Editor’s note: This is one in a series of profiles in the Humans of Wausau series, which is funded in part through a grant from the B. A. & Esther Greenheck Foundation. Follow the Humans of Wausau Facebook page here.
By Kelli Oligney for Wausau Pilot and Review
Amyey Kinney, 31, of Wausau
Q: How can you best explain Alopecia?
A: It depends on who’s asking. I was at PJ’s down in Point with my mom last night and we were just watching some live music and there was a little girl next to me and she had a little fedora on – she was maybe nine or ten. We were in mid-conversation and I heard this little girl say “Howdy! Howdy!” She was trying to get my attention on purpose and asked “Did you cut your hair like that on purpose?” So, I told her what the name of it was and that it is Alopecia which is a hair loss disease, but I am really healthy otherwise, but my hair just falls out. She said “Oh, that’s really sad!” I said “No, it’s okay. I’m really healthy. It is just on the outside.” She said “Oh! Okay!” She then continued on with her family. That was to a 9-year-old, but if it’s to an adult who is fairly competent as you would hope an adult would be, it’s an autoimmune disease and usually comes in threes. Alopecia is one, the second is a skin discoloration called Virgilio, and the third is a thyroid malfunction. I have the thyroid thing and Alopecia, but the immune system attacks the hair follicles and then the hair falls out. There’s nothing else involved with it. Just this annoying thing.
When were you first diagnosed with it?
In ninth grade so however old you are then.
Was it a slow progression or did it happen all at once?
It was really slow. Well, in ninth grade, I think it was pretty slow. I had really long hair down past the middle of my back. My nervous habit was to reach my arm behind my back and just twirl my hair in my fingers. You know, like how people sometimes play with their nails or whatever, that was mine. So, in ninth grade, I had a little spot on my eyebrow — just like if someone had a scar on their eyebrow — it was hardly noticeable, but then I had this spot like two inches in diameter right on the top of my head.
You still had all your long hair besides that?
Yeah, still had all my long hair besides that. So, that’s when I was first diagnosed. I was freaking out about it, of course, in ninth grade and I was self-conscious about everything ninth graders already are. My mom was really great. I remember her on the phone and kind of mean sometimes trying to get me into appointments to a dermatologist because it was really hard in Wausau to get one that long ago.
Just to find someone that would meet with you?
Right, like as soon as possible. Between the time you call a specialist and go see them so much has happened and then a lot of that is irreversible. In the Alopecia condition sometimes it is. Yeah, that was ninth grade. It was awful.
How did classmates and other people respond?
My really close friends were fine. They were really supportive and sympathetic, but kids are mean. I got this really great nickname. They called me Bald Spot.
Aw, that’s so terrible.
It was so terrible.
That’s terrible even as an adult and especially for a ninth grader going through the changes of everything else in general.
Yeah, I hated it. All the bad emotions rolled into one. I was mad, confused, sad, you know. All of it. So, there were a few times that I remember that I cried myself to sleep and would wake up in the middle of the night from bad dreams with all of my hair gone. At that point, I would call my dad. My dad actually has Alopecia too.
Oh, really? Is it genetically related?
Totally.
Does he lose all of his hair or does he have some patches where he can grow some?
For him it’s just spots on his head. For everybody, it’s different. It’s really common, but most people who have it, I think, they just lose a tiny spot on the back of their head and they don’t even notice that it’s gone before hair starts growing back. There are other cases all the way up the spectrum to me – where you lose all of your hair from head to toe. It’s all different.
Would you say then that ninth grade was the hardest age?
I would absolutely say that. At that point it’s not something that you’re brought up with and not something you’ve had time to accept and learn about. Such as learning how to answer questions from strangers. Also, in ninth grade, you’re not old enough to have come into your own and you don’t know exactly who you are at that point either. So, you’re just right in that middle phase of “where am I going to go?”
What advice would you give to those who have it or to those who don’t understand it?
I had to think about this one a little bit because I think there can be a lot to talk about on this topic and it can be really simple. It just depends on who you talk to. For the people who have it, learn all you can about it because for me, the less I knew about it, the more I felt like I was drowning and grasping for straws and trying to find treatments and how to cope with it mentally. So, learn all you can about it and pay attention to your body otherwise because since Alopecia is an autoimmune disease, other things could be going on and really focus on the fundamental aspects of health in your body and try really hard to recognize that it is just hair and if it doesn’t work, then it doesn’t work out. Everybody has different priorities. Some people can’t let go of hair and they wear wigs and that’s fine. I don’t.
And you rock it still!
I rock it still!
What kind, if any treatments are available?
There are a lot of treatments available. No cures, but a crap ton of treatments. When I lost that first spot in ninth grade, we went right to an injection of Prednisone into my scalp and that worked and that spot grew back. Then when I lost all my hair head to toe when I was 20, it was kind of this onslaught of this prescription cocktail of a topical thing, oral steroids, and once the hair grows back do injections in the spots that are still kind of behind. There’s a lot you can look into and then nutritionally too. Autoimmune diseases tie into so much in your body that I eventually found out I was iron deficient and that plays a role in your hair, skin, and nail health. Taking prenatal vitamins helps in hair, skin, and nail health so there’s a lot of things you can do it just depends on what your goals are. Or you can do nothing at all and that’s fine.
How would you say that Alopecia has changed you for the better?
This took awhile. It kind of forced me to get my priorities in line, you know? I was holding onto hair as part of my identity for a long time and deciding that I wanted to let it go, you know mentally and physically, was a really hard thing to come to. It took me 11 years to figure out that I decided I wanted to shave my head. It definitely realigned my priorities. Without having to focus on hair or how it looks or what style it is – that really opens up the doors and lets me focus on other things mentally, spiritually, and soulfully I can really turn inward instead of focusing on what I see in the mirror, honestly.
What is one of the hardest things that you have dealt with or experienced?
I didn’t have an answer for that. As much as I tried to think about it. I think one of the hardest I have experienced or had to deal with has nothing to do with Alopecia.
That’s fine, you can give an answer for something else too.
Okay, it was two things. When I was in high school, my dad was diagnosed with cancer. When we first learned about it, it was by his lymph nodes at first and thought maybe it was lymphoma which can take you in weeks if it wants to. Of course, my dad being the EMT and firefighter that he is said “Yep, here are all the things down on paper that could be wrong with me!” I was in high school and he called me in the middle of the day and I went to the office to call him back and I’m an emotional person anyways so I was bawling in the office in high school. He said “Well, I have to go. Go back to class.” I was like “What!? No!” So, that was one time, but Dad pulled through and is cured and he is good. It was not lymphoma, but rather another form of cancer.
Did he have to get chemo or anything?
He did. Then he had a heart attack this last January. He had open heart surgery and they cracked open his sternum and now he has a cow valve in his heart and he’s better than he was before.
What have you learned about yourself through your experiences and what is a lesson you have learned? This again can be related to Alopecia or it can be related to something else entirely.
I figured out what I’m naturally attracted to and how to keep that around me as far as other people go. I think people try to figure out if they’re an introvert or an extrovert and then they just kind of learn about themselves by going down those two paths. I’m kind of both.
I would agree for myself too.
Right? If you need to you can put it out there all day, but it’s exhausting. When you’re done, you’re just spent, right?
Yeah. It took awhile for me to figure that dynamic out.
You kind of have to figure yourself out instead of following a book definition of a certain topic.
Yes! Exactly. That’s really hard to do or for me it was. So, when I figured out what I’m attracted to, I need to surround myself with people who are my yin yangs – who know different things than I do and just as open to learning as I am.
Also, people who understand that you need time with people, but also need a little space of your own.
How do you define beauty?
This was a fun one to sit and dwell on a little bit. This one is really hard to put into words for me. When I have eye contact with people, that’s when I see it. It’s not just when I hear their voice and sometimes it is actually, which is strange because it doesn’t happen all the time and you can just tell in their tone they’re kind. I think it’s someone who is gentle, secure, genuine, open to learning, perceptive, and genuinely happy. That’s really beautiful and that’s hard to get to by yourself, but once you do, people are naturally attracted to that.
Would you say your definition of beauty has changed since you were diagnosed with Alopecia?
Oh yeah, it turned inward. When I was putting the fundraiser together, I was reading all these different stories on this website for National Alopecia Areata Foundation that all the proceeds went to so I was in and out of that website all the time. I was reading these different accounts from adults and kids with Alopecia and as I was reading it I was formulating, not a new perspective, but this realization of the perspective that I’ve always had. You know when you see a National Geographic and it focuses on this super unique animal that is a freak of nature, but it’s fascinating and it’s really beautiful. Well, that’s always been my thoughts on it. So, like an albino peacock, it doesn’t happen all the time, but when you see one you’re enamored with it so that’s kind of how I think of myself and people with Alopecia or people with Vitiligo or spots all over. It’s fascinating and it’s really beautiful. I totally see that now and I always have, but I never really let myself dwell on why I was attracted to that. You know? So, now my definition of beauty is a little bit more fine-tuned. Everybody has their thing, right? Some of it is inward, some of it is outward. My thing happens to be outward. You know, I think that when you talk to like a perfect stranger and look them in the eye and ask them a genuine question, they’re going to be happy to tell you about themselves. I think that’s really beautiful to is to get random opening from someone.
What is something you wish people would better understand about Alopecia?
It’s so common. It’s so common and it’s a minor health issue. Science doesn’t know much about it. I guess they have it low on the priority list, which is cool – I’d rather cure cancer first than Alopecia. It’s really unpredictable and now that I’m not taking any medicine at all, hair could grow back and maybe it will all fall out again in two months like when I was 20.
What’s your favorite local spot?
When there’s no one around, I like the Whitewater Park and the top of the ski hill in all seasons. Just for the landscape viewing. Just to go back to the introvert/extrovert thing, I like being up at the top of the ski hill or Rib Mountain State Park when there’s no one around and you can just sit there and actually focus on your breathing or meditation.
How are you so happy all the time?
I read that and I laughed and was like “Oh, man!”
Even if you’re not, you appear to be!
Yeah! That point exactly. There are times that I feel more depressed than I thought that I could or would, but maybe that’s another case of self-awareness also. I think I’m able to re-center myself to the moment to get out of whatever kind of depression or sad or low emotions that I have and can get myself out of that pretty easily. I like to feed off other peoples energies too. There are times that I’m driving in the car to an event – whether it be for work or just with friends and I can be crabby as hell, but as soon as I get there, the switch completely flips and I don’t know why it does that, but it does. I don’t like sitting still for too long so I constantly give myself something to look forward to. I have skydiving coming up soon and traveling.
You are pretty much a professional skydiver at this point.
This will be my fourth time jumping in three weeks, but they have a class there and I think it’s just six hours and I don’t know how much it is, but you can go and take this class and then you go up with an instructor and you get to jump solo and pull your own chute.
Oh my god.
I know. I want to do it
I’d poop a little.
My poor cousin went and she vomited in her hands because she couldn’t go behind her because the guy was right there. It must not have been a lot. I felt so bad for her.
What motivates you each day?
I have my nieces and nephews in town and have a pretty tight relationship with all of them. The oldest will be 21 on Saturday, which is insane. I remember when his mom, my sister, and other sister went with me on my 21st birthday and he was 10. So, now I’m going out for his 21st birthday and it’s nuts. He and the rest of my nieces and nephews motivate me and the relationship that I have with them is really honest and open. If we hang out and they ask me what’s up, I will tell them, because why not? They motivate me and I think they’re always in the back of my head and when I come to a crossroads to figure out which path I want to go down, I think of the kids and which one would make them most proud and then I do that. And my cats, of course. I think people just roll their eyes and laugh; crazy cat lady, but I don’t care. They motivate me.
What is your favorite quote and why?
It is the one that’s tattooed on me, it is “No one is you; that is your power.” My parents divorced when I was 1, but I was lucky enough to spend equal time with both of them and they were both in town. My mom is more my friend and my dad is more my dad – my parent. I was always a Daddy’s Girl so I would always go to him for advice and a sounding board sometimes too, but in the socially awkward times of junior high and high school, I would go to him with those scenarios say “What do I do?” He would always tell me “Just be Aymey. Just be Aymey. You’ll be fine.” He seriously made it that simple and every time he said it I was like “….Oh. Okay, I can do that. That makes sense.” For me it’s that reassurance that no one is you that is your power and as long as you’re not naturally an asshole, you’ll be fine. Just be yourself and you’ll be fine. Trust yourself too. This is also a quote from Dave Grohl, who is my favorite musician. It kills two birds with one stone.
