Emotional stress is my biggest trigger. Not emergencies, mind you – I am good at reacting, administering, directing in an emergency. I mean the type of emotional stress that can only come when someone who loves you wrongs you. I can deal with people I care about minimally treating me poorly without risking anaphylaxis. But when it’s someone very close to me, someone whom I love deeply, it is very dangerous to my health.
I got a colostomy in April of 2013. My doctor expected that to resolve the majority of my systemic symptoms, as the long term bleeding and physical stress that necessitated the surgery were also triggering my mast cells. His aftercare instructions were very clear: don’t lift anything heavy, eat a low residue diet, do not go anywhere strange, stay out of pain and do not get upset. If I could do all these things, he expected my mast cell symptoms to subside considerably.
I had five weeks of no mast cell activation. I lost my swollen, pregnant midsection. The act of sitting, walking, existing, was no longer inherently painful. I had energy. I was getting better.
Six weeks after the surgery, my ex-boyfriend left me abruptly almost four years into our relationship. We tried to work it out. I think it might have been alright, but then we found out we had to move.
We had moved into this apartment a year and a half earlier. I was clear when we looked at the apartment that I didn’t want to move until I bought a house. Moving is dangerous for me. New apartments, with the possibility of hidden mold and environmental triggers, are dangerous for me. I have true IgE allergies to several environmental allergens and exposure to any one of them can cause anaphylaxis.
Our landlord knew this and reassured us repeatedly that we didn’t need a long term lease because he would never make us leave. He lied. When he told us we had to leave, I completely broke down. “This could take years off my life,” I sobbed, dignity lost. “I feel bad about that,” he muttered. We were excellent tenants, he agreed, he just wanted his daughter to live there instead. He didn’t care. They never do.
The next day, I got a bowel obstruction. The mast cell symptoms returned in force, all at once. “I told you not to get upset,” my doctor said, as if I could possibly control any of this. But I understood his point. When you have mast cell disease, the ones you love can truly be your undoing.
I ended my relationship for good in February. I would rather be alone than be with someone who handles my illness so poorly, though this is no comfort when there is no one moving against me at night. I wanted to stay, but I could no longer ignore the fact that the stress of trying to fix this had taken a very serious physical toll on me. It wasn’t worth my life. And my heart was already broken, anyway.
I have been through a lot, all things considered. It has made me stronger, all of it, even the things I wish hadn’t happened. Every time I am grateful for my steel will, for my ability to make hard decisions without hesitation, for my ability to not get upset every time my body fails me in a new way, I have to admit that it was the hard times that made me this way. I can’t imagine surviving any other way. But the wounds – those are real, too.
There are nights when I can’t sleep and start sobbing uncontrollably. I press my hands against my chest, against the hardness of my sorrow. I run my fingers along the edge and it is shaped like a broken heart. It feels like being half awake and reaching for him, before I know where I am and that he will never be there again. There is no physical pain on earth that can compare to the memory of a love that is no longer real.
My mother used to have a seashell in her bathroom. When I was little, she would hold it up to my ear and I could hear the ocean. I feel sorry for that shell now. It remembers the sound of the waves but can never go back. I know what that’s like.
They say you can’t die of a broken heart. Maybe they’re right. But years from now, when they open me up to see what happened, they’ll find glittering shards in my chest and know that they cut me every time I breathed.