Its Adahlia’s umpteenth blood transfusion. She’s 2 years and (almost) 10 months old. We are watching Frozen in our transfusion room. We’re in quarantine because she’s been sick.
It’s been 4 weeks since her last transfusion, when she had a Hb of 6.5 after 5 weeks. In those 5 weeks, I did daily shonishin treatments on her. My focus was the liver, in consideration of the hormonal aspects of DBA and the liver’s role in hormone production as well as its role as considered in the chinese medicine perspective. For the first time in years, her liver enzymes were actually normal, not elevated. I interpret this to mean that the liver was being supported, and not stressed as it normally is by the disorder, the transfusions, and the chelator drug.
I continued treating her for two weeks, then abruptly stopped. This happened for two reasons: first, she started refusing treatment instead of requesting it, and second, because I’ve been so busy treating myself, trying to support my kidney function.
She’s been sick since we returned from Portland. I assume it’s because she caught something on the plane, though I’m sure the vaccine she got a couple days later didn’t help her immune system fight the infection. (I put her on a delayed vaccine schedule so her already overloaded system wouldn’t have too many extra burdens, and with the intention of minimizing her systemic inflammation as much as possible before introducing a bunch more inflammation causing agents. She is behind her peers by several vaccines, but she’ll get them eventually.)
Timing is everything. Everything has a season. The best course of action, when you aren’t sure of what must be done, is to wait and watch. This is the art of Wu Wei – the art of doing nothing. If you practice doing nothing but listening for when it is time to act, when it is time to act, it will be clear. This instinct can sharpen such that you will almost seem psychic. This is the art of gong fu. But really, you’re just being very, very observant.
It had been time for Adahlia to have an MRI awhile ago, but the docs were reluctant because she would have to be sedated.
She hasn’t done well this past month. Besides being sick, she’s been sleeping a lot. Much more than normal. And I noticed that she was showing signs of deficiency in fire, or the heart.
She was transfused at only 8.9 Hb today at 4 weeks. This is good – she could have easily gone another week. But, with my surgery in two days, we wanted her to be feeling well.
It turns out that her ferretin (a marker of inflammation that many hematologists mistakenly use for iron overload) has dropped further, to only 557. This is great, but it doesn’t mean she doesn’t have iron overload.
Because her MRI came back with very different news. Her liver is actually doing ok – the hematologist considered the level of iron overload to be mild to moderate. Her heart, however, he was concerned about. He considered the report on it to be a yellow flag. It wasn’t an emergency, but he thought we should consider steroids with the intent of reducing transfusions, and/or increasing her iron chelator dosage, and/or adding another chelator. He said it warranted watching closely. Upon my inquiry, he said that meant repeating the test in a year.
Personally, when we are talking about heart failure and death, I do not believe that qualifies as a close watch. I asked what a red flag would be. He said that as long as the Echo was normal, and the heart wasn’t compromised in its functionality, then he wasn’t too awfully worried. But then I asked if the Echo was normal and he admitted that he couldn’t remember what it said, but that he’d probably have remembered if it was emergent.
In the medicine I practice, we do not wait until the structure or function is compromised. We do something to prevent the physical loss. So you can see that I wasn’t especially enchanted with his answer.
Especially when I learned that they did not do an analysis of her pancreas, even though I specifically asked them and reminded them, because it can be severely damaged by iron even when the others aren’t, and instead looked at me in surprise, saying they’d never heard of checking the pancreas for damage.
Especially when this morning, when I asked the nurse to run the labs by me, as I do every time before they draw blood, in order to make sure nothing slips through the cracks, she responded with “type and screen.” Thats it. No CBC. No retic. No ferritin. No CMP. Of course, I had to artfully disagree with her so that she wouldn’t feel foolish, so that hospital wouldn’t look like its left hand didn’t know what its right hand was doing.
I cease to wonder at it. It’s just a bit tired, the whole routine. It is like living in a fishtank.
Speaking of tanks, Joe bought me the best pre-surgery present anyone could ever give: a float.
Floating is sensory deprivation in a small, shallow, dark, enclosed tank, partially filled with extremely concentrated salt water. It is so salty that you become buoyant, like a sea otter. And, like a sea otter, you float on your back. But there are no tasty clams, no gulls calling. It is completely dark. Completely silent. It is like a floating sarcophagus.
Psychologists recommend it as a healing practice. Creatives use it to connect to inspiration.
If you’ve ever had a nightmare, and thus know the power of your own mind, it’s a bit terrifying, especially if you have any claustrophobia or hydrophobia.
I had floated once before, before Adahlia was born, but this time was much more intense, probably because these last few years have been so tough. I actually had a series of three small panic attacks, one right after Id managed to calm myself down from the last, where I was convinced that there wasn’t enough air in the closed tank, that I wouldn’t be able to lift the heavy door to get back out, that Id suffocate in the tank and drown. My heart palpitated and fluttered and pounded and thudded; I felt as though I might vomit or faint.
But I managed to stay in the dark water, and slowly, using releasing mantras, I began to unwind the tension held in my body and mind and began to relax. It took a very long time. When I ‘woke up’ to realize I was no longer holding tension or fear, I began affirmations. (Whenever you release something, it is important to follow it with affirmations related to what you’ve released.) By the end of the 90 minutes, I was floating peacefully and joyfully in the dark, smiling and reconnected to a self that I have not embodied so fully in years. I felt powerfully loved by myself, and deeply grateful for my body and life. The beauty of this opportunity was reopened to me, and I felt amazed and honored to exist in it, with so many powerful others who contribute to it. It was so healing that I cried as I drove home, not because I was sad, but because I was so purely happy.
And then, last night, I had a strange segment in a dream during which a wild looking shaman woman recognized and greeted little Adahlia with excitement and respect. She said to me, “She does not come here often!” meaning that Adahlia was a spirit in the higher realm that does not often deign to take human form.
I said, “She has a rare blood disorder….” hoping to get the shaman to help me with clues to treatment.
“Of course she does!” She snapped. She meant that Adahlia did not necessarily belong on earth for a long time.
And so, when all this happened today, perhaps you can see why I was not actually upset.
The truth is that the shaman with red fire in her blue eyes is right.
Earth is only a temporary home.
We can learn a lot here – mostly, if we are wise, about ourselves.
And we have no real knowledge of the purpose of anything.
Today, I wasn’t surprised to learn that Adahlia is halfway on her way to heart failure. That she shouldn’t have this much iron in her heart yet – that it shouldn’t have gotten this bad so quickly; that’s she’s a bit too young; that it doesn’t really make any sense given the rest of the picture.
We can do a lot to be healthy, to love and care for and support those we love, and between all the different medicines we have much to support us, but we control nothing.
Far from disconcerting, I find that fact incredibly peaceful.
Of course, it doesn’t mean I am giving up on Adahlia any more than I’m giving up on myself. It means that my observations were correct, and that her heart is struggling, and I should try to help it.
And so I have. And will.
Add all the religions and spiritualities and spiritual experiences of the world together, and we have only glimpsed fragments of what exists beyond the physical.
(It might be a beautiful mosaic.)
The best we can do is move with the seasons.
To love ourselves and each other through the seasons.
To release our fear and tension and worry and discover deeper levels of what it means to be empty.
And to fill that void with light, and energy, and love.
Until we shine with it.
And fly away home.