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.