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.”
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.”
Date: 9:00 AM EDT Friday 2 September 2016
Condition: Mainly Sunny
Pressure: 102.3 kPa
Visibility: 24 km
Wind: NNE 21 km/h
“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.”
“Always be ready to speak your mind and a base man will avoid you.”
1757 – 1827