Stories from the TB Voices Project

The TB Voices Project Snohomish and King County, Washington

A project of TBPhotovoice.org and generously funded by the Firland Foundation

http://www.tbphotovoice.org

Hear and view TB Voices Project stories and join in the conversation at TBVoicesProject.com.

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In mid-2013, to honor and better understand the TB survivor

experience in Washington State, TB Photovoice interviewed and documented the stories of 28 people

impacted by TB in two counties as part of the TB Voices Project, funded by the Firland Foundation.

Participants ranging in age from 19-94 shared their perspectives on: the TB treatment experience;

stigma; social support; immigrant experiences; side effects of medication; sanatorium experience;

and the need for TB awareness. The project continues to provide TB education and advocacy support

for people impacted by TB and the community.

Goal of the TB Voices Project

The goal of the TB Voices Project is to uncover and discover past- present tuberculosis experiences

from residents in Washington State, so as to:

1. Better understand current TB realities 2. Help support persons impacted by TB 3. Provide TB education and awareness to the community

Our Process

The TB Voices Project documented individuals' TB experience using photos, video/voice recordings,

and/or their written story. Participants voluntarily and graciously opened their homes and lives to the

TB Voices Project. All participants consented to share their stories so as to inform and inspire our

community.

Speaking Out About TB

Persons impacted by TB rarely have the opportunity to share their TB experiences to help in TB

elimination efforts. Speaking out often brings shame, misunderstanding, and stigma. We want this to

change. TB Voices participants offer insightful, inspiring reflections of their own TB experiences.

They spoke out so that our community can become more aware of the realities of TB, and together,

end TB.

http://www.tbphotovoice.org/

http://www.tbvoicesproject.com/

http://www.firland.org/


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Community Perceptions of TB

Older generations may view TB with only negative thoughts such as fear, isolation, and death. A

person under 40 years of age in the U.S. likely has limited knowledge about TB and its global impact

on individuals and communities. TB is still being managed in the Northwest, despite the common

belief that it has been eradicated in the U.S.

TB Voices Project participants share how we can now prevent, treat, and cure TB; provide positive

support to those with TB; and fight against the TB stigma that lingers in most cultures. Today, we can

make the realities of TB different from the past.

Main TB Voices Themes

Three main themes emerged through these interviews. They include the:

1. Importance of social support

2. Need for greater TB education in the community

3. Existence of the TB stigma

Based on these themes, the TB Voices team developed an awareness campaign which included: a

traveling exhibition; presentations for community and TB health workers; interactive website; media

coverage; production of a 13-minute video and digital video/audio clips.

Discover More

Listen to TB Voices Project stories and join in the conversation at our website TBVoicesProject.com.

Contact TB Photovoice Director Teresa Rugg, [email protected] or 360.862.9034. TB

Photovoice is based in Snohomish, Washington.

http://www.tbvoicesproject.com/

mailto:[email protected]


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Stories Name TB Experience Page Number

Lynda TB Survivor 5

Alice TB Survivor 6

Fatxi Supporter of person with TB 7

Jeannette TB Survivor 8

Chris Supporter of mother with latent TB 9

Christine TB Survivor 10

Gary Father survived TB 11

Loc Latent TB 12

Vanessa Latent TB 13

Ellen TB Survivor 14

Beverly TB Survivor 15

Lynnette Latent TB / Supporter of persons

with TB / Brother died from TB

16

Doris TB Survivor 17

Mrs. Smile Supporter of husband with latent TB 18

Mary Father died from TB 19

Joan Grandmother died from TB 20

African Immigrant TB Survivor 21

Karen Misdiagnosed with TB 22

Marcia TB Survivor 23

International Student Multi-drug Resistant TB Survivor 24

Marjorie TB Survivor 25

Chuck and Joanna TB Survivor 26

Palmer TB Survivor / Father died from TB 27

Mickey Mother survived TB 28

Shirley TB Survivor 29

Jeanne TB Survivor 30

Jan Mother and father survived TB 31

Rose Supporter of husband with TB 32


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Lynda In 1993, Lynda and her boyfriend were diagnosed with TB. She began taking medication, but the negative side effects made her feel so sick that she stopped and began hiding from the Snohomish Health District employees who were managing her care. Once found, she was homeless and extremely ill with even more health issues that needed attention. Lynda was put in quarantine for one month while the Health District monitored her health. The Snohomish Health District also watched her take every dose of her TB medicine for nine months, until she fully recovered. She credits the Snohomish Health District employees for saving her life. Shortly after Lynda was cured, her boyfriend died from TB.

Story Highlights Treatment side effects Homeless

Health district support Eviction TB

Prevention Advice to community

Gratitude Hiding Nurses saved my

life Too sick to care Low immune

system Housing support from sister

Didn't understand the severity Survivor

9 month TB treatment Boy friend

died from TB Prayer Importance of

U.S. TB control Community TB

education

Lynda

In Lynda's Words

Make sure you are staying healthy even if

you’re homeless, eating right, being clean,

paying attention to your environment.

Make sure you follow through with the public

health recommendations. I probably would

have been off the whole program a little bit

faster if I would have paid attention. Actually,

back then I don’t think I really realized how

severe the situation was.

I was even trying to hide from the Snohomish

Health District when I had TB and they found

me. I tried the treatment for a while and I just

kept getting sicker and sicker. They saved my

life. The Snohomish Health District wasn’t

going to get their hands off of me, which is

good. I wouldn’t be here if it wasn’t for them.

Every time I go in there, I just say "thank God."

I’m just so grateful for the Snohomish Health

District.

Lynda, Snohomish County


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Alice

Alice claims she could have fun in a closet. When she was 19 years old in 1948, her humor was tested when she was diagnosed with TB of the spine and sent to live at Firland TB Sanatorium for two years. Although Alice spent nearly seven months in a double-layered cast from collarbone to upper knee, and 2 months in a Stryker frame while she recovered from her spine fusion, her attitude stayed positive. Humor helped the hours and days pass while at the sanatorium. She credits her positive attitude, the medical staff, and friends at Firland with saving her life. Alice met and married Clarence, also a patient at Firland, at the Firland Chapel. She lives by the phrase, "this too shall pass."

Story Highlights Support from staff and friends Devastating

diagnosis Family/community reaction to

TB diagnosis Fear Coping Humor

Spine collapse Stryker frame Possible

death Gratitude Resentment of TB testing

today Daily routine at Sanatorium

Healthy after spinal fusion Lucky to have

successful treatment Husband had TB

twice

Alice

In Alice's Words

I got streptomycin twice a day in the buttocks

for 30 days and I’m convinced that it saved

my life. If had been 50 years old, I probably

would have died, but I was 19 and had youth

on my side and had a whole stack of very fine

doctors. The surgeon who fused my spine in

1948 was Dr. Darrel Levitt. I worship at the

man’s feet. I literally do.

My mother’s and father’s friends felt that they

would bury me when I went away to the

Firland TB Sanatorium. They cried not

because they were so terribly fond of me, but

they cried for the emotions my parents were

feeling that maybe she’ll never come home.

They thought, 'maybe she’ll be an invalid.

Maybe she’ll die.'

Alice, King County


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Fatxi In 2004, despite risk of infection, Fatxi, a young mother living in Kenya, took care of a family member who had TB. Everyone else in the family had abandoned her due to fear and the stigma of TB. Because of Fatxi's determination to support and care for this woman and despite being abandoned by the majority of her family, the woman was cured and regained her strength after a nine-month TB treatment. Fatxi believes education about TB and compassion are the keys to getting rid of the TB stigma.

Story Highlights Access to treatment TB stigma TB impact

on families and community Support

Need for increased TB education Lack of

TB knowledge and understanding

Discrimination Poverty Pride in providing

support Understanding Speak out about

TB

"TB is an issue we need to fix as a

community, and the only way we can

do that is through education."

Fatxi

Fatxi

In Fatxi's Words If somebody is sick with TB and they know

that other people despise or dislike them just

because they are sick, they will be stressed.

They will be depressed and the situation they

have is going to be worse and worse.

One thing I really don’t understand is why

people don't support others who are sick?

We are all human beings, we are family, we

are friends, we are community, we are

neighbors. We need to support one another.

Fatxi, King County


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Jeannette Jeannette was six years old when she was sent

to Laurel Beach TB Sanatorium in West Seattle

in l943. For two and one-half years she was the

only child at the sanatorium. A girl her age was

admitted in 1945 and became her

roommate and childhood friend. Their schooling

was conducted by a TB patient who was a public

school teacher. Gas was rationed making visits

from her family very special. Jeannette was

released in l947, starting back to school in step

with her schoolmates. In telling her TB story,

Jeannette found relief from the stigma she had

been harboring which is common to the TB

experience.

Story Highlights Personal stigma Support isolation

Sanatorium Reflection on experience

Friendship with patients Impact on

families Don't fear TB Courage to

those with TB Dislikes surprises Family

support Caring staff Discovery of long

held emotions

"After being able to go home from the TB

sanatorium, my mother and I travelled to

Seattle every 3 months to my doctor's office.

He was such a wonderful man, I just loved him;

he was like a grandfather. The part that I

dreaded was would they find that I had TB

again, and that I would have to go back to the

sanatorium. Being separated from my family

and then getting to be with them, I was afraid I

would lose them again."

Jeannette

Jeannette holding a seashell broach she made as a little girl while being treated for TB at the Laurel Beach Sanatorium in West Seattle

In Jeannette's Words Having TB carried the stigma with it, and I didn’t

realize how heavy it was weighing on me until I

decided to come to TB Voices Project and tell

my story. I started delving into that kind of

secret time of my life. The only person I had

spoken about it to was my husband, and when I

asked him if I should do the project he said of

course you should. He was excited for me, and

inside I’m thinking should I really come out? Is

it safe? At 76 years of age now, I was still

harboring that stigma. This project has been a

big relief to me because it has taken that stigma

somewhat away and I can easily tell people

about it.

Jeannette, Snohomish County


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Chris

In 1990, Chris's mother was a single, independent mom with two teenage daughters. She had realized her dream career of traveling around the U.S. as a medical claims adjuster when she was exposed to TB through a faulty ventilation system at a convention center in Pennsylvania. She took TB medication for 6 months for latent TB, keeping the TB from turning into an active disease. Chris reflects on how our country has yet to eliminate TB; instead, our healthcare system “manages” it and most Americans have little knowledge of the disease. Chris shares how the stigma of TB followed her mother years later when health care workers, reviewing her health history, demonstrated by their comments and body language that they were in need of greater sensitivity and understanding about TB.

Story Highlights Public health Stigma Managing TB

Latent TB TB knowledge/understanding

lacking in community Shame Fear

Reaction by medical providers to mother's

TB history

"I could see how it was challenging for my

mom when she was applying for jobs,

applying for new insurance or something

else that requested medical records.

There was a lingering stigma associated

with TB, yet it was something that could

have happened to any of us."

Chris

Chris

In Chris's Words

When my mother discovered that she had

latent TB, there was a sense of surrealness

because how in this day and time, 1990,

could she have gotten TB and there was this

shock of it. She wasn’t really familiar with it

because, why be familiar with it? It has been

managed, and I think that is often a

misplaced attitude --that TB is managed so

you can’t be affected by it, and we learned

that you can.

Chris, Snohomish County


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Christine

Being a toddler means falling down and getting back up again. When 67-year old Christine was 18 months old, she fell and bruised her hip bone. At the time, TB was present in Christine's body because she had consumed unpasteurized and un-tested cow's milk. After falling, TB began to infect her hip bone. She spent 10 years in an English hospital—on her back, immobilized, for 5 of those years. She has endured nearly 30 surgeries. Christine has proven to anyone who doubted her that she is just like everyone else. She learned to walk, ride a bike, swim, and dance. Christine continues to lead a full, active life in the Northwest with sheer determination. She is always mindful of her father's support and love.

Story Highlights Treatment Support from father

Hospital treatmentLost childhood

Inner strength Importance of

exerciseOvercoming physical

obstacles Teasing

"If you have TB, just don’t give up. You

can be down, but you just don’t give up

because you have to believe that you are

going to get better. You are going to get

better.

You have to believe that."

Christine

Christine

In Christine's Words

The most encouragement I got was from my

father. He gave me the character I have now. I

never give in no matter what. I don’t give in. My

father used to always say to me, 'you are

normal, you are not disabled at all, and you’re

not interested in the possibilities of defeat

because they don’t exist.' I will never forget that

because they told me that I wouldn’t be able to

ride a bike, drive a car, swim, dance, and I set

out to do all of that, and I did it all.

Christine, King County


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Gary

Shortly after Gary's parents married in New York in 1948, his father was diagnosed with pulmonary TB – for the second time. Fearing that others would find out about this stigmatized disease, Gary's father traveled to Denver, Colorado for an 18-month hospitalization. As a new bride who moved with him, Gary's mother experienced the fear of losing her husband in an era prior to antibiotics; the many hours of physical separation from her husband; and social isolation from her supportive network of family and friends back in New York.

Story Highlights Isolation Separation Family impact

Stigma Overcoming fear and stigma TB

is curable TB and public health systems

"The second time my father had active

TB, he didn't want anyone to know. At

that time tuberculosis was highly

stigmatizing and in some parts of the

world and some cultures it still is."

Gary

In Gary's Words

The picture above is a happy picture of my parents

and my wife and I. We were all gathered together

celebrating a visit to my parents and taking them out

to dinner. It is wonderful. My father is now 91 and

my mother 87, and it is just a delight to be able to

see them whole like that.

TB is absolutely curable. If you or a family member

has a concern about tuberculosis or if you have a

cough that just won’t go away—especially if you

sometimes cough up blood— get seen, get care,

because the care is available, it is effective and that

can mean an entire life not just spared but made

whole.

People who have TB that are undergoing treatment

need to be reminded they are going to be cured,

and be supported through it, and the most important

thing is not to fear it.

Gary, King County


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Loc

Loc was busy attending school and working two jobs to provide for his toddler and pregnant wife, when he was diagnosed with pulmonary TB through a screening process at his new worksite. Knowing he had 6 months of treatment ahead of him, he initially felt fearful of having a disease he knew very little about. Loc quickly found support and information from the local health district. He took control of his fears and made his TB treatment his top priority, educating his extended family, and helping to dispel any TB stigma. As a preventative, his 18-month old daughter was also treated for TB.

Story Highlights Reoccurrence of TB Educating himself

and family about TB Fear of job loss

Support of health district Impact on family

Concern about toddler taking TB

medicine Treatment discipline Fear of

spreading TB Challenging diagnosis

"You can cure TB. Don’t be afraid. TB is not

like the end of your life. It is very, very easy

nowadays if you keep discipline with the

medication. Then you will have a healthy

life; you will be very strong. Don’t waste

your time."

Loc

TB free, Loc holds his healthy,

two-year old daughter

In Loc's Words

When I found out I had TB, I searched on the health district website and then I asked their nurse, if I keep discipline with my treatment, will my TB be gone very, very fast, and not harm everybody? She said yes. So I was very disciplined with my treatment. At the time I heard I had TB, oh, I am very scared because my wife was pregnant and I have a daughter as well. I didn’t want to spread my TB to my family and other people at my work and my school. What challenged me is that I was afraid that people would be scared that I had TB. I was afraid that my wife and my family didn’t clearly understand TB; they would be scared of me. Maybe they won’t want to stand near me. But when I talked very clear about it to my wife and family, they weren’t scared. They hug me like normal. It was good.

Loc, Snohomish County


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Vanessa

Chest pains and throwing up were two nasty side effects that 19-year old Vanessa encountered when she took medication to treat her latent TB. Diagnosed in 2012, she dealt with negative side effects from the TB drugs for four long months. She acknowledges the positive support of her mother, TB doctors and nurses for getting her through this challenging treatment. Witnessing the stigmatization of TB in Kenya where she spent her early years, Vanessa believes it is crucial to stop the shunning of persons with TB and that this can be accomplished with greater TB education here in the Northwest and around the globe.

Story Highlights

Support Treatment side effects Immigrant

experience Stigma Latent TB Asking

questions to health care workers

In Vanessa's Words

I think the relationship you have with your doctor and also the social support system is important. My mom was really supportive and telling me that it is fine. Doctors here (in the U.S.) have a way of talking to patients, and making you feel like, "okay we can do this." But in Kenya, you have to do this by yourself. You feel like you are alone. That is why people get scared in Kenya. But here I meet the doctor every month. I can call my doctor to tell her how I’m doing. That makes me feel like I have a relationship with the doctor. Like we are going through this together. If you’re sick, it is you and the doctor, not just you by yourself.

You have to ask questions. You have to tell your doctor and nurses what you are going through and just speak up, so you can get the information.

It was hard in the beginning to just have to hide the fact you are taking TB medications because of the stigma that goes on with having to deal with TB. The first 2 weeks of taking the TB medication were kind of hard because I was throwing up and then I had chest pains. I had to go to the clinic to just figure out if I should stop taking it or have me be on a weaker version of the drug because I was in the 4-month TB medication. So I decided to just keep going on it, and then it got better. Don't be so scared of TB. I think the stigma is not helping to those people who have to go through the treatment and everything, so if we can just get rid of the stigma and just educate people more.

Vanessa, Snohomish County


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Ellen In 2011, 61 years after Ellen had been treated and cured of TB, she composed a 16-page, cathartic testimony for herself and her family about her young adult experiences at a western U.S. TB sanatorium. She states that the facts of her TB treatment are simple, but the experience was not. The friendships she made in the sanatorium were deep and long lasting, but she recalls that fear and indignities were part of her TB experience as well.

Story Highlights Control Fear Resisting control

Indignities Stigma Sanatorium Trying to

feel human Loss of friendDesire to be

treated with respect and dignity Delay in

attending collegeAsking others their needs

before helping Distancing herself from

others

Ellen's Advice to People with TB Find out what things you can’t do and what things you can do. Because if you don’t ask, you assume you can’t do anything. Have contact with somebody who is recovering too because they know where you are. Talk with somebody so you can avoid feeling so different, so separated. Let’s face it, you have to accept the fact that there are going to be ignorant people out there and to not let their ignorance define you. You can find your supportive people, but you have to go find them. It is a dark thing to go through by yourself. The friendships I made at the sanatorium are unbelievable because we truly know each other.

In Ellen's Words We were all scared to death of our own disease, so consequently the TB sanatorium staff had a built-in weapon: our fear of our disease and a fear of the problems we could present to other people. They used that. There is a distancing that I automatically had with people. Don't get too close, and just the idea that 'oh my God, did I make anyone sick?' It was so devastating; it is more of a burden than you can believe. It skews your whole thinking as far as what is okay and what is not. How we were treated at the sanatorium reinforced it. As patients of this TB sanatorium, we all were all candidates for counseling but no one received it. Our choices were totally taken away from us. You gave this right over to the staff because you wanted to get well. One of the things that we used as a barometer as far as whether we might be getting better mentally, forget about the physical, was that we would get together and see how long we could talk before the whole idea of the TB came up in conversation, to get some distance. Years after our treatment, one of my friends from the san said was asked her if she ever thought about her TB experience. She said, 'Ever thought about it?? I still have nightmares.' I still have nightmares too.

Ellen, Washington State resident


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Beverly

In 1947, shortly after becoming a teenager, Beverly was diagnosed with pulmonary TB, a disease that was considered potentially fatal at that time. She spent three years and five months at the Firland TB Sanatorium. She became engaged to another TB patient who sadly died soon after Beverly was released from Firland. Later in her life, when her children were little, she was afraid her TB had come back. She was devastated and thought, "What am I going to do? Who is going to raise my babies?" After taking x-rays, the doctor assured her that the TB had not returned. Beverly felt like she had a new lease on life.

Story Highlights Sanatorium Support Impact on

education Loss of fiancé

Friendships Firland mailroom

Adapting to new routines Dedicated

staff Family impact Dedicated

mother

Beverly's Advice to People with TB

I spent 3 years and 5 months getting a

cure. Now 6 months and you’ll be fine. You

won’t have to stop your activities, you can

still live at home, and you’ll be just fine.

Beverly

In Beverly's Words

I was diagnosed with TB in the summer of

1947. The doctor said to my mother and I,

"Prepare yourself for a shock. Beverly has

TB." My mother just came apart. She

apparently thought I was going to die. I just

thought, "Oh well. What’s TB?”

I missed my friends. Their parents wouldn’t

let them come to me see because TB was

very contagious. They were afraid they

would get TB. I had to visit my sister and

brother outside the window. They had to

stand out there, so they only came when the

weather was good. Visiting days were

Thursday and Sunday, and my mother who

had rheumatoid arthritis rode the bus out

there every Thursday. She had to take 3

buses to get there from Burien, and how she

got up those steps I don’t know, but she was

very faithful. On Sunday sometimes church

friends would bring her.


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Lynnette

In 2006, while living in Kenya, Lynnette took care of an orphan boy who developed TB. It wasn’t her first encounter with the disease. Her own brother had died of TB in 1998. Because her brother had been shunned and discriminated against by extended family and community during his illness, Lynnette became a fierce advocate for the orphan boy, demonstrating to the community that she would care for – not discriminate against – this child. Although she, her daughter and son spent the next three years with him, only Lynnette and her daughter were diagnosed with latent TB years later while living in Snohomish County. Upon her and her daughter's latent TB diagnosis in 2012, Lynnette realized she again needed to be a role model, this time for her daughter. She faithfully took the TB medication for nine months, despite some side effects, and all the while encouraged her daughter through her treatment. Lynnette is grateful for being correctly diagnosed and for the treatment she easily accessed in Washington State.

Story Highlights Stigma Discrimination Gratitude

Support Impact on family Loss of brother to

TB HIV/TB Immigrant experience Latent

TB

"Growing up, from what I know about TB, it is a disease where people are

discriminated. I have seen the discrimination in my own family."

Lynnette

In Lynnette's Words

In Kenya, people will wait a long time before

they go to a doctor. That is not healthy, and

that is what happened to my brother. My

parents did not take him to a doctor until it

was too late. But here in the U.S., you can

have a friendship with your doctor. Your

doctor will take care of you. TB is curable.

The more you wait, the harder it is going to

be, so the best thing is just get the

medication. Get it done with and go on with

your life.

For the people who are taking care of people

who have TB, all they need is that support.

Not much, just check on how they are doing.

Have you taken your medication? How are

you feeling? Just be there for them. TB is

just a disease like any other. The one good

thing about it is it is treatable.

Lynnette, Snohomish County


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Doris Doris was 22 years old and working as a clerk typist for the Army when a mobile public health x-ray unit came to her Seattle neighborhood. She was diagnosed with TB and sent to Firland TB Sanatorium for two years. She recounts the daily, regimented routines of the sanatorium and explains how she witnessed families under great stress.

Story Highlights Sanatorium Regimented treatment

Finding humor Stress on families

Supporting fellow patients

"We used to say we could always tell

a TB’er because they will never run

when they could walk, they never

walk when they can stand, they never

stand when they can sit and they

never sit when they can lie down.

If you had 2 TB’ers that meet in the

desert, they will lean on each other,

because we learn to lean on things."

Doris

Doris displaying mementos from

her time with TB

In Doris's Words

At the sanatorium, you had to learn

community living and that you are not

the only one on the face of the earth,

because there is the other guy too.

There was a lot of sadness too

because once in a while somebody

would not make it. Yet, I met a lot of

funny people and some of them were

real characters. You had to laugh.

You’d better laugh a lot because

otherwise you would go crazy.

Doris, Snohomish County


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Mrs. Smile Mrs. Smile was pregnant with her second child, working, and caring for their 18-month-old daughter when her husband was diagnosed with TB. It was recommended that her daughter take TB medication to prevent active TB from occurring. Although at first she was fearful, she educated herself about TB and was able to emotionally support her family. She shared her new knowledge about TB with her extended family so they too could understand TB and not be afraid. The local health district also provided Mrs. Smile with positive support. However, Mrs. Smile noticed that some health care workers at other clinics, who were not as familiar with TB, were less compassionate towards her daughter long after she had completed her TB treatment.

Story Highlights Impact on family Pregnancy Young

daughter Treatment by medical staff

Family support Health district Vietnam

Transportation to clinic Prevention TB is

curable

In Mrs. Smile's Words

I took my daughter to the doctor because she

had a skin issue. They looked at the history of

her health and knew she did TB treatment in

the past, even though she never was

diagnosed with TB. So they wore masks. I

thought, don’t treat her like that, but I didn’t

tell them. But I know they just want to take

care of themselves, you know, and their job.

So it just made me mad a little bit.

I remember back home in Vietnam, in my

neighborhood. A father had TB, the whole

family knew it, but they didn’t know how to

take care of it. They didn't have health

districts or someone to help you with TB. He

infected the whole family and the people who

lived nearby, they were scared too. If you

want to keep it secret, just stay away from

people then. But they have the medication

here. We are lucky to live in America.

Mrs. Smile, Snohomish County


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Mary Mary was 18 years old and starting her first year at the University of Washington in 1943 when her father died of TB. He’d been misdiagnosed, which delayed any productive treatment and caused conflict within the family. Her stepmother was an "angel" who cared for and supported Mary after his passing. Now 88, Mary encourages others to recognize the symptoms of TB and never wait to get medical attention.

Story Highlights

Misdiagnosis Support Symptoms

Impact on family Advice to

community Loss of father and

mother Stepmother Family conflict

over father's care Advancements in

medical understanding of TB

Mary's Advice to People with TB Symptoms Get it checked out. Don't wait. Recognize TB symptoms. Get information. TB is not gone. You can't expect doctor to come to you. Try to get information from qualified people that can help you to know about TB. People should be aware what is going on and that TB has not gone away, it is still here.

Mary's stepmother

In Mary's Words

The picture above is entitled "Dedication." It shows

my stepmother sorting mail. After my father passed

away from TB when I was 18 in 1943, it was the

policy of the U.S. Postal Service to offer the spouse

a position in the post office.

I appreciate so much all that my stepmother did to

support, comfort and be there for my father and

assure that he would receive the very best of care

that was available at the time. I had a wonderful

mother who I sadly lost as a 7 year old child. God

blessed my brother and I with this loyal, responsible

stepmother. We became very close as time went

by.

Mary, Snohomish County


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Joan

Before Joan was even born, her grandmother died from TB, and the impact of Grandmother Nora’s passing was felt for generations. Joan always thought her Grandfather George was a stern man, and she never saw a connection between his wife's struggles with TB and his short-tempered ways. Encouraged by the TB Voices Project, Joan delved into the events that shaped his outlook on life after his wife died and the perspectives of their children. She also began the healing process of past generations.

Story Highlights Impact of TB on families throughout the

generations Understanding our past to

more clearly see the present Impact on

children Legacy of helping out family

Empathy for Grandfather Aunt Esther

carrying on the tradition to help those in need

feel special

"The TB Voices Project has been a bittersweet

experience. I learned more about my

grandmother and have great respect for what she

went through. As part of this process, I saw my

grandfather in a new light. Before, I didn't really

appreciate his struggle to raise four small

children on his own. Knowing some of the facts

has allowed me to adjust my attitude toward him-

--which had been pretty negative. This has been

an opportunity to delve into my family's past and

actually heal some hurts."

Joan

Joan's grandparents,

Nora and George Rorden

In Joan's Words

My Aunt Esther talked about

going to visit her mother in the

Salem Oregon Sanatorium. The

staff wanted patients to do

nothing. But Nora, she knew the

kids were coming, was all excited,

up a lot, and my Aunt Esther

remembers her mother running

down this long hall to grab her up

in a tight hug. At this point, there

was no hope for her treatment

and from there she was released

to go home to die.

Joan, Snohomish County


21

An African Immigrant's TB

Experience An African immigrant in the Puget Sound area wanted to share his TB story to educate and inspire immigrants and non-immigrants. He was treated for TB in an African country. When he came to the U.S. after his treatment, he experienced dental and medical health care workers who reacted with fear when he disclosed that he once had TB. His voice speaks to the medical and social complexities of this disease. Due to the pervasive stigma of TB, he chose not be identified for this project.

Story Highlights Importance of support Treatment

Stigma Delay of diagnosis Access to

TB medicine in Africa TB documentation

in U.S. HIV Advice to others

Immigrant experience

In His Own Words

The treatment is very long and it is a lot of

medication that is not very tasty. You need

somebody who will make sure that you take

that medication each and every morning,

even when you feel better. Otherwise, your

TB will become resistant and then it will

difficult to be cured.

At a hospital in Seattle, they wore negative pressure masks. It was very scary. I wish they had told me why they were dressed like that, but I didn’t realize the reason until a month or so later. They thought I had drug resistant TB. That is why they were wearing those masks. But it was very scary because they looked like they were going to the moon or something, so I thought, oh my god, I must have something. I’m going to die.

Just because you have TB doesn’t mean you have HIV. You could, but it doesn’t mean you do. Be aware that there is a difference, since anyone will give you information that may not be correct. Get information from someone who knows, like a doctor and get tested for HIV.

African Immigrant, King County


22

Karen

In the mid-1960’s, Karen was living in Germany with her husband, a U.S. Army physician, when she was diagnosed with TB. Karen was caring for her toddler and a newborn when the doctors sent her into isolation at the Nuremburg Hospital. Later tests showed she was not positive for TB, but the Army protocol was rolling and there was no looking back. Her family's life was uprooted and their future rapidly changed course.

Story Highlights

Isolation Negative TB results Impact on

family Separation from children

Appreciation for those with chronic

disease Trust in self and community

Body will heal

"Being diagnosed with TB changed our

lives. We signed up for nine more months

in the military; canceled my husband's

residency; I was isolated from my kids;

and in the end, I gained a general

appreciation for the importance of health

and that keeping healthy is really critical to a

quality of life."

Karen

Karen

In Karen's Words

When you get a diagnosis of tuberculosis or any kind of chronic debilitating disease, you have to really find inner resources in the midst of all of the circling around that your mind does and the high drama and the early death and all the things that one thinks of. I think that confidence in yourself and confidence in the people that you gather around you is really absolutely critical to how we progress through this life journey. Trust in the process and the body does heal. The body is amazing in how it will heal if you take care of it, rest it, feed it well, stroke it well and take your appropriate drugs. Sometimes it is hit and miss, sometimes you have to try different protocols, but it is a life journey, is it not?

Karen, Snohomish County


23

Marcia

When the same doctor who had cared for Marcia as a child began caring for her own children, he was in awe that she was even alive, let alone raising a family. He remembered her as a 13 year old 7th grader in 1956, when he had diagnosed her with TB meningitis. Marcia recovered at Firland TB Sanatorium, where she made a lifelong friend and underwent the arduous work of relearning how to read, write and walk.

Story Highlights TB meningitis Diagnosis Sanatorium

Fear Family support Friendship

Relearning to walk, read, and do math

Humor

"I said,

'Dad, I have to be here at the

sanatorium for a year?'

He said, 'I know, I talked

with the doctor.'

And then we both cried."

Marcia

Letters Marcia wrote to her family

In Marcia's Words

I might be writing a letter to home

when, in comes the doctor! I had to lay

on my side, roll into a ball and get into

that position for that spinal tap. Had

them twice a day. I had to lay on my

back for at least 2 months, and I used

a walker to learn to walk again.

There was another girl with the same

disease. She had the TB meningitis.

The nurses said they would get us

together when she came out of her

coma. We stayed friends forever. Once

we were discharged, our families did

everything together.

Marcia, Snohomish County


24

International Student Around 2010, an international student in her 20’s studying in the Puget Sound area, never imagined she would be diagnosed with TB. She endured loneliness, severe medication side effects, isolation, and fear of her own death. The TB she had was known as Multi-Drug Resistant TB, (MDR-TB), meaning the TB bacteria she had could not be killed by the two most powerful TB antibiotics. She tells her own TB survival story in a compelling two-page testimony for the TB Voices Project.

Story Highlights Impact on life Isolation Impact on

school Importance of support Side

effects of medicine Support from health

district Immigrant experience Fear

Goal to finish treatment

"Since I was lacking information about TB, I was

in shock when I heard I was infected with TB, and

I thought I would die because I always thought

TB killed people. It was very difficult to live alone,

without my family and friends around."

International Student

In Her Words

I had no reason and interest to live. I was in constant fear. When somebody knocked my door I felt fear, weakness and had no energy to open my door. I started to go to psychologist. I was informed that these psychological changes were side effects of my TB medications. Sometimes I was so weak that I could not prepare breakfast, lunch and dinner for myself. Side effects were even worse when I took TB medications without eating anything. I took medications like they were food. My only goal was to take my TB medications when nurses came in the morning of weekdays. I started to count days. Every time when I took my TB medications I was happy thinking very soon I would be healthy and the side effects would stop. I think I am the lucky one who was tested early and had the best nurses and doctors who respected my condition, provided me with their kind support and encouraged me to finish TB treatments without giving up. The last 6 months of my TB treatments were much easier to me both mentally and physically. I started to plan my future and became more self-sufficient. However, I worried about my lack of memory, which prevented me from studying.

International Student, Puget Sound area


25

Marjorie First as a young woman, and then as a mother in her 30s, Marjorie experienced a total of 16 months in TB sanatoriums in New Jersey and Washington state. In 1952, she was diagnosed with TB a second time and sent to Firland TB Sanatorium. Her son was nearly two at the time. She feared that a recurrence of TB would be a death sentence for her. However, access to new antibiotics meant she could get cured, not die a young mother.

Story Highlights

Acceptance Sanatorium Support from

family TB twice TB felt like a death

sentence Access to antibiotics made the

difference between life and death TB Impact

on family Pneumothorax Amused and

comforted by reading Betty MacDonald's "The

Plague and I" Side effects of medicine Pain

from rib removal surgery

"At the TB Sanatorium in New Jersey, they moved me when I could be up and around some to these "chalets" and I had a roommate there. It was all open, just screens around it, and then we

had another little room where we could get dressed, which was kind of nice, since it was

cold; and the snow came in on our beds."

"I tried to look on the bright side. I think I’ve been fortunate that I have a personality that

makes that easy for me. Some people it wouldn’t be. But, I’ve always been able to see

kind of the bright side of things. I think that helps in one’s healing."

Marjorie

Marjorie

In Marjorie's Words

I was fortunate the second time I had TB because I went to Firland TB Sanatorium when there were many big changes in the treatment of TB. They were using antibiotics and I was put on streptomycin. They had refined their surgeries and they took a rib out of my chest to collapse the lung more. It was not disfiguring like the terrible surgeries that they used to do. And so, with those 2 things, I was able to able to return home, so that my 18 month old son was not threatened by TB.

Marjorie, Snohomish County


26

Chuck and Joanna

Thirty days out of the Army in 1946, Chuck was ready to get to work supporting his wife Joanna and their two girls. The job he applied for screened him for TB and he tested positive. For over a year he was a patient at a TB Sanatorium in Liberty, Missouri. Joanna not only became acquainted with TB through Chuck, but she also remembers how her aunt died of TB and the impact it had on her eight children.

Story Highlights Separation from family Impact on families Aunt died from TB Sanatorium TB patients considered a threats to others Independent spirit of the family Support of family Loss of independence and providing for family

In Joanna's Words

Before I met Chuck, my aunt had the 8 children and no twins. The oldest one was about 14 when she had the last baby but that is when they found out she had advanced tuberculosis and they took her to the sanatorium. She was there for several months but she died. The children, none of them had it. Four of the children came and lived with us for a while and then my grandmother and grandfather took care of the others. You know, that is the type of thing everybody did in those days. TB definitely impacted the family because everyone was poor in those days.

In Chuck's Words At the TB Sanatorium, I was robbed of a year and a half of my life that I could have been doing something, but they did it for my own good. I understand that, but they didn’t really compensate me enough to keep me going, you know. It was my time to bloom, and I’m sitting there vegetating. I saw some guys in the hospital that were in real sad shape, and I don’t know how long they made it, but I saw some pretty sad ones, and I would go around and talk to them. I knew they were hurting.

Back then, I never wanted anyone to know about my TB. Anymore I don’t care because there are so many years behind me, you know, and they can see that I’m no threat to anybody, but back then they considered you a threat, and you just kind of had to keep it quiet and just not let anybody know about it. You had to be discrete and not get out there and push yourself off on somebody, you know. And I did, I stayed away from everybody.

Chuck and Joanna, Snohomish County


27

Palmer Palmer spent a total of four years in

Washington state TB sanatoriums when he

had TB of the kidney and bladder. From

15-18 years of age he lived at the Riverton

Sanatorium in Burien, away from his family

in southwest Washington. He credits

friends he met at Riverton and the

compassionate staff with helping him cope

with the experience. Three years after his

discharge and newly married, Palmer had a

reoccurrence of TB. He was sent to the

Edgecliff Sanatorium in Spokane for three

months. New TB drugs allowed him a

speedy recovery.

Story Highlights Fear of the unknown Support

Relapse Delay of education

Sanatorium Distance from family made

visiting challenging Making new friends at

sanatorium Father died of TB

Separation from wife Good nurses

Fear of loss Kidney

Palmer

In Palmer's Words

It was a hard time when I had my

kidney removed when I was 15,

because I had known my dad had

died of TB and I didn’t know what

my prognosis was.

My wife was really worried when I

got sick the second time, but it

didn’t take long for them to

determine that with the new drugs

that they had at that time, it took

care of it right away.

Palmer, Snohomish County


28

Mickey Mickey was born in 1936 and was an only child. She was 9 years old when her mother Ole, a nurse, contracted pulmonary TB. During her years of illness she was eventually sent to Firland TB Sanatorium for three years. Mickey experienced many transitions as a young child and teenager, living with various relatives who had different lifestyles, religions, and interests. Mickey explains how the diagnosis and treatment of TB greatly impacts family dynamics and decisions.

Story Highlights Lifestyle changes Impact on family Sanatorium Religious conversion Child perspective Mother very sick Aunt and Uncle guardianship Suicide of her mother's friend, a former TB patient Impact on education TB not discussed within family

"When I went to live with my aunt and

uncle on my dad's side while my mom was

at Firland TB Sanatorium for 3 years,

I can’t remember going to any of my aunt’s

friend’s houses and being with children.

I was the child. Whereas, even though

I was an only child, when I would be with

my mother’s family, I never felt like an only

child. People were always making music.

It was completely different."

Mickey

Ole at Firland TB Sanatorium

Visiting her mother at Firland TB Sanatorium, Mickey was only allowed to speak to her through an open window.

In Mickey's Words

While at Firland TB Sanatorium, my mother converted to Catholicism, but I had not. When she was discharged, I was entering 8th grade and I know I was a problem. My parents likely thought, 'what are we going to do with Mickey? We are now Catholic and we want her to go to a Catholic school and she has only gone to public schools.' In 1949, that was not an easy transition. Off to Holy Names Academy I went. I loved school, so that wasn’t so bad. But there was a very small, feisty, and very bossy nun who called me "the heathen" the whole first year because I wasn’t baptized Catholic.

Mickey, former resident of Seattle


29

Shirley

When she was 26 years old and working at a nursing home, Shirley was diagnosed with TB in her collarbone. With 3 young children and little help from her first husband, she found support from her extended family and friends. She stated she was "locked up" in Firland TB Sanatorium for five months, and often left the premises unannounced to buy provisions for fellow residents. Shirley later married a former Firland patient, and remains close friends with a former female patient who shared in many of her Firland experiences.

Story Highlights Support Impact on family

Sanatorium Friends support Lack of

spousal support Escape from

sanatorium Playing games Meeting

future husband

"After I got out of the sanatorium after five

months, my 2-year-old had no clue who I

was. Once he figured out who I was, he did

not want me to leave again.

There was some abandonment fear or

something in him. He finally figured out

that I was his mom. Yet, when I got ready

to leave the house for a short errand, he

would cry so hard that he would actually

pass out and fall down. But then, finally

over the years, it got better."

Shirley

Shirley holding a picture of her standing next

to her friend's "get away" car.

In Shirley's Words

One time, I escaped from Firland TB

Sanatorium to go see a doctor who might get

me out of there. My friend Bev pulled her car

into a back field and put me in her trunk. She

got me out a few blocks down the street. At

the doctor’s office I told him my story and he

said it was against the law to leave the

sanatorium if you have TB.

So, we went back to Firland and on the way

we stopped at a hamburger stand because

their food was terrible. We bought

hamburgers and milkshakes and when we

went through the front gate, we told the guard

we were coming in to visit with Shirley. They

just waved us on, with me in the front seat,

because he didn’t know who I was!

Shirley, Snohomish County


30

Jeanne

In 1968, Jeanne was the mother of five children and six months pregnant when she was diagnosed with TB. She took the TB medication for one year, yet the family stress and her own fear were almost intolerable. She found the strength to complete her treatment and make changes in her life to provide a healthier environment for herself and her children.

Story Highlights Lack of support TB treatment Impact

on family Marital stress Shunned

Impact on children Weak immune

system

"I moved to Seattle from

Washington D.C. with my sister and

her family. I went to work for the

Space Needle. I was required to

have all the health qualifications. I

passed the tests because the x-ray

person did not see what the

University of Washington doctors

later saw in 1968; I had a positive

TB x-ray along with the positive skin

test. I had TB."

Jeanne

In Jeanne's Words

I was six months pregnant at the time. It was an awful experience and fear was all I felt. I was a whole 99 pounds when I delivered my daughter in January 1969, and on isoniazid for one year. My world was turned upside down. Applying for jobs was not an option. If you were truthful and told your medical history, they ignored you. I sorta understood them. With more TB at that time, if I were an employer I would be concerned for other employees, health cost, etc. Nothing was really locally known about a person who recovered from TB and could function without spreading the disease again. I married again this time for almost forty years. All kids did not have medical issues related to the disease. I heard that the issue I had with kidney infections was related to the TB drugs. Survived that! The battle was a tough one but you have to stick in there. I had a weak immune system for life, but you go with the flow.

Jeanne, Snohomish County


31

Jan

Jan was two years old when her 19-year

old mother was diagnosed with TB in 1937.

Her mother has just given birth to a baby

sister. Jan stepped up to mother her

younger sister and to be a companion for

her father. Her mother stayed at the

Firland TB Sanatorium for two years.

Story Highlights Impact on young family Mother and father

had TB Caring for baby sister Support

from grandparents Sanatorium

Independent child

In Jan's Words

My dad would bring my mom food at the

sanatorium and I think that helped her keep

more satisfied. I think she felt she would be

able to get better and get out of the TB

sanatorium because she had to watch

some of the other patients reeling, spiraling

down instead of up.

If you are supporting someone with TB,

make sure that you don’t give up. Give

them all of the support that you can muster.

To be supportive with this particular person

or family, you need to read up, go to the

library, get as much information as you can.

Jan

After Firland, my mom did very well. She

always took very good care of her health.

She did everything the doctor told her to do.

She was generally in very good health and

actually never had much problem during all

those years, though her marriage was

difficult for her. There was a lot of strain on

my mom and dad. Being 19 when she was

diagnosed; 21 years old when she came

home to a little baby and one getting ready

for school; and my father being ill himself

with TB. So that was difficult.

Jan, Snohomish County


32

Rose

Prior to immigrating to the U.S., Rose and her husband were hardworking farmers in the Philippines, raising 7 children. Rose cared for her husband when he developed pulmonary TB twice. She and her children encouraged him to stop smoking, eat healthy foods, and seek treatment from the local hospital. Her involvement with his care led Rose to become a volunteer health worker and help other TB patients stand up to stigma of TB.

Story Highlights

Impact on family Support Access to

medication TB Relapse Prevention

Stigma Philippines experience

In Rose's Words

Because of my husband's illness with TB,

I volunteered for 23 years as a health

care worker until I came to the United

States.

In the Philippines, you are not supposed

to say you have a TB because you are

shunned by the community. So, if your

family has TB, you don’t tell anybody. It

is a secret. Because once you tell them,

the people believe others will not come to

your place or they will not be near you

because they are afraid they will be

affected by TB.

Rose shares her 4-page TB story

I am not ashamed of telling everyone

about my husband's TB so that other

people will be given the chance to get

help.

If you have TB don't be afraid. You

should not be embarrassed to say that

they have tuberculosis because

tuberculosis today is quickly treated.

Rose, Snohomish County


33

For more information about the TB Voices Project Contact Teresa Rugg at 360.862.9034 or

[email protected]

http://www.tbvoicesproject.com

mailto:[email protected]

Documents

Stories from the TB Voices Project