“Yes.” My doctor continued. “This weekend you very likely saved the life of a woman out East.”
“Huh?” (How articulate of me).
My doctor went on to explain that she has a friend who is a doctor, and who has become very interested in my case, and in MCAS. My Doc sends her copies of everything I give her, and they have spoken about it quite a bit. (I’ve altered a few details- the MCAS community is pretty small).
This weekend, the doc in Ontario was at an outdoor event, working in the medical tent. It was VERY hot there, and many people were passing out from heat stroke. A woman came in, and gasped out something as she passed out. My doctor’s friend heard what she said. Many, many co-incidences had to align for this one. She cracked out “I have MCAS” before her throat completely closed, and she passed out. The doctor knew exactly what to do, and apparently the woman was fine.
Those few minutes, as they would have had to figure out that this is NOT heatstroke, and figure out that she was having an allergic reaction, and then get epi into her…. Those minutes make the difference between living and dying, between being ‘fine’ and having brain damage.
In my life, there have been several majorly ‘negative’ events. Probably fewer than the average, but each one was life-changing. I realized a very, very long time ago that I needed those things to happen. These are pivotal moments, that change the direction I am going. They are never easy, but in the long run, worth every heartache. I strongly beleive that things happen for a reason. Life can really suck sometimes, but when I look back, I cannot regret that those things ocurred, because I needed them to teach me something. (Or at least I delude myself into thinking that 🤔).
This is my positive. I have been helping out other MCAS patients in BC, but it is getting more difficult. There are more and more patients aware of MCAS, and I think my effort may be better if I can post ideas and thoughts, and direct my energy to answering the big questions. It will also mean I don’t have to repeat myself as much. I feel a strong obligation to do what I can to help others. I don’t want another person to go for years, not knowing what was going on. I don’t want anybody to suffer the trauma and neglect that our healthcare system has put on me.
My friends and family are naturally concerned for me. They don’t want me to look at the awareness and advocacy side of things to the detriment of my health, or other aspects of my life. It’s a legitimate concern. I have seen people with chronic illnesses have a hard time improving, because their entire life revolves around them being sick. I wanted to make sure that I wasn’t creating that trap for myself, so I actually chatted with my counsellor about it. Her take was to look at my core values. If doing this awareness stuff works alongside my other core values, and doesn’t ignore one value at the expense of the other, it can be a very good thing. I cannot see myself ever returning to ‘work’. I have one or two functional hours a day. I cannot even manage all aspects of daily living independently, let alone meeting the expectations of paid work. Having something that has meaning for my mind to chew on while my body has shut down is so important. It’s absolutely imperative that that thing is positive. Chewing on negative things…it’s a poor plan. We also spoke about setting things up so that if I got better, or worse, the work would still “fit”. I’m hoping like hell that I have people reading mywebsite because of how much better I am by doing x,y,z, and trying to emulate it. If I get sicker, and all provide is a shared story, then that is enough.
In addition to the utter level of insanity that my body is dealing with, I have an enourmous number of gifts to balance it out. I am confident; I grew up in a stable home, with no abuse, with parents who understood that ‘parent’ was a verb, long before most people even thought of that. My mother always believed me, and in me. I’m well educated, both formally and in life. I’ve travelled. We had several family friends who were powerful, influential people, so I don’t get intimidated. I have an incredible husband, kids, sisters and friends. If they didn’t beleive me, they at least knew not to say so. I speak English, and read and write with ease. I can read and actually understand a medical journal article (okay, I can’t read the genetics stuff- I haven’t a clue!). I live in a wealthy nation, with universal health care (as imperfect as it may be; it’s still better than 99% of humanity). These gifts are huge. I believe that my purpose in life is to help others. It has been a fundamental belief since I was a child asking “Why are we here?”. My doing this is beyond an obligation or a desire. It simply has to be. Balance is essential for me- It’s tough when the size of the gifts are balanced by equally ugly negatives, but somehow, in some way, the negatives and positives will balance. For each of the difficulties with my health, I have relationships and family that are beyond amazing. Some days I would prefer that those extremes weren’t quite SO dramatic… but again, it’s not exactly something I can change.
I do not have control over how many people read this, or if it will change anyone’s behaviour. Many people may drop by and think I am a complete loon. Some may vehemently disagree. I’m sure some bozo will get their knickers in a knot over some of the things I say and lash out with nasty comments, and I’ll get all caught up in it just like everyone else does. But it’s okay. I’m not doing this to be nice, or to be liked. I am doing this for one reason. Me. These ideas run around and around in my head, and I get kindof sick of them, to be honest. Writing them down gets them out of there so that I can chew on something new. If the things I say resonate with others, it will be the icing on the cake.