WeGo Health is sponsoring another month-long series of blog posts about health activism, and I’ve signed up to participate. There are some pretty interesting prompts that will challenge me to think about health and wellness in new ways and hopefully answer some of your questions that you so graciously did (not) voice!! If nothing else, it’ll give me some inspiration for writing.
Given the fact that life has been one crazy thing after another for the past few months, I make no promises about daily posting. In fact, given that I spent the entire day in bed yesterday (with the lights off) except to go to class, go to the bank, eat breakfast, eat lunch, and eat dinner, I’m lucky if the blog even makes it on the short list of things I thought about. So bear with me as I write and don’t write. Know that I love writing as it gives me an outlet to articulate all the crazy things that are going through my head. Even more, every comment is encouraging and helps provide just a little bit more motivation to plod on.
Thanks for reading! I hope you stay entertained or informed or encouraged.
In a world of crazies and uncertainty, this line in an email stood out to me this morning:
Thanks for the update. I think your approach is good….
It wasn’t a lot. Just a few words from Dr. Leo to say checkmark, I read your email update. But somehow it was the nudge I needed for everything to fall in place.
Bethany’s bridesmaid #2 keeps asking me, How do you do it? How do you stay positive? Or she states it in the affirmative, I don’t know how you juggle everything — school, family, illness — and still stay positive. Somehow you always make it work. Bryan concurs. He told me once that I have a “great attitude”. I’m still not really sure what that means. Maybe it’s doctor-code for a patient that “doesn’t drive us crazy”. He elaborated a little and said that all my medical drama can be so frustrating, but he’s impressed that I’m able to work through it and stay positive.
The truth is I don’t know how I do it. I do it because I have to. I’m making the most of what I have.
That’s why Dr. Leo’s words encouraged me this morning. In essence, he’s saying, You’ve got this. Trust your instincts. They’re good. I’m here to help out along the way, but you’re doing just fine.
All of a sudden I’m remembering other conversations from the past few days. During a really hard exam with Dr. Mark, he just kept saying, Relax. Try to relax. while I was telling myself Keep breathing, Abigail. Keep breathing. Ok, take a breath. Let it out. See? Not that hard. It was a hard exam, mostly because I was in SO much pain (which is why I was there in the first place.) It didn’t help that there were people there to witness it, or a doctor saying, Does this make it worse? What about this? Or this? Or this? But mostly, it was pretty similar to the pain spikes that I’ve been having the past week. A ton of pain out of nowhere. Me, Abigail, sitting there (in class or a meeting or in bed or whatever) breathing, taking it one moment at a time, finding the inner peace (even if it’s deep down inside) and living through it. Relax. You’ve got this. Breathe.
Then, there was my dad’s best friend yesterday. We had a Skype video chat to Japan. We were talking about various things, and he kept stopping me to point out that I had this huge smile lighting up my face. He kept saying, You look really good, Abigail. I see this genuine joy. I don’t understand it. But I see it. It makes me happy. I don’t understand it either. But it’s there. That’s the real Abigail shining through. I am genuinely happy, especially when I’m taking care of other people. Even though a lot of my life is downright miserable, especially given the aforementioned pain, it’s still instinctual for me to find joy in other parts of my life. That’s just who I am.
My dad told me once that it’s not really the circumstances that have shaped me into the person that I am. The circumstances have only brought to light the character deep within me. In his eyes, I’ve always been compassionate and excellent at time management.
The truth is, deep within me, I’m also a survivor. My instincts drive the creativity necessary to make the most out of my hand of cards. I just need to trust that. Even when life gets hard (and it really does!), I’m learning who to turn to and when to get help. Just because I don’t do everything on my own doesn’t mean that I’m not steering the ship. I am.
The bottom line is Dr. Leo and Dr. Mark (and everyone else) are right. I’ve got this.
P.S. Please do not take this as a cue that you can abandon me to my own life and trials. I need, need, need all the support I can get. But, at the same time, some self-confidence can go a long way. 🙂
Gretchen has saved me from the depths of despair twice this week. First, she came with me to an advising meeting with the Lion. (A whole post in itself). Second, she invited me to go costume shopping with her this afternoon. I couldn’t sleep almost all night because of really weird pain and had to drag myself to see Dr. Mark for it this morning. All in all, it was a rough 24 hours, but when I found the perfect dress with Gretchen and suggested that we dress up just for fun, she was totally game. I love Gretchen.
This is the dress I found with Gretchen. In my size. For a killer price.
We wore our outfits all night. Even when Elora came to visit and brought dinner for all of us. It overshadowed the fact that I had a really horrible day (and night). It made me feel special.
Reading and reflecting on living with a chronic illness, I realized that I need other things to focus on besides the drama-laden stuff in my life. One thing I have definitely enjoyed very much has been vintage crafting.
A few words of definition for the uninitiated:
vintage: something that belongs to a different era; (note: people who study history tend to be obsessed with this)
retro: something for which an aspect of it is vintage but it has been recreated with a modern twist
repurposed: something that had a particular use and has been made to function in a different way
crafting: any creative venture that involves imagination and materials
Here’s a glimpse of my most recent project. It’s a Christmas gift for Tabitha.
I’m guestimating Tabitha’s size. She says that she wears a size 4, which in 1970s sizing would be close to a 26.5? We’ll see. That’s why I haven’t added the waistband and the hem yet. If I need to drastically alter it, I want it in a stage where that’s still relatively easy. Next time we meet up, I’ll let her try it on. And then, I’ll finish it in time for the holidays!! Because, naturally, what screams “Merry Christmas” better than a skirt that says “Greetings from Paris” in Spanish.
Just a glimpse of my life when I’m taking a break from the rest of my life.
…it represented an active choice rather than two lives lived by default.
For one of my classes, I’m reading this book entitled The Unfinished Revolution: Coming of Age in a New Era of Gender, Work, and Family by Kathleen Gerson. Among other things, she looks at young adults’ views of their parents’ marriages and these young adults aspirations for their own futures. The book draws interesting conclusions, one of which is that young adults are more concerned with the quality of the bond between their parents than the status of their marriage. In other words, a child would rather parents separate and work out their differences from afar than be privy to a tumultuous household. It makes sense, or, at least, it matches my own conclusions.
But one part really stuck out to me. The sentence above really highlights it all. Is this an active choice or just the default? Are we content where we are and waiting to see where life carries us? Or are we making decisions and choices that reflect who we are and who we intend to be?
I see a lot of passivity in the world, particularly in certain people around me. There’s a contentedness to see what happens and to blame Fate for the inconveniences of life. There’s a willingness to shrug your shoulders and say, Well. I wish things were different, but given what I have, I can’t do anything differently. But the fact of the matter is this: We’re not as constrained by our circumstances as we think.
Case in point: Joseph. He’s married with adult children. He has a Ph.D. in a very prestigious field. He has worked in said field for years on end while his children were in school. At a certain point a few years ago, he felt calling from God to give up his job to serve in campus ministry. So he did. Much more recently, he had some feeling that he needed to be able to support himself in his service rather than relying on the generosity of other Christians to pay his bills. In order to do this, he needed to work a job that would give him the flexibility to work part-time, to leave work matters at work, and to be present and available to students involved in said campus ministry. The problem? His prestigious Ph.D. places him in a position where people will only hire him in his own field. They want him to work 60-80 hour weeks and to be on call on weekends. He would have a lot of responsibility and would have to work a lot of overtime. No one wants to hire him part-time or at a lower level position because they’re convinced that either he’ll quit or they’d be uncomfortable managing someone with 2-4 times their education.
What did Joseph do? Did he throw up his hands and ask God how He expected him to fulfill this new calling? Did he give up on working himself and go back to asking for external support? Did he start bragging about how much education he has and complaining that this shouldn’t be a burden? No. Or at least not very much and not publicly.
He’s back in school for a second bachelor’s degree. With this degree, he can very easily find a part-time job confined to day-time hours that would allow him to support his family and give him the time he needs to still be active in campus ministry. And that’s exactly what he needs to meet this new calling.
It takes guts to do that. It takes guts to put aside something you’ve spent your whole life working toward because it doesn’t line up with your current goal. That is the direct opposite of living life by default. It’s what impresses me about Joseph. He knows who he is and who he intends to be. He’s willing to do what it takes to get there even if it means stepping outside of the box.
I see a lot of people living life by default, allowing things to happen to them and complaining whenever life deals them a “bad” hand. But I don’t want choose to live that…. I choose to be active, to make choices, about my activities, my friendships, my person. I know why I do things and why I do them when I do. I choose to visit my dad when he cannot grieve alone. I choose to take an active part in my own medical care. I refuse to be stuck in a rut. I refuse to let other people confine me within their own boundaries.
It’s not about having the right status, about boasting that look! you’re still married even though your family life is in shambles. It’s about having the reality that makes sense, about deep genuineness. Being genuine? That requires effort. But it makes so much more sense.
Reading Sophie’s update, I realized that our medical journeys are very similar. Sure, we’re about five years apart. Sure, we live in different countries. There are nitpicky differences. But the bottom line is that there are a lot of similarities, and I’m pretty sure we can learn a lot from each other.
See for yourself and tell me what you think:
I’m in the same place as Sophie with regard to CBT where I’ve already done everything that you’re supposed to do with regard to chronic pain management. Like her, I’ve been to two sessions and have been really frustrated with the lack of progress that’s being made.
I joke with my doctors a lot about a “magic wand” cure. What I tell people is that no one wants a magic wand cure as much as I do. And given how much certain doctors are invested in my case, if they stumble across one, they will exercise it. And if the cure comes out of the sky, we will very quickly switch gears and move in that direction. However, we’re focused now on coping with the existing symptoms and living with the reality that I’ll probably be living with this condition for the rest of my life and even the possibility that the condition itself is cumulative.
I was just thinking today that I need to call my gastroenterologist Dr. Leo and discuss the issue that I have about eating. The thought of having an eating disorder is really scary to me (as if I haven’t already jumped the hurdles of being labeled with a ton of other things!) but if Sophie can do it, I suppose I can do it too!! 🙂 I know that I shouldn’t be suffering from malnutrition on top of everything else!
The future is really scary. Especially if you’re in school. Especially if doing everything right doesn’t lead anywhere. Especially if everyone around you doesn’t have to deal with ANY of this at all.
Two things have helped me through all of this:
1) Focusing a little bit on the present. I do know that I have today and this moment. So I want to make this moment count. Maybe, at some point, they’ll all add up. But if nothing else, I won’t reach the end of my life still waiting for my life to begin.
2) Friends. It helps a lot to have other people to lean on. Friendly faces count as well. Somehow having friends can get you through another day. Making friends with health care providers helps a lot as well. It makes me feel less vulnerable. Maybe they’ll slay the dragon if he comes out from under the exam table. Or the X-ray machine. The receptionist will definitely not add to the pile of stress I already carry.
And there are the friends who drop everything to spend the night with you when you’re really depressed. The friends who will call you to make sure you’re okay because even though you said you were, they thought that you might need someone to talk to. The friends who pray for you regardless of what has happened; you’re their friend, you need prayer — it’s that simple, no judgment. And the online friends who read your blog posts and instead of rolling their eyes at another one of your ludicrous dramas, laugh with you, cry with you, and press on together with you… because that’s what friends do.
So, there it is. A little bit about my life. A little bit about what I’m thinking about these days. A little bit about why I write about the things I write about. (Ever wonder why friends & medical folks are center stage? Now you know.)
Any suggestions from the readers? Anything you’ve always wanted to know (or are puzzled that there are TWO people in the world with the same wacky combination of life dramas)?
I’m two states away… spending some time with my dad.
I got a text from my mom this afternoon asking for prayer for my dad — he’s really sad about his brother Eddie. Daughter instinct kicked in and I grabbed some clothes, all my homework for a week, and jumped in my car.
Please pray for this time and for my dad. There’s need for much healing and much comfort.
It wasn’t a lot. Just a simple prayer. But Aaron’s words stopped me in my tracks.
Wait. I mean something to him & to the congregation? I’m not just another person in their outreach category? I’m one of them. They need me to be present. They pray for me not just because it’s what good ministers do. They pray because they care. They care about me.
My paternal uncle Eddie passed away a little over a week ago. His death was very unexpected and hit me pretty hard. This post is for him.
Nearly two years older than my dad, Eddie was the quintessential American boy. His parents moved across the United States to pursue the American dream and eventually opened a mom and pop business. At an early age, he joined the Cub Scouts and proceed to ascend through the ranks over the years. Ever athletic, he played water polo in secondary school (much to non-athletic little brother’s consternation!) As an adult, he traveled frequently, sending mementos of his trips to various family members.
Eddie: Grandma always told me how intelligent you were & how much potential you possessed. I look at the part of your life that I know and I see creativity, resourcefulness, and strength. You lived up to the valor of the name Edward in so many different ways.
As I mourn the loss of your life and the reality that we never really got to know each other, I am comforted that the trials you experienced are over. I’ll be telling my children about their uncle who refused to let overwhelming situations master him, the man who found meaning in his life in his own way. At future milestones of my own, I’ll be remembering you, my uncle Eddie, for who you were and who you intended to be.