October third was a glorious and warm fall day Jon and I were visiting friends. The drive south was warm and sunny and we were having a great conversation. The visit was great and we were now headed home for a nice long weekend. We were in Utrecht stuck in traffic and I was getting tired. I put my head down. “We need to leave for home earlier.” Once again rush hour.
Pulling into Huizen we decided to run to the store for butter and I stayed in the car because I was just so tired. It was then that I lost all strength in my neck. I couldn’t keep my neck up. Weird as it was I ignored it. Jon helped me into the house and I just sat on the sofa. He made dinner and we watched television.
It was after a bit of whatever it was we were watching that we took a pause and he noticed me. I felt terrible and my right leg and left arm felt funny. He said that my face looked like it was drooping. We called the after-hours doctors. They sent a doctor out. I knew then that something was really wrong. I knew then that I was headed to, as Jon and I call it, the “big house.” Yet another medical adventure was underway.
After the doctor took a look and got my history he phoned Utrecht UMC. It was determined that I would go there as my records were there and they knew about my situation.
The best way to describe what happened to me is that I felt detached from my world and my body was not in my control. I felt suspended in space and at the same time as if I was a heavy limp weight that had to be helped to do things. My right leg felt like it was suspended in mid-air. I would later be able to state that if felt as if my leg was drunk.
Ambulances are weird spaces. They can be disorienting and scary. Instinctively I knew I was having a stroke but I didn’t want to verbalize it. That was too terrible a concept to utter. At the time I just wanted Jon to be by me and it seemed like it took him forever to get there. As usual there had been a car accident so the doctor was off with somebody else.
Finally at 2:00am I sent Jon home. They’d be coming for me to admit me and he needed rest. As it turned out I won the hospital lotto that night and was wheeled into the private room. Now that was luck. Peace was to be mine in the days that followed as the health crisis unfolded. It had only begun on that Friday evening.
Before admitting me they had done a CT but not an MRI. That would be done Monday. CT scans don’t show everything and this one was no exception.
I had lots of symptoms that didn’t seem to last or make sense. Mid-Sunday my right leg felt paralyzed. As I lay there wondering what was coming next I thought “what if my lungs shut down? What if I can’t breathe?” Oh what if I die in this room all alone?” Now that got me thinking. Being alone in this situation was scary. I would later beg a nurse not to leave me in the middle of the night. He was great and stayed until I calmed down.
By this time in the process I needed assistance in getting around. It was not fun and certainly somewhat embarrassing but you do what you have to do to keep what dignity you can. My speech was also being affected in strange ways. It was different from what had happened at the end of June. This time the left side of my face felt like it had puffed up and my tongue felt as if it had puffed up and I was speaking weird. I was now scared. The nurses just watched.
Throughout the entire process they kept asking me to rate the pain. The rating was never higher than an eight. I’ve suffered worse pain with a pancreatitis attack. They kept asking and I kept telling them where things stood.
Monday came and I wound up getting an MRI. Then it was time to wait. And wait I did.
Jon came and it felt safe. Then the three doctors came in. There were no smiles “this isn’t good news I thought.” I heard the word stroke and then I was swirling in words. The whole thing sounded like the voice for the teacher in “Charlie Brown.” I just faded in and out and thought “what have I lost?” I was sure that my right leg and left arm were damaged. Anything else I thought as I lay there taking an inventory.
I wanted to scream “STOP” so I can process this. STOP you are going way too fast. I’m falling behind. Jon was now upset and asking why they had not done the MRI sooner? Why had they not seen the stroke on Friday? We thought I had not had a stroke because of the CT scan. Yet in my gut I knew I had been involved in having a stroke. I’d just had the weekend to believe otherwise. Why had a deluded myself?
Now I had to tell family what the real situation was. I knew this would disturb my mother. It did. She was already thinking that I’d die. Thousands of miles away she wasn’t taking it well. I only found that out when I spoke to my sister.
The friends we’d visited on Friday had contacted Jon and to see how I was. Upon finding out now that I’d suffered a stroke they drove up to the UMC to be there and offer support.
The nice thing about private rooms is that nursing staff will let you violate the rules with visitors. They stayed until nearly 10:00 PM. Then they left and Jon followed shortly after. I was now alone. I had to now make a choice about medication. That seemed to be one thing I remembered in the earlier conversation.
The last thing I wanted to deal with at this point in time was vision loss. I had to decide if I was willing to risk just that. Do I want to risk going blind and still be functional? I knew it could happen. It was a chance I had to take. I had to risk taking a drug that would save my body from another stroke but could wipe out the remaining 12% of my sight. I spent Tuesday agonizing over the choice knowing that I had to accept the pill or whatever it was I was in for. I was still symptomatic and Wednesday it was decided for me. I drank the powder that now to be a daily routine until forever.
Wednesday also brought with it a friend who knew of a great rehab center that was 15 minutes from home. I am so thankful that Marion knew of where I could go for the needed rehab. Sometimes you get lucky with the right information when you least expect it. I feel very fortunate that way. Well I might not a say in medication usage but I did get to have a say in where the rehab was to be done. I was learning that I had to take what positives were handed to me and accept them. The anger at the negatives would come in time and all too soon.
I got lucky in that there has been no major damage. You never get well from a stroke. You can recover a certain amount of usage and strength. You can learn to manage energy wisely and move on. You don’t get well. That will never happen and believing that you will get well is a myth. So I’ve entered the recovery and learning phase of post minor stroke in my life.
I have shed tears, felt despair and emptiness and at times feel like I’m a burden to Jon. He is listening and offering support. I know this isn’t easy on him either. It is a balancing act of allowing him bad days as well.
I appreciate that friends and family want to send kind thoughts and prayers. I think that is more of a comfort to them because somehow they feel as if they are helping. It is nice to be thought of in that way when I am so far from you. What I need is help and at this point that means phone calls and visits as well as a meal so that Jon doesn’t have to shoulder it all by himself.
I just folded some laundry and I’m wiped out. You don’t know how much energy you consume until you don’t have it to put out. In the past few weeks my life has changed. I know it will change more. Some things will be good and others won’t be so easy. I got lucky it could have been so much worse and for that I’m thankful. I will recover all I can. I will build strength up in as many ways as I can. I have begun the fight in simple ways. This is something I know how to do: the inner warrior is back. I’m ready to fight for everything I can recover.