A Letter to My Donor Family

To My Dearest Donor Family,

I was driving down the road today and the sun was shining and I had the radio on full blast. I was singing at the top of my lungs and couldn’t help but notice how strong my voice was and how effortless is was to sing. In that moment I was struck with such joy and gratitude that my eyes welled up with tears. I have a lot of moments like that one.

I was born with a genetic illness called cystic fibrosis. This disease primarily effected my lungs, causing constant infections and difficulty breathing. By the time I was 21, my illness was end stage. I was dying and I hadn’t even been able to graduate from college. If it hadn’t been for the gift of my first set of donor lungs in 2000, I would not have lived to see my 27th birthday.My life changed completely that day; I did not know what it felt like to take a deep breath until I had a lung transplant.

My life changed again only 2 years later when the doctors told me that my lungs were failing and I was getting very sick very quickly. I was devastated. I couldn’t understand why I had been given this amazing gift only to have it taken before I had the chance to do the gift justice. I had not made a positive impact on the world in the way I felt someone with my good fortune ought to do.

Through a series of unusual events, my doctors decided to put me on the list for a second lung transplant. At that point, I had less than 6 months to live and no one was sure I could hold out until a donor became available.

On March 28, 2004 a precious life was taken from you and a precious gift was given to me. I was 30 years old and I had been given one more shot at making a meaningful life. Your loved one’s lungs seemed to be very compatible with my body and I had a relatively easy recovery from my second transplant. As soon as I woke up in ICU I began planning for how I would honor you, your loved one and my loved ones by giving back to people who’s lives have been touched by illness and loss. Since the moment I left the hospital, I have done everything I can to not waste a moment of time.

There are no words to express the gratitude I feel for the profound and compassionate choice you made on such a dark day in your life. I can only imagine your pain and am in awe of your ability to think of others during a time of such grief.

As the fifth anniversary of your loss and my rebirth approaches, you are often on my mind. I wish that I could take away your pain but I know this is a silly thing to wish for. I can hope that there is comfort in knowing that your loved one has saved lives but I know this may not always bring comfort. All I can do is live each day with gratitude in my heart for you and by singing with joy at every chance I get.

My heart goes out to you at this time. On behalf of myself, my friends and my family, I thank you from the bottom of my toes for your generosity.

All my love and respect,
Tiffany

After spending over 30 years in and out of hospitals, Tiffany Christensen realized she’d had a lot of practice at being a patient! After getting her first lung transplant for cystic fibrosis, she was surprised to find herself waking up in ICU with another set of donor lungs only 4 years later. 6 lungs in one lifetime? That’s a lot of lungs. Taking her patient experience and her love of pondering, she combined them to create a book, a blog and a speaking career. Her book is called Sick Girl Speaks!: Lessons and Ponderings Along the Road to Acceptance It is available at Amazon.com.

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Hope Springs Eternal – Illness and Art

The thing with feathers that perches in your soul, and sings the tune without the words and never stops at all (Emily Dickinson). Grounds for believing something good will happen (my dictionary). The one virtue that keeps us believing that, if the sun isn’t shining on life today, then the rain must be bringing a healing, restorative power that will brighten our tomorrow (me).

The group leader of my art swap group, 14 Secrets for a Happy Artist’s Life, is also an art therapist. She finds ways to enrich, enlighten, further the understanding, empathy and wisdom in our lives as artists and humans, which are inextricably interwoven. One of her latest endeavors is a course I have signed up for, on Resilience and Art.

While researching, she discovered a wonderful site, Wisdom Commons the source for many of the quotes I used in this post. It explores the character qualities valued by secular and religious traditions across the globe. Listed alphabetically, hope is found linked to faith.

Hope — Hope in the face of difficulty. Hope in the face of uncertainty. The audacity of hope! In the end, that is God’s greatest gift to us. . . A belief in things not seen. A belief that there are better days ahead. President Barack Obama

“We must learn to reawaken and keep ourselves awake, not by mechanical aid, but by an infinite expectation of the dawn.” Henry David Thoreau

Those of us living with chronic illness work to acquire a silver-lining type of hope to bring meaning to a daily routine with difficulties that might otherwise just be depressing.

Perhaps it was the need to find that hope that led me to explore a new, creative outlet when I had to leave my job. Art and illness are both a process, a journey, never entirely completed, always a new technique to learn, a new therapy to try. Then there is the need to feel productive, which is a byproduct of having worked full time for nearly 30 years.

Not long ago I made healing tags for the first time – one for a good friend who recently lost her father; another for a group member who lost her son to kidney disease, who talks on her blog about the devastation of outliving one’s child. I used pastels and watercolor crayons, which I hadn’t combined before, blending and rubbing to achieve a rich patina of blue-green.

I embellished them with what looks like hope to me, and I have to admit that I feel somewhat like a phony for espousing flowers and fairies to people who have weathered such significant loss.

For the past five years I’ve lived with chronic illness – an invisible one at that – but it’s not terminal so there is no finality to the grief. And I also do know there is much to be grateful for, there are always plenty of reminders should my memory fade. My faith has carried me through some fairly rough waters and the boat I have carved has held so far.

My hope is, that when I face the kind of grief that knocks the wind out of me, that lingers for a lifetime, it will be watertight.

I suppose when it comes right down to it, there is no life without suffering. Change. Struggle. Resilience and the ability to triumph over adversity. I have spent considerable time with those who have lost spouses, friends, relatives. And I’ve always wondered about the right thing to say in the wake of such profound loss.

Perhaps more than words, though, it’s about making the effort. Showing up. Faith. Love. Perseverance. Carry on, breathe in, breath out. Know that if hope offers no comfort today it will continue shining long enough to bring warmth when the clouds part.

National Invisible Chronic Illness Awareness Week plays an integral role in raising awareness and acceptance of the challenges faced by the thousands of people living with invisible chronic illness. National Invisible Chronic Illness Awareness Week provides much needed validation and support for those struggling to function in a society that moves at a rapid pace and places enormous value on productivity.

Patti Edmon is a former owner and Creative Director of EdmonDesign, a marketing and advertising firm in Lexington, KY. Prior to being diagnosed with Psoriatic Arthritis and Sjogren’s Syndrome early in 2005, she rode horses competitively, studied advanced fiction, managed the business and took care of her two children, now eleven and thirteen.

She has spent the past few years creating the Altered Attic, the name of her art studio, where she spends time, on good days, producing altered and mixed media art.
A lifelong writer, her non-fiction has appeared in regional publications. Visit her at http://pattiedmon.blogspot.com, where she posts her art and thoughts on an altered life.

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