Today, we’re talking with life coach Amy Colgan-Niemeyer, who was born with spina bifida, the most common permanently disabling birth defect in the U.S., according to the Spina Bifida Association of America’s website (spinabifidaassociation.org). The spinal column doesn’t close completely and it happens in the first month of pregnancy. It’s a neuromuscular disease in the same category as muscular dystrophy and cerebral palsy and others. Spina bifida means “split spine” but our interviewee says she always called it “open spine.” She’s sharing with us how it is to have a permanently disability and it’s eye-0pening.
What happened after birth?
I had the most severe form of spina bifida, so was transferred to a hospital in Montreal, Quebec, Canada across the border from my homestate of New York because they had more experience with it than the local hospital where I was born. The doctors said that my parents could choose to have them do nothing and I would be dead within a week or two of spinal meningitis. Or they could treat me, but most likely I would never walk and wouldn’t live past the age of six years.
My mom said to do anything they could to save me. It was tough, frightening, lots of hospital stays, more than 50 surgeries on my feet, legs, and bladder, plus the closure of the spine and the shunt insert/removal. I was in isolation at three years old, had peritonitis, a stomach ulcer.
That was an awful year. I started chewing my fingers and lips because of stress. I’ve had lots of urinary tract infections. I wore braces on my feet for a time and also was in and out of a wheelchair until I was 16 years old. Then we found a doctor who was able to keep me walking–it took three surgeries, but he did it. I had tendon transplants, corrective surgery for clubfoot–all sorts of surgeries.
How did you cope?
Most of my childhood, I used my imagination to cope. I had a whole daydream world in my bedroom at home where I was popular, healthy, having fun, successful, etc. I later told a psychologist about it and he said that was actually a very healthy way to cope with stress. I hadn’t even realized I was doing something healthy. Even with the dream world to help, I was depressed. I didn’t see a psychologist until I was 16 years old when I started talking about wanting to die. My parents listened and immediately sought help.
What about family?
My family was a huge support–six older brothers and one older sister. My mom was my rock, always there for me. My dad always believed I could do anything I set my mind to. He tested me. We butted heads. We were just alike. But I learned to be strong from him. He taught me to stick up for myself and believe in my abilities.
What was the hardest to deal with?
There were lots of things:
Not being able to run and jump and play like my siblings and other kids.
Feeling like I didn’t fit in.
All the hospital stays.
The wheelchair making me stand out.
My wobble walk making me stand out when I wasn’t in the wheelchair.
People thinking I was intellectually challenged because I walked with a wobble.
Lack of independence. My mom sheltered me especially and I didn’t fight her on it. It took me a long time to break out of that. I missed out on a lot of opportunities because I was simply afraid to try. I thought I’d get hurt or make a mistake.
What do you wish it had been like?
I wish that, of course, I hadn’t been born with spina bifida, but everything happens for a reason and I wouldn’t be who I am without it. That said, I wish I would have fought for my independence and been more active as a child.
I wish I hadn’t been so scared of my shadow or to try new things.
I wish I had taken more initiative. I really didn’t learn how to live and do things on my own–things other kids and teens without chronic health issues took for granted. Getting jobs, exploring their world, trying new things, worrying about acne. I was great at changing dressings, watching for infection, and everything medical, but not so much about everyday things.
I wish I could just get up and go. Not have to worry about ulcers, medication schedules, doctor’s appointments, and medical emergencies.
What positives came out of it?
I learned to have empathy for people with problems. Empathy for people in general. I have learned to look underneath to see the vulnerability of others I don’t agree with. To see the whole story, the real person, and why they behave the way they do, not just the surface anger, resentment, and other actions and reactions. You never know what is going on inside a person. Be kind. Of course, I get angry with people who discriminate, are not tolerant or empathetic. It boggles my mind how insensitive people can be. But it also lifts me up when I think of all the wonderful people who have helped me and been kind and accepting over the years.
I met a friend in ninth grade who totally turned my life around. I am convinced he was sent by my guardian angel. I was depressed. I wanted to die. He wasn’t even supposed to go to our school, but he was there, and I clicked with him instantly. He gave me confidence, was interested in medical stuff, he was compassionate and insightful way beyond his fourteen years. I believe he saved my life. After I met him, I made more friends, joined clubs, went on school trips, went to dances. I never thought I would do those things. We’re still friends today, almost 40 years later.
What do you want us to know about chronic health issues?
Chronic health issues are tough to deal with. We aren’t lazy. We deal with this stuff day in and day out. If we were weak and lazy, we’d be dead. We are strong, kind, hardworking and intelligent, and deserve to be treated equally, not as if we are a burden or stupid or useless. We have so much to give and should be given the opportunity to do so.
How can we support those who have a chronic ailment?
Talk with us. Get to know us. Believe in us. We shine when others believe in us.
Make your workplaces accessible. Make your businesses accessible. Be flexible with work hours for doctor’s appointments. Give us a chance. Support health care for all.
Chronic health issues maintenance and treatment are expensive. Many things aren’t covered by insurance. Better coverage would be awesome. And don’t let Congress or insurance companies take away the rights of those with pre-existing conditions. How on earth are we supposed to be productive members of society when we can’t get insurance to pay for medical treatment and other help to make us healthier and more mobile? We can be productive members of society if people would just give us a chance.
How can we break the ice with someone we don’t know?
Simply approach the person, smile and say hi. You can ask questions, no problem. As long as you’re sincere and kind, your curiosity is something I think of as welcome. Awareness, knowledge, information helps break down assumptions and barriers. That’s how my high school friend handled it.
If you have a friend with chronic health issues, mobility issues, or who uses a wheelchair, etc., simply let the person know that you are there for them whenever they need you. Say, you’re out and about with your friend who uses a wheelchair and some sort of barrier comes up. They get stuck in the snow, or they come across a building that doesn’t have an automatic opening feature. Something like that. It is totally appropriate for you to say, “If I can help, just let me know,” and leave it at that. I have friends who do that.
I have trouble stepping up onto curbs. I know my friends are there if I need them, but I also know they will let me do what I can on my own. Perfect!
Other things to consider:
It’s important to have someone to talk with about worries, frustrations, and the like. Be that person who is non-judgmental and willing to simply listen to your friend vent once in awhile.
Maybe your friend doesn’t have a car, or their car is in the shop. Offer to give her a ride to a doctor’s appointment or therapy session.
When you’re out and about with your friend, be mindful of your proximity to her. She may have trouble walking and fall behind. You don’t have to stick like glue to her but stay fairly close, walking side by side or a short distance away.
Be mindful when making party or travel plans with your friend who has health issues. Make sure accommodations, venues, attractions, and the like, are accessible.
Be mindful of health maintenance schedules and medication schedules when spending lots of time with your friend. As much as I hate scheduling everything, I really have to, so it makes life so much better if my friend is patient and understanding.
Ask your friend now and then if she would like you to make your “famous” ribs recipe or casserole and bring it on over so she doesn’t have to cook dinner.
If your friend is having trouble clearing snow, or leaves, and such, simply ask if you can help.
Call or stop by regularly just to chat, or maybe suggest a lunch date, or day out just for fun
How did you begin coaching around chronic health issues?
It was a natural fit. I know about chronic health issues. I live it every day. I’ve lived in that world my entire life. So, it seemed natural to focus on that type of coaching. I’ve always wanted to help people. I didn’t quite know how, though. I thought I might go into theater because theater and music absolutely were key to my therapy growing up and into adulthood. The arts have such healing powers. But, I wasn’t that talented, so I bowed out of that.
I also thought about going into English and being a writer. I am a writer, although I bowed out of English education. I ended up majoring in sociology/human services in college, but that didn’t go anywhere. I didn’t enjoy it. I worked in offices as a secretary next. That was okay for a bit, but my heart wasn’t in it. I had my own typing and design business for a while. That’s when I decided home-based work was for me. It is much more flexible. I can work around my doctor’s appointments and such. So, then I did some writing for various community papers and online. In the 1990s, I considered going for my masters in psychology and getting into play therapy. I had all sorts of ideas. But none came to be. I listened to too many naysayers, including myself, by the way.
I became certified as a personal trainer in 2009 and did that for eight years. Then I found coaching. It was this ah-hah moment. Personal training had gone south. I wasn’t into it anymore. I had had some experiences with discrimination and it really soured my opinion of the industry. Life coaching was perfect. The life coaching community is super supportive. I’ve met amazing people who are passionate about helping others. I found where I belong. Helping people, doing what I love.
Note from Carol: I think we all learned something from Amy’s piece on permanent disability and I thank her for being so open with us. Would love to hear what you have to say after reading.