Part Three of Four
Guest post by Che Ray
Here are some things I would recommend: even when it’s a stuck in bed day…
I: Don’t try to do too much physically. Definitely let your body rest, but also do something active to restore your mind like listen to a meditation talk or guided meditation. Tarabrach.com or jonathanfoust.com are great! I recommend them highly. This will help you get restorative rest, which is a much deeper, more relaxing experience.
II: I only recently discovered an online language tutorial called Mango. It’s free if you have a public library card. It is an awesome interactive language learning app. It has everything from Spanish to Swahili, to Pirate (really, it’s super fun and funny!) to Yiddish; dozens of languages.
I have a brain injury from the toxic exposures but have not been able to get the kind of occupational therapy I need which has been depressing. One day I thought, what can I do to keep my mind stimulated? And I came across this. Even if you don’t want to dedicate yourself to learning a new language, 10 minutes of mimicking Pirate language is going to make you laugh and feel better. And it’s good for your brain.
III. You are a superhero.
Recruit other people in your life to join your fight.
Write up a check list for people to review the things they might inadvertently wear or put on before coming over.
Type it up, email it to them. Tell them you want to make it as easy for them as possible.
IV: Above all else you are worthy of being protected and staying healthy.
V: Do not agree to ride in a car for three hours to go to family for Christmas dinner unless everyone in the car follows the check list of not wearing clothes that have been washed in scented laundry detergent! Period.
Their choice of laundry detergent is not more important than your life!
Your health problems will only get worse if you don’t stick up for yourself. But you are not alone. We have your back.
Wear a mask when you are in those sort of confined spaces.
VI: There are many in the EI community who will say that there is absolutely no room for error and we just have to get used to going through the holidays alone; that the risk to our health is too great. That those without it will never understand and the effort to try and make them is too stressful.
It is true that you can take a ton of precautions and still encounter exposure. But I strongly disagree that the upcoming holidays are not the time to compassionately urge and educate your family.
The holidays are exactly the right time. Not to be flip, but play the Baby Jesus card. As in couch directions and strong factual assertions about your condition in a reference to wanting to be together during this spiritual time. That’s corny, but you know what I mean.
Look, this condition is isolating enough. It is going to be hard at times to not give in to anger and despair. And yeah, you are going to have to stay strong, stay assertive. Especially if people are coming into YOUR home. You lay down the rules! But you have to find a way to assert your needs without alienating yourself from the people you love. Kill them with kindness but firmness about it.
Start sending them emails NOW about what they need to be doing to prepare to come to your house. Tell them you love them and appreciate them for it. Describe for them in detail what happens to you when you get sick. How it affects your life. Engage their empathy.
Being committed to educating the people you care about most in your life is also an effort that benefits the entire EI community and beyond. When I feel self conscious about needing to take a moment to teach, I think to myself, this person hearing this information, might just help someone else with this condition at a later point.
For more on planning the visit, see Part Four…