It’s been awhile since we have done “What Is Your Passion Thursdays”. This feature is special because we went to High School with Mrs. Hetlena Johnson. We knew that she had a job traveling to various cities across the United States, and we thoroughly enjoyed viewing her pictures on social media. A couple years ago we also learned she had Lupus, and wondered ‘what’s it’s like traveling with Lupus’? Hetlena in her own words.
Hetlena Johnson, Ed.S. is a Digital Resource Coordinator for Richland School District 2 in Columbia, SC. Her 14 years of experience in education, includes a instructional technology education and personal experience in the world of finance. She has had several businesses to include her own property management company based in the St. Andrews area of Columbia, SC. In her spare time enjoys, traveling, reading, and writing for her personal blog.
How did your passion for Lupus education come into fruition?
My passion for Lupus education happened naturally. Being a teacher by trade, I have a background in education. What’s great about my passion is that I am already passionate about education itself. My experience includes teaching in the K12 school system to being a teacher trainer and professional consultant. So I’m accustomed to the practice of sharing information. Taking the opportunity to share what you know with someone is a blessing. I believe that it’s natural for others tell what they know about a subject, especially if it’s something experienced firsthand. When it comes to sharing information about Lupus, I’m always ready to implode! I say implode, because, for me, facts about Lupus comes from the inside out. The topic is something that’s very close and dear to my heart.
So my passion with lupus education is more of a reflection of my life. Having to live it daily, allows me to soak it all up. For me, everyday of survival is a blessed opportunity to talk about it and express what Lupus awareness and education is all about.
What sacrifices did you make in pursuing your passion to travel?
Well, before pursuing my passion to travel it wasn’t really a struggling decision to make. Traveling had always been in the back of my mind. I knew it would bring along some stress and take a lot of time to get adjusted to the inconsistency traveling can impose on you. But it was more of a choice for me, a challenge. I chose to accept the job that allowed me to travel around the United States. I always wanted to travel and I love to teach. The job allowed me to do both. I’ve had the taste to travel and see different places, so why not get paid to do it. The area of the sacrifice is the affect travel would have on my body. I have to admit I was very nervous at first. When I was stuck in an airport overnight, I’d ask myself, “What are you doing?” I recall being stuck in a hotel for six days due to the winter Polar Vortex of 2013-14. I was on assignment in East Chicago, Indiana. Again, I would often question situations like that because my health and being was being put to a test.
Other personal sacrifices include having my family and friends worry. Those close to me that knew I have lupus we’re familiar with the fact that it can be a very ever changing disease. If you travel with lupus, you had to be willing to be flexible. Many times, Lupus decided who was the tour guide on my trips. I would get stressed when my family constantly called to check on me because they were watching the news about a destination I was nearing. I didn’t like feeling the stress of their worry, so I would designate my husband and close friends to be my contacts instead of my parents.
Although I loved the opportunity to travel and the people I would meet from different cultures, it was hard traveling alone sometimes. But it was neat to see that all of us, no matter where we live, are basically the same. We all want to enjoy life, and traveling just gave me a chance to actually share my passion to educate others about Lupus. or I would often don a shirt that had something about Lupus on it. There were plenty of times that someone would approach me in the airport and ask what those five letters mean on my shirt. It would often be the perfect time to share what I know about Lupus. You can never have to much awareness!
One particular thing that I took great pride in is that because I was traveling a lot during the month of May. With May being National Lupus Awareness month, I’d carry in my briefcase two nine and half by twelve inch car magnets that sported, “Do you know what Lupus is?” When I’d reach a destination, I’d slap it my rental car doors. From curiosity, this would turn many a head. At times I would wow myself, while at the same time be more cautious because people would wait by my car for me to come out of a store just to speak to me about the Lupus sticker on my car!
What advice would you give others who are fearful to Take A Leap to travel with Lupus?
Having lupus can be scary– everyday scary. Because you never know when you are going to be in a airport terminal exhausted or sick to your stomach. Not to mention being to weak to lift your carry-on bags into the overhead compartment of your seat, or worst. And that’s nothing compared to the many different symptoms of lupus that travel with you and choose to pop out of your carry-on at any time it chooses! Lupus is so unpredictable! Because symptoms consistently vary in people diagnosed with lupus, fears of travel may differ from one lupus patient to another. My advice is to seek advice. Because I had this opportunity to take my lupus on the road with me, so to say, I decided to capture the tips and trips that worked for me in a book entitled “Traveling With Lupus.” Currently it is available for pre-order on Amazon.com. It will be available for purchase late May.
How can readers learn more about you (social media, website, other contact info)?
I frequently wonder my Twitter account, @TheLupusLiar. I often blog on my personal blog site at www.TheLupusLiar.com. The blog is also connected to the site where my followers can find out more information on my books at www.JHJohnsonBooks.com.
Rhonda W. & Sharee W.