper and nine snow plows. Fortunately, a month before the stroke Don had named me his medical and legal power of attorney in a worst case scenario. It couldn't get much worse. Having our legal T's crossed and the I's dotted ahead of time made it easier, but it didn't help with the cash flow problems, dealing with the insurance companies and SSDI, having two houses sit empty, and losing our sources of income. My stress level was like a bottle rocket waiting for a match.

In the second year out from the stroke I dealt having two auctions, getting the houses up for sale and taking Don to speech classes two times a week. Oh, and some where in there we got married. To this day I can't remember our anniversary date without looking it up. Everything was just a blur of activity back then.

The third and fourth years out I designed a wheelchair accessible house, we found a lot, had the house of our dreams built and we moved again. In that same time frame I also became a mentor on a large on-line stroke support site, moved up to middle management and eventually accepted a seat on the board of directors.

On the anniversary of the fifth year out from the stroke we had a 'Thank God, I'm Alive' party to celebrate Don beating the "vegetable for life" prognosis. It was a turning point in my life as well. The bad stuff was behind us and rebuilding our lives was bringing many good things back into our every day existence. I was able to start doing some gardening for the first time in my life and I got seriously addicted to blogging as a way to share some of the funnier situations that were occurring in my life as a caregiver to a guy with severe aphasia. Looking for humor is situations is a great coping technique for me to defuse the inherent stress that comes with the territory.

At this point in time my still-wheelchair-bound husband is almost seven years out from the stroke that nearly destroyed both of our lives. He is a happy, intelligence guy with a great personality and a positive attitude. We appreciate life to best of our abilities and not a day goes by that I am not grateful for that.

His unprompted vocabulary is around twenty-five words a day---and this from a guy who before the stroke was a gifted storyteller who rarely quit talking. I no longer mourn the loss of in-depth conversations late at night or the political debates we used to have. I no longer ache to have him repeat stories I'd heard a hundred times in the past. I stopped mourning my old way of life a long time ago. But it wasn't an easy transition.

How has my husband's stroke changed my life? There isn't an area of my life that hasn't changed. Aside from the obvious things written about up above, I've learned the true meaning of the words: failure is not an option. I've discovered that in the face of adversity we humans are stronger than we think we are. I've come to appreciate that love can move mountains. My belief in the goodness of mankind as been reaffirmed; for every blatantly indifferent person we've met since the stroke we find a dozen others who go out of their way to show kindness to me and my disabled husband.

A stroke in a family is like a lightening strike igniting a tree in a forest. Its effects are far-reaching and our story is not unusual. Approximately 700,000 new or recurring strokes per year happen in the United States with 163,000 of those strokes ending with a fatality. But I was able to bring Don and me through our own personal fire storm and go on to forge a new life that includes joy and happiness once again. Now, that's something to write about! ©

2 comments:

Bella Rum said...

I don't have the words, Jean. This is quite an article: filled with information and a lot of emotion and lessons. You know that I have Afib, and it's hard not to give some thought to this scenario. You were a wonderful advocate for Don. Because of my experience with Dad's stroke, I understand the nursing home scene and dealing with the doctors and pushing to get what you knew was best for Don, but I can't imagine doing all that you did in the early years following Don's stroke. That was quite a load. It is true that we are stronger than we know. Wonderful article.

Jean R. said...

Thank you Bella. I consider this article to be my 'been there, done that' t-shirt of sorts. I wrote it for a contest and ended up wining but after it was written I hoped that it would help others who are still going through the process. I couldn't just let it go off the web so thus it ended up in this blog. When I look back on all we went through, I still can't believe that I'm still standing.