Voices of Recovery, Episode 16: Receiving Help & Passing It Along

Nikki Rashes is grateful to her mother for the unending support she provided throughout Nikki’s recovery. Nikki now works for the NAMI National office as the Senior Manager of Programs and Digital Training Delivery. She also regularly speaks as a part of NAMI’s In Our Own Voice program, where she shares her journey to recovery after being diagnosed with bipolar disorder at 19. Nikki has told her story too many times to count, and whether she's presenting to a group of nurses or a high school class, Nikki's story resonates with her audience. In this episode, Nikki talks with Dr. Ken Duckworth, NAMI's Chief Medical Officer, about the people who helped her on the road to recovery.

Episode:

Episode Transcript:

[0:00]
[background music]

Dr.
Ken Duckworth: [0:02] Welcome to "You Are Not Alone, Voices of
Recovery." Hi, I’m Dr. Ken Duckworth. I’m a psychiatrist and the chief
medical officer for the National Alliance on Mental Illness or NAMI. I’m the
author of NAMI’s first book, "You Are Not Alone, the NAMI guide to
navigating mental health with advice from experts and wisdom from real people
and families."

[0:22]
I talked to over 100 people for this book. I want to share some of those
conversations to share more about what they had to teach. Nikki Rashes lives
outside of Chicago now. She moved there from Michigan and she’s been part of
NAMI for 12.5 years. She works for NAMI’s national office now as a program
manager for presentation programs.

[0:46]
Nikki also describes her mother, Sally, as her hero. Her mother had a lot to
teach her during her journey. I was so thankful to hear Nikki’s story, and I
was far from the first one to hear it. Nick is a veteran of NAMI’s in our own
voice talks.

[1:01]
These are presentations given by NAMI for free to various organizations like
schools, community groups, hospitals, pretty much anybody that request them. In
these presentations, what happens is, the people get up and tell personal
stories about their mental health journeys, and Nikki has a wonderful story to
tell.

Nikki:
[1:21] I was diagnosed with bipolar disorder when I was 19. Throughout my life,
had symptoms that probably could have been recognized earlier as a young child,
maybe four to five years old.

[1:39]
I remember lying in my mom’s bed, crying and crying. She would ask me what’s
wrong, and it was always, "I don’t know, I just feel sad." That went
on for years. I was the moody teenager. Puberty, all of that, anything we could
blame it on.

[2:00]
Mental illness run rampant in my family. Again, we could see it, but didn’t. My
dad’s brother, who is very open about it, also has bipolar disorder. He,
through various phases in his life, would disappear out of our realm so that we
didn’t know what was going on. He was the fun uncle. We never saw that there
was a lot of mania going on, as kids.

Dr.
Duckworth: [2:30] Was he open about it when you were a teenager? Did you
know that that uncle had a challenge that he was living with, or not so much?

Nikki:
[2:37] No. He was diagnosed but not in treatment and didn’t fully understand or
recognize the need for treatment. He was very artistic, enjoyed his mania. It
was that type of thing. Later on during my college years, it was actually after
I reached recovery that he started to see, "OK, there’s more to life than
this," and he started treatment.

Dr.
Duckworth: [3:09] That’s interesting. Your experience of getting into
treatment motivated him.

Nikki:
[3:15] Yes.

Dr.
Duckworth: [3:16] Did he tell you that?

Nikki:
[3:18] He has, yes. He actually said to me, "I want to be like you,
Nikki." Amazing to hear.

Dr.
Duckworth: [3:27] Amazing to hear. In what way did he mean?

Nikki:
[3:32] He meant the stability, he meant the…I don’t know if you’d call it
success, but the overall happiness that I had found, the peace I had found in
my life, that’s what he was looking for as well.

Dr.
Duckworth: [3:47] Isn’t that great?

Nikki:
[3:50] Yes.

Dr.
Duckworth: [3:51] How old were you when you would say you got into that
state where you can have that conversation with him?

Nikki:
[3:57] I was about 25. I went through a solid five years of I would call it
hell, misery. Then finally found the right meds, found the right doctor, not in
that order, and found my way towards recovery.

[4:20]
I would say after that, finding NAMI. I was probably at about 80 percent, I
found NAMI. That really pushed me further in that I was be able to talk about
it, I was able to share my story as an In Our Own Voice presenter and really
found that 100 percent where I was comfortable in my own skin.

Dr.
Duckworth: [4:44] That’s beautiful. The right
treatment/medication/psychiatrist made a big difference for you, but you didn’t
consider yourself fully in the recovery zone until you took on this additional
challenge which was finding places to talk about it.

Nikki:
[5:02] Yeah.

Dr.
Duckworth: [5:03] Is that accurate? How did you find NAMI?

Nikki:
[5:06] I found NAMI, I was dating someone for a short period of time, a med
student, who you would think would be educated in mental health, you would hope
would be educated. After hearing I had bipolar disorder, I got that phone call
of, "Oh, I don’t think I can deal with this," and he walked away.

[5:31]
I sent him an educational email. [laughs] Then I got online and was just like,
"I’ve made it to the other side. People need to know what this is like.
People need to understand that there’s still life, that this isn’t a horrible
sentenced misery by having a mental illness."

[5:58]
I came across NAMI. I came across In Our Own Voice and said, "I want to
tell my story. I want people to hear how this really works." I found Leon
Judd at NAMI Metro.

Dr.
Duckworth: [6:12] Yes, a classic.

Nikki:
[6:14] Yes, my mentor. He sucked me in. Before I knew it, I was volunteering
full‑time with them and keeping a job full‑time [laughs] at the
same time, which was a lot. [laughs]

Dr.
Duckworth: [6:28] Were kind of work were you doing at the time?

Nikki:
[6:29] I was a legal assistant and office manager. After college, I had a
Bachelor’s in Social Work, I knew I was not ready to go back for my master’s. I
had struggled through the worst of my illness during my bachelor’s degree.

[6:47]
I took on a job not knowing what I could do with myself as a receptionist at
this law firm. 14 years later, I was still there managing the office. That
helped on my journey to recovery, too.

Dr.
Duckworth: [7:05] Stability.

Nikki:
[7:05] The stability, the routine, the having a job and feeling like there was
a purpose.

Dr.
Duckworth: [7:12] Did you share anything about your mental health with the
office? Some people do, some people do not. This is one of the arched questions
of life.

Nikki:
[7:22] Yes. As I went along, once I was more involved with NAMI, I actually
started to share based on the NAMI Walk. I wanted donations. [laughs] They knew
of my involvement, they knew how much NAMI meant to me.

[7:40]
At the same time, it was still an environment where, "Oh, that person’s
crazy. You don’t want to deal with them. Oh, ignore it. They’re just
nuts." It was a very stigmatizing environment. It was not really
recognized that I was one of those people.

[7:59]
I was one of the people who had a mental health condition that they were
talking about, but at the same time, they did on the surface know that I had a
mental health condition.

Dr.
Duckworth: [8:08] That’s interesting. They considered it a we‑they
problem, but you were on this side of the line. It sounds like you thought of
yourself as being on the other side of the line and on this side of the line.
How might you think about it? I don’t want to put words in your mouth.

Nikki:
[8:25] I recognized where I had been so that I was someone who had a mental
health condition. I still had it, of course. I still took medication every day.
I was able to empathize with people who had been there.

[8:45]
At the same time, as long as I was taking care of myself and treating myself,
self‑care, all of that, I was typical, what people would consider as the
average person. It was a little bit of straddling the line there.

Dr.
Duckworth: [9:06] I see that. Let’s talk about how you found In Our Own
Voice. What was your first In Our Own Voice presentation like for you? I bet
you remember it.

Nikki:
[9:18] I do. When I found In Our Own Voice, I went through the training. Leon
sent me pretty early on into the In Our Own Voice training. That was my first
experience being in a room with people who I knew had mental health conditions.

[9:38]
Obviously, there’s people who you have no idea, in your life, being one in
five, but this was people who recognized it, people who understood it, and
people who could talk about it.

Dr.
Duckworth: [9:50] In the training.

Nikki:
[9:51] Yeah. I remember sitting in the hotel room that night at the training
and everybody joking about their experiences in the hospital and where they had
been. It was that dark humor that people outside wouldn’t understand.

[10:05]
It was like, "Wow, I found my family here. People get it." That was a
huge eye‑opener to me. Then I did my first presentation at one of NAMI
Metro’s general meetings. We always started out with the friendly audience from
NAMI.

Dr.
Duckworth: [10:24] This is NAMI Metro Detroit?

Nikki:
[10:27] Yeah. My voice shook through the entire presentation. I have never had
a problem public speaking. I love doing it, but somewhere telling my own story,
it was…It was people I knew. It was people I was comfortable with, but my
voice shook through the entire thing. I remember that.

[10:53]
It was liberating afterwards. It was like, "Wow, I just shared this. I may
have made a difference to somebody." All of that empowering feeling, but
at the moment, it was absolutely terrifying and made me feel so vulnerable to
put it out there.

Dr.
Duckworth: [11:14] The reception in that friendly, family audience?

Nikki:
[11:21] The people who came up to me afterwards, and especially family members,
with, "You gave us hope," or, "We hope our child can become like
this. We hope our child can reach the point you’re at," was just
heartwarming. That’s where the empowering came in, knowing I can make a
difference to somebody.

Dr.
Duckworth: [11:41] That’s a big day. You present your story, you tell the
whole thing because it sounds like at the work environment you had, that wasn’t
an integrated experience. You come to the NAMI Walk and they would say,
"Here’s 20 bucks."

Nikki:
[11:56] Exactly.

Dr.
Duckworth: [11:56] It was more like that, like [inaudible] . We’ll come
back to your family and how your family understood all this, but I then wanted
to ask about your next In Our Own Voice presentation.

Nikki:
[12:10] My next one, I would say it got much easier once I realized my purpose,
which was to make a difference, to give people hope, to let them see that this
is the face of mental illness. This is the average person who is living with a
mental health condition.

[12:39]
Once I felt all of that, it was easygoing because it just felt like, "This
is what I want to do. This is my mission."

Dr.
Duckworth: [12:51] It’s great to have a mission, isn’t it?

Nikki:
[12:55] Yes.

Dr.
Duckworth: [12:58] It sounds like you did a presentation that was not
within the family. You went to another workplace. Do you remember where it was,
how it was? It sounds like you it was easier for you that you had would
integrate this into your sense of purpose and you overcame anxiety through
that.

Nikki:
[13:17] I know there were two presentations early on. I don’t remember which
was the second or third, but one was for nursing students at a local college.

[13:29]
To me, that was huge because again, coming from that med student who drove me
to NAMI to be able to help people going into the medical field understand what
this is like and to field their questions about, "What is the one thing
you wish people who treated you had known?" that was huge to me.

[13:55]
I was going to say the other experience was with AP Psychology students in a
high school, high school seniors, who they had just taken their AP exams. It
was a couple weeks before school got out. They were totally checked out.

[14:15]
I did this presentation and was able to stand there and say, "I was in
your seat. It was the end of my senior year where I knew there was something
wrong."

[14:25]
To feel like I was able to reach those students at that point in their life
before they went off to college, before they had the problems that I may have
had while I was living on my own away from my family. Those were both really
powerful experiences.

Dr.
Duckworth: [14:40] Did they rally for you. Did they get engaged?

Nikki:
[14:44] They did. I learned one of my most important In Our Own Voice lessons,
which was the student who sat almost turning his back to me with that
completely disengaged look, who wanted nothing to do with this.

[15:03]
Real tough‑looking kid who came up to me afterwards and said, "My
girlfriend is struggling. I think she might be depressed. What can I do?"
I realized that the ones who were most resistant to it, who didn’t seem to want
to hear it were the ones you were touching the most.

Dr.
Duckworth: [15:19] That’s beautiful. How are the nursing students with you?
That was your first one, the nursing students [inaudible] .

[15:27]
[crosstalk]

Nikki:
[15:27] Yeah. The nursing students were really receptive. They really wanted to
hear about the experiences we’d had, whether it being treated for psychiatric
or just general experiences. I had had experiences in hospitals where soon as
they hear there’s a mental health condition, they disregard anything physical
you have come to the hospital for.

[15:53]
They were interested in that. They were very interested in how they could
support someone or recognize that there were symptoms and how to help them
despite those symptoms. The biggest thing for them was that it humanized it for
them because so many people are just a name on a medical file. That humanized
what mental health was all about. They were very receptive.

Dr.
Duckworth: [16:27] When people with a mental health condition show up in an
emergency room and say they have regular requirement [inaudible] , the people
who ignore that, did you get through to them, that you can have appendicitis
and bipolar disorder?

Nikki:
[16:38] I think it did. With a lot of them, it really resonated and was like,
"OK, we need to focus on more than that first list of medications they
give us when we realize that there’s bipolar disorder, or depression, or
whatever it may be."

Dr.
Duckworth: [16:55] That’s great. You did these two right out of the gate.
The first one, you had a lot of anxiety even though it’s within the family.
Then it sounds like that was the breakthrough for you and you’re not terrified
driving to the nursing students or the high school. You’re completing a mission
at this point. Do I have it right?

Nikki:
[17:18] Definitely.

Dr.
Duckworth: [17:19] That’s great. How many have you done? How many In Our
Own Voice presentations?

Nikki:
[17:24] Jeez. I don’t know if I could count. [laughs] My affiliate out in
Illinois did not use the In Our Own Voice program, but in Michigan, it was a
very strong program. I was doing it for about seven years so I became a state
trainer. More presentations than I could count.

Dr.
Duckworth: [17:50] 5 a year, 10 a year, 20 a year?

Nikki:
[17:56] I would say probably about 20 a year.

Dr.
Duckworth: [17:59] Wow, times seven years. We’re well over a hundred.

Nikki:
[18:03] Yeah.

Dr.
Duckworth: [18:02] We can safely say you’ve done well over a hundred.

Nikki:
[18:05] Yes.

Dr.
Duckworth: [18:05] Do any of them stand out to you?

Nikki:
[18:08] Mm‑hmm. My favorite presentation was going back to that high
school year after year.

Dr.
Duckworth: [18:16] In the same high school?

Nikki:
[18:16] Yeah. We did it every spring.

Dr.
Duckworth: [18:20] Did your psychology teacher said, "Please come
back"?

Nikki:
[18:20] She loved us. We did it every spring. She formed a walk team with her
students. She was a huge champion for NAMI. That was my favorite presentation,
to be able to do year after year. Part of it was that it touched my heart, that
it was that point where I needed the most help and wasn’t getting it. To be
able to possibly prevent someone from going through those five miserable years
I went through meant a lot to me.

Dr.
Duckworth: [18:56] That’s quite beautiful. In Our Own Voice, you worked
with another individual?

Nikki:
[19:00] Yeah.

Dr.
Duckworth: [19:01] Was it the same partner or did you swap it up?

Nikki:
[19:07] No, we swapped it out. There was one other state trainer. When I was
doing state trainers, it was the two of us all the time. For presentations, we
mixed it up. We tried to go as diverse as we could, whether it was male‑female
or Black‑White, our stories varied a lot.

Dr.
Duckworth: [19:32] Let’s talk about your family. You struggle through these
five years. You get to this place where you find the right doctor and then it
sounds like you found the right medicine. Do you mind saying what the doctor
did that was helpful to you?

Nikki:
[19:50] The doctor listened to me. Making me a partner in my recovery was the
most powerful thing. I had the one who blamed my mother when I was little. She
was too coddling. I had the one who gave me medications until I was so
overmedicated I was a zombie.

[20:19]
I had gone from doctor to doctor. I finally found this doctor who she listened
to me. When I said, "The side effects are too bad. I can’t take
this," she helped me find other medications. She helped me find a
therapist who let me know who I was again as opposed to feeling like I was the
illness.

[20:48]
I think just that listening, that letting me know that I knew myself better
than she did. She knew the medicine, she knew the illness, but I knew how I
felt. [laughs] An experience that I will never forget was actually my doctor’s
partner. I had been crying all day and absolutely a wreck.

[21:19]
My mom was worried about me. She was over at my apartment. She called the
doctor. My doctor was off. It was a weekend. One of her partner’s called back
from the emergency line. Her partner was a very young, very small woman. You
would never expect her to be tough. She told my mom, "You’ve got to get
Nikki on the phone."

[21:46]
Then I finally picked up the phone. She reamed me. She started into me with,
"You understand every time you stop taking your medication, it’s going to
get worse. Every time it gets worse, it takes away from the trajectory of your
life." She really let me have it.

[22:10]
That was the first time that I was like, "Whoa, I need to stay on these
medications." I never stopped taking my medication after that day.

Dr.
Duckworth: [22:19] Whoa. Tough love was positive for you.

Nikki:
[22:22] [laughs] Yes. It was one of those things because I expected to be
coddled, I had been coddled all along. I expected the, "Come on, Nikki,
you got to take your medication," but she just let me have it. Hearing
that I had control of the trajectory of my life and that every time I stopped, I
could make it worse was what sank in and I never stopped again.

Dr.
Duckworth: [22:52] It’s a great story. What medicine at the end of the day
was helpful to you, or is it not that simple?

Nikki:
[23:02] It’s a lot of medication. I still take Lamictal, Abilify, BuSpar, and I
take Xanax at night. It’s still a lot of medication, but it’s the cocktail that
works. I would not mess with it. [laughs]

Dr.
Duckworth: [23:33] Yes, I hear that. Did you take lithium? What was your
experience with that?

Nikki:
[23:34] I took lithium for quite a while. I was on a combination of lithium and
Depakote, which was wrong. [laughs] My experience with lithium, between the
lithium and Depakote, I gained 100 pounds in a year. I was basically flatlined.
I was falling asleep in class. I got in a car accident falling asleep at the
wheel. It was way too much for me.

[24:13]
Couldn’t laugh, couldn’t enjoy anything. I wasn’t crying, but I wasn’t feeling
life.

Dr.
Duckworth: [24:21] With flattening out the mood swings, and it flattened out
everything.

Nikki:
[24:28] Absolutely. Personality, everything was gone.

Dr.
Duckworth: [24:33] You mentioned you have a family. Let’s talk a little bit
about that and your travels with this illness and the family [inaudible] .

Nikki:
[24:41] My mom is my hero to this day. She was there for me every step of the
way. She is the one who, if I could say, forced me into treatment. I finally
went to my first psychiatrist because my mom was begging me to and I decided to
humor her. I truly didn’t believe anything was wrong at that point. I didn’t
understand that there was something wrong.

Dr.
Duckworth: [25:19] How old were you?

Nikki:
[25:20] What?

Dr.
Duckworth: [25:20] How old were you when you first sought help?

Nikki:
[25:23] I was 19 when I first sought treatment.

Dr.
Duckworth: [25:25] As you look back on it, do you think you have lack of
awareness, do you think you were stubborn, do you think you were ashamed, do
you think it was a combination of all three? How do you make sense of it that
you look back on it?

Nikki:
[25:37] I think it was very much a lack of awareness. When I look back, I had a
terrible fear of driving by the time I was 17, 18 years old because I would get
these thoughts in my head, like, "Oh, maybe you should just turn the wheel
and go off the road. What if you just hit that tree?"

[25:58]
It never, ever occurred to me that this was not a typical thought, this was not
something that other people were thinking while they were driving. All this
wackiness, the mania, the depression, I was able to rationalize in my head.
When I was crying and crying, it was like, "Oh, my friend said this, and
that’s why I’m so upset."

[26:27]
It was never really the cause. It was never really anything that was that
extreme that I should have been feeling that way. I think it was a complete
lack of awareness.

Dr.
Duckworth: [26:41] How did you develop awareness? Not everybody does. I
love talking to people who did develop it because this is one of the great
unresolved questions [inaudible] .

Nikki:
[26:56] It was a combination of things. When I was first diagnosed, my mom
finally talked to me about my family history, it made sense. First having that
word put to it of bipolar disorder helped me to see that, "Oh, OK, there’s
something legit going on. This isn’t just me being strange and me losing my
mind. There’s something seriously happening." That helped a little bit.

Dr.
Duckworth: [27:31] The family history? The family history helped?

Nikki:
[27:36] Yeah. Knowing my grandma suffered from extreme depression, my uncle
with bipolar disorder, it all started to make sense. Knowing that family
history. Then I still didn’t recognize that this was a lifetime thing. That I
don’t know if it was a lack of awareness or stubbornness, but the whole,
"Take my medicine until I felt better and then stop the medication."

[28:09]
I think a lot of that was I recognized there was something wrong at that point,
but I didn’t want to deal with it.

Dr.
Duckworth: [28:19] In your early to mid‑20s still?

Nikki:
[28:21] Yeah. That went up to about 24, is when I started taking my medication
consistently.

Dr.
Duckworth: [28:28] Your mother outlining the family history with risk was
very helpful for you?

Nikki:
[28:34] Yes.

Dr.
Duckworth: [28:37] Not everybody does that for their kids.

Nikki:
[28:40] No. She was so supportive. When I had panic attacks, she took me by the
hand and helped me pull through things. She raced up to, I was at Eastern
Michigan University and she was living in White Lake at the time. She would
middle of the night go flying up to Ypsilanti to save me from myself.

[29:11]
Bring me home, do what needed to be done, then continue to pay for an apartment
for me up at Ypsi, because they knew how much that independence meant for my
psyche, even though I was spending probably four or five days a week at home. I
needed to know I had that space that was mine and I was still a grown‑up.
She was a champion throughout.

Dr.
Duckworth: [29:38] You have your own family now. Is that what I heard you
say earlier?

Nikki:
[29:43] I do.

Dr.
Duckworth: [29:43] Tell me a little bit about that, if you would.

Nikki:
[29:47] I really had sworn off dating, wanted nothing to do with it because I
felt like I was a wreck. How could I bring someone else into this? I finally
started to date. It was after I found NAMI, really when I got the confidence
and was able to speak about it openly.

[30:08]
I met someone online. I spoke to him on the phone a couple times and I was
like, "All right, I’m just laying it out there because I’m not going
through this whole like, "Dump her because of mental illness,"
again."

[30:22]
We hadn’t even met yet. I told him about my bipolar disorder. He said, "I
have a couple questions for you." He said, "Do you receive
treatment?" I said, yes. "Do you take medication?" Yes.
"Would you ever stop taking your medication?" No. "OK, then
we’re good." That was that.

[30:44]
It’s taken some learning on his side to understand the moods and the
breakthroughs that I still get, but he is 100 percent supportive. Does the best
he can throughout. I have three stepchildren. I had decided earlier on that I did
not want to have children of my own because of a fear of passing on the
illness.

[31:14]
The idea that it would be so hard to watch someone else struggle through it. I
didn’t think I could handle watching someone else and knowing I had given it to
them. I didn’t want kids of my own, but he had three children. The youngest was
16, so they weren’t really kids. They were teens.

[31:34]
About a year after we got married, my oldest stepson went through bouts of
depression. Wound up hospitalized for a bit of time. It was like, "OK, I
didn’t think I wanted this," [laughs] but at the same time I found I spoke
the language.

[31:59]
My husband would hear something, be offended by it, get angry about it, and I’d
be like, "Whoa, no. What he’s saying is this. He speaking depression. Give
it a minute." I could communicate with them in a way their father
couldn’t.

[32:13]
A little bit after that, my youngest stepdaughter was diagnosed with anxiety,
and she has some pretty significant anxiety. She would have a panic attack and
be curled up on the floor in the kitchen and I just lie down next to her, and
be able to talk her through it. It was again, I spoke their language and I
really feel like I was put in this family for a reason.

[32:42]
I feel like I’ve been able to support them in a way that their father probably
couldn’t on his own, but was ab…