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Loving My Sick Body

by Stefania ErazoSurvivor, Aplastic Anemia and Paroxysmal Nocturnal HemoglobinuriaFebruary 12, 2023View more posts from Stefania Erazo

My disease was of the blood, and although it could not be seen, it left traces on my skin.

After the bone marrow transplant, my skin turned to paper. It is very sensitive to everything. It reacts with outbreaks of all kinds—it constantly peels, is depigmented, and has many scars.

When I was sick looking at myself in the mirror I felt so lost. My eyes were lifeless, and my dark circles were the darkest gray. I looked at those petechiae invading me as a reminder that I had no platelets and had to rest completely even though I was under 30 years old. My skin tone was greenish, yellow, and gray. I had no shred of sanity. My appearance only projected how I felt.

My muscles were weak and unable to function properly. My legs would bend, but they gave me cramps and the simplest things like going from my bed to the bathroom were impossible. It has always been difficult for me to gain weight; however, with the disease, I finally managed it, and I gained eight kilos! Ironically that made me very happy; it was the achievement that I had wanted all my life, to have a more “normal” body. But what was the cost?

Now that I’m healthy, I see that I wasn’t fat—I was swollen! I had brutal fluid retention that reminded me how deficient my kidneys were, and a swollen abdomen that showed the accumulations of iron overload.

However, after the transplant, I lost ten kilos. It depressed me to see my bones. I had no muscle at all, and the blood pressure monitor wrapped around my arm three times, even though It was meant for children. All my clothes were huge on me, and my bones showed. It was exasperating not being able to recover the weight. Seeing myself like this made me feel sicker, even though I felt better than in many years. It has been a frustrating battle between forcing myself to eat more and exercise less (I love to exercise). Little by little I gained almost three kilos in one year, but I still see my bones that remind me of everything I lived through.

That wasn’t my body, but the one I have now isn’t either. I’m still rediscovering who I am. I no longer identify myself with my clothes or my decorations. I don’t know the person I see in the mirror. I am desperate to change. Some simple objects give me PTSD. There are clothes that I say, “I used this in such a medical crisis.” They still have blood stains that will never be removed from the fabric or from my mind.

Another thing I’m experiencing is menopause, which leaves me with immense body dryness. Also, my intimacy is losing its shape. I have no sexuality and I don’t want to have it either. That 32-year-old body I’m supposed to have, I really don’t feel it.

I remember when I was in a wheelchair, I felt happy because it helped me not to have to work so hard. However, now I am faced with having to walk. Something that seems so routine and habitual but that still seems complex to me, although it gets easier every day. I still see myself drowning on the slopes and asking for help to climb stairs.

I look at old photos of myself, and I don’t understand how the person I see was so happy. She was at her best and she didn’t know it. She didn’t quite understand how lucky she was since none of her fears were as great as the nightmare she had to live through.

My mind cannot be seen, but I experience chemo brain. Every day I experience distractibility, memory problems, and slow processing speed, among other things. I try to work but my mind doesn’t help me. I tell myself my mind works and does its best, but even with neurorehabilitation, my brain will never be the same again.

When we get sick, we get angry with our bodies. We feel that it “failed” us, even more so when, like me, we have been athletes who ate well. We feel betrayed, like what we care so much about and hoped would work well, didn’t. We look at friends our age who seem perfect—their bodies have not made them angry.

We begin to speak with anger, resentment, frustration, and impotence, addressing our bodies from those emotions. Everything seems dark and we are unable to say, “I love you body, because you are tolerating all this.” Apologizing, reconciling, and resisting pointing fingers is a long way away, but one day I will get there.

This is the disease—it arrives, invades you, shakes you, and changes you inside and out. You never return to who you were, but I have faith that I am on my way to falling in love with myself. Now I love my body more because it survived death and allows me to continue serving others.

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