“Normal is just a setting on the dryer.”
We’ve all heard that one, right? While it may be catchy, and even comforting, it’s not really helpful when your life goes from normal to really abnormal, especially if it happens without warning. A phone call, a doctor’s appointment–these things take only seconds to rearrange our lives.
Over the past few months, I’ve seen a lot of dear people’s lives go off kilter in the medical sense of “off kilter”. So I thought I’d share some of my thoughts on living a life of abnormality.
1. You have to embrace the abnormality as the new normal. This is the most important and perhaps the hardest thing. No, most people’s lives do not involve random Sunday morning runs to the ER, or IV malfunctions at two a.m. But guess what. Yours does (or whatever your circumstances dictate).The sooner this becomes “no big deal” to you and your family, the better. This is especially important if you have kids. The kids will react much better if you are calm and treat what is happening like it’s the most normal thing in the world. Now, sometimes, this isn’t possible. But regular hospitalizations, tests, ER visits, and the like are much less scary if they feel routine.
2.Remain calm (at least in front of medical personnel) when you hear that your plans are about to radically change. (That doesn’t mean you can’t get upset about it. I’ve had my share of crying jags in empty exam rooms about hospitalizations I didn’t want.) However, if you’re going to get upset, do it fast, ugly-cry, and then move on.
Think about what you need to do immediately. What do you or your child need right now–medications? A favorite toy? Does your cell phone need charged? Are there people that you have to meet with later today, and now that’s going to be impossible? Write a list, call people–whatever you particularly need to do right away, do it.
(I tend to think the following: I need my CI battery and charger. I need my glasses, contact case, and solution. My meds are mostly in the hospital formulary, but some of them aren’t, so I need the bag of meds brought in so I can give the nurses what I need to take and they can put it in my med drawer. I will need the charger for my phone and iPad, which is plugged into my computer, and I’ll need the wall charger, which is in the other bag. Etc.)
When I first heard about transplant being an option for me, I had to admit, I was FREAKED. I had no idea this was actually something that I had to think about now. Thinking about the immediate things I needed to do with this information was much less scary than letting my imagination run wild.
3. Be upfront with important people in your life. When I worked, I told my bosses, this is my medical situation. There are times when I may be out of the office for long stretches. I cannot control when this happens. I will update you with information when I have it. This means that there have been calls from ERs to my bosses. If you’re a parent who has a child who’s sick, and you will be missing a lot of work, I suggest you talk to your bosses and get really familiar with your leave options.
4. Talk to Patient Accounts at the hospital. Really talk to them. They are your friends! Use the resources that are available to you. If there’s a social worker handy, it can’t hurt to talk to said person and see what’s there for you and your family to use.
5. For parents: treat your children as normally as possible. I really, really, REALLY cannot stress this enough. Do not give them the mindset that because they have health problems, they are “super special” and don’t have to do homework or are entitled to things that other kids don’t get. They may need accommodation. That’s one thing. And they may get more toys, etc. because of their hospitalizations. OK. But telling them they don’t need to do homework or whatever because they’re “in the hospital” or “sick” or whatever is not helpful and not good for their development.
I always had to do homework. When an IV bled out at 2 am the night before my Algebra II final, I didn’t get to skip the final. I took it later that same day. If I’d have been admitted to the hospital, I’d have taken the final when I could, or we would’ve made arrangements. I never got out of schoolwork.
5. Be prepared, but don’t be Eeyore: Obviously, expecting that things can happen, and being prepared for them, is a mental help. But don’t be overly freaking out. Don’t think that everything is catastrophe, or feel like you cannot plan anything because who knows what is going to happen. There will be seasons of life where things need to be readjusted–holiday plans, vacations, etc. But there are also times when everything’s fine. You have to ride it like you’re surfing. Do not let worries control your life, especially if you’re the parent. Your kids can sense this. Really. And it just makes them tense up and freak out because the parents are worrying about me so there must be something to worry about. For example: I knew that CF was fatal when I read about it in our World Book encyclopedia (ah, the 90s!). But my parents weren’t going around wailing and gnashing their teeth about my demise, so I figured, hey, I’ll think about this when I’m 30 or so.
If you’re a parent, try to do your freaking out when the kids aren’t around/awake. See point above. This doesn’t really go away because your kids get older. It’s hard to control yourself and console someone else.
6. As far as sharing on social media: let’s just say I was really glad I didn’t have Facebook in the years leading up to my transplant. There was no place–and there still is no place–for my parents to share photos of me in hospital rooms, in recovery, etc., because they do not have Facebook, or blogs. If your child is old enough, talk to the child about sharing this private information on social media platforms. Some kids don’t care. Some kids, like me, care greatly. I did give dad permission to update my friends with regular emails when I had my transplant, but I would not have wanted him to attach any photos.
There are few things you can control, as a patient. You may not want these moments splashed all over Facebook or twitter. But talk to your family/your child about these things. Get everyone on the same page.
7. Do not worry about the things that MAY or MIGHT happen in five, ten, fifteen years. This is a waste of brain space and a huge source of stress. Think about what is currently happening. Focus on the immediate moment. What needs to get better? What are people trying to find out?
8. This probably should have been first, but: pray. Really. Get in touch with your pastor/priest/rabbi/whatever. I found it immensely comforting to talk to certain hospital chaplains that I really liked (Fr. Mark! More on him later!). God is in control, guys. He really, really is. Remind yourself of that frequently. Know that I still have to remind myself of this often. 🙂 I don’t think it ever stops, really, the need for Him to take care of all this. But if you don’t pray—start. It helps.
What do you do when life goes off the rails? How do you adjust? Do these suggestions help? Let me know in the comments.