It seems in the last post, and in this post, I am trying to reorient myself to reality.
As always, when I spend a great deal of time dealing with issues far from the cocoon of safety Attila and I call home, disorientation can develop. The summer has been eventful and stressful, with the arrival of preemie Grandbabies (who survived nicely and are now thriving), a few stressful family interactions that were happily resolved, and the sudden loss of my brother.
Today I am thinking once again about the impact that anaphylaxis has had on my life. My thoughts are triggered by an article in a magazine that focuses on young people with allergies and anaphylaxis. I keep hoping to see something of real value in the missives I get from them, but nothing so far has addressed the issues that dominate my experiences.
Most of the supportive focus on anaphylaxis, that I have been able to find, has centred around children, particularly children allergic to peanuts. Frightened parents formed lobby groups, and organizations sprang up to support their efforts, research programs were created.
From time to time over the many years I have had my allergy, I have sought support from organizations. Unfortunately my particular allergy is relatively rare, and many people died during their first episode, there aren’t many of us around, at least in my age cohort, not enough to form a lobby group. When I approached allergy organizations for support, I was instead asked to volunteer to support them, I suppose because I was an adult and most of the adults they interact with are the parents of children afflicted with anaphylaxis. At the time, these experiences were bitterly upsetting, I asked for support because I needed it.
My point has always been that I am living the life that the allergic children will eventually grow up to experience. The parents, and the organizations that developed to support them, failed to recognize the opportunity to explore and support people dealing with anaphylaxis in their adult years. The only thing the contacted organizations thought I was good for was stuffing envelopes as a volunteer, or donating money to them. I always felt the parents who dominated the politic of the support organizations were short sighted.
“I was lucky to grow up with a strong parental support system that allowed me to go about my childhood virtually worry free – mainly because my mom worried enough for the both of us. She even made sure that I met with the campus dietitian at Tufts University when I started college to talk about food on campus, so that I could feel safe when eating in dining halls.
Despite all of (or possibly because of) what my mom has done for me, I have been disturbingly careless when it comes to my allergies.”
Allergic Living
I can tell this fellow’s Mom that it isn’t going to get any easier for her son. The general reaction to the restrictions of anaphylaxis are rather hostile. This hostility is something the parents of children with anaphylaxis deal with, and has been demonstrated by rabidly angry parents who could not send peanut butter to school with their children, because it could kill some of the other children. Adults however, are on their own when it comes to dealing with the restrictions of and reactions to anaphylaxis. At the positive end of the social reality, there are those who care deeply and make incredible efforts to ensure safety and inclusion in meals and events. Social life goes rapidly downhill from that point on.
The fear of killing you really affects decent people. Simple things become land mines of social tension. Say a visiting salesman at the office brings in a box of donuts as a treat for the staff, he notices that you don’t take one, he urges you to go ahead, then feels bad because you can’t eat any of them, and the rest of the staff feel bad eating them in front of you. This is not a relaxed situation, nor is it any fun for anyone. If you have anaphylaxis EVERY situation that involves food and/or beverages in a social setting is tainted. New situations are particularly difficult in this way, some situations improve dramatically over time as people become accustomed to the condition. Being “special” in this way, receiving this kind of attention, at every turn, even when it is warm and positive, is wearisome. I have been doing it for decades, as an adult.
My nuclear family offer Attila and I some opportunity to enjoy a warm and safe environment for social interaction. They have given up inviting us to many of the family events they enjoy, such as touring wineries, because we always decline. Social events that focus on substances that can end my life are not enjoyable, not to mention the possibility of coming into contact with my allergen in an environment where it is in active use. I don’t drink alcohol at venues where foods or beverages may contain my allergen, because I might relax, I might nibble on some tempting little delight, and then I might ruin the party, I might die. Attila and I strive to find events where the price does not include dangerous (all) food or beverages, and the focus is on a shared interest such as live music. The best events for us are those where we can bring our own food and beverage, and other’s do the same; at those events there is no social tension generated by my anaphylaxis, and I can attain that rare experience of going with the flow of the human activity around me. I remember that relaxed and flowing experience, my allergy was suddenly acquired at the age of 33, when I had my first bout with anaphylactic shock.
I wish the young man in the article good luck, if he seeks independence he is going to find out just how much work his Mom has put into protecting him from the responsibility of surviving.
There is hidden depth to the statement, “Attila eats with me.”
Worldly Distractions
Weather
16°C
Date: 9:00 AM EDT Friday 2 September 2016
Condition: Mainly Sunny
Pressure: 102.3 kPa
Tendency: rising
Visibility: 24 km
Temperature: 16.2°C
Dewpoint: 10.4°C
Humidity: 68%
Wind: NNE 21 km/h
Quote
“Where people wish to attach, they should always be ignorant. To come with a well−informed mind is to come with an inability of administering to the vanity of others, which a sensible person would always wish to avoid.”
Jane Austen
1775-1817
“Always be ready to speak your mind and a base man will avoid you.”
William Blake
1757 – 1827
Maggie, if you ever come south, I promise to offer you only free-range, local meat and local produce which has been washed and peeled, just in case, and bread I’ve made myself. We mostly (but not exclusively) eat that way anyway, so it’s easy.
My husband and I are both migraineurs, so we know somewhat about that ingredient issue.
I have been insulated in these issues, especially involving children as I’ve never had any. I’ve never had to deal with schools and things that affect the kiddies. So, kids can’t even bring a peanut butter sandwich to school any more? I guess I inherently knew this, knowing how dangerous peanut products are these days, but wow… I don’t know how I would have gotten thru my childhood without peanut butter! It’s basically all we EVER ate for lunch. I used to be so envious at the kids who brought something fancy like tuna or sliced meats and had desserts like naughty things such as chips and cookies. We had carrot and celery sticks! And that soggy, white breaded peanut butter and jelly sandwich (not chunky either… only “smooth” for us). Funny thing is that I married a guy who eats peanut butter & jelly sandwiches but on homemade 10 grain bread, and with pieces of fresh fruit for dessert every single day of his life. I can’t imagine a world without peanut butter!
Wendy, thanks! Migraines are something I don’t have to deal with, I don’t envy you that, from what I understand they are a force to be reckoned with. I had a migraine once that caused me to lose my eyesight, everything went kaleidescope, but no pain, and it only happened once. Can’t imagine dealing with it on a regular basis.
It is hard to imagine Bex, a world without peanut butter, but there it is, a killer. Many schools ban peanut butter and products containing peanut butter, after so many children died. Although I can’t imagine not having peanut butter in my life, it is a staple around here, I would gladly give it up to save a life. I don’t think Paul need worry about it though, he isn’t running a public facility for children on his boat!
Allergies of this severity are relatively new as far as I know, and there doesn’t seem to be any knowledge about why they are so common now, and some of them so severe. No Allergist I have consulted has had an explanation as to why I experienced a sudden servere onset of anaphylaxis, I had no allergies at all before the first event, and didn’t know what was happening to me. At the time I knew of others who experienced a sudden allergy to my allergen, and they died at restaurants, which are very dangerous places for people with anaphylaxis. There are no second chances with anaphylaxis.
How terrible, Maggie, to live with such a life-threatening allergy to something that is so mundane, so everywhere in our society: peanut butter. You do it well and wisely, of course, but it is still frightening; a risk every time you turn around, in many ways. I admire your fortitude and courage.
Speaking of peanut butter, I have sworn off it. It was a staple on my toast for years while I suffered multiple, frequent cold sores on my lips, between my mouth and nose, and inside my nose. I asked everyone, I read everything: what could I do to prevent this? I took lysine, Vitamin C, Vitamin B for stress, wore sunscreen, and so on and so forth. Nothing seemed to make any difference. I thought I’d heard every possible thing for prevention, but no! Finally I read for the first time that a chemical in some nuts, like peanuts and almonds, can bring on cold sores. Guess who’s sticking to buttered toast in recent months and has had no cold sores. We’ll see how the winter goes.
Kate, that is very interesting that peanut butter might make one vulnerable to cold sores! I wonder what the chemical is and why it has affects some people and not others.
The peanut allergy is so common with children, and the fight to keep peanut butter out of the schools so heated, that I used it as an example. My allergy is to a chemical preservative, something that is commonly used in thousands and thousands of processed foods, juices, breads, chips, crackers, jams…
When I retired from teaching a few years ago, the issue of nut generated allergies was just gathering steam. How frightening for everyone—the child, the parents, and the caregivers. I think the public information campaign of recent years may have helped to raise awareness, and maybe lives. I hope so!
Thank you for explaining how your situation is. I only know mildly of that social tension. I need to avoid gluten, but it’s hardly to the point of life-threatening should I take some in accidentally. Co-workers will share their fast food gluten-loaded lunches, and I’m sure they think I’m just being an awful snob eating my meals made at home. But I want to feel the best I can, and do what I must.
The public campaign has been quite successful in many ways Diane, the young man in the article was actually able to go through his years at school hardly noticing his condition. The children that inspired the parent lobby groups are now growing up. In the adult world the emerging anaphylactic adults will have few, if any skills, in keeping themselves safe. The rosy magazines aren’t covering the reality of survival in an adult world.
I remember one blog, written by a young adult female, who claimed to speak for anaphylactic adults. She was adamant that it was no big deal, and claimed it was all about having the right attitude and approaching people in the corret way. Her blog lasted a few months, then nothing… reality caught up with her, she didn’t have the kind of control over the situation that she thought she did. The blog did not ever mention why the posts suddenly stopped, I hope for her sake that she did not succumb to her condition, as I fear her arrogance might have led her to be falsely positive, which is very dangerous. After about a year the blog just disappeared, went off the air.
A problem with public information is that is manufactured, which often leads to an unbalanced approach to life.
Joan, your situation sounds so familiar. When I was a kid in elementary school we all brought lunches from home, sandwiches in waxed paper wrapping, an apple. There were no prepackaged foods or fast foods to be had. By the time my daughters were in elementary school this had changed, and they were ridiculed for bringing home made sandwiches in their lunches. The popular kids were eating high fat, high sodium pre-packaged foods, usually with a can of pop to wash it down, creating lots of garbage and life long health issues. This particular issue caused a lot of conflict in my relationship with my girls, who felt I was just weird. They still eat mostly pre-packaged foods, with occasional forays into healthy eating.
One thing that warmed my heart when the Grandbabies came to visit this past summer, was that Tink, the six year old, asked for my homemade Vegetable Soup!