Written by Tiara Lighty- Lynch
Have you ever met someone in your life that you just clicked with and you both plan your entire life out together?!
Well, I met that person in 1997 and her name is Angel Williams.
Angel and I met in middle school. I was in 7th grade and she was in 6th. I didn’t know her very well, but she signed my yearbook. During that summer break, I was at my grandmother’s house and decided to call her. That 1 phone call turned into a bond that couldn’t be tighter even if we were blood related.
At the ages of Angel 11yo and me 12yo, we planned our entire lives from our future careers, weddings, trips to what we were going to name our children together. And boy did we have some elaborate plans?!!!
When Angel suddenly became ill with what they thought to be Mononucleosis, then later finding out it wasn’t Mononucleosis at all, but it was something called Lupus, our plans changed drastically. One minute Angel and I would be able to dance and hang out all night and then the next minute she would be in pain here and there.
For many years Angel still tried to hang, but we had to balance it with rest as well. Being young myself, I didn’t truly understand the extent of what was happening. More and more things began to change. Our sleepover days even seemed to be cut short. We would still stay on the phone 24/7 though, and I do mean 24/7. We vowed to never miss a beat and we didn’t.
Then Angel started being hospitalized more and more due to different complications of Lupus, POTS (Postural Orthostatic Tachycardia Syndrome,) Adrenal Insufficiency, Blood Clots in her lungs, etc. and then sometimes they couldn’t figure it out. I still didn’t fully understand it myself.
It wasn’t until 2004 that I truly grasped all that she was going through. There was this time where Angel’s mother and Angel had to have two different procedures done at two different hospitals on the same day. Her mother, who is always there and is always her main caregiver then and now, had to miss this one thing. She was devastated, but asked if I could be there in her place because I knew Angel’s medical history. Without question, I was there, but that week everything hit me.
Angel, my dance partner, Angel my roller coaster riding partner could hardly walk to the bathroom. That first night I didn’t sleep. I cried most of the night. Of course I didn’t let Angel see me upset, but it was in those moments it dawned on me that things weren’t going to be the same as we had planned in our secret book.
My eyes were now wide open. I witnessed her struggle to move and crying from pain. It made me so upset that the doctors didn’t do more for her realizing this was the reality of her life. That week changed my whole understanding of Lupus. That week I learned that Lupus isn’t just pain here and there. I learned that Lupus was taking over her life. Lupus had the say of how she felt. She has no control over Lupus at all.
As the years progressed Angel was still trying to push herself to do more and since I truly understood it now, my role had to change so I became like a Momma Bear telling her to sit down. She would still try to do things other people our age were doing. I understood though. Who wants to be sick?! She just wanted to be a normal person without restraints. Reality is, she isn’t.
That reality is a hard pill to swallow and being a caregiver/bestfriend/sister to someone with Lupus has some truly harsh and hard realities. There is never a time when things calm down. Lupus is so challenging because every day is different. One minute she would be okay and the next she gets a headache and at that point, I already know a flare is brewing.
As the years have progressed, Angel has had many medical complications such as her body locking up and needing help to move, anxiety and needing someone to talk her through, etc. I have learned to listen for changes in her breathing patterns while she sleeps or just being able to look at her and tell when she’s about to pass out.
I have tried my best to be that extra person that could help Angel’s mom out so she could rest or take Angel to a Doctor’s visit so she could work. I am just so thankful that I have been in a position to be able to help out.
Remember when I stated that our bond was tight?! Well, our bond is so tight that there are many days I feel her pain and she will say “Sis, I knew you would call!” Now, the first few times it scared me(Lol,) but that just confirms that she is not only my best friend but my sister in spirit.
Angel’s faith has helped her through many painful days, but sometimes we just have to sit and cry together. I always tell her I wish I could take her pain so she could live normally. Of course she comes back just as adamant saying that she would never allow it. She wouldn’t wish it on her worst enemy, if she had one.
Angel is a trooper and I’m always amazed at how she gets through her flares and does it with a smile.
Angel, I love you and I couldn’t be more proud of your journey. You are helping millions who might not have support! As I always say, “I’m always fighting with and for you, my personal Lupus Warrior!”💪🏼💜🦋💜🦋💜 #LupuswillNOTwin #caregiverofsomeonewithLupus #caregiversunite #caregiverlove #Luppiecaregiver
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