Vivian

In October 2015. I was officiating at my niece's wedding, and it was a stroke.

When and how did the injury occur?

I had two strokes. The first one was in 2003 I think. The second, and more significant, was in 2015. In October 2015. I was officiating at my niece's wedding, and it was a stroke. There is still some discussion amongst the various neurologists, whether it was a clot that I bled into, or whether it was a primary bleed. I don't know that it makes a difference to my deficits, but the intellectual community likes to discuss which it is, so they can enjoy that discussion. But I experienced it as kind of a dissociation from my body on the right side. And I was able to complete the ceremony, but they wound up having to bring me a chair so I could sit down for the end of the ceremony then. I don't remember much of what happened after that.

What was your experience with a diagnosis of your injury when the doctors or scientists diagnosed you?

“What I remember most is hearing a voice, I didn’t know who it was, saying to someone that I had a significant brain bleed”

One of my niece's guests was a nurse practitioner so they immediately brought her over to me in the next half hour or so. And she did the quick, fast evaluation, and indicated that they needed to call 911. So things move very quickly thereafter. I was in Chicago at the time, and what I remember most is hearing a voice, I didn't know who it was, saying to someone that I had a significant brain bleed. And I remember consciously hearing, “but wait, what is an insignificant brain bleed? What does that mean to have maybe an insignificant brain bleed?” And maybe —I have no idea of time—it could have been five minutes, it could have been five days later, I recognized that voice when someone came over to talk to me about what was happening to me, why I couldn't move my left side and why I was having trouble understanding what was going on. I asked that person, “Why did you say I had a significant brain bleed? What is an insignificant brain bleed?” And then he described that the size of the bleed is what made it significant. And that's when I began to understand that there was something. This wasn't going to be as easy as the first stroke was in terms of coming out on the other side. I knew I was going to live, but I was going to live differently given the size of the bleed. 

How did you feel when you were given your prognosis?

So I wasn't surrounded by any of my usual medical team, these were all new people at the UIC. I was blessed with the physical therapist, he was a very no-nonsense person. 

“We're not listening to what the doctors are saying. We're just going to deal with building up what you have and making the most of what you have.” 

“I never once thought, Why me?”

The Occupational Therapist as well had that kind of an attitude. So from the very first minute, I was focused on learning to do whatever I can with whatever I had. So I wasn't upset. I was more determined to “Okay, if I can't use my left leg, how strong can my right leg be?” And I was surrounded by support. There were people that were at my niece’s wedding. As an aside, I also was very conscious, if I'm going to die, let it not be on the day of my niece's wedding. Don't make my niece spend the rest of her life, associating the loss of her aunt with her wedding day. So I remember bargaining with someone though I don't know with whom, that let me get over this day. And then let whatever happens come later on. Which is exactly how it worked out. So every time they came to visit we talked about me, my niece, her husband, my sister, who was there, and people who came from New York to visit me. So I knew I was surrounded by lots of support, emotional and physical support. I knew it was just a matter of let's get going. I never once thought, Why me? I thought, why not me, I'm no better than anybody else. I just wanted to get up there and do whatever I needed to figure out how to move forward. I was so lucky that language wasn't affected this time. But the first stroke, I lost language for a little bit. And that was a totally different experience.

Who else did you have as a support system?

My husband, of course, was there the whole time. In Chicago, my sister… my sense of timing is off. So if they were here, they would correct the facts. In my mind, I lost total understanding of who was actually in Chicago for the wedding and who came to visit me. But my sister and her husband were there for their daughter's wedding. And I think they stayed in Chicago for a month, perhaps both of my daughters were there. And friends came to visit the rehab team at the University of Illinois at Chicago. Those strangers, they were excellent in terms of forming a partnership in my recovery. We were there to work and to work hard, but they were not coddling me at all. So they became a support system in a professional, caring way. And my friends here, obviously.

Did you or do you and do you feel supported by the medical community? 

“ The doctors saved my life. But then, the therapists, occupational and physical gave it back”

What I often say, no disrespect intended, the doctors saved my life. But then, the therapists, occupational and physical gave it back - gave me my life back. And there's not enough credit, I think, if that's the right word, given to the role that the people other than the physician community provide to the ailing. So I have to say yes, I feel supported by the medical community, but that includes everyone from the people who cleans the room - for people who clean the room, sorry, language is a little off for me sometimes - all the way through the aids who know you more than any physician will ever know you because they're with you all the time, to all the dreaded T's I call them, the occupational the physical, the speech, all the therapists. One of the neurologists that I saw when I came back to New York, when I asked him what the prognosis was for recovery, he told me in what I found very cold words at the time that I would probably never use my arm again. I was furious. But he was probably just giving it to me straight. At the time, I thought he was cold and cruel. But I think he was probably in his mind just being realistic. The same message could have been delivered in a more productive way perhaps.

How did you feel during your  medical coverage and could you expand on physical and occupational therapy?

I was lucky that I was in Chicago, and that the hospital to which I was airlifted had a very strong rehab element. So physical therapy started, and I'm not sure if it was one day or three days or five days, but it wasn't three weeks. Physical, occupational, and speech therapy started very quickly after the stroke.

And I was in that hospital for a month, I think. And then when I came back to New York, I was in a nursing home, which also had a strong rehab rehab element. And then I was there for three months or four months also getting physical, occupational speech, and some cognitive therapy. I didn't know it was cognitive at the time, but now that I've heard other people talk about cognitive, I concluded it was conducted there.

What were the challenges of recovery for you during the process? 

“But really the hardest thing is mourning what you’ve lost”

The biggest challenge is accepting that you are letting go of where you were. Accepting where you are. And that is, as I've come to understand, a lifelong process for someone with a brain injury. I know I’m talking to people who are studying neuroscience, but from the perspective of the person going through it, every time I feel a new pain, and that's pretty much every day, I'm excited that, “hey, I'm going to be able to move something new because I'm learning — I'm feeling new pain, that must mean something is awakening, some new connection is being made.” And there's always some neuro-someone right there to tell me no, it's a different pathway and that doesn't mean you're going to be able to move your leg that you couldn’t move yesterday. But I'm always saying, “Okay, I know, you know more than I do. But I'm going to choose to believe that some part of my brain is learning something new, which means maybe tomorrow, there's going to be something else happening.” But really the hardest thing is mourning what you've lost. Really mourning it, letting it go, and accepting and loving what you have. And I think if you don't do both of those things, you're falling into that big black hole that's waiting to suck you up. And from which I think very few people come out.

How has living with a brain injury affected your day to day life? 

The thing I love most in the pre-stroke time is that I was an avid reader. This is the thing that was hardest to give up— I'm not able to read, I have not yet been able to really get lost in the written word. I'm passionate about language. And I haven't been able yet to follow language just for the pure joy of the sound and the alliterations and the magnificence of manipulating language. So I joked with my neurologist once that I can't really enjoy poetry, and then I thought, well, that's not true. I can read Dr. Seuss, that's a type of poetry. So there's still some joy out there, but it's very different. As for the physical part of my life, I'm dependent on other people, for my bodily care, and I am fiercely independent in my mind. So that remains an emotional hurdle. But I'm blessed that I have the, the financial means to get the care where I need it, where so many people don't. When I start falling into that black hole, I just have to count all the positives around me and say, I'm one of the very few who can get what I need. I can walk independently, but I need someone to spot me. So that's the physical loss really - I want to go to a major league baseball stadium, But as much as I love that, that's not a life threatening loss. I have been to one major league baseball stadium since the stroke. It just happened to be the wrong stadium. I've been to Petco Park in San Diego and I'm a Yankee fan, but the Yankee Stadium is just awfully hard to get into. But I missed that.

Are there any positives that came out of this experience?

I have relearned and reawakened the need to live in the moment. And the beauty of living in the moment, which I think had started to die a little bit. I've really learned to appreciate the role that every individual plays in the world and to respect how important every individual is in the Gestalt of recovery and progress. Those are little things, but without them, I think we're just so mean to each other. We in the bigger sense.

What would you have improved about your experience with the medical community in supporting you with brain injury and stroke?

I wish there was more of an acceptance for alternative — I'd even hate the word alternatives — a holistic approach to care, specifically for brain injuries. I love yoga, I love meditation. My biggest improvements in walking came after working with a yoga teacher. That's because, physically, my brain learned proprioception from yoga more than from all the PT I was doing. And I think if I had the medical guidance from the beginning and been more open to and aware of the value of that, if I had started more aggressively, more early, that would have helped more. So number one, I would say, be aware of and open to the possibilities of other approaches. And within the world of physical therapy, there's such a strong divide between neurotherapy and sports therapy. So while I was trying to find local physical therapy, it took months before I realized, I have to specifically say my damages were from a brain injury.

Furthermore, there was very little discussion on how personality was affected by the stroke. It's really only recently in the peer support group that something provoked me and pushed me to realize that there were damages in my brain that would affect personality. So I started going back to my records to see where the damage was in my brain. What I knew was that my impulse control had been affected, because everybody told me at the beginning that I was just saying outrageous things without processing them. I think that probably should have been part of earlier discussions with me and might have saved some very tough moments in my relationships if my family had known that. 

How do you feel about other people's understanding or perspective on brain injury? 

I think somewhere I read that you (Synapse) calls this an invisible disability in some of the published work I’ve read. And I think that's the best. That's a wonderful way to describe how I interact. If I'm with an aide and I go into a store, or a doctor's office to learn anything, the general public automatically talks to the aid. I'm in the wheelchair, so they know something's wrong. But their assumption is that I can't function—that is so annoying and insulting. Depending on my mood, I will say, “I understand, I can talk. I am here, do not ignore me.” Other times, I'll just just let them deal with it because I don't want to be bothered explaining that I'm a whole person. I hate it. I resent it. I think it's cruel. That's one of the reasons I'm so open to this kind of an opportunity because I think it's necessary to break that down. It's necessary for us, and for those of you that are studying it, who may be involved in the treatment plan for others, for changing the mentality. I was involved in communication before and it's important to break down those barriers.

What is some advice for people who are trying to learn more about, and be more open to individuals with brain injury? 

I think listening to people who are going through it shows that you're absolutely doing the most, coming from a person who's living with it. The most I could ever hope for is listening to people that are going through it. To continue listening and getting the perspectives of all the people involved, whether it be professionals, family, support providers, or caregivers, keeping an open ear to all the people involved. If you are going into caregiving or providing, remember that the people with the patients, regardless of their level of education, these are the people who know the patients the most. You can probably get the most meaningful insight into when that patient is on an off day or a good day from the person who possibly has the least education. I think that's often overlooked.

Do you have any advice for other people with brain injury strokes or concussions?

Never say no to any of the dreaded T's, the dreaded therapists. Whatever they ask you to do, you do it and never give up! Curse like hell when you're alone and absolutely, never give up. Put one foot ahead of the other every day. Winners don't quit and quitters don't win. And don't judge your progress from yesterday to today. If you've plateaued and you stop, look back a week, or a month or two months, or three months. Compare that day to where you are today. And you'll see how much progress you've made. And you'll see how many mountains you've climbed and how the ones ahead of you are actually lower than the ones you've already climbed. I think that's what gets me through.

It applies to everyone I think. Recovery is not linear in my experience. I happen to have a visible invisible disability, but we're all we're all aging, we're all changing physically and mentally. Mine just happens to be a little bit more obvious.