My Journey Through Hell (Part 2)

This is the second of a number of posts related to the stroke I experienced in February of 2010.  Before you read this post, it might help you to read Part 1 of the series.  

Transitions

So…. The stroke happened Monday night, we got the diagnosis on Tuesday night, and the neurology team converged on my room on Wednesday.  They did all kinds of poking and prodding.  They even tried to get me on my feet with the help of a walker, but that didn’t work out so well.  Also on Wednesday, the rehab doctor from Roger C. Peace Hospital came, and the decision was made to move me from the main hospital to Roger C. Peace, a rehab hospital affiliated with the Greenville Health System.  I was to move on Friday after the heparin drip was finished.  Everything was moving so fast.  On Monday, it was business as usual, and my life revolved around working and being productive.  On Friday it was clear that the foreseeable future would be consumed by treatment, and I had cleared my schedule at work indefinitely.  I went from 100 mph to 0 in less than a week.  At the time, the possibility that I may never recover my former life never crossed my mind.  This was a hiccup… a passing inconvenience.  I would be back to normal in no time flat.  Just do what the doctors were saying, and all would be well.

I stayed at Roger Peace for about 4 weeks.  We did physical, occupational, and recreational therapies twice a day.  It was brutal.  I got nauseated and vomited in therapy, and the exercises I was made to do were extremely uncomfortable.  The room would just keep spinning out of control, and I fell at times.  The headache was being managed some, but the pain was still unbearable.  While not in therapy, I would try to transfer from the bed to the wheelchair or walker by myself.  The denial was still there… Maybe *this* time I won’t fall, I thought.  That really frustrated the nursing staff who were trying to keep me from falling and busting my head or breaking a bone.  After 3 weeks and little to no progress, my rehab doc, Dr. Robbins, petitioned my insurance company to cover me for another week of inpatient rehab.  Something that would have huge implications for the future during my stay at Roger Peace is that I was placed on heavy doses of opioids and benzodiazepines.  But more on that later.

So on the day of my discharge from Roger Peace, I finally got to go home.  Home was more comfortable, but essentially my symptoms had not improved much since the week the stroke happened.  I had learned some compensatory techniques to help with getting around and other activities of daily living, but the symptoms were still there, and they were still debilitating.

What needs to be mentioned here is the toll my 5 weeks in the hospital took on Karen.  She had kids to get to school, money to make to pay the bills, the stress of having a very sick husband, meals at home to take care of, a household to manage and monthly bills to pay.  She was under an enormous load.  She spent many nights with me in the hospital, sacrificing sleep in order to comfort me and stay by my side.  And after discharge, the load on Karen continued.  Later, I felt guilty about the impact of my illness on her.  At the time, though, I felt neglected by her.  She was so busy keeping the family afloat that she didn’t have as much time to just sit and be with me.  I put pressure on her to be with me more and tried to guilt her into spending more time with me.  Obviously, I was clueless as to how much she had on her plate.  All I could see were my own needs.  Now, in retrospect, I’m embarrassed by my actions and attitude back then.

After discharge and returning home, we settled into a new normal.  I went to outpatient therapy three times a week but stayed at home alone the rest of the time.  Friends from church graciously made sure I got to therapy and back.  They also brought us meals for over a month after I left the hospital. I was grateful for their hospitality, but it felt awkward to let other people, some of whom I didn’t know, see me in my condition and do things for me that I couldn’t repay them for.  Karen worked a lot due to my lost income, and the kids were busy at school and doing extracurricular stuff.  I was unable to participate much in family activities and goings on.  Soon it started feeling like there was Karen and the kids, and then there was just me.  I felt un-included.  I spent days alone sitting in the living room where it all began while the rest of the family seemed to be moving on with their lives.  I understood that that was how things had to be, but I still felt abandoned and much of the time forgotten.  I think there were many times when Karen and the kids did stuff together without me in part because they needed to get away from me for a while.  They needed to come up for air, if you will.

At first being alone much of the time didn’t bother me.  However, after my stroke was old news, people, even people I had considered close friends, stopped coming around.  I started to feel resentful, abandoned, extremely lonely.  People would ask me, “What can we do for you? Anything you need, just ask and we’ll be right there for you.” My answer was always the same.  Just come spend time with me…. You don’t even have to say anything–just sit with me.  I didn’t have any takers, beyond my best friend who had stayed with the kids the night I had the stroke.  Sometimes I resorted to begging people to come over… They just wouldn’t, for the most part.

In retrospect, I’ve gained some insight about why people didn’t come around.  I was very, very sick.  My answer to the question, “How are you?” was always, “I feel like shit.” There was nothing people could do to help me feel better.  I think they felt powerless and just had difficulty watching the anguish and suffering I went through.  It took a lot to be with someone in my condition.  Also, I think I might of run people off due to my extreme emotional neediness.  I’m sure being with me just sucked the emotional energy right out of people.  Now, I’ve learned (at least at some level) how to receive imperfect love.  I am learning to take what people *can* give with gratitude and trying to trust God for the rest of my needs.  That has been a really tough lesson.

Something that really peeved (and still peeves me) was when people would come around or take me to therapy or something and say, “Wow, you look good… better than last time.” I hated those words because I didn’t *feel* good.  I think they needed to think that I felt as good as I appeared to feel.  I hated the pressure to make other people feel good about me.  One time a close family member came to visit for the day, and upon leaving she said, “I’m so disappointed…. I needed a good visit today.” At the time, I was livid.  Don’t frikin’ come to my house expecting something from me.  I can’t give it to you.  Leave your expectations at home… PLEASE! Looking back, I know she loved me deeply and wished to the bottom of her soul that I was in a different place than I was.

What I haven’t mentioned up until now is that the blood clot that caused the stroke developed around a “hole in the heart,” known in medical lingo as Patent Foramen Oval (PFO).  After I discharged from Roger Peace, I met with cardiology to determine what to do with the PFO.  It was decided to do a procedure to plug the hole to prevent future clots, and in August of 2010, that procedure was performed.

Symptoms

Before I wrap up this post, I want to make a quick list of the symptoms I continued to experience as the transitions took place and a new normal began.

  • Severe vertigo/dizziness
  • Falls
  • Impaired vision related to impaired ocular movements
  • Severe and constant head pain
  • Severe nausea and vomiting
  • Cognitive deficits
  • Depression–including uncontrollable sobbing
  • Opioid dependence, including periods of withdrawal symptoms
  • Severe insomnia (once going 17 days without sleep)
  • Loss of appetite
  • Sexual dysfunction
  • Difficulty performing basic personal care

The list could go on and on, but those are the big ones.

My next post will describe what it was like to live with those symptoms over time.  By several months after the stroke itself, I had accepted that there was no treatment available to cure my residual symptoms.  I realized I had a chronic debilitating condition, and returning to my life prior to the stroke was extremely unlikely.  That led to some major depression, but I’ll speak to that more in the next post.

 

 

 

 

 

 

 

 

 

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