28 DAYS
A few weeks ago, I was counting the seconds until those 28 long-awaited days would arrive. They meant a new step forward, and most importantly for me at the time: "a month without a blood transfusion." I thought my inner child would be proud of my progress, of things going back to how they used to be. The 28 days came, but the expectations I had didn’t. What started as an immense achievement quickly turned into a nightmare. Today, four weeks later, I’m still facing it, and I probably will for a while.
For nearly a year, I focused so much on this goal that I forgot who I was, putting aside my condition. All the life goals I once had disappeared; the only thing that mattered were those 28 days, my health, "thriving" in that regard. But that wasn’t health. I ignored my symptoms, my emotions, I missed the signs. I didn’t even enjoy life just to prove I could be who I once was, even if it had to be by force. I sacrificed myself for an unrealistic goal, and here I am, still sick.
When you’re chronically ill, people on the outside tend to think that because this is our reality, we accept it. But no matter how much you heal or how much you accept it, there will always be a reminder that you’ll never be who you wanted to be. And that’s okay, because that’s the truth we must face, even though it hurts. Now that I’ve expressed it, I ask myself: why keep fighting against it? Living like this is like facing a constant wave of grief, grief that very few people truly understand.
So today, six weeks later, I honor those hateful 28 days. Because life didn’t start or end with them. Life was always in those small moments of joy that, together, made everything worth it. Without sacrificing yourself for unrealistic goals. And life will always be there, in those moments. That’s the peak I’m heading towards now, as I adjust my goals to what life has put in my path, to my reality. I don’t know what acceptance is, because grief will be with me until my last breath, although sometimes it will hurt more than others. – REN OCTOBER 15, 2024












