The path of love

Ann and I were born two years apart. When we were little, people used to think we were twins. I never thought of myself as the sibling of a disabled child. I’d been with Ann all my life, so I was used to her. I knew she wasn’t as good at playing as I was—physically I could beat her every time, run faster, jump higher and she took longer in the mornings to get ready than I did. But looking back, I guess there were lots of signs she was different. I know it took my mother years of going to doctors to figure it out.

When Mom finally found a doctor who knew what the problem was, rheumatoid arthritis, she was so happy that there was something she could do to help Ann. I remember a frenzy of activity. Ann had to go on a strict diet to lose weight. (I wonder now why they didn’t put me on it too. I needed to lose weight, and we could have done it together.) She took hot baths in the morning to loosen her joints, she had lots of blood tests and was put on a regimen of eight-10 aspirin per day. She took extra v itamins, including vitamin K to help her blood clot because the aspirin thinned it out.

Somewhere around this time Ann and I were having an argument and I went into the bathroom and slammed the door. I didn’t know her hand was there, and I smashed her fingers in the door. I thought I was the worst person in the world for hurting my sister with her arthritis. I felt responsible for everything. Not only could I run faster and jump higher than Ann, I did lots of things first. People started thinking I wa s older than she was. I know that made her angry and me uncomfortable (but also somewhat complimented).

Then, suddenly Ann needed surgery to have her jaw repositioned. We were told she would lose all her teeth if the surgery wasn’t done. They were going to break her jaw and move it and wire her mouth shut. It was a very big deal to a teenager and I was really worried something terrible would happen—I imagined her jaw falling off—and all of this was going to happen while I was away at summer camp in In diana! I was extremely upset not to be there, and the worst part was that there was going to be a second operation, over Christmas vacation, to turn the deformed bone in her chin around to finish off her jawline. I couldn’t bear to think of Ann in the hospital for Christmas. What joy there was when she came home on Christmas day. It hadn’t felt at all like Christmas Eve without Ann there to share it.

I was proud of Ann and her accomplishments. She was an artist, a really good one. In her sophomore year at Skidmore she tried out for a play and landed the lead, winning awards and changing her major to theatre. She is one talented person. We used to say, “You have more talent in your little finger ... ” and she’d whip out her pinky and put it in the air. It seemed like the world was ahead of her then, hers to own. Perhaps that’s why it’s so sad about her hands right now. Sometimes we joke now about her “dead pinky.”

Ann lost her wonderful sense of humor for a while after neck surgery, which happened just three months after she got married. It began a downward spiral which ended when she left her husband six years later. We went through the diagnosis of autism and mental illness with her children together. She found her sense of humor again. It is not the same carefree humor. It’s darker, more human, sometimes more sarcastic. We also cry together, but it’s the laughter that sustains us.

Because we have the same reference points, we don’t have to explain everything. Sometimes we know what the other is thinking or feeling without having to say a word. There is the knowing glance and the outburst of laughter or tears. We know. But closeness can also be stifling. And sisters cannot sustain one another through everything. We each have our own families and when we are together the lines get blurred.

I need time apart as well. Sometimes I just want to be left alone, untouched, uncalled for, alone. I resent the intrusions. I know in my mind that I am the only other adult Ann has to turn to, but there are mom ents, especially when she is dependent on me for so many things following surgery, when I don’t know how I’ll find the strength to go on. It makes for a messy emotional life. Muddling on, trying to keep ahead of the mess and the junk, trying hard to bring up good and responsible children. It gets complicated.

Yet I miss her on the days we don’t see each other. That’s the problem. The conflicting emotions—love, compassion, resentment, guilt. Can you feel them all at once about the same person? Yes.

H ow did we get here? Me, the younger sister, the caretaker, and Ann, the eldest, the cared for? The road is thick with twists and turns. The path is laden with guilt, sorrow and anger—like going through the spooky forests. But the path was laid down with love. That’s ultimately where it comes from and where it goes.

As the clock struck midnight on Christmas Eve in 1972, I was alone in a hospital room at Columbia Presbyterian Medical Center. I was recuperating from my second arthritis related surgery. I had my Scarlet O’Hara moment and vowed that I would never again be in the hospital, that I would beat my disease. A teenager, in heavy denial, and anxious about recovering from my second jaw surgery, I had no idea that i t was only the beginning of my dance with this disease.

My best friends call me Annie, Annie J. all the way. I used to be an actress. I was an artist. I love the arts. I have a son with autism. My daughter has an affect disorder. I cannot slice myself an apple. I have arthritis.

There are many A words in my life. Arthritis is one that had no voice for a long time. About 30 years ago today, I was riding home from a doctor’s appointment with my mother. Just the two of us in the car. Jerry Jacobs, a na tionally known pediatric rheumatologist had confirmed my diagnosis. Juvenile rheumatoid arthritis. I just wanted to be like the other kids. I wanted to be liked and accepted. I didn’t understand how a kid could have arthritis. I felt like a freak. I had an old person’s disease. How could I tell anyone about it? I was 13. I wanted so desperately to be liked, to fit in. It was death to stand out.

I must have made my mother crazy during that ride. We didn’t talk about the diagnosis or what it meant for h er, for me. I kept asking her what time it was. I was late for Lauren D’Ablemont’s birthday party and I hated going late to anything because I would stick out. No one could tell that I had arthritis by looking at me, except for an arthritis doctor. I could keep it a secret. I would do everything the doctors said, I would be a good patient. The good soldier. And so, that’s how my relationship with my disease started. In silence, in secret, making secret deals with myself.

My younger sister developed ear ly. She was the pretty one; she was smart. She was dating boys in my class. She moved out of the room we shared into her own room. We never talked about my arthritis. I never talked about it with my parents or my brother, either. I never talked about it with friends. I was alone with it. Just as I was alone in the bedroom I once shared with my sister. I was lonely.

On a recent visit to my hand surgeon to have my stitches out after my fourth hand surgery, my sister and I were sitting together in the ex amining room. The door was open and we could hear Dr. Raskin talking to the patient in the next room. Edie and I had been singing and talking to pass the time—finishing each other’s sentences, laughing. We heard the woman complain about the pain she was feeling in one joint of her finger. Edie said something to the effect of “Take two aspirin and call me in the morning,” and then we both laughed so hard I almost fell off the stool I was sitting on. She gave me a tissue. Edie knows that I live with a great deal of pain every day, every minute. I don’t complain, and humor has kept me going in dark moments. There I was with 16 pins in my fingers and the woman next door was carrying on about one little joint.

It isn’t easy to be dependent on someone else for the basics in life—daily hygiene, dressing, help with fixing food and eating. I have to wait sometimes for when it’s convenient for Edie to take care of me, or transport me to an appointment or drive me to do errands. There are times when Edie is tired or stressed or feeling poorly and she is crabby or rough. If I make a comment or flinch, she gets mad at me. Then I get mad at her getting mad at me.

It was during my separation and divorce that I learned to make peace with my chronic illness. I’ve tried many medications and therapies and diets. The arthritis never went away. Flare -ups come, but they go too. My hands and body work differently from the way they did 10 years ago, 20 years ago. My medical issues are like those of geriatric patients.

Edie’s my caretaker now, like my parent, really. Or, like a daughter, caring for me in my old age, although I’m only 42. Edie has been my significant other since I moved close to her when I left my husband seven years ago. She is the one waiting when I emerge from the hospital recovery room. She is the one to pour my drink, pat my hand, walk me to the bathroom, fluff my pillow, read to me, answer my phone. She takes me home from the hospital and to doctors’ appointments. She brings me food. She helps t o bathe me. She helps to dress me. She takes care of her family and mine. My children and I will always need the help of others. Each of us will always have to struggle with our diagnoses and treatment. We will struggle to fit in with the world. We are each more than our diagnosis. Not many people understand this unless they’ve walked the walk—unless they have experienced it themselves.

Edie doesn’t have arthritis. But Edie understands it and me more than anyone else I know. I am blessed.