Q: What happened to bring you to Touchstone?
A: I had a brain clot. The right side of my brain was damaged and my entire left side was paralyzed. I can move it now, but I have no feeling in it. I was in the ICU for about a month. Touch and go.
Q: What was the first symptom that you noticed?
A: I was being treated by an older neurologist for migraines. I could barely get through a day. My head was hurting. My neck was hurting. My shoulders were hurting. And so they were putting nerve blocks into my neck and giving me medication for migraines. I was always tired. I was starting to slow down because of all this. But then the left side would go numb for a while, and then it would go away, and then it would come back. And then it would go numb again, but it would come back. He told me that wasn’t unusual with migraines.
Q: This was happening over what period of time?
A: Over thirty days. Every couple of days it was going numb, but it would always come back. Now the whole side wouldn’t go numb. It was only the hand or the arm at first, and then it started the whole side. He said he wasn’t worried. At that point, I didn’t realize that I should have been forcing the issue. I know now that numbness is one of the signs of stroke, but because of the migraine...
Q: Because with migraines, occasionally you can have symptoms such as numbness that can accompany the headache.
A: Right.
Q: So tell me about the day when your stroke finally declared itself.
A: It was Saturday morning, and I bent over, and the clot moved I guess, and I collapsed. I don’t remember a whole lot. We think I hit the marble counter in the bathroom, and that’s what caused this problem in my neck here. When I hit the floor, I realized I was on the floor but it was like a kind of dream state. I was thinking, “I’ve got to get myself up. I’ve got to get somebody to help me. Something’s wrong.” I was apparently trying to crawl out of the bathroom. I was trying to stand up and I had no feeling, or really any idea of what was happening. I was hitting my head on the door frame because I was trying to get out, and I ended up hitting my head. Finally my husband came inside to find me. Thank God he was home. When he found me, my face had already fallen. My speech was already pretty much gone. Even when I spoke to him, in my brain, I was speaking OK. But he couldn’t understand me. He kept me talking, and he called 911 and told them I was having a stroke.
When we got to the hospital, they gave me the tPA, the clotbuster medication, and then I woke up in the ICU. It was probably about four days before I became aware. They had given me a shot for the pain, because when the side was going numb, it came with a lot of pain. So they were trying to let me sleep. I had a lot of problems -- kidneys, liver and some other things they were keeping a close eyes on. But I had a will to get better and to get out, so within the first week at the hospital I was already sitting up in the bed.
Q: Did you have weakness on one side?
A: The left side. I couldn’t even move the left side, so I had to . . . I’ve ridden horses my entire life, so basically I told them that if they could get me into a position to where I could pull myself into a chair or get myself on to a walker, then I could hold myself up with my side. And so I was able to sit on the edge of the bed, and they were able to put me in a chair. You know, you don’t realize how hard it is to sit up with only one side of your body working. You’re just looking at your arm, and you don’t know how to move it.
Q: You didn’t have any movement?
A: No, none. It was just there. If my arm hadn’t have been there, it would have been the same thing to me at that point. It was like a useless item, just hanging out of me. The leg, same thing. Literally, the whole left side, all the way down.
Q: Your face was weak?
A: Right, the face had fallen. The beginning of the second week, the first person that came to work with me was the speech therapist. She gave me a sheet of paper on things to work on to help with the face. She said for me to work on it as much as I can. Well, when you’re in the ICU, there’s not much you can do, so I worked on it day and night. If I was awake, I was working on it. If I was going to sleep, I was working on it. I worked on it literally day and night. We started progressing, because the face started lifting again.
Q: So you saw some progress?
A: I saw the progress, and then I could hear the words turning to normal words again.
Q: What about your leg?
A: My leg took quite a long while. The arm was the hardest.
Q: Was it the weakest?
A: Yes, it probably was the weakest. And because I never exercised. That was my downfall. I was stressed out. Big downfall. I had high blood pressure. Huge downfall. And it was not controlled with the medication. It was not controlled with the medication ever. The medication was never changed, never added to, never anything. And high cholesterol.
Q: You had a lot of risk factors?
A: I had all of them. I ate the most unhealthy food I could get my hands on. I was stressed out, so I was eating. I was gaining weight. I was doing every bad thing you can think of.
Q: What was the next step for you?
A: Next I went to TIRR (The Institute for Rehabilitation and Research). I was still in a wheelchair. It was kind of like being in boot camp. They said, “Tell me what your number one goal is.” I said, “My number one goal is to get up out of this wheelchair so I can get to the bathroom and shut the door on you so that you don’t have to go with me.” Your privacy is very much gone in ICU, and when you first go to rehab, it’s pretty much gone. You don’t get to go anywhere by yourself, including the bathroom. You can’t take a shower. You can’t do anything. I couldn’t even get dressed, so they had to teach me how to dress with one hand. That took forever. That took a long time. So my number one goal at that point was to get out of that chair and go to the bathroom by myself. I didn’t care if I went anywhere else. I didn’t have to walk anywhere, I just wanted to walk in the bathroom and shut the door. I did that pretty quick I think, within a couple of weeks. I was up out of the wheelchair, walking. I did all of the exercises. I went to every class I could go to. Every exercise I did more than required. If you were supposed to do ten, I did twenty. If you were supposed to do ten minutes, I did twenty minutes.
Q: Were you still having trouble speaking at this point?
A: Not really speaking, but definitely the word finding. The word finding has still been the hardest thing for me. I still have problems finding words. So I play every imaginable brain game and board game and crossword puzzle. I read books of words you should know, a thesaurus, a dictionary, whatever I can get my hands on. And what I found is, reading to yourself is not the same as reading out loud. In your brain, you could read to yourself, but you’re not doing yourself a favor. You should be reading out loud, even pretending someone is with you and read to them. Because reading out loud and speaking is different than reading to yourself. Once I started reading out loud it was like, wow, this is a little harder. You’re following along and then you get to a word that’s like, I know I’ve seen it, but I don’t know what that word is.
Q: What about cognitive issues, in terms of organization, attention, speed of processing? Was that affected?
A: All of it. Even now -- it’s been almost twenty-four months -- it’s very hard for me to stay focused on an item. Occupational therapy and cognitive rehabilitation have helped. I was never a “list” person. But I know now that the reason I was running around and never getting anything done was because I was not a “list” person. Lists help you see that you need to get this, this and this done. You mark this, this and this off. And then you go to the next item. So I never worked from a list, never did a list. And now I know why I never got anything done.
Q: You were less efficient?
A: I was less efficient, and more running around. I think I did more running in circles. I got a lot done, but it was very inefficient.
Q: A list helps you to clarify what your goals are, and then help you keep track so that you can accomplish those goals..
A: On Sunday, I sit down with my little notebook, and I write down Monday. So on Monday I want to do one, two, three. I have to get three things done every day. So on Monday, I want to do these three. Each day I try to have three things done, because during all this time, after I left rehab, while I was at home waiting for a place at Touchstone, I didn’t get anything done. I let everything pile up, so my house looked like a hoarder’s house. I was hoarding paper. The mail would come in, and I would open it. I just started stacks. I had no idea what to do, where to start, how to go forward. No one worked with me, and I didn’t know I had a problem.
Q: So you’re saying that wasn’t something that was addressed specifically in your rehab, how to deal with organizing your life, your paperwork, that kind of thing?
A: Right, the short rehab that I had, physical, occupational and cognitive, was basically to make sure I could recognize pictures, read, and do other things...
Q: More basic things, but no higher level skills?
A: Right, and by the time I was getting ready to start the next step, ninety days after my stroke, my office decided to use the option at ninety-one days to terminate my employment.
Q: What effect did that have on you?
A: No insurance. And it was going to cost so much money for COBRA. I didn’t know what to do. The really nice part that worked out for me was, my husband was working for a temporary staffing company. At that point, they offered him a full-time job. It all happened just perfectly. If you’re a brand new employee during the first thirty days, you and your spouse can join their plan. Fortunately, I was able to join their plan. And then, I was able to come here.
Q: Since you’ve been here you’ve had the opportunity to address those higher-level skills that you didn’t have addressed during your previous rehab?
A: Yes. I’m still a little scattered and lost at times, but occupational therapy helped me find a place to start, and gave me not only the confidence to go forward, but the skills to do that. And they continued to check back with me to ask if I was making progress.
Q: Follow-up?
A: Follow-up.
Q: Have you been working on real-life practical skills that would transfer from the therapy room to things you needed to accomplish in your every-day life?
A: I re-learned how to hang clothes with one hand on a hanger. I re-learned how to fold towels with one hand. I learned how to cut an avocado open with one hand. I didn’t think I would get there. They helped me through that period. The biggest thing is repetition. Nobody wants to believe this, but now I’m a hundred and ten percent believer in repetition. All my stuff is in the same spot every day. All my keys are in the same spot. My cards, my bag, my water, everything is in the same spot all the time, so I don’t wander around the house looking for my keys, my purse, whatever. But my husband still does. I tell him, “Why don’t you put it in the same place?” You put your things in the same place every day, and repetition will help you get through this, because you will start to learn. That’s where you put it, so that’s where you go to get it. And you just keep putting it there. I have an assigned container for when I go to my mom’s house in Austin. Everything that goes with me goes in that container. It stays in the same place. It never moves. And I take it with me to Austin so I don’t have to remember.
Believe it or not, it does work.
Q: It’s been twenty-four months, and it’s still a work in progress?
A: Still.
Q: Tell me a little bit about how the stroke affected your emotions?
A: For the first year, I was crying at the drop of a hat. Everything upset me because my whole life was gone. Everything I knew was gone. I didn’t know I could start over. In my mind, everything was gone. I couldn’t do what I used to do. I couldn’t go where I wanted to go. My husband taught me that that was wrong. I could go wherever I wanted to go. I just had to learn to go slower. I had to learn to take my time. I had to learn to prepare ahead. I had to learn to be organized.
Q: Were you initially depressed?
A: Very, very, very depressed. I didn’t want to go anywhere. I didn’t want to see friends. I didn’t want to go do anything. I didn’t like going out in public and eating because, you know, your arm is just laying there and you can’t feel half of your face. You’re eating and all of a sudden you’ve got food on half your face. I still can’t feel when I have food on my face. After while I said to myself, “I don’t know why I’m trying to hide. I didn’t do anything. If we were out at the store, if there were older people who needed our help, someone in a wheelchair, I started looking for other people. There are so many people out there who need help, and nobody ever notices. There are so many people who have had strokes. I see so many of them now, but for the first year I was so sunk in self pity that I couldn’t see that.
Q: Were you angry?
A: Oh my gosh. I was thinking about writing a letter to my neurologist who was treating me for the migraines to say how horrible a doctor he was. I had all these revenge things I was going to do to these horrible doctors who were treating me before my stroke, who couldn’t figure out what was wrong with me. They didn’t tell me to lose weight. They didn’t tell me to get off my rear and stop watching TV and go for a walk. They didn’t tell me all this stuff. And they didn’t tell me to quit eating all that fast food, junk food, fried food.
Q: What turned it around for you?
A: I guess finally my brain started to clear a little bit. And I just started thinking of my situation in a different way. Yes, I might have brought some of this on myself, by the choices I’d made, but only I can make myself better, and only I can go forward. I’ve got a family. I’ve got a son to raise. I’ve got to get him through school. I can’t sit around the house and complain all day. I’ve got to get out and get something done.
Q: It’s interesting. You talked about how in those first few days after the stroke in the hospital, you would work day and night trying to move your face and your arm, but it took you quite a while longer to get to the point where you were able to recognize that you could apply those same things to how you were feeling.
A: I don’t know why, but feelings are harder to see. It took me longer to figure that out.
Q: Tell me what you were like before the stroke, in terms of how you handled emotions.
A: I was very domineering, very in control.
Q: Type A, would you say?
A: Oh yeah. I had an entire office I had to run. Computers, everything had to be just so. Now that I’ve had time to see the other side. I see a better side. You know, life isn’t all about getting your job done for someone who doesn’t appreciate you. I’d been seeing a chiropractor for a long time for neck problems, shoulder problems, back problems. But it was stress. I knew I was stressed out, stressed out to the max.
Q: What does that mean? What did that feel like? What did that look like?
A: I went home every Friday evening after work, after working all day for 8 to 10 hours, then an hour drive home, and literally on Friday at 7 o’clock, I was in bed, trying to sleep with a pain pill. I was in bed all day Saturday with a pain pill, in bed all day Sunday with a pain pill, having to get up on Monday and forcing myself to go in to the office. That went on for about thirty days straight, and it just seemed like there was no relief. And it just seemed like the migraines got bigger and stronger and apparently that’s when the clots were really building up.
Q: I want to talk about some of the things that we did in my group. Tell me what you learned from that experience.
A: What I really learned was, I had very high anxiety. I didn’t know I did. I was constantly burning up. I couldn’t stand still. I didn’t realize it was my brain constantly trying to find answers to some of these questions, problems I couldn’t find the answers to. Now I’ve learned how to manage it, control it. If something doesn’t involve me, I just let it go. I think that’s one problem everyone has. They can’t let go of the stress, and it gets the better of them.
When you taught me the breathing exercise, I started doing that at night before going to sleep. I’d just lay there in the dark and I would start breathing with my eyes closed and try to think of what a good day it was, what I had learned that day. Then when you mentioned to try it on the drive in, I found a nice station that plays . . . This is one of the problems I have. I can’t think of the word . . . Not classical music, but string music, like an orchestra but with strings. I found a station that plays that in the morning. And I actually started looking around at the scenery as I’m driving. You know, just a quick glance ahead at how pretty the trees were, how this place has a lot of horses, and so on. I never stopped and smelled the roses. Ever.
Then you started playing those bird sounds . . . Those sounds used to be really annoying to me. I used to think,” Why won’t those birds shut up?” But now I like to sit out in the backyard with my son, and we listen to the woodpeckers on the telephone pole, and he plays for us, and the squirrels run up and down the telephone poles. The dog sits under the telephone pole and annoys all the neighbors with his barking as the squirrel comes down to tease him and runs back up and comes back down.
Q: It sounds like you’re noticing . . .
A: Life. I was in too much of a hurry before the stroke. I never noticed life.
Q: What effect did this have on your anxiety?
A: For me, it gives me more peace of mind. It lets me know I need to slow down. I need to enjoy. My mom, she’s just like I used to be. She’s going a hundred miles an hour and doing everything. So when I go and see her, we sit in the two rocking chairs like old ladies, and I work with her on breathing. And I tell her, “Let’s just sit here and rock, no conversation, and just breathe.” We just sit and breathe. I was in a classroom the other day and somebody said, “Well just take a deep breath,” and he said, “How do I take a deep breath?” I said, “Here’s what I do.” I take a deep breath in -- I make this motion with my hand to help me take a deep breath in -- and I breathe out. And also what Ive started doing is putting my hand on my stomach as I breathe in and out. It’s something about getting that fresh air and those deep breaths that seems to help. Who would have thought in the evening that you could just sit there with your window open with a warm cup of tea and just look out the window with no TV on and have your family member come in and ask you why you’re sitting in the quiet? I tell them I’m just gathering my thoughts and having a cup of tea. A friend and I started sitting outside on the patio and watching animals and having tea, sometimes visiting, sometimes just sitting. It’s comforting to just sit with someone, and you don’t really want to talk.
Q: Is that a new thing for you?
A: Very.
Q: You would have felt uncomfortable doing that before?
A: I was never ever comfortable in a room without the TV on, never comfortable without the radio on, never rode in the car without the radio on. Why would you ride in the car with no radio? Now I notice the quiet and the peace, the sound of the tires, the wind through the window. I made it turn around for myself because I feel more at peace. The anxiety is not gone, but before, I couldn’t even be in a crowd. I couldn’t be in the noise. I couldn’t be anywhere. The noise drove me crazy. Now if I just start breathing and look around the room and kind of take it all in, then I can decide where to go from there. You find things that give you peace. Maybe you just want to sit and watch the babies walk. You can go to a dog park and watch the dogs run around. You can go to a playground and watch kids play. You can park your car by the side of the road and just watch the kids play in the playground. It’s finding things that give you peace. And finding peace inside.
Q: And like you mentioned earlier, repetition.
A: It’s the repetition. Coming to the class, the more we did it together, the more I did it at home, then when I would get into a crowd . . . On Tuesday I took my son to school, and he pointed up a long staircase and said, “The room is up there.” I thought, “Oh my gosh, that’s going to take me forever to get up there.” But I looked at the bottom, and I took my breaths, and I started very slowly, the first step, then the next step, pulling myself along with the rail, not looking up. I just went from the next to the next step. When I got up to the top, I thought, “Yay, Rocky. I got all the way to the top without realizing it.” Before, I think I was looking at the top and thinking I’d never be able to conquer that, and so I didn’t, but now I have the confidence to take that step by myself. I conquered yet another problem.
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