English |Español | Chinese | Hindi | Vietnamese | Korean | Japanese |Tagalog | Like us on Facebook Follow us on Twitter YouTube Google+ LinkedIn Foursquare Pinterest Follow Reeve on Instagram

Spinal Cord Injury Paralysis Resource Center

[+] Text[-] Text             print

Care Giving is a Two-Way Street

Bob, Saralee and GracieBy: Saralee Perel

My husband Bob and I began a wondrous new journey. All because of a dream. We are now the happiest we have ever been, though it took years to reach this point.

The journey
Four years ago, quite literally overnight, I developed a permanently disabling spinal cord disorder. Bob became my round-the-clock caregiver. With our wonderful marriage of 25 years, we knew we'd cope beautifully. But we didn't.

Most of us will be caregivers in some way. By sharing our lessons, I'm hoping you won't need to wait as long as we did, to heal.

Nobody meant harm; nobody was to blame. But nobody was prepared for what lay ahead.

The honeymoon phase
After surgery, we were euphoric that I wasn't completely paralyzed. My neurologist called it, "the honeymoon phase." We knew it would last. Our entire marriage was a honeymoon. But soon, reality hit hard.   

Bob needed to dress me, clean me, and do every household chore. I felt so guilty. But I didn't tell him. Bob felt overwhelmed, but he didn't tell me.

Never wanting me to feel bad, he'd say, "It's nothing," when I'd thank him. Our roles became exclusively caregiver and sick person. "Where did husband and wife go?" I'd wonder -- to myself. The distance was evident in my dreams. Not once in four years, was Bob in any of them.

Coping with the disorder
Instead of reaching out to each other or friends or therapists, we metaphorically locked ourselves in self-made isolated emotional rooms. We'd have crying jags, but kept them barely audible  --  never wanting to break each others' hearts. If only we had cried together, we'd have mourned our loss and started to heal.

My self-esteem took a nose dive. Once an independent, self-assured woman, I became dependent and subservient. I was a burden. I constantly apologized for needing help. "I'm sorry I can't put my socks on by myself."

I longed to talk with Bob. But it seemed more loving not to. I desperately wanted to tell him what living in this defective body was like. I needed to share -- to be heard and understood. That's exactly what Bob needed too. 

There still is hope
Then a miracle happened. Recently, he said, "Last night was the first time I dreamed you were disabled." He became tearful. I touched his face. "It's fine to cry." Timidly I asked, "How did you feel?"

"The way I have all along. Protective." He hung his head. "And powerless to fix you."

"Nobody can." I kept my hand on his face -- so needing to touch him -- so needing to be touched. "It would help if you'd tell me how you're feeling." 

"It's hard. When I'm exhausted or my back hurts, you'll feel bad."

"I could rub your back." I held his hand like the lifeline it is. "I've never told you about feeling like a burden."

"I love taking care of you!" he said. "I want 'us' back."

"Oh, so do I."

"I think we're having a breakthrough." We were laughing through tears. Then he told me his dream.

The man of her dreams
"It was a cold day, but we were on a beach and we had to get to an island. I don't know why. There was a boat. I panicked." He knows -- no more boats for me. I have no balance. After a deep cleansing breath, he said, "A path appeared. We walked across on soil. I held my arms around you so you wouldn't fall and you held me for support."

We put our arms around each other, like in the dream, but now for emotional support. I said, "You made our path," I could barely get the precious words out, "on solid ground."

I had never felt anything more profound in my life.

And just as our roles had instantly changed that fateful day long ago, we were no longer caregiver and sick person. We were lovers and best friends.

Though Bob has always been the man of my dreams, he's back in my dreams as well. We have finally found our way.

Award-winning columnist, Saralee Perel, welcomes e-mails as sperel@saraleeperel.com or via her website: www.saraleeperel.com.

Tell us your story
Telling your story is one way to let anyone touched by paralysis know that they are not alone. We've created a place where you can share your journey for your benefit, and the benefit of others. Your story matters. Share it.

A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)
New Injury Top 10 Questions (Spanish)

CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.

Caregiver.comOffers a directory of support groups for caregivers.

The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.

Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.

Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.

FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.

National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.

Red Cross Family Caregiving ResourcesInformation for caregivers.

Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.

Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.

Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.

Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.

Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.

Library Books and VideosFind resources within the PRC library catalog.

  • Email our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Call our Paralysis Information Specialists
  • Newly paralyzed or spinal cord injured? Start here.
Get your free copy of the Paralysis Resource Guide
Paralysis Resource Guide

This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!

Find Resources in Your Area

Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO


The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

This project was supported, in part by grant number 90PR3002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship areencouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.