The entire LupusChick team is excited to announce that this Spring’s College Stipend award is now open thanks to the generosity and support of this season’s donor, Christopher Johnson. Christopher has donated this stipend in honor of his beautiful wife, Ada, who passed away from Lupus on November 30, 2019.
Before we get into the stipend award specifics, I wanted to share a piece that Christopher wrote about Ada. It is one of the most heartfelt and beautiful things I have ever read and gives us such an amazing glimpse into the life of this incredible woman. Ada losing her lupus battle is truly a loss to this entire world.
A Life Remembered – A tribute to my wifey, my best friend, my soul mate, my true love
By Christopher Johnson, her highly flawed husband
It was March of 2011 when I first met Ada. She was unlike anyone I had ever met before. They say you just know when you meet the person you are supposed to marry, and I knew very early on that Ada and I were meant to be together. It was shortly after we started speaking that Ada did the bravest thing she could. She told me that she had lost her kidney to lupus and she would understand if I didn’t want to continue our blossoming relationship. Ada understood well that most men would be put off by a woman who had a significant health condition. Perhaps I was naïve or maybe God touched my heart, but I didn’t see her lupus as dialysis as anything more than a challenge that people so often have to overcome. At the time, my mother was at the middle stages of Parkinson’s and Dementia which would lead to her passing in 2015. Perhaps my mother’s illness helped shape my view on health issues, I cannot be sure, but I can tell you with 100% sureness that I never thought of my wife as a sick woman. I knew she was sick, but in my mind, it never defined her.
I still remember when I asked Ada to show me on the webcam the dialysis she had to deal with. Unlike dialysis here in the US, where patients will go to a clinic a few times a week to get their blood purified, Ada’s regime involved hooking up a tube that protruded from her lower abdomen to an empty bag which would collect waste products, and then a second bag which would add fluids to her system. This happened 3 times a day, each time for about 90 minutes. Imagine for a minute that you’re a perfectly healthy new mother, and the next thing you know you’re in the hospital with total kidney failure and have to face a new life where you’ll be unable to do much of anything because you need to give yourself dialysis three times a day to stay alive.
Ada’s dialysis was a major part of our early life together. We couldn’t avoid it as she had to do that or she would die. I remember thinking how blessed my life was and how strong of a woman Ada was for taking it all in stride. She knew she had to live for her daughter, and also so she could fulfill her dream of one day living in the United States.
Ada had a deep fascination for life and the beauty of God’s creation. Had Ada been born somewhere differently, I truly believe she would have had a career in the Veterinary or Shelter Pet world. She LOVED animals. I’ve never met someone who loved animals more. Every time we would see a cute animal on TV or YouTube or another platform, she’d give that oh so cute, “Ooohhhh, can we get one???” and look at me with those big eyes and melt my heart. Had I not had the strength to say no, I believe our home would have been quite the zoo!
To truly know Ada, you had to know how important her daughter Amy was. Ada frequently told me that she wanted Amy to have a better life than she had. Amy was truly a gift from God, and she was without question, the most important part of Ada’s life. Ada was always so proud of Amy, no matter what! Her love was a deep devotion that you would hope all mothers have for their daughters, however I believe is probably far too rare.
A Life of Pain
Ada was in pain every single day that I knew her, yet very few days did she let those around her know how much she was hurting. She didn’t want people to see her as weak. She told me on quite a few occasions that every day was a gift, and no matter how hard it was, she wanted Amy and me to see her with a smile on her face enjoying life. Quite honestly, Ada was the most impressive, bravest person I’ve ever met. While some people spend their entire life complaining about everything, she rarely let her illness define her, although she had every right too.
Of all the things I miss about my wifey, most of all I think I miss who she was. Ada was so unique and perfect for me. She always could put a smile on my face, and her beautiful spirit is what I hope people remember most about her. If you ask any of her friends or family that really knew her, a twinkle will come to their eye as they remember a time when Ada brightened up their lives with her sense of humor, joyful spirit, and honest care for those around her. Rather than write a lot, I think I’ll use pictures of her that I feel define her personality as I know Ada would want others to remember her. Pictures paint an incomplete portrait of Ada’s soul, but I hope these images will let you know a little about who Ada was.
Ada exemplified the Latin saying Carpe Diem (Seize the Day), in fact for a very long time it was plastered on her Facebook Page. The saying of course became very popular after Dead Poets Society hit theatres in 1986. I ask that you take a few minutes to think about your own life right now. Some many of us are blessed with health and prosperity, and we forget just how amazing and special the gift of life is. I challenge you to not accept average. I challenge you to seize the day as Ada did, and live each day to its fullest.
Ada, I miss you so much. Not an hour goes by when I don’t think of you and wish this was all just a horrible nightmare that I’ll wake up from and have you here with again. I don’t know how I will go on living, but I know that’s what I have to do, for you and our daughter. I know you are no longer in pain and I believe that you are with God experiencing a peace and joy beyond any that words can describe.
Below is Ada’s last FB post before she passed:
Life is a struggle – whatever you’re struggling with, it helps to hear words of encouragement that remind us that we all take knocks in life, but the best things in life come through persistence. Whether you’ve just had another setback chasing your dreams, been rejected by someone you care about, faced tragedy, or you’re just feeling drained from the ups and downs of this journey we call life, remember that things can turn around in an instant. All you have to do is keep moving forward, even when it feels like it would be easier to just lay down and give up. Thank you to every person, friend and member family to pray for my health conditions!!! God bless you…
How to Apply
Applications for the Ada Johnson/LupusChick College Stipend Award are open until June 7, 2022. You must be currently attending a technical program, community college, university, or certification program in person or online for the Spring 2022 to be eligible. The following must be included in your lupus scholarship application:
- An essay about your journey with lupus (up to 1500 words), what you are studying, and how you help to increase awareness in the lupus community and beyond.
- A screenshot or attachment showing college schedule for the current or next semester.
- If you are the winner, you must be able to furnish a single sheet medical record paper or doctor’s note with the lupus diagnosis/or diagnostic code on it. (If you already have this, you can send it in with your essay).
Please send all material to Marisa@lupuschick.com by June 7, 2022 with the SUBJECT: Stipend Application. Stipend can be used for tuition, housing, supplies.
The winner will be notified in June 2022.