Tag Archives: advice

My Life As A Father And Grandfather Who Needs A Transplant

Kappy Pease is a father and grandfather living with a severe lung disease. He is on the waiting list for a lifesaving double lung transplant. We asked Kappy about his perspective on balancing fatherhood and the challenges of life on the transplant waiting list.


Why Fundraising Works For Us


Since my first visit to the hospital where a social worker suggested we begin a fundraiser to help us with the costs of transplantation, my family has come together and has been very helpful in their efforts to work with HelpHOPELive. So far, because of their dedication, we have been very successful.

Each of my kids has taken time out of their busy life to take some of the burden off of my wife, Theresa, and I, both physically and emotionally. They have each stepped up in their own way and have been very supportive. I know I could not do this without all of them.

Kappy Pease HelpHOPELive

“I could not do this without all of them.”

Although my insurance will cover most of the transplant procedure, there are many hidden and unexpected costs not covered. The expenses begin long before the procedure takes place and they last a lifetime, including travel, lodging, parking and food during countless hospital visits and the unpaid time off that my wife will take in order to care for me after the procedure. Most of all, fundraising will help contribute to the cost of the (antirejection) medications I will need to take for the rest of my life after the transplant.

I have found that much of the support I receive comes from old friends who have learned about my time of need through social media and our HelpHOPELive campaign. Working with HelpHOPELive has been a very positive experience. Their knowledge and support has been very helpful to someone who had no prior experience with fundraising.

Kappy Pease HelpHOPELive

HelpHOPELive provided custom fundraising materials and more.


How My Family Supports Me


It has been very rewarding to watch my kids grow and begin to start their own families. I am very proud to say that they have each become very successful in their own way. I’m humbled by the compliments I have received about my kids. The way they have stepped up for me during this time makes me feel like my wife and I raised an amazing family.

Kappy Pease HelpHOPELive

Family members “have stepped up for me during this time.”

At this point in my life, I feel closer to my kids than ever before. Before my diagnosis, I worked very long hours that caused me to miss out on a lot of my five kids’ daily lives and activities. I especially missed getting to watch their sports games, because sports are something that are very special to both me and my kids.

I feel that the physical limitations of my disease have been more challenging as a grandfather than as a father. My kids are adults now, and they need me more as an advisor and a part of their emotional support system.

Kappy Pease HelpHOPELive

A transplant will help Kappy spend more quality time with his grandkids.

Since my diagnosis, I have been given the chance to spend more time with all of them and grow closer to them; however, because of my disease, there are also many things we still cannot do together. The hardest part is my limited ability to play with my very young grandchildren. Once I get the transplant, I will hopefully be able to do many things that I have missed doing for the last 10 years. That includes golfing, hunting, fishing, playing with my grandkids and taking long walks with my wife.

My advice for a new father is, enjoy every moment because they grow up way too fast.

Kappy Pease HelpHOPELive

“Enjoy every moment” Kappy advises new fathers.


Learn more about Kappy or donate in his honor at helphopelive.org. If you know a father who needs help fundraising for a transplant, reach out to us today to learn how you can help.

Love, Commitment and the Honest Life of a Caregiver

For National Family Caregivers Month this November, we’re profiling individuals who have taken on a caregiver role to support their loved ones. We interviewed Rich Reedy, who has been supporting his wife since a 2014 accident left her with an incomplete spinal cord injury that requires constant care.


Do you consider yourself a caregiver?


I absolutely do consider myself a caregiver. We are fortunate enough in our household to have many people in our circle who we consider caregivers, including a young woman, Judy, who comes in twice a day to support [my wife] Eileen; and Patrick, Bridget and Jacquelyn, our three children, who help out significantly. I serve as a caregiver coordinator, in a manner of speaking: I’m not a boss and not a commander, just a “keeper of the schedule”!

Eileen Reedy HelpHOPELive

Rich Reedy (left) with Eileen Reedy (center) and family.


Is emotional support as important as physical support when you care for someone with an injury?


In my experience, emotional support is a vital part of overall healing. If my wife is not in a good place or if one of our caregivers is unhappy, that attitude is definitely contagious. It’s important to me to try to keep people happy. We want people to support Eileen because their hearts are in it 100%, not because they feel like they NEED to be there. If their hearts are not in it, we do whatever we can to get them there, so that emotional connection is maintained.


What helps you to find relief when you are stressed or upset?

I find my own ways to relieve tension but, in all honesty, when a bad mood starts, it often has to clear on its own. Eileen continues to impress us with her commitment to therapy and progress. Seeing that progress in action is a great motivator and encourager. To me, it’s important to reinforce the good, for my own benefit and for the benefit of other caregivers. I play a role in helping others by reminding them that they are doing a great job and are making an important contribution. Just like in life itself, in caregiving it can make a big difference to be positive and to look for ways to ease the stress and the repetition, so you can continue to take on challenges day after day.


What is the best part of caring for a loved one? The most difficult part?


The best part is loving Eileen and supporting her on her healing journey. Caregiving really can change who you are. I was a man of no patience – now, I am a man of SOME patience, at least! I’ve still got a long way to go.

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The worst part is struggling to find time to unwind and clear your mind and finding ways to avoid self-criticism. My day is composed of getting up early and making good use of every spare moment in the day. I run my own business out of my house, so I’m fortunate to be able to work in between assisting Eileen and supporting the rest of the care team. By 6 p.m., I have no brain left! Sometimes I just like to take a few minutes to sit and unwind at the end of a day. I honestly struggle to remember what my life was like before I took on this role!


Which words would you use to describe caring for a loved one?


The two words I’d use to describe caregiving would be love and commitment.


Do you have any advice for other families who are learning about caregiving after injury?


First, I would advise them to lean on professional support. While Eileen was in the hospital, the staff really showed me what my life would look like, even though I didn’t realize at the time that they were preparing me for that reality! I didn’t know that it was going to be a life-changing experience that would last longer than weeks or months. Professional support like that can really help.

Eileen Reedy HelpHOPELive

Eileen with a service dog, Moose.

I’d encourage people who are about to become caregivers to take a look at caregiver resources like books and manuals. Having a guide helped me a lot – I turned to a book called Taking Care of Yourself While Providing Care. The book is written for caregivers who care for people with spinal cord injuries, but its lessons are relevant to any caregiver. Managing self-care is something that professionals and books will always emphasize; it’s as important as ever to take care of yourself when you become a caregiver, if not more important. If you’re not in a good spot, you can’t help anyone else.

My last piece of advice would be to consider accepting outside help. Our twice-per-day caregiver, Judy, has become like a part of our family, but she still has her own life and her own world outside of us. That means we can chat, talk and laugh with her and those interactions don’t overlap with the rest of our family life. It can be a really nice diversion, and that person also comes in with a “clean slate” and not a host of other worries and long-term concerns to bring to the table. She can give Eileen her full concentration, which is helpful for all of us.


We’ll be celebrating caregivers all month. Have a caregiving story to tell? Reach out to us and you could be featured in an upcoming Blog post!

Finding Joy After Injury: 11 Quotes From Dan Gottlieb

Here are 11 powerful quotes from Dr. Dan Gottlieb on love, loss and recovery after a spinal cord injury. Dr. Gottlieb became paralyzed from the chest down in a car accident in 1979. Having survived years of struggle and personal loss, today, Dr. Gottlieb maintains a private psychology practice, lectures and trains health care professionals, and hosts WHYY Philadelphia’s Voices in the Family broadcast.

Dr. Dan Gottlieb, Voices in the Family, NPR, WHYY

All content provided courtesy of the Christopher & Dana Reeve Foundation via the Foundation-hosted webinar “Dr. Dan on Finding Joy,” August 5, 2015.


On Redefining Joy After Injury:

The definition of joy can change based on an individual’s abilities and circumstances. With a broken neck, I could no longer be the person I thought I should be or the person I would have been or wanted to be. I had no choice but to be the person I am today. When you give up the battle to be someone or something else, you start to look at the world differently. You can lower the bar to what gives you joy; you lower that bar low enough and pure joy is easy to find.

meditation

Take time to appreciate small blessings.

When you’re no longer pursuing an artificial definition of happiness, all of a sudden, the air smells cleaner. At this moment, perhaps you can breathe without coughing. Joy is right there, in that moment.


On Finding Joy By Helping Others:

Joy happens most often when we’re not thinking about ourselves. We are hardwired to help each other. That’s why when someone suffers or is crying, our hearts open. When you want joy and want to feel good, help another feel good, whether that being is a child, an adult, or an animal. The act of expressing care and compassion brings joy. If you don’t feel it, help someone else feel it, and then you will feel it yourself.

caring for child

Caring for others can help you feel joyful again.


On Finding Joy Through Gratitude:

I find joy whenever I: realize that this day is precious; appreciate the fragility of life, knowing deep down that this might be our last day, our last year or our last summer.

sunrise

Viewing life as precious can improve your outlook.


On Accepting Love:

Fear and resentment interfere with our ability to experience love. Let love contribute to the healing in [your] heart. Love is the only vehicle that can help us find peace. On my deathbed, I want to be surrounded with love and be able to love until my last minute. I want to feel that love until my last breath.

afraid girl

Fear can make it difficult for us to accept love.

The most difficult and the most generous part of love comes when someone you love suffers. Be with them. When I find myself in a deep, dark place, I want to be with someone who loves me enough to sit there with me, not a cheerleader to tell me there’s light at the other end. Sit with me in my helplessness and then I will feel your love.


On Overcoming Judgment From Others:

Too many of us see ourselves based on our wheelchairs. We have to see ourselves as complete people. All of us have been [judged] based on the color of our skin, or what we believe, or where we pray, or what we’ve done. Very few people are able to look into our eyes and see our heart and soul. Make a heartfelt commitment to never place that kind of judgment on someone else. When you encounter another, look into their eyes, acknowledge their humanity. That alone will make you feel better.

eyes

When you meet someone, look in their eyes and acknowledge them.


On Discovering Self-Love:

There’s an old Sufi saying: ‘When the heart weeps for what it has lost, the spirit laughs for what it has found.’ Put your hand over your heart and see if you can find kindness, compassion and even love for this [person] whose life has been torn apart.

mirror reflection

Can you find love for the person you see in the mirror?

No one is going to understand your suffering as well as you do. Take a half hour a day to connect with [yourself].


On Pushing Through Pain:

Pain is a demanding companion. You try to look outside, and the pain says, NO – you’re paying attention to ME. If we can sit with that pain and have a heartfelt wish for compassion and kindness for everybody in the world who feels more pain than we do in that moment, it helps us get out of our heads. It changes the story, and that is everything.

ocean gray cloudy gaze

Send out a wish for compassion to combat your pain.


On Humor:

If I were asked to consult on the second edition of the Ten Commandments, one of my commandments would be, ‘Thou shalt not take thyself too seriously.’

laugh

“Thou shalt not take thyself too seriously.”


Want to share your favorite quotes about disability or injury? Share your thoughts with us on Facebook or on Twitter.

Best-Ever Advice After A Spinal Cord Injury

We asked four HelpHOPELive clients to answer a single question.The result is a series of powerful insights for anyone who is struggling to keep moving forward after a debilitating injury.


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1

“The journey gets easier over time. The first few years are the hardest post-injury, when you are trying to adjust to your body’s physical changes and all that comes with those changes.

If you’re interested in adaptive hobbies and athletics, a good way to start is to search for adaptive sports programs in your area. If there is a specific hobby you’re interested in, search for meet-ups or local clubs for that hobby. Talk to others who have your condition and are already doing the things you would like to be doing.

There are so many resources for support and information, and they are all at your fingertips. You can use social networks like Facebook to find and network with others who have spinal cord injuries.”

Robert


2

“Do the best with what you have and take control of your own care. Follow research in spinal cord injury therapy and stay involved.

Do not give up on recovering functionality and making gains through hard work. Keep your body in shape and ready for the treatments that will come – I hope that they arrive sooner rather than later.”

Brian


 

4

“Don’t give up. Our bodies want to heal if we will let them. Keep moving as much as possible and know that it will get easier and your body will get stronger.”

Rachael


3

“Get out there and try anything and everything you can. Today there are so many options when it comes to adaptive sports and activities, with new ones being invested every day.

There is no excuse not to try to search for something that you will love to do.

Don’t be scared just because someone with a similar disability can’t or doesn’t do something. You can be as happy or as upset about your injury and your life as you choose to be. It’s entirely up to you.”

Kirk


What’s your best piece of advice for someone who has recently sustained a spinal cord injury? Share it with us on Facebook or on Twitter.