After writing about Part 1 of Arthur Frank’s At The Will of the Body here, I was thinking I’d be writing this Part 2 as healthy-ish Alicia and not in-the-thick-of-illness Alicia. Sometimes I think this is somehow “better” though because it challenges me to really believe and stick to what I’m writing, when I’m so very much IN it. Before I turn to my beloved Arthur Frank book, however, I want to mention what’s going on with my ever precarious state of health. Back in June, after months of feeling anemia symptoms and then a few more months of doctors trying to figure it out, I learned that my body, specifically my small intestine, which is healthy but reconfigured, does not absorb iron from food or pills. I wrote about all of that here. It is a kind of iron-deficient anemia that can only be treated with intravenous iron infusions in the hospital, i.e. it doesn’t matter how many steaks or iron pills I ingest as I won’t absorb any of the iron, and therefore I cannot make blood. At best, they thought I would have to get these 4-hour IV infusions 1-2 times a year…but forever.
In August, two months after that first iron infusion, I started getting leg cramps (“charley horses”) frequently. I hadn’t been able to smell anything since around this time too but I’m not sure if that’s related. (Not having a sense of smell for 3 months was strange but I got used to it! ). And I felt like I either had “allergies,” a cold, or sinus issues from late July/early August through October. And then I started feeling the usual anemia symptoms: perpetually fast heart rate (120+ at rest), out of breath after walking short distances, no color in face, cracks at the sides of lips, etc.
When I told people I was anemic or “had anemia,” most said, “does that mean you feel tired all the time?” Well, yeah, but that’s not exactly how I’d define the scope of anemia! Anemia is the most common blood disorder and there are actually more than 400 kinds! There is always an underlying reason for having anemia, which is defined as “a decrease in the number of red blood cells.” This could mean 1 of 3 things: you are not making blood, you are losing blood, or your blood is destroying itself. Or a combination of these. I was often anemic due to gradual but substantial blood loss on account of colitis. My body was still making blood, but it was losing it at the same time. Now, with this new iron-deficient anemia I have, my body just stops making blood because it needs iron to do so. (And I also have internal bleeding). Red blood cells only last for 120 days, so they are naturally and constantly dying off in everyone’s healthy or not healthy bodies, and new ones are being made. Why is blood important? Because the red blood cells, specifically the iron-containing protein called hemoglobin, are responsible for transporting oxygen throughout the body after it hits your lungs and for transporting nutrients, also throughout the body. When there isn’t enough blood, *everything* is affected.
What’s interesting about anemia is that the body is smart in making do with a diminishing supply of blood. The extraneous things seem to be affected first: nails get brittle, ears have ringing sound, legs get cramps, digits and feet get tingly when at rest. But these symptoms, though annoying and/or painful, don’t halt the body’s necessary functions in the beginning stages. “Mild anemia” may not have symptoms at all because the body is compensating without you even knowing it. A few days or several weeks can go by before additional symptoms appear. I start to notice that I have no color in my face, that I get headaches or migraines all the time that don’t respond to over-the-counter meds, I am short of breath when climbing stairs, my heart races. The headaches make sense: there isn’t enough oxygen getting to the brain. Same with the numb or tingly feet and hands: these are far away from the heart, and circulation is getting poorer. The blood vessels in the face don’t have enough blood and therefore my pink cheeks and lips turn pale. And yes, all of it makes me feel unbelievably tired, but it’s not just a sleepy feeling. More like having the flu or as if I am trying to run while in a swimming pool or like my legs are stuck in freshly laid cement.
In October, I had to have a blood transfusion first, followed by an iron infusion, because my hemoglobin was already too low, placing the anemia in the “moderate” range but closer to the severe range than the mild. I didn’t really react to my symptoms (as usual ugh!) until it looked like my lips were turning blue. Which means I made it a whopping 4 months, but probably should have gone for treatment a good couple of weeks to a month earlier. So, 3 months. :/ Only a month later in November I had a follow-up appointment with my hematologist and I was feeling bad again, but I didn’t really think it could be anemia/iron-deficiency already. She yelled at me for not calling a doctor sooner. It turned out that I was having a bout of “pouchitis,” my first one I guess? I was put on antibiotics for 10 days and I felt RIDICULOUSLY better, which then made me think that I had had “pouchitis” for a looooooong time. I had never felt better!!!
Most recently in January, I was nearing the 3.5 month mark since my last hospital treatment, and while I suspected my iron was all used up and hemoglobin was dropping, I got some kind of flu and thus felt awful. So I ignored the anemia symptoms that I could barely distinguish from underneath the guise of the flu and got better enough in time to travel to NYC for work. I guessed that I wasn’t bad enough to skip NYC, and could wait till the following week for my blood work appointment. My hemoglobin turned out to be 9.3 and the 2 days between finding that out and actually getting IV treatment were HARD. I’m supposed to get IV iron as soon as I fall below 11, so suffice it to say, I have not managed to be properly proactive and call when I have symptoms. Why why why NOT??? Okay, At the Will of the Body quote time:
“Being free to wander, hope, and love does not mean denying our vulnerability; rather it means embracing it. We are free only when we no longer require health, however much we prefer it…. Admitting that you may have problems makes you vulnerable, but it is also the only way to get help.”
“But taking pain entirely into my own body, making it too much my own carries the danger of becoming isolated in that body. Isolation is the beginning of incoherence. In writing about the incoherence of pain, one risks becoming incoherent all over again. Language easily goes wrong.”
I think the next quote can relate to many kinds of ongoing maintenance therapy/treatment, but Frank says this in regards to his own chemotherapy treatment:
“You may lose the sense of value in your life; you may fade into the claustrophobia and passivity of treatment and become so obsessed with details of bodily care that your mind shares the numbness of your body.”
These above three quotes are all trying to get at the same issue: how does one admit that they are sick/vulnerable enough to seek and require treatment, completely turning over their body to medical intervention without turning over their mind, which is contained within that body, at the same time? So much of my past health experience has relied on waiting till it’s life-or-death before I seek help, but when I’m already at that juncture, it’s impossible NOT to be utterly consumed by the “details of bodily care.” To live in the moment, THAT moment, is paralyzing, claustrophobic, numbing, awful. I know that when I need iron/blood, that I WILL get better afterwards, but somehow I can’t truly feel that because I just have to BE in and experience the sick/dying moment. It goes both ways: when I’m on the upswing, after treatment, I don’t really think, “Oh but it’s going to end, I’m going to need iron/blood again, I’m going to feel shitty.” I don’t live in the sick/dying mindset when I don’t physically have to. (I can’t quite articulate this as I want to yet…).
There was no fight, only the possibility of change. Making this possibility real involved suffering and struggle, but not fighting.”
Frank talks about the linguistically odd way of saying and thinking that one is “fighting” disease. The disease is part of you, you are essentially fighting yourself then. Is that a good way to think about it? He is not a proponent of this kind of thinking that revolves around fighting battles, losing battles, being a victim, being beat by disease, winning, losing. I think it’s worth considering the language we use in such a matter-of-fact way when talking about disease, and it’s something I want to study more as I go back to school for nursing….
The following quotes are really big ones for me when looking towards the future and trying to balance hope with realism.
“I am not powerful enough to feel guilty for getting sick or proud of getting well. I can only take what happens to me and continue to look for possibilities of how to live.”
“When I become ill again, and someday I will, I hope it will not be the total break in my life, the radical discontinuity, that I experienced before. Health and illness are not so different. In the best moments of my illnesses I have been most whole. In the worst moments of my health I am sick. Where should I live? Health and illness, wellness and sickness perpetually alternate as foreground and background. Each exists only because of the other and can only alternate with its other. There is no rest in either word. In ‘health’ there can only be fear of illness, and in ‘illness’ there is only discontent at not being healthy. In recovery I seek not health but a word that has no opposite, a word that just is, in itself.”
My body is still recovering after my last iron treatment, so I’m still huffing and puffing when I walk, walking slower, heart beating fast. Some symptoms have dissipated like the 24/7 taste/smell of what I can only describe as “metallic hay,” body temperature issues, there is the tiniest bit of pink in my cheeks and lips not created with makeup, bruises are finally fading, eczema hands are healing a little. I’m nearing the end of my nursing school prerequisites and approaching the time (this summer?) when I will start applying to schools. Although I’m sure I’ll still be walking slowly next week, I’m excited to say that I’ll be attending two days of nursing open houses at Johns Hopkins University for their BSN, MSN, and PhD offerings, as I figure out how to put to use everything that has happened to and is happening in my unstable body and mind.