Writing My Own Lyrics

This year so far has been a year of loss for me. And that’s been hard. The grief of losing things that held a lot of significance or hope for me has been a long road. But this morning I realized that around the same time my grandmother passed away, a new life came into my life — in the form of a nephew.

Before anyone has a heart attack, he’s not a biological nephew. One of my good friends had a baby in April, and I’ve become Auntie Abigail to her toddler and to her new baby. This new baby, Henrik, has reminded me that with each end comes a new beginning.

I was trying to get little Henrik to get to sleep today, so I sang this new nursery rhyme that I wrote. It’s to the tune of “Mary had a little lamb.” The new words: “Henrik had a teddy bear, teddy bear, teddy bear,/ Henrik had a teddy bear whose fur was white as snow./ And everywhere that Henrik went, Henrik went, Henrik went,/ And everywhere that Henrik went, the bear was sure to go.” It was so much fun.

Baby Henrik has a white teddy bear that’s pretty much as big as he is. And he likes it when I sing the song and bounce the teddy along with it.

Sometimes it’s the little things that take our breath away. They make for some great memories. Something I don’t want to forget, no matter how silly it is.

Abigail

Honored to be Chosen…

as the Advocate of the Month for the Mesothelioma Cancer Alliance Blog.

Briefly, succinctly, mesothelioma is an aggressive type of cancer that attacks the lining of the lungs and/or abdomen. It’s primarily a result of exposure to asbestos but can take many, many years to surface.

I wrote a little bit more about Robert and tried to add a whimsical twist to the story. If you know me in real life, you know that I like to tease people that the mere fact that they are tall makes them special. Come to think of it, I think my fascination with Robert and Matthew’s height started it all.

I only have a few memories of life before age 5 — being chased by a goose, my best friend’s family moving to Russia, and Matthew and Robert. Matthew and Robert are memorable because they were tall, so tall in fact that they were the only two people in my whole church who had to duck to fit through a doorway….

Read more: http://www.mesothelioma.com/blog/authors/warrior/advocate-of-the-month-july-2014.htm#ixzz36YvEqxLD

Abigail Cashelle

Enjoying the Holidays?

Dear Readers,

I hope that you are enjoying the spirit of the holidays and all the festivities that go with them. Or at least that you aren’t buried under too big a mountain of self-pity.

Alas, I have been negligent with regard to this blog. However, I am happy to report two things:
1) I am planning on visiting a medical clinic early next year for a round of diagnostic consultations. Hopefully that will clarify some things regarding my long-term care.
2) I have been working a lot, which means that I now have money for room and board and whatever else I need when I’m at the clinic. I think it’s also time for new glasses since the finish on the ones I have has started shriveling up. (Plus they’re 3.5 years old.) It’s nice not to be spending savings for once.

Besides that, I’m on a different muscle relaxant now. I’m bruising much more easily, which makes me very nervous to wear anything other than long sleeves and long pants.

I’ve made it through almost the whole month of December with only 7 doctors/medical practitioners visits, including three sessions of psychotherapy. That’s actually a slow month for me. I did have quite a few sessions with Ken the pharmacist talking about the bruising and what to do about it. I need to go back and see my primary care doctor about it, but I’ve been lazy/busy with other things and it doesn’t seem life-threatening. (It’s weird when you start weighing your health like that.)

I saw an ex-best friend at work the other day. I got dumped by three people in college, three years in a row. It was pretty awful, but fortunately it only lasted for three years. Anyhow, I was pretty mad to see the ex-best friend after all that had happened. But, you know, he’s really the one who pushed me to get psychological help and was there for me when I first started taking anti-depressants. I know that I wouldn’t be where I am today without him. He forced me to believe in myself in a way that no one else had before. And I’m grateful. I’ve always wondered how I might be able to tell him that. So after he left and I was done being mad about the whole encounter, I realized that that might have been sufficient for him to know that I was doing okay and that I was doing better (at least from that perspective.) And that made the whole thing okay. Or at least okay-ish.

That’s all the news for now. Or at least, all that I can think of.

Peace until next time,
Abigail

Reflections with Aaron

I’m trying to write down all my thoughts from moving and transitioning. I realize that there’s some details that I haven’t had a chance to blog about. Not sure that anyone’s following, but I want to write them down so I’ll remember later.


I met with Aaron one last time before I moved away. It was an interesting time of reflection for both of us. We first met about twelve months before, and we talked about how much our lives have changed in the last year and a half. We’ve both made changes that we never dreamed we would ever make, and we’ve also both been faced with decisions that we never imagined we’d have to deal with. (We just felt sad for other people who had to experience them & patted ourselves on the back that they didn’t happen to us.)

Aaron gave me two parting thoughts:

  1. Live well with illness: Neither of us are sure what that means or even what it would look like. But at some point, God calls us to live well on the path He’s ordained for us. While that doesn’t preclude praying for deliverance, it does mean that we have a responsibility to endure. I think that’s one thing I’ve definitely learned by being around Timothy & Aaron. Learning to focus on living well & living Christ, period. Not to worry so much about the context. Or compare myself to other people. Because that’s all that God requires.
  2. Live well spiritually: We talked about liturgy. We talked about having a communion centered life. We talked about a sacramental faith. Mostly we talked about following the peace in our spirit and not compromising.

Besides that, Aaron commented that I need to surround myself with friends who don’t just make me comfortable but aren’t afraid to ask hard questions. That was a hard comment for me to swallow, not because I’m afraid of that, but because it feels like that’s all that I ever do. In the past year, I’ve been in more Quality of Life conversations, more fertility/genetics/gynecological conversations, more purpose-of-your-life conversations than any girl my age should ever have to encounter, let alone all in a one year period. I had a lot of friendships come and go and made some fairly difficult decisions. So, isn’t a girl allowed to kick back and relax once in a while???

At the same time, it’s nice to have solid friends when those hard times come, even if I manage to stumble into those difficult questions all by myself. In that sense, Drs. Leo, Samuel, and Mark have been amazing rocks. Diana, Alana, and Tabitha have never been afraid to ask hard questions and to pray & support from afar. Bethany’s been pretty amazing as well. Timothy & Grace have had open ears, especially Grace, who’s shared with me things on her heart as well.

It’s a lot to think about moving toward the future. I’m not entirely sure what God has in store for me. But I know that my season with Timothy & Aaron & company was not in vain.

Gratefully,
Abigail

Favorite Patient Syndrome

The past few weeks, I’ve been saying goodbye to a lot of people. It’s been hard. It’s hard to let go. It’s hard to admit that my life is going to change. And it’s hard to keep track of all the things people want me to remember and to try.

It turns out that I have pretty good intuition, I just need to trust it more.

just special, or favorite?

I figured out pretty early on that Drs. Samuel & Leo had taken me on as a special patient, someone they were each invested in for their own reasons. It makes sense. They’re both research clinicians or physicians that mainly spend a lot of time doing research. (Not sure what the technical name for it is.) Anyhow, it makes sense that if they are successful in managing my case, they could turn it into a paper, and it would advance their career.

But there always seemed to more than that. Dr. Leo talked to the ravenous lion. And wrote letters to the lion’s colleagues. He even read/skimmed my dissertation proposal. Who does that?? That’s more than a research paper in the works. Plus, he spend hours of time on the phone with me, trying to understand not only my medical symptoms but also my life, my activities, my interests. Of course, all of this blends into how he thinks about my case & treatment for it. But it also helped me a lot because my health has become so much a part of my life and my friendships and even my career. It helped me conceptualize things and not to become robotic when it comes to medicine. It also meant that I was extremely comfortable talking to him about hard things that were happening in my life, which he probably ought to know about… like the fact that my sister was having severe depression and didn’t want anyone to know about it and I ended up being the one called upon to stage an intervention.

we will miss you; bee back soonI wrote earlier about Dr. Samuel and saying goodbye. My last visit with Dr. Leo was even more interesting. Our discussion was fairly complex. But he wound up saying, I can still by your physician from afar. We have email and the phone. Plus, you said before that you might drive up here anyways.

There’s an aspect where it’s not clear that I’ll have another gastroenterologist right away. There are parts of my illness that are clearly digestive related. But, in another sense, Dr. Leo pointed out that a rheumatologist would likely manage my case similarly to the one he would look at my case. (And I have a rheumatologist in mind in my hometown.)

Transitioning medical care is going to be interesting. Dr. Leo says that the key will be finding a Dr. Mark equivalent, someone who can oversee my case at large and who I’m comfortable working with. The rest will fall into place eventually.

But in the mean time, I think I might have a case of “favorite patient syndrome”. Not only are these doctors intellectually invested in my case, but over the past two years they have also become emotionally invested in me. They’ve come to know me, which means that they have been amazing physicians who have helped me to grow as a person and to learn to live well with my illness. It means that they have had unique insights into my conditions and have been able to guide me through some very difficult medication trials and diagnostic tests. It also means that it’s hard for all of us to let go. Drs. Leo & Samuel will always be big (positive) players in my time spent here. The fact that they care so much about me means that they like me as a person (despite my awful & challenging illness) and that they believe that things will turn around or that I won’t always be weighed down by this. (Who wants to follow a tragedy?) And it means they’re truly human. My sense of what made them good doctors for me was right. It just makes saying goodbye hard.

Until next time,

Abigail

Reflections with Dr. Samuel

I met Dr. Samuel earlier today to say goodbye & to touch base with him before I leave town.

We talked about my time as his patient & came away with several conclusions. (I’ll list them here so I don’t forget later!):

  • I started graduate school with pretty bad depression that sometimes took over my life. We got that under control within the first few months, and I’ve been doing pretty well since then.
  • I need to have someone continue to monitor the depression & continue prescribing the meds. Weekly talk therapy also seems called for, just because my life (with the chronic illness) is pretty tough.
  • Depression seems much more like a symptom than a root cause. I don’t necessarily need a psychiatrist to monitor the condition as the meds seem to have it under control, therapy should continue to help, and there are other things going on here.
  • One of the major blessings of having Dr. Samuel as my physician has been that any time someone brings up psychiatric origins of my illness, I can say that I have been evaluated by a psychiatrist over a period of time and he does not believe that to be the case. Dr. Samuel says that he would be willing to continue to be that person even from afar.

It’s a fine line to walk between making things up that aren’t true and using the truth to your advantage. Both Drs. Samuel & Mark have talked to me about this. It seems counterintuitive, but for a complex situation like mine, it’s important to consider how doctors think and how to best present my case to them. I think of it as giving a compelling description of a product rather than just trying to increase sales.

water flowing & sun shining
water flowing & sun shining
In other news, Dr. Samuel has been a pretty special doctor to me. He’s been the one who has always seen me as a strong & passionate person, someone who has accomplished a lot. A lot of people in my life go about looking for the silver lining in every situation, but Dr. Samuel has a different attitude. He see me primarily as a creative & determined young woman with a sense of humor. That’s something that endures, rain or shine, something that’s not tied to the circumstances. It’s a vision that not many people have shared with me, but one which has really changed my perception of myself. If I had to pick one person who changed my life while I’ve been here, it would be him. Without a doubt.

So I made something for him. Something that would capture the sunshine, the joy, that he always sees & brought to my life. I wrote a note on the back. I gave it to him at the end of the visit. Something to hang on his office wall. Or something cheery to put in his house. He was really surprised and said that it looked really pretty!!

the note
the note
I know that I’m not a visual person. It took me quite a while to figure out how to capture his attitude toward me as a patient and as a young adult. It made me really happy to make it. And to give it to him. Because sometimes words are just not enough.

Abigail

in a better place

So.. I moved out of the Catholic worker house completely. I am back in my apartment living with all my possessions in boxes, hoping that all of it will fit in the two cars that I’ll have to drive back to my hometown in a few weeks after I finish all my doctors’ appointments in this state!!

Moving out of the house was hard. And to be honest, I was really angry with how it went down. I guess I kind of spontaneously stopped living at the house. I’ll admit that it wasn’t logical; it was emotional. Still, after talking to Aaron and Timothy & Grace, I called my housemates and asked to talk about what was up and the fact that things weren’t working out. By the time we actually had a conversation two days later via text, I got a text that said (essentially), We’d love to have you here but since you’re not sleeping here any more, we have other people who want the space asap. You have 24 hours to move all your stuff. It made me mad. I mean, I guess I wasn’t living there any more. But seriously? We can’t talk about anything? It’s all my fault?

So, ummm, in between being very angry and extremely stressed out, I convinced a friend to help me with lifting boxes, and I talked Joseph into driving his van out to move my furniture. It was a stressful 24 hours, and I didn’t think that I’d have everything packed in time. None of those boxes are labeled; or, rather, I should say that they still have the labels from my move into the house and also from whoever used them before (and before that, too, for some of them!) But I didn’t put things back in the same box they came. So if it says “bathroom”, it’s probably either Bibles or dress clothes. Let’s hope I won’t need anything for a few weeks because I do NOT want to unpack and then pack very many boxes!!

I learned a lot of things from living in that house. A lot of things about myself. Some stuff about other people. One lesson I don’t think I’ll forget really easily: if you have a digestive health problem, you probably want to have a semi-private bathroom.* You can share it with other people. It doesn’t have to be a connecting bath. But a bathroom in the kitchen?? Across the entire house?? A nightmare waiting to happen. If people aren’t looking at you weird because “you were just in the bathroom 30 minutes ago”, you’re tripping over all the bikes in the hallway because you’re sleepily making your way to the bathroom in a very dark monster of a house and it’s the second time this night and you thought you had the geography embedded in your head already. You better believe that I’m looking for an apartment with a semi-private bathroom.

I was really, really angry. Especially since all the packing and the stress aggravated the breast inflammation/pain and woke up the costochondritis monster. The last thing I needed. I’ll be paying for it for a very long time. And really upset for not being heard. Do you know what helped? I wrote goodbye cards to every single person that lived in that house. I couldn’t really honestly write “thank you for your hospitality” cards. But I did get to know each of them a little and get to know what they’re each currently struggling with. So I wrote little notes that said I hope that you find peace in ____ and that God brightens the coming months for you. Something to that effect. Everyone got a different card, and I said something a little different to everyone. It gave me the closure I needed without me pretending that the whole experience was just fine and dandy. Because it wasn’t. (Some things like the bathroom situation weren’t exactly their fault. Other things probably were.) But I feel that I found a way to say goodbye and best wishes and to let them know that even though I needed to move out because it was best for me, it didn’t mean that I hated them or wanted them to be miserable. Because I really don’t.

The bottom line is, though, I’m in a better place. I am finished moving (for the moment). I still get to hang out with Timothy & Grace. Plus, I’m currently on a vacation from my real life and visiting a high school friend and her husband. They’ve got an awesome apartment. It’s really quiet. It has a semi-private bathroom that connects to the guest room. They have a piano. And, they live really close to some of my other friends. I’m happy.

Just the news for now from the person whose life never seems to have a dull moment,
Abigail

** Is this true for people who have permanent colostomies? Maybe there is an upside to that situation. Duncan, can you advise?