By Amber Rae Bernhardt
Hi. I’m new here. Long time reader, first time writer for this lovely publication.
A few weeks ago, much to my extreme honor, a very inspirational woman asked me to contribute to this edition. Much to my horror, she asked me to write an article about health.
I spend nine hours a day in a fitness center…yet I’ve never taken advantage of its amenities. My job is to promote the health of others and I quite literally talk the talk but don’t walk the walk. In fact I’m embarrassingly below average in my wellness endeavors. I eat terribly, have poor sleeping habits and don’t get any activity outside of chasing around my two small children. With my access and proximity I have more opportunity than most and still here I sit, eating cheese and caramel corn (it’s so good you guys,) drinking way too much soda and having an anxiety attack about telling others how to be healthier.
When I got the call the compose this piece, after breathing into a paper bag for a while, taking a nap and hitting a drive through for some carb confidence, I tried to clear my addled brain and think about what I could possible write for you that would be worthy of this magazine, as well as of your time and kind attention, fair reader. So I determined to forget about health for a minute and started thinking about YOU. Women. Real, every day women, who work too much and play too little and spend more time focusing on your homes and your families and your responsibilities than you do yourselves. And I started to feel better, because that’s me, too. I know this stuff. Then I thought more, about the women I know personally, how they inspire me and how they find ways to be healthy, without a personal trainer or a nutritionist or extra income or free time. And then it hit me. I could talk about the most inspired woman I know. My mom.
I recognize that to say your mother inspires you is a cliché. And don’t get me wrong, she’s no Judy Garland or Elton John, but then that’s the point. She’s a regular person with a job and a family and bills to pay and a home to maintain. Yet my mother is anything but average, and her quiet determination and perseverance to not only survive but thrive have been the example that has kept me moving forward and climbing upward, even when things are at their most difficult. Thus I have decided the best way for me to share with you a story about health and wellness is to talk about my true hero. Here goes.
When my mother was 17 years old she was diagnosed with Hodgkin’s Lymphoma. In 1967 in rural North Dakota, there was no treatment and no cure. It was a death sentence. There was a radiologist in the area who was working on an experimental procedure and new therapies, and her family doctor recommended she try them for lack of anything to
For the next twelve weeks my mother received radiation treatments on an open table to her entire torso, neck and head. Lymphangiograms were conducted with radioactive materials administered into the tops of her feet through thick syringes anchored to a wooden block, heated by a light bulb and distributed by a slow press with small weights. Five days per week, three to five hours per day, the then teenager laid on her back, unable to move, while copious amounts of poisons passed through her body. In a matter of days, her skin was so burned and sensitive that discomfort had turned to pain and pain to agony and soon the alternative to her death had become torture.
“Did you think you were going to die?” I asked her as we prepared for this article. “Most definitely,” was her definitive reply. “I was always sure the next appointment was going to be the one where they said, ‘I didn’t work. It’s over.’”
“So how did you get through that? What did you do to cope?” I inquired. “I stopped looking ahead,” she told me. “I made short, small, attainable goals. Get through this minute. Now this one. Eat a few bites of food. Take a few steps. Just keep going. I also learned to compartmentalize myself,” she continued. “I would breathe, clear my head, isolate parts of my body and focus. I’d tell myself, ‘Be still, be calm, it doesn’t hurt. Count the ceiling tiles. Count the letters on the chart. Breathe.”
“What made you keep going? Why didn’t you give up?” was my next question. “When they marked me for radiation, they drew a line from my sternum to my navel, and another from shoulder to shoulder. I bore the cross, which started my journey of faith,” she said. “And I had a life to live. Small goals. I wanted to go to prom. I wanted to be in the senior recital. I wanted to graduate from high school. So I took those short steps, and I did it. After that, and I didn’t die, I just kept moving.” She got married that summer and time passed and more steps were taken, though it wasn’t until ten years later that she finally heard the words ‘cancer free.’
My mother told me, “They never really declared me in remission because they were never really looking for that. We were just done with the experiment then I got out of school and your dad and I moved and traveled. After many years, during a follow up procedure, they told me they saw no more signs of the Hodgkin’s. The incision from that surgery made a ‘V’ from my abdomen to my back. It was my victory scar.”
“After you were born,” mom said, “I set more small goals. Get you enough food. Enough clothes. A roof over your head. Get you an education. My faith grew stronger. I prayed and prayed every day ‘God please just let me get my children through high school.’”
With a new lease on life…my mother went on to do all the wrong things. She drank too much and smoked too much and ran as hard as she could toward something meaningful because in the back of her mind she knew it wouldn’t last. She had grown accustomed to a short sighted way of thinking and her practice became her purpose to live in the moment. I assure you it was a great deal of excitement and adventure growing up that way, but I digress.
Fast forward nearly thirty years to the turn of the century. My little brother was graduating from high school, I was getting married and my mother was diagnosed with breast cancer. “After the appointment I got in my car and drove to the church and just broke down,” mom told me. “I cried because God had given me exactly what I’d asked for and now my free ride had ended.”
It was then she realized that making a change and her continued survival was in her own hands; she was now in the driver’s seat. She owed it to God to no longer take her life for granted and her penance would be paid. None of those doctors in 1967 expected her to experience the new millennium, and the effects of the excessive radiation and rudimentary therapies they delivered out of desperation would continue to take their toll over the next decade and a half.
After the mastectomy came a surge of surgical procedures to remove or repair organs and tissue that were no longer functioning: her uterus, part of her colon, a portion of her kidney, her spleen, thyroid gallbladder and appendix. She was placed on permanent oxygen and underwent several bone fusions in her spine for fractures due to severe osteoporosis. She even received an open heart valve replacement. 14 major surgeries and countless minor twilight procedures later, she was diagnosed with CLL Leukemia. That was nearly five years ago.
“Now the only steps I can take are small ones!” my mother laughed as we neared the end of our informal interview for this article. “I’m still not ready to go and I’m not leaving any time soon,” she told me, proudly.
To the purpose of this story, there were things I wanted to know from my mother the fighter, the survivor, that I could share with all of you. What can a non-Judy Garland/Elton John type person do to maintain their own health and wellness? What can someone who is not in naturally good health, or who doesn’t have the means or the resources to acquire every day activity or nutrition support, do to achieve personal wellness?
“Do as I say, not as I do,” mom began, which has ever been her mantra, much to my constant irritation and conversely, my inspiration. “Just keep moving. Don’t focus on something so far away that it seems unreachable. If it feels impossible you’ll set yourself up for failure and disappointment. Set attainable goals, take small steps. Start by walking to the end of the driveway and back every day, until you can walk to the end of the block then do that every day. Then walk around the block, then keep going, just don’t stop moving. Lift a two pound weight a few times, then try a four pound weight. Do leg lifts. Start with three, then five, then seven. Get up out of your chair without using your hands. Stretch. Just. Keep. Moving.”
“Similarly,” she continued, “Don’t tell yourself ‘I can’t ever eat chocolate or chips.’ Don’t go on crash diets. Remember, impossibility is failure and disappointment. Make good choices. Limit sugar and salt. Eat lots of green vegetables and get enough protein and calcium. Small steps, attainable goals. In moderation, occasionally allow yourself a couple of chips or a piece of chocolate. Enjoy the things you like, but don’t think of it as a reward. Just make good daily choices, always. Soon you’ll feel better and your body will prefer the good things. And always eat breakfast and drink a lot of water. You won’t be as hungry during the day and you’ll find yourself snacking less.”
“Most importantly,” my mother said, “don’t wait until you’re diagnosed to live a healthy life. I waited until after the breast cancer diagnosis to stop smoking and drinking and start eating better. What saved me was the fact that I was always active. I spent my post Hodgkin’s years biking and hiking and swimming and dancing like no one was watching. Because of that I was physically strong enough to get through it. And once I started getting sicker I knew I had to stay active so I could continue to be strong. It wasn’t too late for me, it isn’t too late for anyone else. If you set small, attainable goals you can get through it.”
“I do wish they had support groups for survivors when I was young. I might have lived smarter sooner if I hadn’t felt alone. It’s so important to have a support system who knows what you’re going through and can relate to how you’re feeling and what you’re thinking. They have them now, so I encourage everyone who is facing an illness like this to join a group and discuss their journey. Family and friends are wonderful caretakers but until you’ve looked at yourself in a mirror after a mastectomy, or tried on a new shirt, or gone on a date, you really can’t comprehend the physical and emotional transformation that happens. So find someone who knows and talk with them about it. It helps so much to realize you’re not alone and have someone else to rely on.”***
“Finally, please remember this: You only have one life, and only one body to live it in. Treat it well, with kindness and respect. You’re going to live longer than you think you will so start looking forward now. Be grateful for what you have, work hard for the things you want and take care of yourself, for your family and for you. And never, ever stop moving.”
Last week, some good news. The CCL has not progressed and my mother needs no further treatment at this time. She has had several years of relatively good health, is enjoying her retirement, assists her elderly mother and spends quality time with her long awaited grandchildren. And while I have lived alongside her various illnesses for my entire life, it wasn’t until I had the opportunity to work with her on writing this article that I really understood all she has accomplished. How much of a superstar she really is.
I think part of me was always afraid to look too closely at the details of my mother’s life for fear of seeing myself reflected in her image. But now that the mirror has been turned toward me, I am apprehensive but appreciative about the next small steps as I hope to start my journey to health and wellness. I am nearly the same age my mother was when she was diagnosed with breast cancer. I have been far more fortunate than she has in regard to my health, but I have not been any more kind or respectful to my body. I owe it to myself, and to her, to start. It’s not too late. First, an attainable goal. Tomorrow, I will take a short break at work and walk once around the track that is literally fifteen feet from my office. The next day, I’ll take two laps. Next week…well…that’s too far ahead for me. I am my mother’s daughter, after all. But for now, in this moment, I’m inspired to take a short walk. Won’t you join me?
Free cancer support programs in Bismarck Mandan:
Livestrong at the YMCA
Missouri Valley Family Y
Next session January 17-April 6
Tuesdays and Thursdays
Breast Cancer Support Group
Bismarck Cancer Center
2nd Thursday of each month
Sanford Health Cancer Support Group
Peace Lutheran Church
1st Monday of each month, every Wednesday
Mid Dakota Oncology Support Group
Mid Dakota Cancer Center
2nd Tuesday of each month
Amber Rae is an adult theatre kid, a career promoter, and a proud mama. She loves Elton John, stand-up comedy, well-written television, and spontaneous travel. Amber is the YMCA marketing director in Bismarck and lives in Mandan with her rock ‘n’ roll partner, their two beautiful boys, and their bulldog.