Cloud of uncertainty

Winter is over. That can be hard to call for sure in Boston and I’m a bit superstitious about saying things like that aloud. But I’m ready to commit to the end of winter. Spring is here.

Springtime in Boston is so pleasant and joyful that I think about it in ridiculous hyperbole. The damp dark tones of thawing earth, the stubbornly cheerful flowers, the warm wind rushing around your face in its hurry. The way the moon shines silver on breaking waves and light creeps along the horizon earlier with each passing day. Walking to work in my low yellow heels and a light sweater instead of boots and the bulk of cold weather. The cool clarity of night air through open windows.

It’s a good thing I love all these things because season changes are rough. It is one of the few aspects of mast cell disease that seems universal. We don’t react well to change and so many things change with seasons. Pollen, foods, behaviors, activities, hobbies, temperature, humidity, obligations. I wake up drenched in sour sweat, my eyes burning when I open them in the morning, already nauseous. My neck and chest are cherry red with an occasional hive for variety. I’m having some word finding issues and some obnoxious but fleeting neurologic symptoms. So yea. It’s lucky I really like spring.

It has been a rough few weeks all the way around, work, masto, MastAttack, feelings. I have never been a person who counts days or months; I mark time by seasons. Last spring, I was recovering at home from lower GI surgery after eight days in the hospital. Two springs ago, I was recovering from a several days long anaphylactic episode that landed me in the hospital for five days. Three springs ago, I was starting a new job with a brand new ostomy.

These past several months have been difficult and sad in a way I can’t really articulate. There is a weariness and a sadness and a joy and an optimism that I wield like a weapon, even when I don’t think it will help. It is a physical stability with emotional trauma and pain and regret and living with my choices. It is not terrible. It is just hard. Some days it is so, so hard.

More and more I realize that the reason I have not really found a new normal as my disease progressed is because there is no normal with this disease. There is no consistency so there can be no lasting adaptation. I no longer have expectations for what I will feel like in any moment that isn’t the one I’m currently occupying.

You don’t adapt to unpredictability. You just try not to be consumed by it.

But I’m still glad it’s spring.

8 Responses

  1. Jennifer McCoy June 5, 2016 / 12:18 am

    Amen! You are not alone with these thoughts, emotions and reactions. Love that last part, which in particular, I need to focus on, “try not to be consumed by it.” You truly are such an inspiration. Thank you for that insight!

  2. Mark June 5, 2016 / 8:09 am

    Don’t be consumed, Lisa. Thanks for giving me some perspective. My wife had been episode free since last July then has just had two in the last month. I figured it was spring, and your data point improved my knowledge. It is hard. It drives me nuts. But I’m glad it’s spring, too.

  3. Kathy June 5, 2016 / 9:50 am

    Wow Lisa,
    You really nailed. I love Spring but it has been especially awful this year with a raging barometer, highest pollen counts in years, and temperatures swings of 30-40 degrees in 24 hours. But I too am glad the dark days of Winter have passed.
    I am learning to accept the unacceptable for most people- what will today be like? Will my basic bodily functions work today or will I be bed bound and tied to my meds and nebulizer praying against my worst fear- the hospital. They know zippity do da about MCAS and an ER trip is usually worse than useless. This weekend has been bad. Not life threatening but just feeling useless and riding the neurotransmitter roller coaster with a nice dose of steroids just for fun. But when I start feeling too sorry for myself, you always remind me of how fortunate I am. It really could be so, so much worse.

    Kathy

  4. Yvonne Branchflower June 5, 2016 / 12:00 pm

    Your beautifully written, bitter-sweet commentary on Spring reminds me that there is a certain amount of mourning that comes with mast cell disease for activities lost. Life on the ninth floor of an urban high-rise is somewhat removed from the effects of Spring, however my balcony flowers are showing off like never before, and hummingbirds are coming to enjoy them. I used to keep a little plaque on my kitchen wall that said “Delightful things are all around, simply waiting to be found.” Even with masto, that remains true. Just as you pointed out. Thanks for this thoughtful diversion.

  5. Deborah Ewing June 5, 2016 / 8:10 pm

    Lisa
    Your message is so beautifully written
    I read your post a loud to my husband we both remarked on how we remember seasons the same way you do.
    I have had two attacks recently and did not tie in the spring equation.
    Thank you for your insights, they help us tremendously

  6. cornelia June 7, 2016 / 11:16 am

    good morning lisa! 1st let me thank you for your incredible site with the plethora of information that is so valuable to us all. i am most grateful to you! for that alone you deserve the highest respect one can give.

    spring, the breaking up of ice and snow, melting and washing away of those patterns that no longer serve us. i heard how time is marked and i too mark them by seasons and events. you words were powerful and poignant.

    may i point out something i learned in my studies of the inca mysteries medicine wheel. we move in cycles, some large some small and all those in between. my mother died on december 5th. the first 4 years after her death i always got a horrific head and chest infection. it consistently interfered with the annual tea tasting that i wanted to work at but was unable to because i was sick! the pattern was cyclic until i was able to fully grieve my loss.

    the other interesting thing i have noticed since being given a name for this dance i do with my body is that spring is the time when MOLDS and POLLENS are in abundance. i had managed these in the past with homeopathic remedies, they have an alcohol base and i can no longer use them. i could not figure out what i had done differently, food, sleep, meds, supplements, and then i heard a report on pollen count. OMG timing the application of what ever we use to moderate symptoms had to be reworked in terms of timing and what kinds and how much.

    once the birch, cottonwoods, oak and soon to come pine are done…..then i can reevaluate. again in the late summer and fall, RAGWEED. all summer grasses and molds.

    thank you again lisa for your unbounded information and your leadership for a community
    have a blessed spring!
    namaste
    cornelia

  7. Michelle Dellene June 8, 2016 / 2:15 pm

    Going from spring to summer has always been the worst for me and now I know why. This disease really is strange and complex and unpredictable and I agree about having no choice but to basically go with it, because you can not make any sort of plans on how to function when it changes from day to day, week to week. At least the weather is nice so I’m getting out in the early mornings and late evening when I know the wasps and bees aren’t out. I’m still struggling with the fact that one sting could be the end at any moment, it’s pretty depressing!

  8. Zopdeep June 8, 2016 / 5:10 pm

    I have been working on this issue with my psychotherapist – how to be the eye im the center of a constantly swirling storm. I’ve been using a mindfulness meditation app and a short yoga routine daily.

    It’s important to have a sense of calmness that you can regularly return to, especially with so much unpredictableness.

    Stop
    Take a deep breath
    Observe your emotions
    Proceed

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