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Spinal Cord Injury Paralysis Resource Center

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The Path Along the Pines

Saralee, Bob, and the walking stick

Saralee, Bob, and the walking stick

By Saralee Perel

Like the cycle of life in which tides ebb and flow, so it goes with relationships. As often happens with couples when one partner becomes disabled, my husband Bob and I have had our share of receding waters ever since my spinal cord injury. But because of a stick, a pair of earphones and a field of pines, the tide has shifted for both of us.

Bob has written two poems for me in his lifetime. He wrote one back in 1977 on our honeymoon in Vermont, where we spent the days climbing mountains, cross country skiing and falling deeper in love: 

I sit here by the fire,
warmed by more than crackling logs.
My mind's eye is brilliant
with thoughts of you.

Sitting on the bed,
Perpetually-crossed legs hidden
by your long, flowing hair,
as you fall, doubled-over,
laughing at your own joke,
punch line undelivered,
I wait  . . . 

Dashing along fields of pines,
I glance behind through sparkling
diamonds of falling snow, and see you
hugging trees, in love with it all, as
I wait  . . . 

In mornings, too early
for the sun to be awake,
you shift and settle against me,
a drop of unfeminine drool on your lips,
I wait  . . . 

To tell you
of my love
for you. 

Bob wrote the second poem soon after we hit bottom emotionally. At that point, neither of us believed it was possible to repair the damage we had done to our marriage. We had developed a relatively constant state of distance from each other. When we weren't distant, we were usually snapping about insignificant things. We had not engaged in meaningful communications about our new life as a caregiver and a person who needed care. I guess we were both afraid to.

Thank God we made it better. It wasn't going to happen by itself. We needed to make it happen together, as a team.

So one recent afternoon, I could hear Bob rummaging around in our backyard shed. After about an hour, he laughingly called out, "I found it!"

"Found what?"

"You'll see."

And so I did. In one of the dark corners of the shed, he found the wooden walking stick he had hand carved for me when we were first married. It was brittle and dry from years of not being used nor cared for. So what did Bob do? Well, by polishing and re-polishing until its shine was as lovely and rich as it was in those beginning years of our marriage, he gave it new life.

Before he presented me with his re-creation, he handed me a card in which he had written the second poem:

Sometimes, if we're not aware,
unused parts of our minds and bodies
can wither, dry up and become
sadly put away in a corner,
waiting for us to miss them enough
to seek them out and enjoy them again.

When we discover them,
bring them back to life and embrace them,
we can then experience, once again,
the joy they created for us in the past.

Bob and I knew that his words had a lot more to do with "us" than they did with my precious walking stick.

After he gave me the gift, I put my regular cane under the couch. The walking stick suits me, in many ways, much better.

Later that day, I was sitting outside. I was listening with earphones to a James Taylor CD on my iPod. When I heard "My Romance," I reveled in the words and the music. Suddenly I thought, "I've got to find Bob." I faltered for a moment getting out of my chair, but then I stood myself up.

"What's there to think about?" I said to myself. "Go!" I had learned from Bob when I'd heard him rummaging through our shed, that a single decision can change an entire life.

When I walk, I need support for balance. With the determination of an Olympian, I held on to tree after tree as I rushed into the house. Bob was at the computer. Then without saying one word, I put the earphones on him and took his hand.

He held me up while we danced.

My romance  . . .  doesn't need to have a moon in the sky.

We swayed to the music.

No month  . . .  of May. No shining star.

No hideaway. No soft guitar.

Bob took one earphone off. "You listen too," he said.

I closed my eyes. He led me into a slow twirl as we both sang.

My romance doesn't need a thing  . . .  but you.

Sometimes, wondrous things right in front of us take a long time to embrace and re-discover. With one set of earphones now belonging to two people, a dash along our backyard pines and a walking stick brought back to life, we have reclaimed our love at last.

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)

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.

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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 90PR3001, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.