Organ Donation: A Personal Journey

 

The significance of a good caregiver for the disabled or an individual suffering from a debilitating chronic illness is often marginalized. 

During my mother’s final three-year battle with cancer, my father was by her side, a role foreign to a corporate Type A man born in the 1930s. He attended to her daily needs from making sure she’d eat when chemotherapy took away her appetite, chauffeuring her an hour-and-a-half to St. Louis for frequent doctor appointments, to lifting her spirits, and  refusing help from well-intended friends and neighbors. 
 
My appreciation and love for his sacrifice in his early years of retirement will remain with me always. Especially now that my husband, Steven Swinney, is in a similar role.
 
When we were married in May 1986, our future together was full of possibilities. Though we were from polar opposite backgrounds — East Coast meets West Coast, preppy falls in love with hippie — we clicked. 
 
We were strong in different ways. I was independent, assertive, and driven. He was wise, honest, and down to earth. 
 
His calmness contrasted my anxiousness. It was love at first sight (for me anyway!). 
 
Fast forward to 31 years later, we boast of two remarkable and compassionate daughters raised in Three Rivers and several businesses we’ve owned and operated in a community that we adore.
 
Though our vows all those years ago stipulated that we love each other “in sickness and in health,” the former was not on our radar at 27 and 34 years of age. We were vibrant, fun, and ready for any curve ball thrown our way. We were a team. 
 
That is, until my childhood lung disease resurfaced in 2007, morphing into a secondary condition, bronchiectasis, similar to cystic fibrosis. Steven’s role in our marriage has now evolved into full-time caregiver. He is, similar to my father, a chef, chauffeur, advisor, cheerleader. 
 
He also juggles multiple oxygen e-tanks, a BiPAP, the Vest (used for airway clearance), and a portable oxygen concentrator when we make our quarterly sojourns to the UCSF Lung Center.
 
There is no manual for this job. He is learning by doing, as I coach him (I am still in the process of losing the demanding tone!). 
 
The ease with which he embraces his new stage in life is phenomenal. His early retirement certainly looks different than he had planned: the one that included weeks of backpacking in his beloved Sierra, putzing around our two-and-a-half acres beautifying our natural landscape, traveling wherever, whenever. 
 
Yet he performs his caregiver role with finesse, devotion, and a love for me that at times, feels so undeserving. His skills of patience, flexibility, and utter selflessness have been fine-tuned to where he is able to share his insight with other caregivers, helping them as they embark on an unforeseen journey not easily embraced by many men.
 
In our small, close community of Three Rivers, there are countless caregivers who are on call 24/7 — spouses, adult children, neighbors, paid help. Unlike my father, who was too proud to ask for help, Steven and I know we have an army in this community, ready to do battle with us at a moment’s notice. 
 
Quietly anticipating my needs, Steven flies under the radar, not expecting glory or accolades. He is the unsung hero here while we await the changes in our lives after transplant. 
 
Hope keeps us uplifted, looking forward to a season of sharing unknown adventures, my stride slightly shorter than Steven, not due to an inability to breathe, but because his legs are much longer than mine.
 
* * *
 
If you know of someone who is battling illness alone, or you’re aware of a caregiver who could use a day off, make a phone call; prepare a pot of soup; offer to do the grocery shopping or a ride to an appointment; clean their home once a week. The giving of your time is worth more than you can imagine.
 
 
 
 

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