Mast Cell Activation Syndrome Diary: The day I stopped to live.

Today I stopped to weep, choked up on silent screams. How can I scream? Any slight rise in my voice, my husband comes running. Are you having another anaphylactic reaction? That’s what trauma does to your loved one. How many EpiPens in the last 10 month? 30, 40? I lost count.

I went in to Jerard while he was working, I could no longer hold down my tears. I sit next to him. Wait, as he finishes an email. He looks at me, water in my eyes. Closes his computer, “what happened,  bad news?” I tell him, I’m sad. I’m overwhelmed with the preparations to get my port placement. So much has to be put in place. At the same time, I am deeply grateful to the doctor who is working so hard to make this possible. I feel undeserving of his kindness. Jerard listens. I could see his heart crying in front of me but his eyes are the dam. He says “Kate, I pray for you everyday.” His eyes ever so gentle.  He says “I don’t know how you do this everyday?” And he listens.
I don’t know anything else. I don’t know how to die, so I live. And it’s what I am doing.

If I break, what do I break to?
My tears are shackled, restrained to shield my kids. This disease is flagrantly intrusive. A hug from my kids is immediately interrupted, “wait a minute what do you have on your hands, did you just eat?” And my son profusely apologizes for putting me in danger, “I’m so sorry mommy, I didn’t mean to you touch.” Concerned he says “are you having a reaction?” But he did mean to touch me, as should any child who wants to embrace his mother. It’s an unspoken ritual of reaffirmation of love & security eloquently designed by our heavenly father. A child’s love is the most pure to be felt because it is uncalculated, unchoregraphed. That’s what we as parents live for; who dares challenge this pattern woven into our blood centuries ago?
Oh but there is one, Mast Cell Activation Syndrome, audacious at best, inconspicuous at its worst.

I have prevented anaphylactic reactions 0% of 100% of the times that I was ready to have them. Did I say ready? You can’t be ready for this, this syndrome does what it wants. The word syndrome has the connotation that this illness is milder than a disease. No, a syndrome is a collection of assault on the body & you don’t know who hit you first. As if everything else in life stops long enough for me to catch my breath. I still stub my toe just like everybody else. I am holding back cursing when it happens. Yes, I will have to pray about that too.

I clear out a space in my kitchen for my medical supplies. As I make meals for my family, meals I can’t even taste, or sometimes smell without breaking out in full anaphylaxis; I reach for the spices. “What do I need?” I reach into the cardboard, my fingers travel the same invisible paths it has in this home for the past 4 years, same mental road map. I land at the same destination that my fingers are familiar with, there it is, “paprika, sage, curry, syringe, flush, needle”, wait a minute. The landscape has changed, “oh yes, I had to make room for the medical supplies”. Affirmative action at work. Sorry we had to take that space from you for the greater good, I promise it’s for you own good.” The assent, negotiations closed. Well I guess I can just boil my pasta with a bag of saline now, since I ran out of salt (excuse me, nurse joke).

Even the most intimate is interrupted; a kiss to my husband but he turns to give me his cheeks, “sorry I just ate” “It’s okay”.
And THIS too? Et toi aussi? My love. My heart is broken. I quickly smile & hide my disappointment because I don’t want him to feel bad. But not quick enough because a stiff air of guilt lays bare as he walks away. And I am left with the impression of his disappointment. I reach to console myself. It’s heavy but not solid so I’m still left with nothing to kiss.

Today, I am sad. I am mourning a loss. This was easier when we were all shut in due to covid. I didn’t feel that different because we  all couldn’t travel or go to the kingdom hall.  But now there are no restrictions. I see others coming & going. I get excited thinking to myself, I want to work on my garden today, I will go to Lowes, but we need a rug too. Ok then Marshall’s too. But wait, my mind hasn’t caught up to my body yet. I can’t go anywhere, I  don’t drive anymore. Well maybe I can double mask, that should take care of the car fumes. Then there is the pollen, fragrance at the store, contaminated door handle, oh but Jerard is working, well I will ask a sister to take me.  No, no Jerard knows what to do if I have an anaphylactic reaction, oh I have to convince him to let me go; my thoughts are broken by  sounds of sirens . And I take a step back right into my place. I shake my head NO, I did my time just like everyone else, now covid restrictions have been lifted, I deserve to do whatever they are doing. By now, my mind has caught up to my body. My body assertively reinforces the rules, “ma’am you have to know your place”. My mind acquiesced.

At a point I have looked into getting a service dog. Perhaps I could have more freedom or it can detect dangerous drops in my heart rate, also when it spikes too. Up & down, up & down. I am sure you have caught a glimpse this. A father throws his child in the air, a hearty laugh fills the air. She trusts her father, he will catch her every time. His eye lock on her, throw, catch, laughter; throw, catch, laughter. My body is like a child thrown, not sure if it will be caught. My autonomic system fails me. I stand up, my brain goes with my body, but my heart sits casually. It missed the signal from my brain to pump. Heart rate drops. A flood of unpleasant symptoms ensues. Dizziness, lightheadedness, nausea, tremors. Now the heart realizes that it has failed me. With the fury of a swarm of locusts, the heart beats harder to compensate. But too hard, heart rate goes up. Jọwọ ọkàn fa fifalẹ diẹ. The oscillator is overdamped, the Q factor low, the pendulum slows, too little oxygen for the body, I’m fading. Jerard is there to catch me. I say to Jerard, you know a service dog would be very helpful in this instance. He says “you don’t need a service dog. I’m here. I am your service man.” We both laugh. But I still secretly want a service dog, I’m afraid the stress will…… Medications cost almost a grand each month, then there is the medical debt from last year. Then there is the house, it’s old, the mold, outdated vents, buy a new house or fix this one, where would I go while we fix this one, how can we afford a new house while still paying for this.. And this, and that, and that and this. I console myself, we couldn’t afford a service dog anyway. And that’s what he does, each visitor has to pass his stringent checkpoint. He apologizes, “I’m sorry, I have to smell you.” They passed. They are allowed to enter my protected space. At times, others are too afraid to enter. It makes me sad..

He’s my force shield, my protector. He has been saving my life since we were kids. Can’t swim, I jump into the deep end of the pool. He’s always had his eyes on me, in many ways than one. I had my eyes on him too, I should have had my eyes on the water; drowning in his presence. Oh no! I am literally drowning. He swiftly jumps in the pool, pulls me out. Hmm body of a track athlete, I think I will just step off the ledge of the pool and “fall” in again. At this point, nearing 12 years of marriage (sorry I couldn’t just say 11 years, I’m too in love, too excited, can’t wait for our anniversary, Mrs Jerard Robert King, yes that’s me!), 24 years of friendship, I suppose it’s only natural for him to continue to save my life.

My tongue burns from attempting to eat, my mouth raw from blisters, my body weak from lack of adequate nutrition, my mind? Well, the psychological toll of facing each meal or knowing I will be skipping several meals because I am too reactive is breaking me. Why do I have to continue to push play on the stereo, but the cassette is jammed? And you say play me a song but I can’t,  I just can’t. 

I am envious of my colleagues with J-tubes. I want one so badly. I don’t want to eat anymore. The physical pain is like no other. And the mental enslavement to the notion I have to eat by mouth is breaking me.

I can’t be human, how can I be? My body is being punished beyond what it is made of! There is MCAS, then Ehlers-Danlos Syndrome (another syndrome, how insulting), Postural Orthostatic Tachycardia Syndrome ( I thought I was done with ‘dromes’), Premenstrual Dysphoric Disorder ( at least it’s not a syndrome), Adenomyosis, Fibromyalgia, Gastroparesis. Please by all means this isn’t a dirge of woe is me. I am indebted to my friends & family who support me mentally, physically, financially at times, & love me unconditionally. This is my last rites to a pain I’m going to lay to rest. I have been holding this in too long. So here, you may pay your respects too.

It’s been almost a year since my condition worsened. I am doing what I know to do best. It’s time to live..

1 thought on “Mast Cell Activation Syndrome Diary: The day I stopped to live.”

Leave a Reply

Scroll to Top
%d bloggers like this: