Today is Mastocytosis and Mast Cell Diseases (MCAS included) Awareness Day. So, in honor of that, I thought would finally post something. This is something I wrote after some of my own experiences and some of those shared in a few support groups I belong to. Something I never thought I would have to consider is the debilitating side effects of sensitivity and allergic reactions to smells, enviornmental factors, and even other people. While I have had my own struggles with food and medicine allergies and sensitivities (try explaining you actually can’t eat cucumber and NOT look like a cheap asshole in a sushi place) I have never had to suffer through being unable to walk into a store because of allergies or reactions, NEVER had to walk out of a restuarant because there was nothing for me there. I have had to deal with restaurants not knowing their own food (both as someone working in the industry, and heavily trying to change that, and as a customer). So here is a collection of experience pieces pulled from many different, incredibly strong people who have commented or posted about their own struggles or those of their children in an effort to raise awareness to the rest of the world.
Where We Can’t Go
There is an invisible wall between us and the rest of the world. A wall of smells and scents, temperatures and light, that keep us away. not everyone, but enough to matter.
The sunshine is blinding, far too hot, and too risky on those medicines we take. The increase our skins sensitivity to sun and cause rapid sunburns, leaving us in agony for our bodies responses last for days. A sunny, warm day can quickly become a test of our bodies ability to cool fast enough or a mad dash to a fan and the cool indoors. But not too fast, because sweat and overheating too can cause a flare, fainting, or an adventure with an epi-pen. try explaining to the hyperactive 4 year old that they cannot run outside with their friends because they may become dangerously ill.
Thinking of a nice trip to the mall? No chance. The scents and smells tossed haphazardly into the air by perfume vendors, candles opened all at once, and far too many ambitious hawkers eager to snag your hand to show you the latest cream all spell disaster. One spray too close, one candle scent too many, one sample on our skin can lead to a simple migraine (for us that’s the least of our problems) or a full fledged trip to the ER complete with throat closing, hives, and even collapsing onto the floor.
Out on a date or going to a nice meal? Forget it. Too often restaurants won’t or can’t accommodate or don’t even know what exactly is in their food. What CAN we eat? how long has it been sitting out or in the fridge? What’s SAFE? Is there any hidden seasoning or other items FAR riskier cooked too near? Will there even be an option we can eat? What about the woman seated nearby and her strong perfume or the waiters gentle cologne? Is it even worth trying? Is the anxiety of pre-planning going to be too much or just fall apart?
A grocery trip is a navigation nightmare complete with extreme pre-planning and contingency upon contingency plan. Are those cinnamon brooms near that door? Change course. Is there even another entrance? Avoid that cleaning isle, could a sales associate grab you the ONLY detergent you can use that is inevitable trapped in the center of that danger zone? Is there even someone you can ask? Is it sample day again? Yet another cooking smell in the air and alarm bells go off. How fast can we shop and get out before our bodies become overwhelmed from the stimulus. The line is long and there are candles and potpourri galore up front to try and avoid. Is that person in line buying all ten of those cinnamon brooms? Please don’t leave one up there. Just skip that line for safety. Can’t stand in this line, the amount of detergent in that cart could wash a brigades uniforms for a week. Did they clean the store with bleach again? Is that ammonia in the bathroom? No bathroom breaks here I guess.
Why even try when the stares we get for a mask on our face or the gloves on our hands make us appear as hypochondriacs or someone with the flu? We don’t look like we went through chemotherapy so that doesn’t make sense, right? How many times are we going to get asked in a doctors office why we have on a mask when they provided them up front in the first place? How many strange stares can we take as we try to navigate a world no longer safe for us?
The answer is As Long As It Takes. Until we keep changing the face of illness, changing the stigma, nothing will actually change. Until the rest of the outside world understands we choose to do things for our own safety and to protect them as much as ourselves, we will just keep going. We don’t wear a mask because we are sick or think you are sick, we do it to help ourselves avoid a scene, avoid a sudden rush away if you cough or sneeze. A cold or flu is not a simple game for any of us. You may not see what we all experience because it isn’t written on our shirts, seen clearly in our eyes, or even announced, but it’s there. Some of us are fighting a harder battle than others, having to make massive changes to just get the daily bare minimum done. Some are on risky drugs just for the chance to go back to some form of normality. Many are being proactive with protection so they don’t have to risk wasting a precious epi-pen for something they could have avoided.
You may not see us. We aren’t everywhere. Many cannot attend a march or a 5k or a charity event, despite our desires to go. We often miss birthdays and weddings because there is no energy or strength to go or no understanding party there to offer a safe meal or request an avoidance of perfumed items by guests. Many have missed special reunions or family gatherings because “there is just no way you could actually have that many issues, just get over it and come” is all too often an excuse. We don’t want special treatment, we ask for understanding and acceptance. We ask for an open mind.
While I may not spend my days in constant fear of a horrible allergic reaction to something new, all too many are. Too many people’s needs are ignored because it’s an inconvenience in our lives. Before this happened to me, I am ashamed to admit I could have fallen into that category. Trying to understand, a willingness to change, but not enough effort put in. Despite my best efforts, no one is perfect. Coming from the “sufferer” side now, I don’t ask for perfection, I just ask you to try.
I ask you to consider what your friend or neighbor or family member may choose not be sharing or may decided to share and their need for you to reach out an understanding hand to help. I ask you to do your best as a teacher, a parent, a child, a friend, a business owner, or a casual person to be understanding, accepting, and accommodating. It’s overwhelming, sure, but not impossible. This world will never be built perfectly for everyone, hell my University had no accommodations in some places for wheelchairs, zero plans for service animals, and no idea how to help with medical emergencies, until it happened to me. And then, with the hard work of one administrator, things changed. It only takes ONE voice to speak up and make a change and that makes the world of difference.
I have one last tale to tell, one of my own experience and of gleaming pride of my incredible staff. While working as a General Manager in a restaurant, I fought hard to ensure our food allergy warnings were up to date and available to all. I pushed to make sure we tried our hardest to accommodate those with so many allergies and difficulties. I had an incredible staff standing behind me making it all happen. On a very busy Friday, a woman approached a server and asked about an allergy menu for a sever allergy. They directed her straight to me where she explained her son had never been able to order for himself out. NEVER, at 12. He had a huge number of dangerous allergies and few places were safe for him and others she was unsure about. He was going on a school trip and needed to know how to order for himself. I handed her our list and handed him a special menu. Her smile and his smile meant everything. I walked them to the front and asked him to tell me the allergies so we could get him something to eat. And for the first time, this young man, ordered himself something to eat, knowing it was going to be okay. His mom was so nervous, but she knew someone finally got it, someone was listening. If she wanted to stand there and watch them do it, I would have let her. My kitchen prepared that meal with the utmost skill. Gloves were changes, bowls scrubbed, stations sanitized, plates separated, gloves used to bring out the food. Items were checked and double checked. My servers took care to check in on them, reassuring the mother that they had eyes on him and his friends as well. I never saw them again, never heard if that trip was a success, but for twenty minutes, I knew my team had very proudly changed someones life in the tiniest of ways. Had even one person brushed it off as “unimportant” or “just another frantic mother overreacting over her child’s potential food sensitivity” I couldn’t say how proud I was of that team. How much it meant to ME to see them stepping it up. Suffice to say, they never let me down when it came to guests food allergy needs and I beamed every single time. See, any one of them could have brushed it off as just another manager comment or obnoxious and useless note to learn, but they didn’t. They took the time to try and make the world just a little more built for someone else. And that’s all we’re asking.
Life On Fire 