Me: (deep breath) There are some people in the UK who do not support a the EU. They believe that the UK gives more to Europe than Europe gives to the UK and also there is a high level of xenophobia and criticism about immigration at the moment among some people.
Hank: But my Tia and Prima live in London. Are they okay?
Me: Perfectly okay, my love this is a vote. (paying attention to the news) Annnnd the prime minister resigned.
Hank: Resigned means quit, right? Why?
Me: He wanted to stay in the EU. He doesn’t support this vote. This is a terrible mistake.
Hank: So they will vote for a new prime minister?
Me: Yes, by October apparently.
Hank: This makes me sad… Oh and what about the people from England living here? There are lots of people living here and in Spain.
Me: And in France and all over Europe.
Hank: And the people like my Tia and Prima living in London?
Me: I don’t know, buddy. We will see what reforms are put into place by the new prime minister. (looking over at the financial numbers) Oooooh.
Hank: What do those numbers mean?
Me: The people who were campaigning to leave the EU kept saying that leaving would in no way impact the British economy. Those numbers are the European Stock exchange and this is the overall financial numbers and they are reporting that the British pound has dropped to an all time low in 30 years. Annnnnd the head of the British Bank is going to have a press conference, which can’t be a good sign. We will have to wait a few days to see if this is just trauma from the vote or lasting. The vote was rather close: 48.1% to remain in the EU and 51.9% to exit.
Hank: I wish it was the opposite.
Me: Me, too. This is a sad day. We were all greater united than we could ever be apart.
Me: (as the door opens at the end of the work day) CHICKENS!!!
Molly: Mama! Mama! (toddling up our front steps) Maaaama.
Hank: (hugging my trunk) Mama, How was your day?
Molly: (hugging Hank’s trunk) Mana (sister).
Hank: I am mano (brother) you are mana (sister).
Molly: (eyes closed, full happiness mode hug, not caring) Mana (sister).
Me: Chickens, I am so excited you’re home. Tell me, everything.
Molly: Ox-chsh. Ox-chsh? (This is Molly’s attempt at saying yogurt)
Monica: (our cousin visiting for the summer) I can get the yogurt. Come here, little Molly.
Molly: Sim, Anda (yes, come)
Monica: (being lead by the hand into the kitchen by Ms. Molly MaGoo)
Hank: (hiding something behind his back)
Me: (noticing) Hey, whatch got there, sailor?
Hank: Something special I made but, (leading me to the sofa and hiding the something special behind a sofa cushion) I have something so important to tell you.
Me: Oh lala.
Hank: Remember how you told me that it is your goal that if you ever get well enough you want to take me on that walk to Spain? Just the two of us?
Me: Yes, indeed. It is my dream that I can get back to such a healthy state that we walk the Portuguese route of the Caminho de Santiago, the pilgrimage trail to the cathedral at Santiago de Compostela.
Hank: Well today, at Gomes (Hank’s Summer Program) I met a girl that did it when she was six, just her and her mom, the walk that takes one week.
Me: That is the Portuguese route.
Hank: AND they are going to do the walk from France which is a whole month next year. A WHOLE MONTH.
Me: There are routes across Spain, France and Portugal. That is so cool. Did you tell her about our plan?
Hank: I did and she said that was awesome and that it is really fun, but hard, but like good hard, you know.
Me: I know.
Hank: And she hopes you feel better soon.
Me: That was kind of her to say. You tell her I am working on it and I would love to contact with her mother when I am well enough to plan our Caminho (route).
Hank: I’ll tell her tomorrow.
Me: Now, (peeking behind Hank at the hidden special something) DO I get to see what you made today.
Hank: OH, I almost forgot. (retrieving it).
Me: Cool collage. This is the Portuguese Flag?
Hank: Yup. I made it out of all different scraps of paper.
Me: (whispering) That is what we call a collage.
Hank: Sure. We made it because Portugal is playing tonight in an important futebol (soccer) game.
Me: Yah, the Euro Cup.
Hank: And if we lose then we are destroyed.
Me: Would you like to watch the game?
Hank: No, I don’t like futebol (soccer). I just don’t want Portugal to get destroyed.
Me: HA… Word.
(Portugal tied the match last night with Hungry. We didn’t win but we weren’t destroyed and are still in the game. FORÇA PORTUGAL!!! VIVA!!!!)
My personal motto before and after my diagnosis of RA and AS. Two invisible, chronic and debilitating illnesses with no cure. Illustration by: Joy Hanford
Me: (entering the house)
Alfredo: Success? You’re home early.
Me: I was crucified. CRUCIFIED! (tears filling my eyes)
Alfredo: What happened? You just needed to get your blood drawn.
Hank: You okay, mama?
Me: (hot, embarrassed, angry tears streaming down my face) Yesterday, the pathology tech told me I just had to show up at 8, 9, or 10am and queue to have my blood draw, that I didn’t need a specific time because they had to send my blood to Porto for analysis, so just come at either of those times, when it was best for me… (deep breath)
Alfredo: (handing me a tissue)
Me: So I walked into the sala (waiting room) at ten to eight and the sala (waiting room) was totally empty and I knew it was too good to be true, but I took my ticket and I sat down and waited. Everyone saw me. The pathology techs knew I was there and had zero problems with it. Five minutes later a security guard walked in and asked if he could “let them come in,” and the tech WHO KNEW I WAS THERE said, “sure,” and about four minutes later 75 people flood into the sala (waiting room), take tickets and queue. And when they called my number, which was the first one, the entire room full of velhotas (elderly people) went crazy, screaming, calling me every name in the book because it’s Minho (our region which is known for swearing and fowl language) utterly irate chanting, não pode certo, não sim senhora (that’s not right. not so, lady). (blowing my nose) The main instigator literally got up in my face and was yelling, “Show me your paper, show me what time you are supposed to be here because it isn’t now. Show me your paper.”
Me: I looked him strait in the eye and said, “Tu tem um problema? Falar com enfermeiros. Sair da minha frente” (You have a problem? Talk to the nurses. Get out of my face.) And luckily my boyfriend was there…
Hank: Wait, who? Your boyfriend?
Alfredo: Not her real boyfriend. There is a pathology tech that has an obvious crush on your mother and always flirts with her, in front of me, like I am not even there.
Me: He defended me and the tech from yesterday rushed my paperwork and I don’t want to think she did that on purpose because I questioned her yesterday when she was giving me complete opposite instructions and information than what her other colleague, aka my boyfriend, told me the day before. I don’t want to be that person that blames but she had this wicked grin the whole time that I didn’t like, maybe that is just her nervous smile, I don’t know. AND to make matters worse this was at five to eight and we still had to wait 45 minutes to be seen and they kept heckling me, calling me names and gossiping about me so much so that I couldn’t sit in a chair. I couldn’t take their hateful energy. I had to go and stand by the wall. (crying again) They said so many mean things and got real xenophobic by the end.
Hank: Oh no. If you stood that long it means you are hurting really bad. They can’t see it and what does xenophobic mean?
Me: It is when you have a fear of people from other countries.
Hank: Oh, they said bad things to you because you are an immigrant. That isn’t nice. (holding my hand)
Alfredo: How could you have known there was a special waiting place in the morning before 8am? I would have done the same thing you did. The rest of the day before 11am people start queuing at the ticket booth. There are lines snaking all over the hospital. This is not your fault.
Hank: I remember, too. That is why you hate getting your exams done at the hospital because people are so upset about the waiting and it is hard for you to stand that long. You need a chair.
Me: (sniffling) That’s right, Hank. There are far too many people crammed into a hot, little room and the waiting makes them crazy. If I were pregnant or in a wheelchair I would get priority and they wouldn’t have a problem with it. I went early because of my severe Rheumatoid Arthritis (RA) and Ankylosing Spondylitis (AS). The pathology techs know my health issues and maybe that is why she told me to come early to be kind, I don’t know. I hate to think what would have happened if it were someone other than me, not strong enough to be confrontational, or someone who suffers from anxiety or cripplingly low self esteem. They would have destroyed that person and for what? Getting through their blood draw two whole minutes sooner?
Alfredo: That is one of the problems. People are so used to others cheating or manipulating situations they always jump to the wrong conclusion about people.
Me: And when you have an invisible illness it is easy to make those assumptions. I swear I am going to shave my head, then everyone will assume I have cancer and not open their ignorant mouths.
Hank: Mama, you would look beautiful no matter how you cut your hair. I am sorry people were mean to you. People are mean sometimes when they don’t understand.
Molly:(Extremely loud crash coming from the bathroom) Oh no!
Alfredo: I’m on it. (calling over his shoulder) We will go together to write a formal complaint at the hospital. That sala (waiting room) is hell every time. They have to do something about it. No Molly, do not eat Nivea. Yuck! Yucky!
Me: (shock wearing off, suddenly exhausted)
Hank: You need a coffee, mama, and maybe some peanut butter toast? Yes? I can help you.
Me: That sounds exactly like what I need. Can you eat half of my toast? I don’t think I could stomach a whole two slices.
Hank: That sounds exactly like what I need, too.
Authors Note: I understand the need to be a speak-up when you think something is amiss or stepping in when someone needs help, I am all for that, I offer help to people all the time (note that I offer my help first before I lay blame or judgement), but please know that some disabilities are invisible.
People who, like my self, have invisible illnesses have to deal with harassment when we utilize handicapped parking, restrooms, get priority in queues in waiting rooms and emergency rooms on a regular basis because we need it and I apologize to the able-bodied that it can cost you an extra five minutes of waiting, but to put things in perspective not using priority opportunities can cost me one to two full days. I am writing this post from my bed and in high pain from standing on my feet for 45 minutes because I was too proud to sit with the angry mob of resentment I met this morning.
I get that people cheat, but maybe after reading this conversation you will think about your delivery when you feel the need to speak up. Be kind when you question the validity of someone’s choice to use accessibility aids or priority. Make your question about you not about the person. If you catch an asshole make it a teaching moment and not a confrontation.
Forgiveness isn’t forgetting it’s letting go of the anger.