Sunday, February 20, 2011

When Love Isn’t Enough

Above is my “love note” that was printed in the latest issue of Lupus Now magazine.

Why the public declaration of love? Because in the dictionary, love comes before lupus. Coincidentally, it also comes before rheumatoid arthritis, too. (Lucky me!) Because I’m in love; every hour of the day, every day of the week.

But I guess that doesn’t matter now. What I intended to write here isn’t what I’m going to write, because what I was going to write about doesn’t exist anymore.

My relationship of over a year is over. And honestly, I’m as shocked as you are.

Devastated doesn’t begin to sum up the way I feel right now.

Relationships are hard. They take work. And you don’t just take what we had and throw it away, especially without so little of a coherent explanation. It just doesn’t make sense.

I remember our first date like it was yesterday, and our second, and our third, and our fourth. I remember how my head fit perfectly into the crook of his arm as we slept. I remember the way that he took care of me when I was in the hospital, how he stayed with me all night in the ER after working for 24 hours the night before.

But I’ll also never forget the look on his face when he said, “I need to talk to you.” And I’ll never forget the pain of having to pack up my stuff from his place, to exchange keys, and say goodbye. I’m nauseous just thinking about it.

Or the way he cried, too. But if doing this is so upsetting to you, why did you do it?

Right now there are too many memories. Too many unanswered questions. Just too much.

Does love conquer all?

I don’t know.

Does love heal?

I don’t know.

But I am certain that love helps, especially when you find the person who is the missing piece to your puzzle.

The thing is, I really thought that I had found that person. What’s more, I wasn’t scared anymore. Well, that’s not quite true. I did worry that at some point, sooner or later, this would all become too much for him, and he’d realize he signed on to a nightmare.

But now I’m the one in a nightmare that I wish I could wake up from. I saw myself marrying this man, and having children with him, and coping with the ups and downs of illness together. No matter what, we would get through it together, as long as we had each other.

I loved, and still do, love this man with all my heart. Together we made sense, or so I thought.

I’m scared, first, of living a life alone that was once so entwined with someone else’s. How to be single again? How not to go to his place or call him on the phone to share the events of my day? How to live with the specter of illness, as a never-ending cycle, without it mattering in intimate ways to another person? And I worry that my health, which in some ways was relatively stable while I was in this relationship, won’t stay that way.

I know that ultimately, I will survive this. That’s what I do. I survive and I soldier on. Writing helps me cope, so I’m sure I will be sharing more with you as things become clearer, although I’m not so sure they ever really will.

In, reality, illness took a backseat to love. So now I’m left with me and these illnesses, in a world that makes no sense at all. And for right now, that has to be enough.

When you look in the dictionary, love comes before lupus and rheumatoid arthritis. But there’s a single letter that comes before all three of those things: I. No matter what, I have to love myself.

Monday, February 14, 2011

Modern Medicine's Biggest Failure

OMG!  Do I really look like this when I talk?  Anyway, this is the prednisone vlog.  I'll warn you, it is a bit on the long side (about 11 minutes), but there is a bit of repeating.  I hope to try and do one vlog a month.  Let me know what you think about this one, and feel free to give any suggestions you have about the topic of future vlogs.   

Monday, February 7, 2011

Guest Blogger: Carla Ulbrich

I recently read “How Can You NOT Laugh at a Time Like This” by Carla Ulbrich. Carla is a fellow lupus blogger and her blog persona is The Singing Patient. I’ve invited Carla here today to tell you a little bit about herself and her book.

What does the title “How Can You NOT Laugh at a Time Like This” mean to you? (And by the way, the cover is super cute!)

CU: Thanks! I’m really happy with the cover art (I can’t really take credit for it – it’s all the graphic designer, Linda). I’ve been dealing with several chronic illnesses for years. One summer, my kidneys were failing and my legs and feet were so swollen I couldn’t wear shoes. My only pair of shoes was a giant poofy pair of Snoopy slippers. I wore them everywhere – the drug store, the doctor’s office. I got some really weird looks and comments. I had to use a cane to get around, and I walked really slowly. And I spent a half hour every morning getting on my compression hose. In the summer. In South Florida. And it seemed like every time I went to the doctor, I would leave just as the sky opened up with an afternoon thunderstorm. And me with no umbrella, walking through puddles in what were now essentially 2 giant sponges. Well, if I couldn’t find that funny, I was just going to be pretty ticked off on a regular basis. Somehow it went past the point of being annoying and embarrassing to just being ridiculous.

To me, it means when things are really bad and you just can’t take it anymore, you’re either going to cry, strangle somebody, or laugh. And if you’re sick, then you’re too weak to strangle anyone. And laughing is so much more fun than crying. They’re both great releases.

Comedy, they say, is pain plus distance. When everything is falling apart around you, it’s kind of a gift from the comedy gods – it’s half of what you need for great comedy. The more painful it is now, the funnier it will be when you have some distance from the situation. You can either create distance by letting time pass (“we’ll laugh about this later”) or by just mentally stepping outside the current situation and seeing the absurdity of it.

Laughter helps you relax, releases endorphins and lowers blood pressure. And humor helps you to gain perspective. It can seem impossible to laugh when you’re in the middle of a really tough situation. But the thing is, who needs a laugh more than someone who is suffering?

In the book, you write about the importance of humor in healing; can humor also be hurtful?

CU: Yes, of course. Humor can be mean. I think we all remember being taunted in the schoolyard. Some of those comebacks and nicknames were pretty witty, but they were mean-spirited. It’s really important that we avoid laughing at other’s pain when they are suffering, at least until they are able to laugh at it themselves. At one point I had lost my hair and was wearing a wig. I was at a folk festival with friends, and we were hanging around backstage cutting up, and I was laughing so hard I lost my balance and fell over. And my wig fell off! My friends all showed concern and helped me get back up. Then we had a good laugh about how I literally had laughed my head off. But if they had started laughing at me before they were sure I was okay, it wouldn’t have been funny to me at all.

Your blog persona is the Singing Patient. Did you write the funny medical songs on your CD Sick Humor while you were sick? Was that hard to do, or did it help you cope?

CU: Yes, I wrote them while I was recovering from a pair of strokes. Even though I was writing about my problems, the act of writing humorous songs about my current situation was a great distraction. It helped me step outside of what was going on and find the humor in it, and also helped me feel like myself, because I am a songwriter, and I was back to doing what I do. I find creativity to be so life-affirming. And as a huge bonus, it gave me something really fun to do during those long waits in the doctors’ waiting rooms.

So were you a musician before you got sick? Or did you start writing music to help yourself cope?

CU: Yes, I’ve been playing guitar since age 4 and writing songs since high school. I always wrote songs about difficult things I was going through – boyfriend problems, annoying roommates, difficult teachers. So I suppose it was natural to turn my lyric-writing efforts towards illness and medicine when that became the main struggle in my life.

Do you consider your book to be an illness memoir?

CU: I don’t think of it as an illness memoir so much as a collection of thoughts about what I’ve learned over the course of 19 years that I think might help other patients. I wanted it to be in bite-size chapters that stand alone, so that you could read it on the toilet – because heaven knows when you’re sick, that’s your second home.

You have lupus, but your book certainly seems to appeal to people with a variety of chronic illnesses. How did you do this? Was this intentional?

CU: That’s great to hear. Because my illness led me to a lot of specialists, and lots of drugs, and multiple hospital stays, I think I wound up with a lot of experiences that everyone who has any illness goes through. It wasn’t intentional, but really for the most part it does seem our struggles are the same – trying to get good care, struggling with blaming ourselves, seeking balance and meaning, dealing with friends and family.

In 2002 you had a pair of strokes that left you unable to use your left hand for months. Were you scared you wouldn’t recover?

CU: I would not allow that thought to take hold in my mind. I just refused to believe it. I did all kinds of crazy things to get my left hand to work again, so I could play guitar. I squeezed a tennis ball, I got a cheap ukulele and glued corn pads to my fingertips, I put those rubber tips that cashiers use on the ends of my fingers, and I talked to my hand (“talk to the hand!”). Most of all, I believed. I believed I would play even better than I did before the strokes.

What inspired you to write your book?

CU: Getting a book deal.

I wanted to write a book about this for years, to share with others in a neat package all the ways that I’ve found to make the challenges we all face more bearable. But seriously, a deadline is amazingly inspiring. I would not have a book without it.

You’ve performed your humorous medical songs as "The Singing Patient" for organizations such as the Lupus Foundation, Medicaid, the Alaska Palliative Care Conference, and Nursing in Practice. How do you make illness and pain funny?

CU: My number one rule is to only joke and sing about things I’ve actually been through. Since comedy is pain, and someone has to be the person in the joke experiencing the pain, it is best if it is me. I don’t want other people laughing at my pain until I give them permission, and so I don’t laugh at theirs.

Are you well now? How do you stay healthy? Do you think you’ll get seriously ill again?

CU: Yes, I’m doing well now, thanks for asking.

I am on a gluten-free, vegetarian diet. I do chi gung. I work out. I have a great husband and a sweet dog, and we usually have a good belly laugh every day.

What have you learned from your experiences?

CU: Friends are everything. Creativity is healing. Laughter is a great release valve. Pets are angels covered in fur.

I can have a tremendous impact over my own well-being. I am not a victim of illness. I can get better. I can get my life back. And from that, I’ve learned that I can make a lot of other dreams come true as well, by deciding to pursue them, asking for help, and believing.

What do you hope readers will get from your book?

CU: Hope, and the ability to find humor in tough times. A few good laughs. And some ideas about dealing gracefully with chronic illness. Most of all I hope they feel less alone and more empowered.

What’s next for you?

CU: I’ve been doing more and more performances for medical events as The Singing Patient, focusing on the funny medical songs I wrote when I was recovering from the stroke. Those shows are really rewarding. I feel like I can make a difference in that setting. I like to help people laugh at things they never thought they could find funny.

Thanks, Carla, for making me laugh out loud many times while reading your book. I’ll admit that I was a bit skeptical about a book about illness that relied mostly on humor. But it’s all good! And thanks for stopping by Getting Closer to Myself today.

Be sure to check out the shout out I gave to the book in my first ever vlog, and make sure you head over to Lupus and Humor and say “hi” to Carla (a.k.a The Singing Patient)!