Tag Archives: Guest Post

Voices of Hope: Someone Strong to Lead the Way

On her blog Struggling with Serendipity, Cindy Kolbe documents the journey she and her daughter, Beth, took after Beth sustained a spinal cord injury in May 2000 at age 14.


I drove back from my son’s college concert near midnight. Exhausted, I glanced at my 14-year-old daughter, Beth, asleep in the passenger seat. We were only 10 minutes from home. I thought I could make it without falling asleep. Then I heard a road sign flatten on concrete. As the car flipped three times across a bare Ohio field, we left behind an ordinary life.

I escaped with cuts, bruises and blood-matted hair. Beth was another story. The car was cut open to rush her to a helicopter that would take her to the nearest hospital. A doctor in Toledo told my husband, John, that she was paralyzed. When he broke the news to Beth, she paused only a moment before simply responding, “Let’s talk about what I can do.”


Later, when I arrived, Beth lay flat in a maze of tubes and wires, her pretty face swollen, her neck in a brace. She greeted me with a small smile. Her usual upbeat attitude was muted but present–I should have felt gratitude for that, but I didn’t. In disbelief, I stared at the girl in the bed. How could she smile?

When Beth slept, a surgeon guided me to a chair. He was kind, but his words were devastating. The bones in her neck were shattered. After surgery, he told me that her spinal cord was severed at the C6-7 vertebrae. With all four of her limbs damaged, she was now a quadriplegic who would never walk.

The loss of hand function seemed especially cruel. Her fingers didn’t work and her muscles began to shrink (atrophy). Among many health risks, pneumonia stood out as a leading cause of death for quads—along with suicide.


With one mistake, I had hurt everyone I loved.

Whenever I closed my eyes, I saw the upside-down car and Beth slumped over her stomach on the ceiling, her neck at a disturbing angle. The image haunted me. How easy it would be to lose myself under a blanket of guilt. Instead, I focused on small moments. Beth needed me. I turned her to the side, straightened a sheet, adjusted a pillow, and stayed in sight. Sleepy, in a morphine haze, she told me, “I like it when you hold my hand.” Crying quietly, I could not make myself grateful for the partial feeling in her hands.


When Beth was transferred to rehab, we shared a room with a girl in a crib with high sides who made sad sounds. She was alone with a brain injury. We met a man with a spinal cord injury who needed a ventilator to breathe; he moved only his head. A teenager with paraplegia refused to get out of bed and moved to a nursing home; he had full use of his hands and arms.

As physical therapy started, Beth lay face down on her stomach, unable to lift her shoulders off the mat. Her body was moved for her. She had no strength. The therapy session finished with the difficult process of transferring her into a wheelchair. Beth opened her arms and I leaned into a hug. Her bent hand softly patted my back. Suddenly, I was grateful for arms and wrists that move. For lungs that breathe. For her ability to feel me pat her back in return.


After a month in rehab, Beth tried to sit up on the mat. She started on her back and concentrated on throwing one arm over the other to roll onto one side. It took several tries. She pushed down with her hands to raise her upper body incrementally to a shaky sitting position for the first time. Her body tottered back and forth in a battle of balance–Bambi on ice. My instincts screamed to help her, support her. Instead, I turned away to wipe my eyes.

She leaned forward and planted a hand on each side to steady herself. She looked up and smiled when she heard me clapping with the therapists. Even Beth seemed surprised by, and glad for, every small thing.


My daughter insisted on starting her freshman year of high school on time about three months after her injury. On the first day, she pushed herself slowly down the halls in a manual wheelchair. Four years later, she was able to independently care for herself and live in a dorm or apartment with no assistance, a rare feat for quads.


Beth’s attitude propelled her forward with me in tow. Little by little, I chipped away at my millstone of guilt. Sometimes we need someone strong to lead the way.

Now, all I see is what she can do.


Cindy Kolbe is a lifelong disability advocate who lives in Summerville, South Carolina. She managed group homes in Ohio and ran a nonprofit in Massachusetts. Her daughter Beth graduated from Harvard and Stanford Law and is employed as a health policy lawyer in Washington, D.C. Access her Blog and reach her via email.

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National Family Caregivers Month: Michael’s Angel

November is National Family Caregivers Month. Do you know someone who is going above and beyond to care for a loved one? Or maybe that someone is you. Either way, we want to hear your story. Email us at [email protected] and you could be featured during the month of November.

Jeanne and MichaelThis blog post was written by Jeanne Apelseth, partner and caregiver for HelpHOPELive transplant hopeful Michael Brunick.

 

In 2003 I fell in love with a charming and energetic man who had come back into my life by a strange twist of fate. Friends during our teen years, 30 years had passed since I had last seen Michael. Our newfound romance seemed like a fairy-tale and our future together seemed bright.

Three months later, Michael was diagnosed with end stage lung disease. Without hesitation, I vowed to be his caregiver and to see him through it. I had no idea what I was getting into. I only knew he would do the same for me.

Watching him decline over the years has been heartbreaking. The fear and anxiety that I feel not knowing if he will even make it to the transplant (his only hope for survival) has made me learn to appreciate life, even when I am exhausted or afraid. I try to find something good and positive in each day. And there is always the joy of knowing that I am making life easier for the man I love.

It‘s funny really… being Michael’s caregiver I have discovered that I can now tackle many of the BIGGEST issues like a pro– Lung transplant? No problem! Raise $60,000 for uncovered transplant expenses? Piece of cake!–but when my car breaks down, or I find that the milk in the refrigerator has gone bad when I am late for work and trying to grab a quick breakfast, I can be reduced to tears in a heartbeat. It is almost as if all the little hurdles in life seem grossly unfair when dealing with issues of life and death!

I have had to work hard on learning patience. I want Michael to be healthy and get his second chance. I want to be able to dance, travel and laugh with the man that I love.

One of the biggest obstacles for me has been finding the strength to carry on each day, to remain positive and keep my head above water. Working a full-time job, running a small business on the side, taking care of a partner who is ill, and fundraising for his uncovered transplant expenses is overwhelming and exhausting. While I try to rely on friends and family for support, it is often a lonely undertaking. I have found the hardest challenge has been to take care of myself while taking care of Michael.

The good news is that some problems that previously seemed insurmountable have become easier. We started fundraising through HelpHOPELive in February 2014, which has given us the opportunity to raise the funds that we will need to get through this lifesaving surgery. Through HelpHOPELive we have raised nearly $40,000 of the $60,000 that has been estimated we will need, and we are hopeful that we will reach our goal before Michael’s surgery. We are so thankful to all who have contributed their time and money to help.

Michael was finally accepted into the Cleveland Clinic lung transplant program in July. It took more than five years, two heart surgeries and being turned down by five of the top transplant centers in the U.S. to finally get where we are today!

Caregiving is definitely the hardest thing I have ever had to do. And while it is often a thankless job and not the glamorous life I had dreamed of, it is a worthy fight doing everything in my power to save Michael’s life. While I am often weary from the battles and roadblocks I have faced during this journey, there is one thing that keeps me going: a second chance at life for Michael. I have lost and gained much over the years, but I still hold on tightly to my hope for our new life, and of that I will not let go.

National Family Caregivers Month: Jeanie’s Support System


November is National Family Caregivers Month. Do you know someone who is going above and beyond to care for a loved one? Or maybe that someone is you. Either way, we want to hear your story. E-mail us at [email protected]  and you could be featured during the month of November.

Rick and Jeanie Shearouse

Rick and Jeanie Shearouse

This blog post was written by Rick Shearouse, husband of HelpHOPELive client Jeanie Shearouse

My name is Rick Shearouse and I have been blessed to be married to the same wonderful woman, Jeanie, for 35 years. Together we have four children and three grandchildren. I’ve found that marriage and parenting is basic training for becoming a caregiver. It requires that you trust God, overcome your selfishness and joyfully accept the responsibility for meeting your family’s physical, mental and emotional needs.

Jeanie and I have also been partners in ministry for 35 years, pastoring churches in Arkansas, Texas and Florida. Pastoral ministry is like graduate work in becoming a caregiver. In ministry you take the skills that you’ve learned at home and with God’s help, offer caregiving to those people God has called you to serve.

All this helped prepare me and my children for the most challenging caregiving experience in our lives to date. On March 20, 2014, Jeanie went to the hospital for an outpatient procedure that was to last under two hours. The procedure failed and Jeanie was in the hospital for almost 90 days. For 28 of those days Jeanie remained unconscious as her liver began to fail. Gratefully, Jeanie eventually received a liver transplant. She had to relearn to walk, swallow and even breathe all over again, but during this difficult this time she was never alone. As a family, we made sure that one of us was always by her side. On June 13, 2014, she was able to come home, but she needed complete care during this time and our family provided it.

Jeanie has made an amazing recovery! She went back to work teaching the 2nd grade on September 22. She still is unable to drive, but we enjoy the 20 mile round trip together each day. It is a great blessing to be a caregiver! I realize that not every story of caregiving has a happy ending; my mother took care of my dad for seven years until he died of Alzheimer’s disease. It was very difficult and sad but the power of faith, family and friends has sustained us through our journey.

We are so thankful for HelpHOPELive. Their services have been such an encouragement to our family and friends. No one knows the future, but if we learn the life lessons in our past and present and establish strong relationships with family and friends, we will be prepared for whatever the future holds.