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Interview With Barbara Martin

Updated: Jan 27

Please tell me about yourself! You may start wherever you would like.

My name is Barbara Martin. I’m going to be 67 years old soon. I am a retired health care CEO. I’m a wife, a mother of two adult daughters, a grandmother to three beautiful little grandchildren, and I’m speaking to you from beautiful Lady Smith, British Columbia.

Please share as much information as you feel comfortable sharing about the nature of your injury

and how it was caused. What are your most important thoughts regarding this period of time?

In October of 2018, I was babysitting my two youngest grandchildren. I had told the older one to pick up all of the little tile toys that she had on the floor. She did, except that she missed one. I got up from where I was sitting because I was going to walk to the school bus to meet my other granddaughter. However, I slipped on that tiny little toy. I fell forward, but I kind of flipped somehow and fell backwards. I cracked the back of my head on the floor and lost consciousness. When I woke up, my four-year-old granddaughter was in charge. Thank God I wasn’t holding

the new baby when I fell. Had I not regained consciousness, I can’t imagine what would have happened to the baby.

My granddaughter got the phone for me. Initially, I thought that I had just hurt my knee. I had fallen very awkwardly, but I didn’t hit anything on the way down. There was nothing to be hit. The next day around noon, I realized that my knee was not a serious problem, but my head was. Since my background is in healthcare, I was certain that I had a concussion. I called my friend, who is now my husband, and told him that I needed to go to an emergency center since I couldn’t actually walk there. He came over and took me. By the time I got there, I couldn’t actually

register myself for admission because I was falling over and throwing up. I was given the standard immediate first day treatment for my concussion. I saw my doctor almost immediately, and she ordered a CAT scan. Thank heavens there wasn’t a brain bleed. My journey through traumatic brain injury and post-concussion syndrome had begun.

It has been a very emotional journey, one that has been very frustrating and lonely. I had to spend the first eight months in the dark, all in silence. I couldn’t stand motion. Any type of stimulation was too much for my brain. I had to just survive it at the time. I couldn’t even afford to be unhappy. I just had to survive. The migraines, nausea, brain fog, sensitivity to light and sound, just continued on and on. I was fortunate to have, for the most part, good care providers. However, nothing would have prepared me for this. Even though my background was in

healthcare, I never ever thought that a simple freak accident, like the one I had had, could change my life so dramatically.

Two and half years later, I have probably recovered as well as I’m going to. I have permanent deficits in auditory and written comprehension. My short-term memory has been seriously affected. There is not a lot of support for this kind of injury. You mostly have to go looking for your own support network. Most people don’t understand brain injuries. It is not like anything else as invisible injuries are very difficult. I mean, you wouldn’t walk around with a cast on your head, but you almost should have one there because you have sustained something traumatic.

After this kind of injury things aren’t the same, and yet people expect you to be the same. One of the other problems that I have is communication, which used to be my strongest suit. I have paraphasia. I say the opposite word to what I mean. For instance, I might say, “I’m going to buy a house,” but I would actually mean that I am going to sell a house. This has created a lot of confusion along the way. Now that I am onto this problem, I always have a proofreader with me when I am looking at financial or legal documents. I do miss words, or I misinterpret them, or I

say the wrong word when I mean something else. Through testing, I know what my full intellect and my full insight have become, and it is a double loss. I know what I’m missing. I know who I’m missing. I know that the lady who I use to be is not coming back. My journey has been pretty painful, both emotionally and physically. However, all I can do is to accept and adapt to my new situation.

What do you think changed the most after your injury and how have you been coping with it?

What changed the most for me is that I went from being an independent, fast-thinking, fast-acting, multitasking, high functioning individual to somebody who almost has to be spoken to as though I am a two-years-old. It does get very frustrating for the person who is talking to me and for me as well. I cannot understand a lot of instructions. For example, if I’m told this sentence, “I will meet you over there and have lunch,” I can’t sort these instructions out. It just goes into the air; but it doesn’t go into my brain. Instead, I have to be told things in little chunks. I think some people are shy to do that. However, as I get more confident that this is my new reality, and I’m getting better, I explain to them what I need. I’m angry; I’m sad; but I’m trying to use this experience so that I can help others because it is a very lonely journey.

Have there been any obstacles in your life that have hindered you from achieving your goals or tasks that you wanted to do?

The physical disability itself which affected my vision and my balance, and caused migraines, nausea, total confusion, and the brain fog, prevented me from achieving any goals. I learned the spoon theory, which became a very useful tool for me. The spoon theory says that every day we wake up with so many spoons in our jar. When you are healthy and things are going well, you have a multitude of spoons. You can do all kinds of things, and you probably don’t even use up

all of your spoons for that day. When you go through something difficult and in this context, it would be my brain injury, you might only have three spoons in your jar for the whole day. That is what shakes you up. You have to choose how to use those three spoons because if you use more than what you have, then you’re going to come up short in this situation. Then you’ll have to pay the price.

This has become a very useful tool because I can understand and visualize how many spoons I have today. For example, if I have to go to the doctor tomorrow, I know that it will require a spoon, leaving less spoons for other things. Pacing becomes very important. Initially, I tried to push harder than what I was capable of doing. Then, I would just have a massive relapse. I still relapse. If my brain has been overtaxed in any way, it can lead to general fatigue or illness. It could be anything emotional. Anytime I get frustrated, like trying to repeat doing something and I can’t figure out how, the more I try, the more upset I get, and the more it doesn’t go well. Whatever analogy works for you at pacing yourself is really important. However, you have to be your own best friend. Other people, even the people who love you the most in the world and want the best for you, don’t understand how many spoons you have in your jar. Only you understand. Since you want to make everybody happy, you know if it’s your child’s birthday, and you decide to push, you are the one who will pay. It caused me a few false starts. But once I figured out that I was the one who paid the price when I overdid things, I just stopped doing it. I’m very capable now of saying, “No, I cannot do that.” I don’t use it as an excuse, and I never will. However, I have to police myself. The only person who controls me, my energy, and how I feel, is me. Other people try to do everything to include you. It is not even malicious that they are pushing you, but they are pushing you. Sometimes you have to say that you need some space.

Oftentimes, I just go into a dark room in order to be left alone for a little while. You can kind of rest there without having to take something for pain.

It is a journey. Everybody’s journey is different, but in this brain injury story, everybody’s journey is the same. Everybody’s brain is different so everybody’s brain injury is different, but there is a degree of commonality as well. There is comfort when you find where the commonality is. Otherwise, you just feel so isolated.

Are there any people for whom you are thankful for their help in your recovery?

The man who became my husband is definitely number one because it was a new relationship, and he stuck with me through it all, no matter what. There were days when I couldn’t figure out how to put my own clothes on or how to feed myself. Those times were pretty bad, but there were all kinds of other things that I was probably capable of doing. I would initially get up, make toast, have coffee, and think that it was going to be a great day. Five minutes later, I would go back to bed in the dark. My husband was extremely patient and didn’t question me. He would

sometimes encourage me to try harder, but we came to this place of acceptance. He has been by my side throughout the journey, even though we do not live together. I lived alone in this house. My family’s doctor is amazing, just absolutely amazing, and I’m so thankful for my son-in-law. He is a wonderful source of inspiration and information. My family loves me, but I couldn’t even stand to be with them because I couldn’t stand to talk or have the lights on. The person who saw me the most is the man who is now my husband.

Is there anyone who has inspired you throughout your journey?

People who are dealing with something that has changed their life inspire me. It could be a terrible diagnosis or something like that. Everybody’s bad news is their bad news and their burden. Many people have inspired me, and I hope that somehow I can inspire others. I am in a position where I have to adapt to things. I refer to myself before my injuries, as “Me, version 1.0.” I am now “Me, version 2.0.” The transition has been really painful. I don’t minimize my own pain anymore. People say to me, “Oh, it could always be worse.” No, for me this is bad

enough, and I accepted it for what it is.

After the pandemic cools down, what is the first thing you would like to do?

I live in British Columbia, so I would like to fly back home as fast as I can to see my little grandchildren. I phone and message them with video chats. We zoom each other occasionally, for example, during holidays. However, I want to see them in person again.

What advice would you give to brain injury survivors who are trying to live their new lifestyles?

My most important piece of advice is, find a good support group. In Canada, I found there was an established brain injury group, but it was the wrong fit for me. I had to go looking for resources. Resources don’t come and ring your doorbell saying, “Oh, you have a brain injury; here is what I can do for you.” You have to figure this out on your own, in spite of the fact that you have a brain injury. I was actually really fortunate to stumble on a Canadian Facebook concussion page by accident. It provided me with a support network. Of course, first, you have to

do all of the physical stuff that your doctor tells you to do. However, find a support group. Find somebody who understands what it means to walk the walk and talk the talk. It is really no different than having a baby. It is like trying to explain to somebody else how to have a baby who has never had one. A person who has had a baby understands more of what you are talking about. The same applies to a brain injury.

Interviewed by Brianna Paulino

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