Milton made me a friend

In the course of the day, I interact with a lot of people, especially on days when I’m working retail. The store I work at emphasizes connecting with customers, and I do my best to try to make people feel like they matter and that they are contributing to my day. Because they really are. Part of why this job has been so good for me has been the positive energy that just comes from interacting with people.

As I was helping one customer, I noticed that her daughter was carrying a stuffed bunny. It’s different for children to be carrying stuffed animals when they’re taller than the countertop, but even I use Molly & Milton & Eeyore as security objects to survive medical settings and transit stations, so I understand that these objects have their place. Anyhow, I noticed that the bunny she had looked exactly like Milton. It was literally the same size and the same shape and the same color. I’d never seen anyone else with a bunny like that before.

So I just told this little girl that I had the exact same bunny as her. She thought that was really cool. I asked her if her bunny had a name and she said his name was Brownie. Since she was shy but obviously interested in the conversation, her mom asked what my bunny’s name was. I said Milton. That’s when I saw the big smile on her face. She told me that the Easter Bunny brought her Brownie. Did the Easter Bunny bring me Milton? I told her, No. I got Milton for Christmas (from Tabitha).*

She thought that was great. We had matching bunnies that celebrated special occasions. And it made my day. Watching her smile. Knowing that sharing something so small was so important to her. Having the time to be part of her world. And feeling cherished that it mattered to her that I shared something with her.

Abigail

*Now that I check the records, it seems that Tabitha gave me Milton for my birthday. I remembered the Tabitha part, but I wasn’t too sure about the when part….

Looking Back

I’ve been doing some serious reflecting as I’m looking toward the future, and I’ve realized that I’ve come a really long way in the last 24 months. Reading through old emails and paging through my planner, I notice that I was juggling so many things and struggling with managing my healthcare all the time. Now it’s something that I only think about sometimes. Sure, some days I’m really exhausted and only feel like lying in bed all day. But still. It’s nothing like the way that things were before. And, I’m so much happier.

I’m so grateful for the opportunities and blessings that medication has brought me. Taking low doses of the muscle relaxant tizanidine has definitely changed my life. I’m also very thankful for the people that God has placed in my life who have been so generous and patient and encouraging throughout this journey. There’s been the doctors, of course, but also several therapists and my boss at my retail job and my boss at my school. I still wish that my family would be more supportive or even more aware of my existence, but I think my expectations are realistically lower.

Just thinking out loud,
Abigail

Stash Bee Blocks!!!!

I’m really excited about being a part of a quilting bee. It’s my first one ever, and as a historian, it’s pretty exciting to be part of an American tradition.

I’ve just finished sewing my blocks for this month and next month!! Here’s a sneak peek at what I’ve been working on.

January 2014 block

Feb 2014 block #1

Feb 2014 block #2 (with my initials!!)

Disney Princess Personality

I keep thinking that I’d love to be Ariel (minus the skimpy clothing), but I saw this Disney princess personality test this morning, and I took it. I was surprised by the result, but the more I think about it, the more it makes sense. What do you think?

Abigail

Gearing up for a Visit

I’m getting ready to meet Timothy & Grace’s little one. I’m so excited for them and I can’t wait to meet their little daughter. She’s being christened this weekend, and this lucky “aunty” will be there!! 🙂 (weather permitting — dad wants me to add.)

I know that they don’t have space for a lot of stuff plus they don’t really need stuff, but I wanted to bring something to celebrate. I finally settled on these cookies. I got ::gasp:: five boxes of them because they were mega on sale. Grace says that she loves gingerbread, and I think it’ll be perfect for a family celebration, right?

Abigail

PFAM: Holiday Wishes

Merry Christmas readers!! This month, I asked my fellow spoonies what their thoughts were on the holiday season. If they could ask for anything (without being worried about offending someone), here’s what they came up with:

Leslie at Getting Closer to Myself came up with a Christmas wish list of items that she’d love for Christmas. Like my own virtual shopping lists, these include both things that she’s admiring and things that help her as a chronically ill woman, reminding us that while someone is ill, that isn’t their entire identity, so not all their holiday wishes are illness-related!!

Rachel at Fluted Cups and Ampersands reminds us that just because thinking about illness makes you uncomfortable or feel guilty or anything else, it’s okay to talk about it. Part of coping with illness is helping other people around us cope with it. We need people to lean on, and we also understand that you are not superwoman. (That’s part of the miracle of illness; we learn our own mortality but we also become sympathetic with others’ mortality.) Let us help you; allow us to make this a two-way street where you give but you also receive.

Duncan of Duncan Cross points out that holidays can be stressful for those with chronic illnesses. Just because we recognize our mortality doesn’t make us immune to the stress of the holidays. Duncan says that holidays (1) destroy routine, (2) require (physical & emotional) work, and (3) are in the winter. All of these are especially taxing on the ill. So please cut us a little slack. (And Duncan: I didn’t beg; I inspired.)

Elizabeth of The Girl with Arthritis gives a tutorial on how to hug someone with a chronic illness, particularly one with inflammatory arthritis. If we somehow summoned the strength to make it to a holiday event or even to crash on your couch, we’d prefer that your gratitude not make our condition worse. Learn from Rachel on how to safely hug someone who’s physically hurting. And think about waving or shaking forearms (instead of hands) to reduce the amount of germ-spreading. We’d be eternally grateful.

Ms. Rainbow of RARainbow quotes the Dalai Lama saying: “Our prime purpose in life is to help others. If you can’t help them, then at least don’t hurt them.” Instead of bullying someone whose life is different than yours, learn more about their situation or just smile. Even the smallest act of kindness can mean the world. (Ms. Rainbow, great quote by the Dalai Lama; I’ll have to file that away with my memory of meeting him!!)

Rihann Louise of My Brain Lesion and Me notes that “Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.” It’s so true. I’ve started writing holiday cards to the people who have been the most supportive. Just writing a note saying why they’re so valuable to me as friends has been profoundly therapeutic to me and also fits right into the spirit of the holiday. Because really that’s what we need the most: your support. (At least that’s my holiday wish.)

That’s all, folks, for this month’s round of Patients for a Moment. Look for some new and exciting things happening in the new year. Among them, Duncan Cross, founder of PFAM, is starting an online book club for patients. Every three months, the book club will read, review, and discuss a book about illness and disability. If you would like to participate, or suggest a book, get in touch with Duncan at dx@duncancross.net. (Note that both I and Leslie already have book lists, so if you’re looking for some “light” holiday reading, here are some suggestions.)

Best wishes and happy holidays,
Abigail

Quilting in Public

the hexagon quilt I was working on

I did it!! My first time quilting in public.

I’ve been working on a hexagon quilt, and I’ve been piecing the whole thing together by hand. I brought a portion of it with me to my therapist’s appointment. I knew that I would have some random downtime (10 minutes here, 15 minutes there) and so I figured that I could make some progress on the quilt. And I had a really grand time.

Because I was quilting in a public space where most people just sit there waiting for their turn, a number of different people came up to me and asked to see the quilt. My therapist wanted to see it, and I got to show her how I incorporated different fabrics that held different meanings for me. Other patients and some of the staff stopped me to take a look. I even got to show the project to a little girl.

All in all, it was really cool experience. I definitely plan to continue hand quilting projects so that I can craft in public. I finally figured out what Future Girl is always raving about!!

I’m really excited about the opportunity. I feel like there’s this whole part of me that hasn’t really emerged outside my room and maybe the internet. I read a lot of blogs and books to get ideas, but I’m mostly making things up as I go. It’s awesome to get validation for what I do. But it’s even nicer to put that creative side of me out for the public to see. I think it’ll be a while before music really emerges again for me, at least from a performance perspective. But this is something totally new. Something I only picked up because of my illness. (Well, I always wanted to learn to quilt. But illness finally created the time and the patience to teach myself.)

A pretty happy day overall,
Abigail Cashelle

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

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

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 which Timothy makes my day

I went to visit Grace this afternoon, and it happened to be Timothy’s day off, so I got to see him as well.  Timothy had stumbled across some old music that someone had put in a discard pile at work, and so he brought it home, figuring that someone in the community who has a piano might want some sheet music.

Well, I don’t have my own piano (yet), but I do have a very awesome collection of old hymnals. I like having music to just play through on my violin (since I don’t have a piano yet.) I took about 8 months of lessons with Alana, so I can fumble through the violin alright.

Anyhow, I like collecting old hymnals, looking through different ways of scoring music and older versions of tunes we know.

So Timothy suggested that I take a look at the trash-turned-treasure. It turns out that it was three books from pre-WWI that were used for teaching high school music and choir classes. Nowadays, music teachers use iPods or CDs, but if you can imagine back to the days before cassette tapes, radio, and even phonograph records were common, the music teacher would have to play all the accompaniment herself!! That’s why back in the day, it was really common to have a piano in every classroom. And why piano was such a fundamental part of grade school curriculum.

Anyhow, these books are scored from a fairly advanced pianist, not just someone who took keyboard for a year in college. They’ve got a lot of old classics in nice settings: some scored for piano, others scored for voice. I’m excited!!

Too bad I’m not in a classroom at the moment. Otherwise, you’d hear some banging away. And my students would be singing presidential campaign songs or something.

Maybe I should go back to teaching Sunday School music….

Abigail

I see a Pattern

I like making other people happy. It feeds my soul. I can’t explain it. But I live it. Every day.

I have a bulletin board in a my study. I was looking at it the other day. I started to see a pattern.

That makes three prayers, and three quotes, and five thank you notes. Let’s break that down:

Prayers:
– the Lord’s prayer
– a prayer for quiet confidence
– a prayer for before worship

Quotes:
– At any given moment, you have the power to say: This is not how the story is going to end.
– Peace does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of all these things and still be calm in your heart.
– “Flowers don’t worry about how they’re going to bloom. They just open up and turn toward the light and that makes the beautiful.” Jim Carrey

Thank You notes:
– Bethany’s mother-in-law: I made her a New Year’s apron after she commented how she loved the Christmas apron I made for Bethany
– cousin & new wife: I etched their names on the sides of glass casserole dishes; she said that every time they look at those dishes, they smile, (and they look at them a lot since they participate in a lot of potluck dinners!)
– Gretchen’s best friend & new husband: Gretchen talks to her best friend every single day (it seems) so I felt like I practically knew her by the time of the wedding…. Gretchen & I wound up making paper roses out of pages from Alice and Wonderland for wedding favors, so I took the cover of the book and framed it. They loved it!!
– high school friend & new husband: I just sent a congrats note with some recipes (since she asked for those)
– Hannah: still loving the baby blanket

That’s what’s decorating my office!!
Abigail