Larissa Lioubina: Lessons I Learned on the Way to Recovery
December 21, 2011
The Lessons I Learned on the Way to Recovery
My name is Larissa Lioubina and I am a traumatic brain injury survivor. I may not look like it, it may not sound like it, but I do have cognitive disorders that turned out to be severe and permanent enough to force me to go out on long-term disability. This invisibility of the injury is what made me want to speak about it. In 2004 and 2005, I was having increasing headaches; I felt the deterioration of my memory and attention abilities. I had unusual disoriented feelings, however none of the doctors I saw at the time were able to tell me what was happening and their guesses went from allergy to migraine headaches. In October of 2005, I was finally sent for an MRI, and was diagnosed with the benign brain tumor of 5 cm in diameter and at this time had to undergo an emergency brain surgery. Ten and a half hours later, my life was changed very dramatically and forever.
With that said, I admit that I was very lucky not to loose a lot of my physical functioning, however from the moment I woke up in ICU I realized I did have problems that I would have to fight through in my recovery. Mainly, it was deficiency in memory and math. Since the main part of my prior job as Senior Insurance Account Executive included both complex financial analysis as well as my ability to remember large amounts of client information from the top of my head, I had to go out on short-term disability. Still I strongly believed that this would be temporary and I would soon return to my life the way I knew it. You may say I was in denial of the fact that my life changed. I did go back to work after 3 months. But nothing was the same. I could not remember even my client names, I still had difficulty operating the numbers and needless to say that I not able to control my emotions with even minor conflicts sending me into breakdown. Now I can see that it should have been obvious that my career was coming to an end and I needed to concentrate on the recovery but still it took almost 2 years for this idea to sink it.
There are a few lessons I learned and am still learning from what I went through over these 2 years and I want to share them with you.
1. ACCEPTANCE
The first and toughest one for me was and still is, acceptance. For a proud and tough fighter like myself, letting go was the hardest step. I think I still miss myself like you would miss a friend who passed away unexpectedly and at times it brings me to tears. Part of me still wants to hope that I will regain my previous abilities. But if you want to move on with your life you need to figure out where to start a new life and that means figuring out the strategies and tools to do so: from writing down the activities and conversations in a daily manner, to speaking your thoughts out load to engage an auditory memory.
2. PACE AND REST
All my life I was on the go. It was the lifestyle I knew and loved since I was a little kid– my schedule was filled with school, dancing classes, gymnastics and so on. Any time spend in rest made my feel unfulfilled and guilty. Whether you like it or not, an injured brain simply CANNOT TAKE THAT. Much like a battery– the lower you let it run, the harder it will be to recharge. In order to have that rest you will need to explain to people surrounding you that this is how your brain now operates.
3. LEARN TO USE HELP
Learn to trust your supporters. A judgment of an injured brain can be subjective and skewed. You may misinterpret information or even the way it is presented. An innocent joke may become offensive and a brief comment into a judgment. When someone says “I did not mean that” listen, really listen, look back and analyze what made your perception incorrect. Write down the statement in question if necessary and discuss it with the people you trust. In spite of my enormous desire for independence, I needed to learn to bounce my ideas off of my friends. Not only do you get a chance to see a different point of view, but you also take time to distant your actions from original emotions and make more sound decisions.
4. COMMUNICATE
I will be the first one to admit that I did go through the stage of feeling sorry for myself and expecting everyone to understand my injury without my mentioning of it to them. But the fact is that unless you experienced Traumatic Brain Injury, you are almost unable to comprehend what it really is like. Let me tell you what happened with me on the bus tour that my father and I took in Italy. Our tourist group included a lady who had a bad limp due to the injury she had as a child. One day as we were enjoying the tour something triggered my irritation and even tears. My dad said: “I wish I could ask you to stop being that emotional”. To which I could only respond: why don’t you ask this lady to stop limping. Or why don’t you ask an amputee to grow back a missing limb?” My dad’s reaction was amazing and, for the first, time he saw that I actually had injury something beyond my control. This was the first time he realized that the injury was real although invisible. And that was the reaction from a person who no doubt loves me and cares about me. This was a lesson to the both of us. It opened my eyes to the necessity of education about BI and we survivors are the ones who can probably do it in the most effective manner.
SO: TELL THE STORY.
At first I was reluctant to tell people what happen to me. I was afraid of judgment. Unfortunately even now for many people brain injury has a meaning of retardation, loss of intelligence and personality and scares them away. People tend to be afraid of what they do not understand or do not know. Instead of hiding the condition and risking it coming known accidentally and in a negative way, I can choose the way it will happen. And if communication does not work, I can always make a choice to step away from these people.
5. BELIEF
Nobody, even your doctors know what your brain is capable of. No brain is the same, no injury is the same. You can get better. It takes time and tremendous effort, but I believe that I had to try to rebuild some of the functions. I found it helpful to have short-term goals along with long-term dreams on the background. With that said, I keep these plans for myself while learning to manage expectations of people around me.
6. BE PERSISTENT
A lot of times we have to be persistent with insurance companies and medical personal and there is nothing wrong with that. I learned that I cannot feel guilty about asking for additional tests or appointment. Doctors are at times overwhelmed and unfortunately some can be inattentive. I had to change three primary care doctors and more than a year before I was finally sent for MRI. The tumor size and therefore the damage could have been smaller if I had surgery sooner. So we have to push for the care that we believe we need, seek additional opinions if needed.
7. PASSION
I was always a very emotional person and after the surgery it became almost unbearable. It was obvious that I needed to have a way for expressing these emotions. Now, that was one task I did not have difficulty with. So I threw myself into the activities I always liked– sports. What I want to emphasize though is that what once was a simple joy now became therapeutic and detrimental to recovery and emotional survival.
Another passion of mine is coaching ballroom dancing, which I always turned to in rough times. Now I volunteer at the dance studios and that too gives joy and meaning to my life.
8. USE RESOURCES
Since my physical recovery appeared to be outstanding, I was not sent to any rehabilitation facilities. My initial denial worsened the situation as well. After I was fired from my job I decided that I was finally ready to look for a support which eventually led me to Brain Injury Services, Inc. who I found through the Internet. My case manager at Brain Injury Services was beneficial to my recovery on several levels. I found somebody that truly understood the nature of what the Brain Injury patients dealt with on a daily basis. My case manager helped me to put structure and perspective in my life. She gave me information about what recourses and tools are available for my development and recovery.
Seeing case managers and other patients at Brain Injury Services helped me to find a way to express my emotions, my energy. BIS also streamlined my life in a way. And of course it my case manager connected me to the speaker’s bureau where I hope to use my experience to benefit others in any way that I am able, not to mention to find continuous emotional support, reinforcement of my cognitive recovery and a sense of purpose and fulfillment.
I am still only at the beginning of my path and have a long way to go. I still have problems with memory, attention, concentration and my ability to multitask. I will probably have this for the rest of my life. But I am developing an ability to face my deficits as a strong, driven and hopeful person. Sometimes I even think that all of this happened for a reason– I can finally do what I am passionate about, I am even closer to my family and friends, I have found new friends, and I am taking the time to stop and enjoy little pleasures in life.
With that said, I admit that I was very lucky not to loose a lot of my physical functioning, however from the moment I woke up in ICU I realized I did have problems that I would have to fight through in my recovery. Mainly, it was deficiency in memory and math. Since the main part of my prior job as Senior Insurance Account Executive included both complex financial analysis as well as my ability to remember large amounts of client information from the top of my head, I had to go out on short-term disability. Still I strongly believed that this would be temporary and I would soon return to my life the way I knew it. You may say I was in denial of the fact that my life changed. I did go back to work after 3 months. But nothing was the same. I could not remember even my client names, I still had difficulty operating the numbers and needless to say that I not able to control my emotions with even minor conflicts sending me into breakdown. Now I can see that it should have been obvious that my career was coming to an end and I needed to concentrate on the recovery but still it took almost 2 years for this idea to sink it.
There are a few lessons I learned and am still learning from what I went through over these 2 years and I want to share them with you.
1. ACCEPTANCE
The first and toughest one for me was and still is, acceptance. For a proud and tough fighter like myself, letting go was the hardest step. I think I still miss myself like you would miss a friend who passed away unexpectedly and at times it brings me to tears. Part of me still wants to hope that I will regain my previous abilities. But if you want to move on with your life you need to figure out where to start a new life and that means figuring out the strategies and tools to do so: from writing down the activities and conversations in a daily manner, to speaking your thoughts out load to engage an auditory memory.
2. PACE AND REST
All my life I was on the go. It was the lifestyle I knew and loved since I was a little kid– my schedule was filled with school, dancing classes, gymnastics and so on. Any time spend in rest made my feel unfulfilled and guilty. Whether you like it or not, an injured brain simply CANNOT TAKE THAT. Much like a battery– the lower you let it run, the harder it will be to recharge. In order to have that rest you will need to explain to people surrounding you that this is how your brain now operates.
3. LEARN TO USE HELP
Learn to trust your supporters. A judgment of an injured brain can be subjective and skewed. You may misinterpret information or even the way it is presented. An innocent joke may become offensive and a brief comment into a judgment. When someone says “I did not mean that” listen, really listen, look back and analyze what made your perception incorrect. Write down the statement in question if necessary and discuss it with the people you trust. In spite of my enormous desire for independence, I needed to learn to bounce my ideas off of my friends. Not only do you get a chance to see a different point of view, but you also take time to distant your actions from original emotions and make more sound decisions.
4. COMMUNICATE
I will be the first one to admit that I did go through the stage of feeling sorry for myself and expecting everyone to understand my injury without my mentioning of it to them. But the fact is that unless you experienced Traumatic Brain Injury, you are almost unable to comprehend what it really is like. Let me tell you what happened with me on the bus tour that my father and I took in Italy. Our tourist group included a lady who had a bad limp due to the injury she had as a child. One day as we were enjoying the tour something triggered my irritation and even tears. My dad said: “I wish I could ask you to stop being that emotional”. To which I could only respond: why don’t you ask this lady to stop limping. Or why don’t you ask an amputee to grow back a missing limb?” My dad’s reaction was amazing and, for the first, time he saw that I actually had injury something beyond my control. This was the first time he realized that the injury was real although invisible. And that was the reaction from a person who no doubt loves me and cares about me. This was a lesson to the both of us. It opened my eyes to the necessity of education about BI and we survivors are the ones who can probably do it in the most effective manner.
SO: TELL THE STORY.
At first I was reluctant to tell people what happen to me. I was afraid of judgment. Unfortunately even now for many people brain injury has a meaning of retardation, loss of intelligence and personality and scares them away. People tend to be afraid of what they do not understand or do not know. Instead of hiding the condition and risking it coming known accidentally and in a negative way, I can choose the way it will happen. And if communication does not work, I can always make a choice to step away from these people.
5. BELIEF
Nobody, even your doctors know what your brain is capable of. No brain is the same, no injury is the same. You can get better. It takes time and tremendous effort, but I believe that I had to try to rebuild some of the functions. I found it helpful to have short-term goals along with long-term dreams on the background. With that said, I keep these plans for myself while learning to manage expectations of people around me.
6. BE PERSISTENT
A lot of times we have to be persistent with insurance companies and medical personal and there is nothing wrong with that. I learned that I cannot feel guilty about asking for additional tests or appointment. Doctors are at times overwhelmed and unfortunately some can be inattentive. I had to change three primary care doctors and more than a year before I was finally sent for MRI. The tumor size and therefore the damage could have been smaller if I had surgery sooner. So we have to push for the care that we believe we need, seek additional opinions if needed.
7. PASSION
I was always a very emotional person and after the surgery it became almost unbearable. It was obvious that I needed to have a way for expressing these emotions. Now, that was one task I did not have difficulty with. So I threw myself into the activities I always liked– sports. What I want to emphasize though is that what once was a simple joy now became therapeutic and detrimental to recovery and emotional survival.
Another passion of mine is coaching ballroom dancing, which I always turned to in rough times. Now I volunteer at the dance studios and that too gives joy and meaning to my life.
8. USE RESOURCES
Since my physical recovery appeared to be outstanding, I was not sent to any rehabilitation facilities. My initial denial worsened the situation as well. After I was fired from my job I decided that I was finally ready to look for a support which eventually led me to Brain Injury Services, Inc. who I found through the Internet. My case manager at Brain Injury Services was beneficial to my recovery on several levels. I found somebody that truly understood the nature of what the Brain Injury patients dealt with on a daily basis. My case manager helped me to put structure and perspective in my life. She gave me information about what recourses and tools are available for my development and recovery.
Seeing case managers and other patients at Brain Injury Services helped me to find a way to express my emotions, my energy. BIS also streamlined my life in a way. And of course it my case manager connected me to the speaker’s bureau where I hope to use my experience to benefit others in any way that I am able, not to mention to find continuous emotional support, reinforcement of my cognitive recovery and a sense of purpose and fulfillment.
I am still only at the beginning of my path and have a long way to go. I still have problems with memory, attention, concentration and my ability to multitask. I will probably have this for the rest of my life. But I am developing an ability to face my deficits as a strong, driven and hopeful person. Sometimes I even think that all of this happened for a reason– I can finally do what I am passionate about, I am even closer to my family and friends, I have found new friends, and I am taking the time to stop and enjoy little pleasures in life.