Every Day is a Gift : Interview With Michel White
Please tell us a little bit about yourself, start with whatever you would like. My name is Michel. I’m 58 years old. I was born and raised in Northern British Columbia. When I was 21, I was diagnosed with a very large pituitary adenoma. My daughter was 16 months old. And it’s been quite a journey ever since. Please share as much as you feel comfortable sharing about your injury and how it was caused. Also please share your thoughts regarding this period of time.
I actually typed it out because of my memory. If it is alright with you, I’ll read it out. In 1985 at the age of 21 I had a large adenoma removed from my pituitary gland. The doctors wanted me to have radiation but my grandmother had just had it and I saw what it did to her so I declined. Within six months the tumor grew back to almost it’s original size. The doctors wouldn’t operate again citing too much scar tissue so said I had to have radiation. One year after surgery, in 1986, I had six weeks of external beam radiation.
Within five years I encountered many side effects from the radiation – including but not limited to – long and short term memory loss, difference in sensation between the right and left side of my body, loss of hunger and thirst, emotional outbursts and loss of the ability to laugh. In 2013, twenty eight years after my surgery, I had a meningioma removed that they feel was caused by the radiation. I now have two more growing that they also feel could be from the radiation. I now have an acquired brain injury, which has caused my long- and short-term memory loss, increased sense of anger and frustration, issues with sleeping, hot and cold sensation impairment, loss of hunger and thirst as well as loss of taste buds. I had to go for counselling many years ago due to the anger issues I had encountered and the way the brain injury was explained to me is this: The brain is made up of many workers like an office – presidents, vice presidents, managers and other workers. When you have a brain injury, someone or some people get fired or laid off. The rest of the workers then have to try to do their job and it isn’t always right or accurate. I love this analogy because it explains so many things – like why I have trouble holding onto a pair of scissors when I sew, or why I forget what things are to be used for. It has been 36 years and new things are still happening from my ABI. It’s never any fun and sometimes I get very frustrated, but life is good. I can see, hear (with my hearing aids), walk, talk, have my arms and legs as well as my family and good friends. Every day is a gift – yesterday is history, tomorrow a mystery and today is a gift – that’s why it’s called the present.
Thank you for that gorgeous introduction. Can you please specify on the loss of the ability to laugh? Yeah, so I lost the ability to laugh. My husband noticed it quite drastically. Because he and my daughter would laugh at things, and I would sit there looking at them going “but that’s not funny.” It’s almost like I had to relearn how to laugh. Even now, they will sit and watch TV shows and they are laughing and I look at it and go “What’s so funny about that?” It’s something that's still there but no way near what it was like originally, but I also have to work past that. My daughter was 16 months old when I had my tumor removed. She was two and a half when I had the radiation. With all the side effects and the brain injury issues that I’ve got, she said she almost wishes I haven't had the radiation. But to me, you really make the most of what you have. And I always tell the doctors - I don’t worry about stuff. When they told me I had two more tumors growing. I said, “So, should I be worried?” And he looks at me and he goes,”No. They’re still kind of small and they are not growing very quickly, so no.” And I said, “Okay, so I’m not going to worry, I’m not going to worry until you tell me to.” So You know, I have to look at it that way with pretty much everything. I’ve got all kinds of things going on now. It's like 36 years was the trigger for the big things to start happening with my acquired brain injury and other issues from the radiation. But yeah, I don’t worry. My daughter says I don't have to because she does it for me.
How old is your daughter? She’ll be 38.
And is she okay? I saw in your email that she is getting a lung scan. She has a rare lung disease. And so she needs a double lung transplant and so they got her on a whole load of tests right now to get her ready for the transplant team. With all that you have going on, what did it feel like when your daughter was diagnosed with the rare lung disease? It was kind of weird. She’s had asthma and other breathing conditions growing up. Just before she turned 30 I said to our doctor that this is ridiculous, something’s happening, you don’t get asthma and stuff this bad all the time for no reason. And he said, “Well, let’s do a CT.” And it’s funny because I almost regret having had that CT scan done for her. Because they did the CT scan and he said to us that I’ve made the appointment for you to see a respirologist. And we were like okay. And we were sitting in his office and he was looking up at his screen. And we have no idea what’s on his screen. So he sits there and on a little sticky pad and he writes this big long name, and he turns the sticky pad around, and he said that’s what you have. It’s called lymphangioleiomyomatosis. And he said eventually you will need a double lung transplant. We sat there and we were just dumbfounded. To be told that your thirty year old needs to have a double lung transplant down the road. It was really weird, really really strange cuz you don’t
expect stuff like that. And we’ve been on that journey ever since. Her first lung specialist was horrible. So eight year later, she’s now at the place where her specialist is getting her ready for the transplant.
So it's been an interesting journey. I deal with this stuff everyday and for her to have issues, it's really kinda, “No I don't want my daughter to have issues.” It’s enough, the stuff that I deal with everyday. How has your husband helped you and your daughter through this process? My husband is my strength. He’s the one who gets me through stuff because I know that he’s by my side. And everyday to me is a gift because he is always by my side. There are times he doesn’t understand and he stands there and yells at God and goes: What is going on here? But I know he is always there. It’s the same with my daughter, we don’t understand what is going on, but we are always by her side. So I can’t imagine life without my husband. I used to have a Canadian Pituitary organization. And I know so many spouses left because they couldn't handle the emotional stuff from the person going through pituitary issues. And yet my husband, he’s stayed.
How has your injury changed your life? Before I had my meningioma removed, I was working in the school district as a TA. The kids started telling the teachers that they were afraid of me. And the teachers noticed that my personality changed. The meningioma really changed a lot of who I was. I wasn’t the person that I was before - emotionally or personality. I had a headache everyday for four years, it just never went away. And after having the meningioma removed, I felt a lot better because my headache was gone. It was funny because when I woke up from recovery, my headache was gone, and the doctor asked how are you doing. I said my headache is gone, he said it’s too soon. I saw him a couple of days later and he said how are you doing and I said my headache is gone! He said “no, it’s still too soon.” And so then I saw him a couple of months later and he said how are things going and I said I still don’t have a headache. So he was glad that he removed it because it needed to come out. There’s a lot more on my plate now than there was before with different issues as I was diagnosed with psoriatic arthritis and I’ve got pain in my legs that’s just brutal. I take medication for Restless Legs Syndrome (RLS) although they say I don’t have RLS but I’ve got all the symptoms. So there are a lot of things that have happened. And I think for me the biggest thing is having support. I cannot see doing this alone. I have a relationship with God, that is my strength. And my husband and my daughter are my strengths here. And I cannot fathom going through something like this alone. It is just unimaginable. Everyday has issues, but when I get through everyday I'm thankful for another day.
When I was originally going through this, I had such anger issues that I had to go for counseling, to see a neuropsychologist. She’s the one who explained the whole brain injury/office issue to me. I think of all the things I've learned over the last 36 years and that’s the one that means the most to me, because it explained so much about why I can’t hold onto things and why I get
frustrated and why a lot of these things are happening and it really helped me understand what a brain injury is. I’ve really hung on to that. It's a great analogy because you understand that there's an area that is not working and why it’s not working. I hear all the time that the brain can heal but you give your brain six weeks of radiation therapy and nothing heals. In fact it gets worse over time. And then I had a doctor tell me that because of how much radiation I was given, I shouldn’t be alive.
When you're facing those anger issues, what’s one thing that helped you alot in terms of trying to understand yourself and trying to control it? In other words, what advice would you give to people who are brain injury survivors or stroke survivors trying to adjust to their new lifestyle?
I’ve never been able to control it. I’ve never had the ability to stop my anger. With another counselor, he helped me make these signs - One of them says “Stop, take a break for 5 minutes”. It helps me to remember that when I get frustrated, get angry, or start feeling overwhelmed, that I know I need to take a break. For me, that's the biggest advice I could give to anybody. When you start to feel like everything is around you and you feel so much inside that it just wants to explode. The biggest advice is to take a break, even if it’s for two minutes. Just take a break. I have a home sewing business and I need to do the same thing with that. There are times I get really frustrated, I go wait a minute here, I need to walk away from it for a couple minutes. It's all part of my brian injury - just knowing that I have to stop, I have to walk away. I think one one of the other things I’ve learned is that I need to take care of myself. I have to go, okay you are important, you can do it. It’s huge. People say it sounds so simple but for someone with a brain injury, it’s not always so simple.
Can you tell us a little more about your home-based sewing business? I have sewn custom wedding dresses, custom dresses, pants, skirts, bridesmaids dresses, prom outfits, men’s and ladies suits as well as alterations for pretty much the same. I love altering suits, I think it’s fascinating. Alterations are my passion. My business is called Seams to Fit. I love to take what you bought in the store and make the seams to fit you. So many people buy something at the store, then they take it home and they don’t like how it fits. So it sits in the closet or in a drawer and they don’t wear it. I love taking these clothes and making them so you love to wear them. There’s not much that I haven't done. We lived in the same place for 29 years but we had to move and I lost a lot of customers. The landline company cut us off. Then of course, Covid hit, and with Covid it’s been really tough.
Was sewing a new-found passion after your brain injury or was it there before? I’ve been sewing as a business since 2001. So it was much after my injury. My great- grandmother was a fashion designer and my great aunt was a fashion designer in West Vancouver. People would go on cruises and she would sew everything from lingeries and formal outfits. She retired after 50 years. My mom always says that I came by it naturally because I’ve never taken any formal schooling. I’ve taken some courses but not formal schooling, which is
why I was so excited to be in New York. We went to the Fashion Institute of Technology as well as to some of the fashion designers there and got to talk to them about what they do. Sewing helps me focus sometimes as well. I have a lot of squeeze balls - it’s cheaper than throwing my sewing machine over the balcony. I have 25 different stress balls, all from different places. I have baseballs, police cars, brains, happy face balls, strawberries, hockey pucks, footballs. Every time I see a new one I ask if I can have it. I collected mugs when I travelled, but they break, so instead I’ve been collecting bears. I got one that says I love New York, one from Paris, England, I have a Paddington as well as many others. I went to a conference in Orlando a year and a half ago, before Covid hit and I brought a mug back for my daughter from Nasa Space center and it made it home in one piece.
I think out of all the issues that I’ve dealt with over the last 36 years, my memory loss is the one that bothers me the most. I lost my long term and my short term is very limited. I don’t remember my daughter growing up, I don’t remember me growing up. There are so many things that I don’t remember. Like I don’t remember last week. If you were to say to me what did you do over the weekend, I have no idea because the memories don’t stick. When I went to counseling, the neuropsychologist said that memory is actually an emotion. So a lot of times you remember emotions . When I was growing up my grandmother had lilac bushes in her yard, and what I remember is the smell, because that's my emotion. Yeah... Not being able to remember has been the hardest for me.
People say to me that “I would’ve never have realized that you had a brain injury or memory loss.” One of the things I had to do is work really really hard to not cover it up but to work through it. There will be times when I'm having a conversation, and I can't for the life of me remember what we were talking about. It’s gone. I’ll say, what are we talking about again. Sometimes I remember and sometimes I don't. I work really hard to carry on conversations. I don't often remember words, I remembered the first letter of words. The same with somebody’s name.
How has your brain injury changed the way people perceive you and interact with you? And vice versa? I know there are people who can’t handle it. They can’t handle the thought that I have a brain injury or memory loss, or other issues. And there are people who go, “well, you don’t look like it, you don’t act like it so it can’t be. It's not possible that you would have that if you don’t sound like that.” And I had to learn to deal with it when I say, “I’ve got long and short term memory loss.” And the person says that “Well I do too, it's not a big deal.” And I’ve learned to go along and laugh with them and say, “well I’m sorry about your memory loss” because people can’t deal with it. I don’t worry about stuff but there are people who do. I'm not concerned with that but some people are. I’ve had to go along with what people think and it's not always easy.
Because I know in my brain that it doesn't always work. I’ve got people who say to me “the brain heals, why aren’t you healing” But it doesn’t. I know people want to help, but a lot of times their helping actually goes backwards. I had to stop getting mad and go, I appreciate your thoughtfulness. But my brain... I wish it would get better, I wish I don’t have to take my medicine anymore, I wish that when my pill box gets empty I can tell my husband that I am all better. It doesn’t quite work that way. I had to stop getting mad at people and realize that their intentions are good.
I mean, this is something I deal with every single minute of every day. It will never go away, it will never get better, it’s actually been getting worse, but it’s my life, and I'm the one who has to go through it. But being there for me is the biggest thing. Just knowing that you are there, and that you are supporting me regardless of whether or not I remember who you are. I think with brain injury, one of the biggest things is recognizing that I’m me, this is me, for better or worse, this is who I am.
Interviewed by Tina Yang