Spotlight: Stories of Resilience (Erin Paterson)

Posted on May 20, 2022 at May 20, 2022 by Emma Grushkin

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Making Lemonade
An Interview with Erin Paterson (by Emma Grushkin)

Erin Paterson, author, public speaker, and entrepreneur from Toronto, Ontario, Canada is on a mission to help people by writing and speaking about genetic disease, depression, and infertility. Erin’s story, told in her new book, All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness, proves that it is possible to live a meaningful life, even when faced with unexpected obstacles.

It was not until Erin and her husband shared their news of starting a family that Huntington disease was mentioned for the first time. When Erin’s parents shared their suspicion that her grandmother may have passed away due a genetic condition, many questions were left unanswered. With this newfound knowledge, Erin was set on a quest and decided to get tested. Eight months later, she discovered she was gene positive for Huntington disease.

This news challenged Erin and her spirits, but her determination to start a family remained strong. However, Huntington disease wouldn’t be the only obstacle in her path. After two and a half years of trying to become pregnant, Erin’s doctor concluded that she had undiagnosed infertility. Following five and half years of fighting the odds to become parents, Erin and her husband met their adopted five-day old baby girl. Erin’s dream of becoming a mom had finally come true.

Now an advocate, writing coach, and owner of her own publishing company, Lemonade Press, she has made it her mission to help others by sharing her story and the stories of others.

What inspired you to write about your experience with Huntington disease and infertility?

I wanted to write a book because this was such a life-changing experience for me, and it needed to be written down. I wanted to give the HD and infertility community a voice and let people know what being gene positive feels like. My goal is for other people to read the book and feel a connection to what I’ve written. For me, reading really got me through.
Writing has been a healing process for me as well. I wrote some chapters 30 times before it began to make sense to me in hindsight. Now that the book is released, I can share my experiences and help people who are where I was 15 years ago.

Your journey began when your parents shared their suspicion that your grandmother had passed away from a neurological disorder. Then, you decided to take a genetic test for Huntington disease without your family knowing. What went through your mind when you received the results?

We didn’t know of any family history with HD. It wasn’t something that was ever talked about. My grandmother passed away when I was twelve years old and then it didn’t really come up again until I was 31.
When they read off my genetic report, I just thought, “What am I supposed to do now? How am I supposed to go on living my life with this knowledge?” I thought I had experienced depression before getting my genetic test results, but I realized that was just sadness.

My husband was an incredible support to me. I doubted myself and only saw myself as HD. Every single night for a long time, I would cry myself to sleep in my husband’s arms and ask, “Are you sure you still love me? Are you sure you’ll still love me even with HD?” He would assure me, “Yes, it doesn’t change any of that. I’m not going to leave you. Of course I still love you.” He repeated that over and over again for years and thank goodness he had the patience. We’ve been married 20 years now. We got married in our early twenties and we’re very open with each other and communicate our wants, needs, and fears.
How did you find the motivation to improve your outlook on life?

It was a very challenging time, but I knew the moment I got my test results that I didn’t want that to ruin the rest of my life. I knew I wanted to find happiness. I just didn’t know how to do it. Every day, I would take little steps, writing in my happiness journal or going for a run with friends. Eventually, I began to find happiness again.

What did starting a family mean to you?

I always knew I wanted to be a mom. When I was a kid, my mom ran a daycare out of her house. I would rush home on my bike after school and play with the babies. It was always the way I projected my life going, that I would have kids. I never even thought of infertility before I started experiencing it.

How did HD impact your experience trying to become pregnant, and how did you learn about your undiagnosed infertility?

After I was diagnosed as gene positive for HD, we questioned whether we should have a family, because we didn’t even know if it was morally correct knowing that our child was at risk. We felt like we were answering all these big questions for society, and it was just the two of us.

I did try natural conception at first, though some people in my family thought that was wrong. After a year and a half of trying to become pregnant, using minimally invasive methods, my doctor told me I had undiagnosed infertility. On paper, everything looked good, but nothing was working. At that point, we were faced with doing in vitro fertilization (IVF), and we chose to do so with preimplantation genetic diagnosis (PGD). At the time, it was still considered very experimental; in fact, we were the first people in our clinic to do PGD. As part of the process of our IVF with PGD, cells from our embryos had to be sent down to Detroit, so it wasn’t even available in Canada.

Unfortunately, I was a poor responder to the drugs, which means I didn’t create a lot of eggs, so we didn’t have a lot of embryos. Sadly, all our embryos had HD, so we didn’t get a chance to use any of them. Three months later we tried again. We had two embryos, luckily, that were HD free, and we used both. However, neither of them resulted in a pregnancy.

We had been trying to get pregnant for over two and a half years, and at this point I was emotionally exhausted. Going through infertility is like having a part-time job. I went to the clinic every morning. It opens at six in the morning so people can go before work. Sometimes, it took two or three hours between getting a bunch of tests done and meeting with the doctor.

When it was so challenging for me to have a child, I often thought, “Why am I doing this to myself? Why do I want to have kids so badly?” It was hard to explain why I would put myself through five and a half years of pain to have a family. Nothing worked. Natural conception didn’t work, going through IVF didn’t work, and none of the fertility treatments worked. I thought, “Well, let’s try adoption.” I needed to feel like I tried everything I could.

What was it like going through the adoption process?

We didn’t know if we’d be allowed to adopt with my genetic status. I couldn’t find any answers, nor could our adoption consultant. The only thing we could do was try, so we decided to adopt privately. We did 27 hours of mandatory parenting classes and 10 hours of interviews with the social worker. At the time, it felt as though my entire life had been devastated by HD and I was still going through a deep depression. During the interviews, we had to act like HD wasn’t a bad thing. We knew if we made a big deal about it, the social worker would too. So, we just had to educate her about HD in a positive way.

How did you feel when your dream of becoming a parent finally came true?

We got a phone call from the lawyer on a Sunday morning. She told us that we had been chosen to be the parents of a baby girl that was born the day before. We became parents without any warning and flew out to meet her on Thursday. When we saw her for the first time, it was an intimate moment, but we were also surrounded by a bunch of strangers who were watching. It felt completely surreal. The first four or five months we were in total shock.

We didn’t officially become our daughter’s parents until she was 11 months old. It was a very exciting time, but also very stressful. Until the court paperwork came through, I was terrified that somebody was going to read about my genetic status for HD and take our baby away. I did suffer through some post-adoption depression as well, which not a lot of people know about. You still mourn the loss of your own fertility when you adopt a baby.

How do you practice a positive perspective?

I’ve come to a level of acceptance with my disease by going through a lot of therapy. It is still hard knowing what my future holds, especially as my Dad’s symptoms are worsening. I started meditating 10 minutes a day. There’s a park that I like to visit two or three times a week. Being in nature is relaxing and healing for me. Writing has been cathartic, too. I also use a lot of mantras, positive affirmations.
It’s always important to provide a balanced perspective. Whenever I write an article, I always provide balance with the good things that have come with HD, such as a lesson I’ve learned or a silver lining from an experience. I decided to see the positives in this and view it as a challenge to contend with.

I think about how my daughter will experience me going through the symptoms of HD one day. When I visit my Dad, I’ll say to my daughter, “I went to see Grandpa today. He was having trouble walking, and it was really hard for me to see him walking that way. But, isn’t it amazing that he’s 78 years old and he’s still able to get around with a walker?” I don’t want her to dread or be fearful of HD. I want her to think that this is a part of life. Everybody has something they must deal with when they get older.

How did your daughter find out about your gene positive status for Huntington disease?

We were in the kitchen, and she came up to me with these big eyes and said, “Mom, is there anybody else in our family who has Huntington’s disease?”
“Oh, why do you ask?” I said.

“I just want to know. Is there anybody else in our family who has Huntington’s disease?” I thought to myself, okay, well, this is the moment I have to tell her about myself. It felt very momentous, and after I told her she just said, “Oh, okay.”

So, I questioned, “Well, why do you ask, how come you ask?”

“I just figured, you’re writing about it and talking about it all the time. I just figured it out,” she replied. My daughter had been picking up on it all along. We don’t act like it’s a huge deal. It’s just life. It’s good that it came out that way.

What lessons do you find important to teach your daughter?

We’ve been bouldering as a family, which is similar to rock climbing. It’s really neat to watch my daughter. It’s very hard on the body, so after a climb you have to rest for 10 or 20 minutes before you can get up and do another climb. We’ll sit and look at the problem and talk about it. “Oh, what if you did this? What if you put your body this way? What if you put your foot there?” It’s great to problem solve with her.

As a parent, it’s fun for me to watch my daughter fail at something and then keep trying. That’s an important life lesson for her. Sometimes, she’ll try a climb 10 or 15 times before getting to the top. She’ll come home and think about the climb. “What can I do differently to reach the top?” Then, when she does, it’s such an exciting moment for her to get up there. I feel like that’s building a tiny bit of resilience in my kid. The fact that it’s not coming easy and she’s still trying anyway.

What advice would you give to others with Huntington disease on feeling empowered?

For me, a lot of the empowerment and self-value came from not living with a secret anymore. When I was carrying that secret around, I felt like I was only living half my life. I felt like I couldn’t have a full, honest relationship with people if I wasn’t able to tell them about that part of my life. Coming out from that secrecy was a big deal for me.

It’s important to have a support system with people who will pick you back up and get you moving in life again. I had a group of running friends, and they were the few people who knew about the genetic test. Before going through testing, they asked me, “Well, what do you want us to do if you get bad news?” I said, “I just need you to make sure that I keep coming out running. No matter how I’m feeling, get me out of bed and get me running.”

Now an owner of your own publishing company, Lemonade Press, what will you work on next?

My next book will be an anthology of 15 to 20 different HD stories told from different perspectives, such as from someone who’s gene positive, gene negative, somebody who’s trying to have a family, a caregiver, a genetic counselor, or scientists who are searching for a cure. I want it to reveal what motivates people and the bad things that HD has brought into their life, at the same time as balancing it out with the positive and empowering things. It will be really exciting to help people realize the power in their own stories and see how sharing can help connect people within their own community.