Reframing Suffering

It is a rainy, autumnal day here, and I like it.  It’s conducive to contemplation.

I fear sounding like a meme here, but I woke up contemplating gratitude.  I know, I know.  It’s practically a cliché, but I don’t think it should be.  Gratitude is a big deal.

I’ll begin with yesterday.

I have a mast cell disorder.  Don’t be surprised if you don’t know what that is.  Most doctors don’t know what that is unless they are allergists out of the Mayo Clinic or Boston or immunologists.  It’s not a new blood disorder.  It’s just a newly discovered and newly named blood disorder.  Would it surprise you to know that celiac disease is mast cell mediated? Endometriosis is mast cell mediated.  Chronic migraine disease can be mast cell mediated.  Ehlers-Danlos Syndrome is related to disordered mast cells.  The list goes on and on.  Chronic anaphylaxis is definitely related to disordered mast cells, and that’s my most immediate problem.  The wind can change direction, and I’ll experience an anaphylactic reaction.  For no good reason.  I didn’t even know that was possible until last June when I saw an allergist after having taken yet another trip by ambulance to the ER for a stupid allergic reaction.  I thought I was just a really allergic person.  My list of food allergies is long and grows even longer every year–or every month now.  Foods I’ve eaten my whole life I suddenly become deadly allergic to without warning.  It is a very stressful way to live–not knowing if I might potentially die that day.  My kids are fearful.  My close friends are worried.  I just have to live with a bit of a Wild West attitude all the time–feeling invincible.  It’s the only way to survive severe anaphylaxis–you have to relax into it and believe that you are immortal.  For some reason, it helps me stay calm and collected in the face of either my blood pressure bottoming out or my blood pressure hitting the ceiling after the epinephrine injection.

What is this about? Why does this matter?

Few people understand what this is like.  Parents of kids with allergies like this get it.  A parent with a child who will die in ten minutes after eating a peanut? Oh yeah, they understand because that’s me with a walnut or avocado or banana or kiwi or chestnut or buckwheat or peach…or…or…

You can hear the quiet desperation mixed with angry frustration in their voice when they say, “No one gets it! No one understands that my child will literally die if s/he is exposed to ________!” No.  It’s hard to comprehend death by food.  Furthermore, every reaction can be potentially worse than the last leaving you with less time to get help the next time.  This is true for me now.  Two weeks ago as I sat in the ER, a doctor asked me if I’d ever been intubated and suggested that I’d be staying overnight.  Ode to joy.  What a thrill.

It’s in moments like those that you really want to feel understood because you don’t want to feel afraid.  And, honestly, you don’t want to die feeling alone.  That compounds the fear.  You really want someone else to help you carry that burden.  Dying isn’t on my agenda or, at least, being taken out by a tree nut, but pragmatism suggests that you plan for it in this case.

And, as with most of our life experiences, few people truly understand it, or, rather, most people are too caught up in their personal narratives to step outside of them and into ours.  This is my general observation about the flow of life.  So, when you really need support and validation, you can’t find it because the weight of your life–even if it’s crushing you–is simply inconsequential to those around you.  Others can’t imagine your story.  It doesn’t hook into theirs.  Or, other people think that what you are experiencing is very similar to their experiences when, in fact, they are world’s apart.  Consequently, your experiences are minimized and dismissed leading to feelings of alienation and ontological isolation.

What is a relatable example of this?

I had the privilege of being in California a few weeks ago and meeting new people.  We all dined out together.  This really should be my order:


I am now the high maintenance customer which I hate: “What kind of flour is in your gluten-free bread? Are you using buckwheat? Are there walnuts in that salad? Walnut oil in the dressing? Is there honeydew melon in your fresh fruit salad or kiwi or peaches? Hell, I’ll just have coffee.”

One of the women in our group immediately asked me about my gluten-free diet and why I was asking about the flours in the gluten-free bagels.  I explained that I had allergies.  I have to ask.  It’s important.  “Oh, I’m so sensitive, too.  I get headaches if I eat certain foods and my skin breaks out from something I eat.  Dairy, I think.  So, I try to avoid it, but sometimes I eat ice cream.  I totally get it.”

No.  That isn’t it at all.  I’ll die.  She will live with a bad complexion and a headache.  She is trying to make a connection which is very good, but her attempt and over-identification minimizes the reality of my situation, but, admirably, she was trying.  Nonetheless, one feels something weirdly frustrating set in with an interaction like this.

So, what about this gratitude?

Yesterday, I went to the hospital’s infusion center for immunotherapy. One of my friends went with me, and it was actually a good time.  It was a good time because she was there.  We chatted and joked around for two hours while the nurses observed me.  The drug I was receiving has the potential to turn my immune system around and prevent anaphylaxis! That would be a miracle for me.  I could literally get my life back.  The drug causes anaphylaxis in about 12% of patients who receive it which makes me a high-risk patient.

I was really grateful for her company.  She went with me to my subsequent doctor’s appointment, and then we went out for lunch.  It was a really pleasant day.  In my mind, she stepped into my life and experienced it with me.  The double injections, the touch-and-go first half-hour in which no one was sure if it was side effects or anaphylaxis.  It was just shared experiences.  She showed up.

And, the conclusion that I’ve come to in all this is that showing up for other people is the fastest way to step out of your own overwhelming narrative.  It gives you a break from yourself, your crazymaking thoughts about yourself, your problems, your anxiety about your future and what might or might not happen, and it restores perspective.  When I step out of my own swirling maelstrom of pain and stress and step into someone else’s personal pain I experience a huge shift in perspective.  It is in this that I often find my own strength again because I get to exercise my strength and sufficiency.  How often do we feel sufficient and adequate in our own lives? Conversely, how often do we feel insufficient and deficient?

When we connect our narrative to someone else’s we recharge our personal sense of sufficiency because we get to feel successful in places that we have often overlooked and this leads to gratitude.  Here are some suggestions.  Not all may apply to you:

  • “I’m not housebound and on disability.  I am healthier than I realized.”
  • “I have a stable job and am healthy enough to work.  This is a good thing.”
  • “My children are all healthy.  We are not reliant on social services for help, and neither I (nor my partner– if you have one) has had to quit working to stay home and manage care.  This is a blessing.”
  • “My partner loves me and does not abuse me.  I have a loving relationship.  I feel loved and supported.  I am grateful for this.”
  • “My home has not been affected or destroyed by drastic weather events.  I have shelter, electricity, access to potable water, and food.  I have not lost everything.  Perhaps I ought to connect to organizations serving devastated populations.”
  • “I have the resiliency to overcome victimization and access to support organizations that will help me continue to do this.  I know people who do not.  I am grateful for this.”
  • “My home is warm when it is cold outside and cool when it is hot.  I have a bed to sleep in.  I have food to eat.  I received an adequate education and am literate and capable of finding employment.  This is amazing considering that in some countries the literacy rate is around 27%.”
  • “Where I am ill, there is potential for me to become well.  Where I am alone, there is potential for me to connect.  Where I am ignorant, there is potential for me to learn.  This is worth a lot.”
  • “I am not living in a war-torn country.  Others are.  Perhaps I can express my gratitude for this by donating money in whatever sum to organizations that support refugees and the victims of ethnic cleansing and war.”

I go through this list when I feel overwhelmed and misunderstood.  Sometimes I feel really overwhelmed particularly after I’ve been loaded up with epinephrine, IV steroids, multiple doses of multiple types of antihistamines, and antiemetics followed up with extra doses of anticonvulsants.  No one has an easy life.  We all fight to survive something, but I find that gratitude lubricates the engine so to speak.

There will always be people who minimize our experiences most often unknowingly.  We will feel tempted to feel alone or belittled.  Or, we can sink into a softer place.  A kinder place.  I get to come home to my own space and comfy bed when I leave the ER.  That’s something, isn’t it? Consider this:

“In order to be happy we must first possess inner contentment; and inner contentment doesn’t come from having all we want; but rather from wanting and being grateful for all we have.”  The Dalai Lama

For some, the first reaction might be, “How am I supposed to be grateful for losing my house to a hurricane?” or, in my case, “How am I supposed to be grateful for a blood disorder?” That seems legitimate.

Well, we are not grateful for suffering, but we are grateful for what is produced in us when we engage in our lives intentionally.

“Our enemies provide us with the precious opportunity to practice patience and love.  We should have gratitude toward them.” The Dalai Lama

In some cases, people present to us as enemies, but sometimes circumstances and events are enemies.  Our stance towards them will determine how we emerge out of that stage of our lives.  If we are judgmental, entitled, easily offended, and vindictive, ruthless in our demands about how we think they ought to behave towards us, then we are no different.  We are simply the flip side of the coin.  If we are intentional about how we engage with other people, refusing to let their behavior dictate our responses, then we have the opportunity to practice being the kind of people we want to see in the world–good, kind, compassionate, and effective.  Circumstances are very similar.  We cannot change people.  Oftentimes, we cannot change circumstances either, but sometimes when we decide to change how we engage with both people and circumstances, both change.

So it is in this that we practice gratitude.  We are grateful because every moment of our days provides us with opportunities to become better.  To upgrade.  We can self-determine in this way.  This is the one area in life where we truly get to have all the control, and that is a strange thought to me.  To exercise that kind of intention in yourself and in your surroundings changes everything.  And this is what the previous two quotes mean.  We experience gratitude because it is possible to be changed, for the better, by everything that comes our way.  And, I don’t say this flippantly.  I’ve had some extraordinarily bad experiences from experiencing human trafficking to domestic violence.  I would never want to do either again, but I can experience gratitude for the sense of empathy and justice I have today because of both experiences.  I have a very wide resiliency spectrum because of past experiences, and, in some ways, this has made me the perfect candidate for a mast cell disorder.  Almost dying once a month doesn’t stress me out too much.  I bounce back very quickly emotionally.  Physically? That takes longer.

So, I leave you with this.  Gratitude.  Not for suffering.  But, for the opportunity to show up in your own life and in the lives of other people with intention.  The intention to be or do what?

That, dear reader, is entirely up to you.

My last word? Whatever it is…be sure to think big.


10 Comments on “Reframing Suffering

  1. “……..refusing to let their behavior dictate our responses…….”
    “…..I can experience gratitude for the sense of empathy and justice…….”

    Oh how I love the above phrases in your article. I have just a story…
    Last weekend my husband started to pack his things to leave, he signed 12 month lease nearby almost 5 minute walk from our house. Then out of a blue he is angry, he started to say “you sucked the life out of me”, “Now I am old” (mind you he 33 and I am 34), he was talking about a lady that got away—apparently there is this “friend” of his from work she just recently started to see someone and he put the blame on me that I should have let him go sooner that he would have chance with her. Bloody hell. I know right?
    “……..refusing to let their behavior dictate our responses…….”
    Instead of getting angry, I kept helping packing some of the kitchenette for him and upon finishing I told him it is packed. He was waiting some kind rage, emotional sh*t flying around but this?? Very unchartered for him.. THEN it hit me!!!!!! My emotional outburst, wailing serve purpose for him, he love his suppressed rage projected in a living, breathing object, yesssss that feels so right place for him, Oh MY, Oh MY….Oh yeah all his lifetime anger can be animated by me in the form wailing, kicking, screaming, crying for help, for attention, demanding better treatment. Not this time baby!! he didn’t got that, he threw the ultimate offense but I didn’t let him dictate the kind of person I wanted to be.
    Finally he said “Why are you nice?”
    “Because you are hurting, I feel sorry for you. You are grieving it is the end of an era, this is nine years of your life”
    He posed as if he finally understood what is happening to him. He had difficult childhood so his emotion don’t have proper pathway, he usually overwhelmed by emotion and don’t know what is happening to him so usually comes out as anger.
    Then we hugged.
    Next day I started to act out, I was also grieving so I started to project my anger, I was ready to lash out and be offensive—usually this will lead to a full blown fight but this time he came to me and hold my arm and said “Hey, hey it is ok, you are just sad because I am leaving in few days” Oh my God, is that what it feels like to be understood???
    This is what I wrote on my diary after the incident
    “We all want to be understood like an infant, our motivation and intentions want to it be understood, what is missing is in order to be understood, one need to understand. In order to be embraced, one need to embrace, to be forgiven, need to forgive; to be free, need to set free”
    Yesterday my son and I went to visit him in his apartment, after I came home this is what I wrote on my diary
    “Today I went his apartment, I felt his sadness, I knew it has sunk yet for him but I felt it on his behalf. I felt sorry for him, his is imprisoned in his mind to extent to live in such sad apartment–leaving his wife and son? I understood that he felt he has no choice, I worried about the state of his mind”
    “…..I can experience gratitude for the sense of empathy and justice…….”
    Ok I used to be purist.. Judging people who abandoned their marriage and who let their kids brought up without both parents. Now my husband has left thereby I joined the single mom group which I used to dread. But the experience made me compassionate to those single moms struggling. The biblical phrase “judge not lest ye be judged” is happening to me. I am so glad for the experience and to be able to feel compassion and feel empathy for the suffering of others.

    “There is a crack in everything that is how the light gets in” Leonard Cohen

    • Love the Cohen quote.

      Wow…if I compared this comment to your first comment? It could be written by a different person. You are in a different space inside yourself. Something shifted. How did you accomplish this? These kinds of shifts are often what people are trying to achieve but don’t, and then they stall out and feel as if they are drowning in hopelessness.

      I feel proud of you in a human-to-human way. Keep going! MJ

      • Thanks MJ,

        The following points are what helped me shift a bit. At the moment I am engaging my left brain to pin point the factors that helped but I know I didn’t contemplate my self out–it isn’t the job of the left brain entirely so I might struggle to capture the whole

        1-My right brain understanding what insanity means that doing the same thing over and over again and expecting different result. Understanding this fact both emotionally and intellectually helped.

        2- Big part helped was what we discussed in previous threads that accounting the whole truth-not chipping the truth to fit events. Owning my truth.

        3-Knowing the difference between being mistreated and badly done and being a victim. When I recount my stories the things gone wrong, mistreatment of others, I noticed I tell it with victim hood mentality, even the tone in my voice changes and honestly I didn’t know there was a difference between them. So now I can tell the whole truth and I don’t need to be a victim. Or when I try to pull my self out from being a victim, I had to alter the truth and the events–and I think that created dissonance between right and left brain. I can own my truth and my reality and I can have sense of humor about it or I can only own half the truth and I can be a victim. I choose the first.

        4-I made an effort to stop applying the intellect to induce desired emotion. I used to apply my intellect to not to be in touch of what is happening, not to let emotion overwhelm me. Now when I feel sad, I let my self be sad—but only for 24 hours. After 24 hours things need to change because I shouldn’t let that to be my whole reality, so I actively try to do something. It is cyclic so once a week or a month I might need to feel sad then I try to have a room for that; allowing time to grieve helped.

        5-I used to pray to God to fix my marriage and I understand now that my prayer was similar to praying the out come of a single dice to be seven–knowing that the out come can only be up to six. How can God help me while playing with single dice to have an outcome of seven? I need to change the game, I need to get two dice to get an outcome of seven. Similarly with the same frame of mind and reality, there is nothing to be done.

        6- Understanding that there are multitude of realities and I don’t need to save or hung on to a sad reality. I think what difficult childhood does to a brain is to hung on to unhappy reality because it could have been worse out there. I think understanding there are multitude of reality I can create for my self even within the framework of my current relationship was crucial.

        7-I used to worry about not be able to create the best environment for my son i.e having both parents but understanding now that I am not God, I can’t create best environment for him but I will do my best to get him the best condition. Changing the toxic relationship with his dad is the second best option.

        8-Redefing my goal–all I wanted in this world was a family, but now all I want is to heal. Often people who mistreat us play a big part in the healing process not because they provide the healing but understanding them and forgive them is huge part of it. Knowledge is the key in understanding their predicament, “…forgive them, for they do not know what they are doing..” Forgiveness without understanding the whole truth is empty and I think understanding my husband’s world helped to forgive and move on.

    • Well done you! Because you refused to follow the same path as previously at this devastating time, both you and your husband GREW! This shows that if we change behaviours, we choose a different outcome! Fabulous! I wish you both well 😊

  2. I have a mild autoimmune condition–what has helped me is the following(I just thought to share here how I am managing my condition, it may not be applicable for others)
    1- 16 hours fasting a day usually I have my meals between10am to 6 pm
    2-Upon waking up I do oil pulling- to get rid of toxins
    3-Then I will have my morning tea with coconut oil (no diary, no milk)
    4-I have my morning water with a tea spoon of apple cider vinegar
    5-No gluten, no diary
    6-ideally no sugar is best–but I have my chocolate sometimes.
    7-Garlic—raw at least once a day at night
    8-I make fermented teff flour pancakes
    9-And recently I am having Diatomaceous earth
    10- Mostly I eat what is right for my blood type which is O so more protein, fish, red grass fed meat.

    • We have very similar lifestyle/diet habits. I’m type A which worked out well as I’m a vegetarian and dairy-free. I’m gluten free, too (celiac disease). I have a low-cal diet (reduces inflammation), and when I’m really on my game I do not eat sugar. When I do, I am ill. The water and vinegar is such a good idea! Alkalizing the body! I need to do this. It would be the same with lemon juice. If you have a mast cell disorder, then do lemon juice as fermented foods *which I love* increase histamine due to their high histamine levels, and mast cell patients can’t tolerate high histamine foods.

      Do you find that following this lifestyle/diet plan has affected your immune health for the better? Conversely, should you “fall of the diet wagon” do you feel it?

      • I have rheumatoid arthritis—it is the immune system attacking the joints, it can be very disabling in the long run. The medication offered for the treatment have bad rap. While I am appreciative of western medicine, I am looking for alternative solution in this instance. So following strict diet does help a lot.
        But for me I can eat most food it doesn’t affect me right away I think it affects me in cumulative way. I can have diary but if I have diary for a week I will feel the effect. But if I have milk once a blue it is fine.
        I am doing research on my condition what I found mostly the issue is related to Hormonal balance, gut health and tooth/gum health. So with my diet I try to take food that keeps my hormone, gut in optimal health.

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