Monday, September 14, 2009

Joy in invisible illness

Over a period of ten years, from the time I was 14 until I was 24, I was repeatedly told that I had chronic illnesses or chronic pain that could never be "fixed" and would most likely be with me until the day I die. First it was learning of the structural problems with my ankles (7 different structural issues), then my knees (5 structural problems there), then the "loose joints" that leave me with chronic tendonitis in all of my major joints, then the 24/7 allergies and chronic sinusitus that, thanks to genetics, doesn't respond to treatment, and finally chronic migraine disorder.

I'd be lying if I said that all of these piled on each other didn't leave me feeling hopeless and depressed. Many nights I would cry myself to sleep, not sure I could handle all of the stress that came with these things on top of all the regular stress of life, especially with grad school and teaching thrown in the mix.

Especially after being diagnosed with chronic migraines - where, without preventive and abortive meds, I was in constant pain for weeks on end - I had to learn how to find joy through the pain. So here's my list of things that bring me joy - because chronic illness doesn't mean we have to lose our joy. It might dampen it once in a while, but we don't have to lose joy.

1. My faith - bar none, my joy comes from God. He gives us joy in abundance, because He loves us with an everlasting love. Without Christ, I'd be so lost, I don't think I'd ever recover.
The LORD has done great things for us, and we are filled with joy.~Psalm 126:3
Unless the LORD had given me help, I would soon have dwelt in the silence of death. When I said, "My foot is slipping," your love, O Lord, supported me. When anxiety was great within me, your consolation brought joy to my soul. ~Psalm 94:17-19

2. Music - on days that I feel great, singing and playing music on the piano or guitar are great sources of joy. But even when I'm at my worst, and I can't function at all, I listen to music. I take comfort in the beauty of the notes, in the passion of the lyrics, and let it move my soul. Some of the artists whose work is comforting to me, either because of the sound or the lyrics, are:
*Loreena McKennitt - her music is soulful and often quiet, and I love the international flavor
*Alison Krauss - the part of me that is amazed by bluegrass music loves her fiddle playing, but her lyrics are also often contemplative, which is often what I want when I'm feeling badly.
*Randy Travis - I am head-over-heels in love with good baritone and bass voices, and so I could care less what he sings about, just as long as he goes low. :-)
*Jaci Velazquez and Legado - the latter a Christian latina duet I found in the mid-90s, this gives me my Spanish kick, but both are primarily about worshiping God.
*Michael W. Smith - his worship music is some of my favorite, for it's always annointed.
*Gin Blossoms - my friend Kevin gave me their cd from the mid-80s, and I love it. A little rock, but not so hard that it hurts my head.
*Sarah Bareilles - silly pop music, but I love the piano arrangements she has, with just the right amount of attitude for when I'm a little annoyed at my body.
*And most of my Broadway soundtracks, Lord of the Rings soundtracks, and any other worship music I own.

3. My friends - I don't have many close friends, but those who have stuck by me, through the depression and the pain, are pure blessings. Even if I can't spend as much time with them as I'd like, I treasure any time I do get to be with them.

4. Cuddling with my cat - sounds silly, but I have such a skittish cat, and he's so stand-offish with everyone else in the world that just the fact that I can cuddle with him and that he sleeps against my leg every night brings me untold joy. It's nice knowing that this little creature trusts me completely. And his purrs can make even the worst day better.

5. Cycling - I never thought, with all of my health problems, that I'd be able to engage in any sort of strenuous exercise. But almost a year and a half ago, I bought a bike and was determined to become a bike commuter so I could escape public transportation every day. It took a lot of effort, and a lot of practice to figure out how much my head could handle, but after a year, I have biked well over 1,000 miles. When I'm biking, especially for recreational rides on the weekends, I feel free. Other than when I'm singing or playing piano, it's probably the only time that I don't feel like I'm living with chronic illness. I feel almost normal for the time I'm on the bike. It's been one of the biggest blessings in my life.

6. Writing - Whether on my blog or in a private journal, I've found that one of the best ways to move through the pain is to write. Sometimes it's just saying how I feel. Sometimes it's writing poetry or songs. Whichever it is, it helps me to name the bad stuff and the good stuff so I can celebrate when the good things happen.

7. Cooking - I don't always feel well enough to cook, and I confess that I rely on fast food probably too much - hazards of living alone and dealing with tons of stress and pain. But on the days that I do feel good, I absolutely love to cook. I rarely use recipes, and prefer to just experiment. My ultimate joy comes from when I feel good enough to cook for someone else. It doesn't happen often, but when it does, I am so incredibly happy.

8. Sunsets - Living in the desert, we have amazing sunsets. Even on my worst days, the desert twilight is enough to make me get out of bed, with ice pack on my head, and stare out the window. To me, sunsets are like a small glimpse of the glory of God.

All of these are just part of the little things that I can sometimes overlook when things are bad. But they all are sources of great joy. Over the past 14 years, I think one of the greatest lessons I've learned is to let yourself revel in the little things. Even if they seem tiny to you (or to someone else), every joy is a victory.

To end this very long post, a poem I wrote in the midst of pain:
There is beauty in the world
~Can you see past the ugliness?
There is joy in the world
~Can you feel past the pain?
There is love to be given
~Can you receive it through your hurts?

I want to see beauty, feel joy, experience love
And yet something holds me back
The pain washes over me like a flood
And my heart shatters once again

How do you move beyond the pain?
How do you see past the ugliness?
How do you feel when it hurts so much?

There is beauty, joy, and love in the world.
Can you see it?


More Than Science said...

Thanks for sharing, I didn't know that the term "invisible illness" existed but now I do.
How was Spain?

Melissa, Multi-Tasking Mama said...

What a beautiful post! I so agree with you that I wouldn't get through any of this without Jesus! And, while I am talking about things we have in common, other than invisible illness, I love Allison Krauss and writing is my vice as well.

Rachel said...

@More Than Science - Spain was phenomenal. I'm totally in love with Sevilla, and getting ready to head to Barcelona next month for 7 weeks of research. I'm really excited! How is your dissertation coming?

Rachel said...

@Melissa - Thanks! I see that you follow the LPM Blog, too! Were you able to attend the simulcast a few weeks ago? I attended and was so incredibly blessed. Thanks for visiting the blog, and I hope you come back soon!

Trisha Pearson said...

What a wonderful, positive post! I also have a cat that is afraid of everyone else but cuddles with me and makes me feel better. I often feel he's an angel in disguise as a cat! Animal friends are such a blessing.

Rachel said...

Trisha - thanks! Thanks for coming to the site, and for the lovely comment. Cuddly cats do wonders, don't they? I hope your fibro is being kind to you tonight!