Written by LBailey on 07 July 2012
Editor’s Note: A few short months ago, I was talking to Phyllis on the phone. She said, “Tosin, I can’t believe you haven’t asked me to be featured on warriors in the spotlight.” To which I said, “I’m so honored you would want to be featured…I totally want to be like you when I grow up.” I’m eternally grateful that she did this interview when she did. Because now, we can hear her voice through this post.
It is said that the Universe takes no notice to the rise and fall of man, but I would contend that the heavens themselves mark the passing of Leaders. It is with a heavy heart, but a profound sense of pride that I present the final interview of Soldier, Warrior, Leader, Phyllis Zachery-Thomas. Although this pioneer is no longer with us, it is my fervent prayer that her story ignites in all of us the fire and passion that so brightly burned in her.
Meet Phyllis Zachery-Thomas: Founder of the SCD Soldier Network, Inc., Author, Pioneer and Leader.
How old where you when you found out you have sickle cell?
I was diagnosed with Sickle Cell (HbSS) at the age of six months
When I was in school I was not equipped with the tools needed to manage this disease. I had to graduate High School on the Homebound Program, although I did begin learning bio feedback. I attempted to attend college, but only completed one semester.
What do you do? What kind of experience and schooling does one need to obtain your job?
I am the Founder & President of SCD Soldier Network, Inc., a volunteer organization dedicated to supporting those with sickle cell and training those who want to become advocates. I worked in various industries before my health got so bad that I could no longer work in “Corporate America”. The great thing, however, is that everything that I learned has prepared me for my current work. I worked in various areas of accounting within the banking industry and I also worked in retail. I think the most instrumental thing that I did that prepared me to run a non-profit was volunteering as the Youth Advisor for the NAACP for several years and helping to start a transportation company that is still in operation after 20 years.
How did your childhood and your parents influence you in your career choice?
My mother never put restrictions on me. If I thought I could do it she encouraged me. I was advised, however, to do things that didn’t have strenuous physical requirements. That attitude helped me to feel as though the sky is the limit.
Describe a typical day on your job.
There really is no typical day, because sickle cell makes sure of that. What I would like a typical day to look like would be working 9am to 6pm on Monday through Friday. In general, I do my daily social networking post, write a blog and work on proposals in search of funding. Another important part of my work includes connecting with the volunteers who are a part of my network. My biggest investment is in the people that I serve. I want to know all of them so the telephone is my biggest tool along with my social ability to relate with others.
How do you manage SCD and still maintain a thriving career?
I would have to admit that in my life there is very little that I can do to manage this disease. I do however listen to my body and rest when it requires me to. Most of the time I have to press past the pain and the lack of energy. I know without a doubt that I can’t maintain a traditional career. It may look like I do so much, but the truth is I am doing it from pure passion and that is why finding and training others to be leaders is my main goal.
Are you comfortable revealing your sickle cell diagnosis with your coworkers? Why or why not?
When I worked in “Corporate America” I kept it under wrap until the disease began to manifest itself and I was having difficulty hiding it. The main reason that I didn’t share is that it was not a factor in my ability to get the job done. I always advise people who are attempting to work with this disease to go into the job with an “Employee of the Month” attitude and create value so that if you ever face health challenges you are such a valuable resource that they will support you and protect your position. I did that for ten years at the bank until it became obvious that I was no longer able to maintain a full time position.
Have you noticed a difference in how your coworkers treat you once they know you have SCD? How do you explain sickle cell to individuals who are unfamiliar with the disease?
I didn’t experience too much negativity once the cat was out of the bag, but they did want to know more. I was only able to share with them how the disease impacted me up to that point and had no real knowledge of the disease from a broader scope. I wish the SCD Soldier Network was around then, so that they could come in and explain in a more comprehensive manner and offer all of them to opportunity to support me in a more effective way.
What advice would you give a fellow warrior wanting to join your profession?For those who would like to start their own non-profits, my advice is to first count the cost. You will have to be very careful of your board selections and you will probably have to finance the operational budget single handedly for the first years. Be sure to surround yourself with people who not only support the cause, but people who support you. It’s no easy thing and funding is not easily available without the right connections. Thinking about all it takes to create an organization and managing an un-manageable disorder is more than most people know. The final piece of advice is to be sure to have outside financial resources, because getting paid is one of the final pieces to the puzzle. I don’t know how soon that happens, because I have not made a penny and don’t expect to anytime soon. Any funding received has to go towards having a solid sustainable organization so for me salary is the very last thing on the list.
Has sickle cell limited any areas of your life?
Sickle cell has limited or impacted every area of my life. Due to the state of my health, it prevents me from believing that I will have many more years to live which, in turn, has affected me mind, body & spirit. I have great faith and I’m not caught up in statistics, but my body is breaking down and I have gone through so many stages in life that made me want to raise my flag and surrender. I have been at the point of wanting this battle to end and I relate to those who look at warriors who are excelling and feeling like that will never be them.
When you reach obstacles in your life, what helps you through it? It is much easier now for me to get through the obstacles and tough times because I found my life’s purpose. I know that my journey has led me to helping others. One thing that I know for sure is that helping others brings about healing to you. Maybe not a physical healing, but the physical pain for me did not compare to the mental pain that I once experienced.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
Yes, I have pain everyday and somedays the pain is greater than others. When I am working on a “must do” project I use everything that I have to get through the day. That includes prayer, medication, bio feedback & meditation. If I need oxygen I grab it, put it on and increase the fluids. Everything any doctor has ever told me to do, I do.
What is your daily medication regimen and what medications do you take when you are in pain?
I take my daily dose of folic acid, for the chronic pain I take oxycontin 3 times a day along with phenergan. For breakthrough pain I use dilaudid and oxygen. If I am using the breakthrough pain medication for more than a day or two, I go to the doctor so that I can go into the hospital and be monitored. I know of too many instances of overdose, so in an effort to get my pain under control I don’t want to kill myself.
How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
I am married and have on child of my own, one step-daughter and a few God-children that are my kids in every way. I am also the proud grandmother of one who I refer to as my mini-me. My marriage has been affected because I didn’t know how to respond to my husband’s support whenever I was in a pain crisis and hospitalized. I put up walls and closed him out, which left him to deal with what was happening to me alone. It led to infidelity and a loss in communication. I did the same thing to my daughter and it impacted our relationship as well. I was not able to support her when she had programs and events. When she was in school she sang in the choir and was an athlete. I missed most of her performances and competitions. I am now working to repair all of the damaged relationships that were the result of not managing this disease effectively. My granddaughter is having a different experience because of where I am now in life. She knows all about SCD and she knows what it means for her to have the trait.
Will you tell us a bit more about your husband?
My husband’s name is Phillip and he is a career military man. He retired from the army after 27 years of service. We are currently separated, but working on reuniting. He has always been in my corner. It was my fault that I closed him out because he has always accepted the fact that I had sickle cell. I was in the hospital when we were first introduced and he participated in all of my support group and education meetings before we were married. My doctor even counseled him about my limitations and the inconsistency of the disease. We were married very young and one of the reasons that he stayed in the military was so that I had great health insurance coverage. It’s amazing how things have come full circle, because SCD Soldier Network is modeled in a lot of ways like the military so my prayer is that we will be able to have a life together where we are partners in every sense of the word.
You mentioned that you have children. What was your pregnancy and labor experience like?I was blessed to give birth to my daughter, Candis, who has the trait. I knew that Phillip didn’t have the trait so she wouldn’t have the disease. I was 20 years old and fearless. Of course it was deemed as a complicated pregnancy, but I didn’t have many problems. My labor lasted 12 hours and I thought at the beginning of the labor that I was possibly having a crisis. It never got to the level of sickle cell pain and soon I realized it was time to head to the hospital. I didn’t have any unusual experiences giving birth. My only fear was that on a couple of occasions I required large amounts of pain medications including demerol and I didn’t know what affect that would have on the fetus. I thank God that she was born healthy and had no problems. She did struggle a little in school, but she was able to do well in High School and go on to Clark Atlanta University before giving birth to my granddaughter.
If you could have a conversation with your 14 year old self, what would you tell her? Is there anything else that you would like to share with the sickle cell warrior community?
I would tell myself that people who love you want to support you, so let them in. Don’t close people out because you don’t know how to share your battle. This is the same thing that I want to share with this community. Don’t fight this disease alone, because you will lose. It is a killer and you need as much support as you can garner. My final word is that it’s OK if you haven’t equipped yourself to fight like a warrior. The SCD Soldier Network, Inc. was created for warriors (those well skilled) and privates (those who know very little about their disease) together we can fight this disease and win. Join us in the fight against a war that has been waged against our community.
Thank you Phyllis. We will miss and love you forever. Rest in Peace.