It Takes A Village To Help A Sister
My sister Beth, earlier this spring
Last Wednesday, two weeks before my sister Beth’s fiftieth birthday, my phone rang. I saw her name on the caller ID and was baffled. It was only nine thirty in the morning, and she rarely takes her lunch break so early. I snatched up the phone, expecting her usual, sing-songy “Hi, Sis. Thiz Chatty Beth.”
Instead she said, “My side hurts.” Her voice had a gasping, panicky tone, as if she was holding back tears.
I sat up at my desk, on full alert. This is the opening to a call you do not want to get from someone you love, and especially not someone who needs a little more help to get through life. My sister Beth has an intellectual disability, and although she’s confident and self-reliant, has a boyfriend and an apartment of her own, and has carved out a very social life riding buses all day, every day, I know I need to help when she needs me.
I’ve always known that. She’s eleven months younger than I am. On her birthday we’ll be twins for the next month.
I kept my voice calm. “Does it hurt a lot?” I said.
,
“A lot. And I’ve been throwing up all morning.”
“That doesn’t sound good.”
“My aide’s coming to take me to the doctor.” She pushed the words out through what were obviously volleys of pain. “At ten.”
“Do you want me to come to you?” Beth lives a couple of hours away, even if I broke speed limits all the way there.
“You don’t have to. She’s taking me.”
“Maybe you should go to the hospital.”
“I’m going to the doctor!”
“Will you call me as soon as she sees you?”
“Yeah.”
“Do you want to stay on the phone until your aide gets there?”
“She’s gonna call so we can’t.”
“Then tell her to call me, okay?”
“Yeah,” she said, and she hung up.
I sat there, my heart pounding. I have no medical training, but these sounded like serious symptoms. I wanted to do right by her, but she didn’t tell me to come. My friends with kids have told me about calls like these, when their daughter or son phones in the midst of a crisis, not knowing what was happening, wanting to connect but not wanting their parents’ help, and maybe living too far away for help to come galloping immediately there anyway. My friends have told me about the fear, the feelings of powerlessness, the time-stopping descent into hell of not knowing how bad this might be.
Having a sibling with a disability is not like having a child. For one thing, Beth has always been there; unlike parents, I knew no Before.
For another, everywhere you look, a substantial number of the adults you’ll see are parents, so, as singular as your problems with your child might be, you can take comfort in knowing that you’re far from alone. But special siblings, far less common, might know few, if any, others like themselves, so the sense of aloneness, of having to figure it out on your own, of having no one except a handful of other siblings who truly understand, can be profound.
There are many other distinctions between having a child and being a sibling to someone like Beth, but the one I have the opportunity to notice most often is that sometimes Beth wants to me to do the things a parent might do, like pay for her meals when we go out, attend meetings with her aides, answer questions she’s too embarrassed to ask anyone else. But other times she wants me to be only a sofa-sharing companion while watching DVDs, a supermarket chauffeur who lets her buttons get pushed, an engaged listener to endless bus-related gossip, a tireless back scratcher who expects to get teased for eating soy yogurt, agrees to watch Shark’s Tale for the thirtieth time, notices that each toenail is painted a different color, and knows not to step on the purple rug—i.e., she wants me to be a sister.
Being the sibling of a person with special needs means being a shape-shifter. Which is why, when she didn’t ask me to come meet her at the doctor’s, I didn’t just don my parent cape, jump in my car, and fly up to see her. I stayed dressed as an ordinary sister and waited by the phone at home.
Years ago, I struggled with just about every aspect of our relationship. Then I rode the buses with her, and came to terms with many things about her, about myself, about the unique nature of the special sibling relationship. I recounted my experiences in a book, Riding The Bus With My Sister, which became a movie. But my story with Beth has, of course, continued after the last page and the final credits. That’s the real difference between being a sibling of someone like Beth and being a parent. The lifelong worry of After.
When I was a kid, After meant after our parents passed away. I knew, as did my brother and other sister, that we were expected to step in and be there for Beth after they were gone. As a child, I just accepted this as a fact of my life, but by my college years I’d come to dread it. How would I know what to do? What if we weren’t getting along, as was the case then? Why wasn’t I free to live my own life without this responsibility?
Then Beth entered the world of adult services, and we were lucky enough to find an agency that treated her well. They got her an apartment when she didn’t like the group home. They gave her good training in independent life skills. They hired aides who often stayed with Beth for years. With their support, I no longer had the worries I’d had about After. I could choose to be there After, but it wasn’t a requirement.
I chose to be there.
And then I started to realize there was another kind of After.
What happens After one of us begins to lose the vigor and health we’ve both enjoyed through our half century together? I hate to say this, but I’ve always hoped she would lose it first, so I could—if she wanted—accompany her to doctor appointments and keep her company if she grew weak. Yet she’s always seemed so robust, so unstoppable; even with a cold, even in a blizzard, nothing will keep her off the buses. What will it be like to watch the decline of the willful, energetic, Croc-addicted, Winnie-the-Pooh-adoring, always-in-my-life force of nature known as Chatty Beth? (She was Cool Beth for a long time, but switched to Chatty Beth when a new, favorite bus driver was amused by her talkative ways.)
I haven’t wanted to think about it. Not only can’t I imagine her not being there, always eager for a visit, a call, a letter, and money to buy her ice-cream. But I’ve known siblings who’ve lost their Beths, and have told me that the absence and grief is made all the harder by people who just don’t get it. One friend told me that, soon after her sister’s funeral, people said to her, “You must be so relieved.” She wasn’t relieved at all; without her sister, she felt forlorn, and given that kind of reaction, she felt abandoned.
It’s ironic. Being a sibling of a person with a disability means always feeling connected to someone else. Yet because of the way our society thinks of that someone else, it also means feeling far apart from others.
Fortunately, because of my book, there are hundreds of thousands of people who do think about Beth. Many of them are also siblings, or parents, of people with disabilities. Or they have disabilities themselves. And they know her life is worth as much as any other life, and would never dream of saying, “You must be so relieved.”
Yet there I sat, after she’d hung up, feeling all alone. I wasn’t at her side as she hurried to the doctor. I wasn’t speeding down the highway to meet her at the hospital.
Only later did I learn that I wasn’t alone at all. When the day had begun, and she’d insisted on getting on the bus despite the pain in her side, her bus drivers took stock of the situation. When she began to throw up, they urged her to go home, call her aide, see the doctor. When her aide came, they rushed to the doctor. When the doctor saw her, she sent them to the emergency room. When Beth called her boyfriend from the hospital, he rode his bike right there.
I learned most of this a few hours later, when another one of Beth’s aides began calling me with updates. Over and over she called, as every little piece of news developed. That’s when I found out that Beth had many people who’d been ready to help out. That’s when I found out that, after an early suspicion of diverticulitis and the discovery of an excess of white blood cells, and then a CAT scan, an IV, and morphine for her pain, her aide and her boyfriend stayed by her side. She wasn’t alone.
And, because of the kindness of her friends on the buses, and the professionalism of the people who work at her agency, and the devotion of her boyfriend, neither was I. I might have been sitting alone at home, holding my breath. But I was one of many who encircled her, waiting for the answer, hoping for the best.
Finally, at seven o’clock, she called. This time there was excitement in her voice. They were releasing her, she said, and she couldn’t wait to get home. Her aide got on the line and explained that Beth had had a kidney stone, which she’d passed while she was in the hospital. She was also found to have a slight case of pneumonia. Oh no, I thought, imagining her blasting onto the buses the next morning. But then I learned that, when Beth called a bus driver to tell her, she was told she simply had to stay home the next day and fill the prescription the hospital gave her and take it easy and that was that. And so, Beth told me, she would.
I went to see Beth a few days later. She seemed a little lower in energy than she often does, though I’m not sure if that was because of the pneumonia. In fact, one of her drivers said to me, while I was there, that maybe it was a misdiagnosis, because, after her one day off, Beth had gotten back on the buses and ridden with her usual gusto. The downshift I saw in her energy was probably more related to her having fallen over an uneven sidewalk when she went out to get the prescription filled. She’d hit her forehead and gashed her knee, which still hurt. I felt a surge of worry, then learned that she’d applied Neosporin and bandages.
“How did you know to do that?” I asked.
“A driver told me.”
So as of today, it seems we’ve pulled through. There will be other times ahead, I know that. And maybe the next one will hit me instead of her. But right now, when I think about the Afters that will come, I know she won’t be alone—so I won’t be, either. Some people just get it. They might not be siblings, or even parents. But whoever they are, they know what matters. They know not to step on the purple rug. They know not to ignore the many-colored toenails. They know not to toss around words like “relieved.”
Beth, after her fall and day in the hospital
Those gloriously colorful toenails
Tags: Cool Beth, Family, help, hope, it takes a village, love, parents of children with special needs, Riding The Bus With My Sister, siblings, sister, special needs
Wow! I can identify with so much of this – albeit in different ways – and a similar episode of my own a few years ago.
Loving the toenails! Glad Beth is doing better and you both have such a wonderful community.
As a long time member of the service provider network, now also in private practice, we usually hear when things don’t go well. It is gratifying to hear that the support network was in place, friends, family and staff to provide the support Beth needed without impeding her dignity, self respect or freedom.
So glad she is well, and thank you, yet again, for the wonderful photos. These are worries so many others share.
As a mother of two, grandmother of 6, great grandmother of 2, I thoroughly understand what you say about Beth and your worries. There are so many wonderful people out there, always willing to help…..
Rachel, it is so reassuring when we see our disabled family members being guided and supported by friends. Thanks for sharing this story.
Mary Anne
I loved this, Rachel. So glad she’s ok. The two of you are lucky to have each other.
Right on, my friend! There is a whole community of friends out there behind you and Beth. We are learning, as you are, and always practicing to be more skilled. Always good to hear from you.
Beth, love the toenails! Take good care of Rachel too.
What a wonderful story. Beth has a committed circle of support. We should all be so fortunate in times of need. Thanks for sharing, Rachel.
It warmed my heart that the community acted in such loving ways to help Beth. It has occurred to me, by being a parent of two special needs children, that they bring out the best in us. . I am always amazed in what my children bring out in others and in myself. I am glad Beth is feeling better and I am grateful for the lesson of faith in the community. .. PS .I love the different colored toes because they look like fun.
I’m glad she’s better- and I ADORE her toenails.
Thank you for that…..I really enjoy Beth and her stories and your writing. I have a few people in mind that will appreciate these stories.
Glad Beth is ok. Scary phone calls and families exist on the same plane. Those that truly care always turn up, tho.
hope all is well…
You have touched me in a place,I thought only my husband knew.Our story is not the same,but it is not that different either.We took care of my father in law,for ten years,until his death in april of 2008.He had many physical illness’,and he had alzheimers.This man was part of MY life for 30 years(I’m 45),he WAS my father,or as close as I ever got.He was there for me,at points in my life when I needed him,sometimes I didn’t even know I needed him.He was a newspaper editor,he had lots of friends,funny though,after his alzheimers diagnosis,they all disappeared,until his funeral.He had 2 other sons,aside from my husband,and I will never forget when this man’s oldest son said “You guys must be SO GLAD he is finally dead…now you can get on with your lives.”My husband replied “I am so grateful for the time I got with Dad,I feel sorry for you,that you missed out on that Mike.” It is not the same as your situation,but the sense of separation from people who just don’t understand,that is the same.Some of the most interesting conversations I had with the man,were in those last 10 years,and at some point,I suppose we will”get on with our lives”,it would be nice if he were still here.We miss him,and his own sons don’t understand how that is possible,how we aren’t relieved to not have the “burden” of helping a loved one.I do not understand this.It confuses,and hurts me.I feel like an alien.However,after reading your blog,I feel a little less like an alien. Thank You for sharing
I am incredibly moved by all of these responses. Thanks to all of you for sharing your sympathy and stories. Cathy Crago, it’s also nice to meet you, though it’s so sad to think that you got the same thoughtless comments about your father-in-law. The lack of sensitivity in our society is so troubling. But comments like these – from friends and acquaintances and new friends – have really helped. And also I’m happy to say that Beth seems to be doing better.
So glad Beth is better Rachel!! So good to hear that she and you have such a supportive network toturn to during during times like these!!!
I am glad Beth is OK. It’s so nice to know that Beth is showing a great example of what real life inclusion is all about. Given the health situation such as Beth was in, all of Beth’s best hometown supports were showing loving concern and compassion and led her to get good medical attention. The fact that even though Beth was in a lot of discomfort, she felt secure enough to let the aide take her to the doctor and then to the hospital for treatment was a big deal, and that all she had to do was just call you and tell you ( Hey Rachel I do not feel well, but I am going to the doctor and I will have someone call you later to tell you what has been going on). That states it all right there, that Beth has good solid community behind her.
How wonderful to realize how many out there who are in tune to so many aspect of our lives. I love that Beth is so looked after out in the world. Finally caught up and thoroughly enjoyed this poignant post, Rachel. Thanks!
Joanna Aislinn
NO MATTER WHY
The Wild Rose Press
http://www.joannaaislinn.com
http://www.joannaaislinn.wordpress.com
I am sorry that Beth had to go through such pain. She showed courage and good sense and I am proud of her.
r – first time i’m seeing this blog! wonderful words and so thought provoking. i’m so glad that your sister got through her medical crisis with flying colors (and so glad that you did, too!). – i recall having had a kidney stone about a quarter of a century ago that left me feeling, “i will have to marry, i don’t want to die alone…” best is that beth isn’t LIVING alone! – great that there’s the interconnectivity of the world… also, thinking of the situation my four face as they grow up. at thirteen and a half (x 4 = 54 —- which i just stopped being on the 21st…, yikes, now they’re gaining on me and the balance is soon going to be tipped and they’ll be older than i…) in regards to taking care of one another, and taking care to make certain that joanna, especially, is ok. – so pleased to see that your book’s in paperback – really had enjoyed it!
It was so neat to read your blog. Although it was a tough situation I feel like I know Beth on a different level. Thanks for sharing her with us. I am so glad all turned out well.
Peg
I’m so glad Beth is much better and all went well for her during her illness. Love, love, love the toenails!
Rachel, you are such a gifted writer, I think I would rush out to buy your latest book on How to Boil Water! You often stir up my emotions in ways that few writers can. Looking forward to your novel.
Wow, that is so beautifully written! Your sister is lucky to have someone as dedicated and caring as you are who will love her forever.
You capture the feelings and details of what so many siblings experience. Thanks for finding the words to express it when we can’t.
It`s so nice to see that Beth is supported by people in a community I call my home. We are lucky to have her and she is lucky to have you. Thanks for sharing Rachel.
I talk to so many fellow parents who just expect a sibling to one day take their place. I think this shows the necessity of also having a good non family support system. I am glad Beth is doing better…love to hear about her and her life…and like others have said…amazing toenails!
I’m glad to hear Beth is OK and that she has so many people taking care of her. I know I worry about my mother getting older and being alone, 2 hours away, so you have a pretty universal fretting party! Looking forward to your new book; hope all’s well.
Rachel, Thank you for continuing to share Beth’s story and your own. You have the ability to convey feelings in your writing that so many others are not able to do. I laugh and cry with you and Beth and thoroughly enjoy reading your books! So glad to hear Beth is okay and you are doing well. God Bless you both!
P.S. Beth, I think your toenails are really cool (as my grandson would say).
Looking forward to your novel, Rachel.
Thank you, Martha, for your thoughtful comments. It’s great to hear from you, and to know that we remain connected. I was so very happy to receive these messages. (And here’s to painted toenails!)
Kirsten – So wonderful to hear from you! Yes, Beth is okay – now. Though last night we had another scare with her boyfriend, who ended up in the hospital for a whole other set of reasons. He’s now home, but wow, there aren’t many breaks from Stuff Happening. Of course, I don’t have to tell you that, given that you’re a mother…Please give my best to the boys and Jim. And a big hug to you.
This is a very wise insight, Jackie. Yes, the larger, non-family support system is just so important! We sibs do what we can, but there are times when we can’t. In the meantime, I’ll let Beth know you love her toenails!
Thank you, Lisa. I so appreciate your sensitive response to my blog post – and your obvious affection for her. You really made my day.
Thank you so much. Sometimes I have to spend many hours to find these words, so I really appreciate that you found them so helpful.
Thank you! I really appreciate your kind words about my writing, and my sistering. I sometimes feel I’m still struggling to be as present for Beth as I want to be, so your words really mean a lot.
Linda – You have no idea how much your comment meant to me! Thank you, thank you, thank you. You inspire me to get going on the next book. (Which will, I promise, be about more than boiling water!)
Thank you, Arlene! Yes, she’s recovered. And I’m so glad you like the toenails! Please give my best to everyone at Verland, including Carol. My current blog post, which I put up today, might appeal to both of you, too.
Thank you so much for these kind words, Peg. I too am glad things worked out, but it’s so nice to know that there are people out there like you who are rooting for her.