So, unless you have been living with your head in the sand, I am sure that you have seen at least one ice bucket for ALS video. If somehow you missed this, the ALS foundation has found a way to make the absolutely stupid viral challenges of Facebook, Instragram, Twitter, and YouTube into something positive and productive. Good for them! I really didn’t want to watch another one of my students show me a video where he or she nearly died inhaling cinnamon for no purpose beyond chlorinating the gene pool.
When the challenge first came up and went viral, I had my doubts, and to be fair, my husband chose to donate since I went with the awareness route. But, I chose to do the ice bucket for an important reason– I can empathize.
I have written blogs in the past about having Lupus, Sjogren’s, and Fibromyalgia. It sucks. But one of the worst feelings in the world is to have an illness that people do not understand; often, even the people closest to you are left confused, scared, and wondering if there would be a day where you are no longer you anymore.
So I want to step back in time about the 2 years and eight months ago, when, a few days before Christmas, my husband appeared from the bedroom as I had just swallowed my morning medication– 4 pills– and followed it with my traditional first cup of coffee. At the time, I was feeling pretty amazing. 9 pills a day can do that to you. A beautiful cocktail of prednisone, Lyrica, Savella, Celebrex, Plaquenil that made me feel like I was human most days. And he asked me a question that changed everything– Was I satisfied if this was all we ever were?
The answer shocked even me– No, I wasn’t. And so we began a journey that unfortunately had to start with me getting off almost all my medications. Each time a dose was dropped or a pill taken away the pain came back more. Starting with tapering Savella, the fatigue crept back in, amplified even more and joined in by aching body parts as the Lyrica was taken out, followed by excruciating joint pain as the Celebrex was the next to go. Finally, I dropped the Plaquenil which was a choice I had to make to feel comfortable becoming pregnant. I hid it, as best I could, and sometimes no one knew, and other times everyone did. I couldn’t always hide the noticeable limp or shuffle that comes with the joint pain. I had planned that this would be a 10 month process once I was off the meds. I would clearly become pregnant IMMEDIATELY because that is how it works because I am an idiot and thought that is how it worked for everyone. I also had failed to prepare for the idea of breastfeeding sans medication since you can’t take those drugs while nursing either.
I am sitting here now, two years and eight months after that original and fateful question was asked. The most profound question ever asked of me even more than “Will you marry me?” And my nearly sixth month old daughter is sound asleep in her crib. Her belly is full of sweet potato and formula, (hopefully, her diaper is not currently equally as full) and sitting next to to me on the counter is my trusted pill case (the night time one has 5 pills). I have had to make a terrible choice and surrender breastfeeding to go back on these meds so that I can be the mother my daughter deserves. I realized that this choice had to be made the day that I realized I could no longer pick her up in her infant carrier because the pain in my hands was too intense.
So what does all this have to do with a bucket of ice so lovingly dumped over my head? ALS is not a common illness, but it is a debilitating, and ultimately, lethal one. A friend recently commented on my Facebook that the fact other people suffer does not diminish your own suffering, and I agree, but at the same time I believe in perspective. My husband worries all too often that Lupus will cause my untimely end. Probably not. Yes. It is painful. No. It won’t kill me. ALS is painful emotionally, physically, psychologically, and ultimately, it is a disease that takes a life but not before it robs one of his or her life.
Sometimes the most painful part of Lupus is that people do not understand it. Questions range from, “That is acquired immune disease? So it’s like AIDS, right?” — Uhm, no, AUTOIMMUNE disease and it is the exact opposite of AIDS– to “Wow, I am surprised you could have a child.” What?!?
So I took an ice bucket over the head for ALS. Out of solidarity. Out of the hope that maybe they won’t have to wait 50 years like the Lupus community for a new drug. Out of the hope that maybe one conversation about it won’t start with “so what is that exactly?”
Maybe the Lupus community will start their own viral trend… probably not. But if we do, I will participate as long as it isn’t the damn cinnamon.
And Jesus went forth, and saw a great multitude, and was moved with compassion toward them, and he healed their sick. Mathew 14:14
Take an ice bucket, make a donation, read an article, be aware– but show compassion to all those around you because too many times, we do not know what suffering affects those nearest us.
Faith, Friends, and Flipflops 