Guest blog: The face of chronic illness

We all recognize and respect the grief of others when they’ve lost a loved one.

We know that whether the pain is visible or not, loss equals grief, and those who have not yet experienced that pain firsthand will at some point in their lives feel it.

But there is also a profound sense of loss that accompanies chronic illness.

While I have firsthand experience with the pain of loss, my daily life revolves around the chronic illness and declining health of my husband, and my commitment to him over the past 12 years of his disability. It has never been easy, but it has always been worth it.
Second Firsts: Permission to PauseOur medical odyssey began on February 11, 2000 with a massive heart attack which by all accounts should have killed him, but did not.

Four years after that he endured open heart surgery and a 46 day hospitalization as a result of a staph infection. At the end of that year he began a vomiting syndrome that lasted more than seven years. In 2010 he had thyroid cancer and a very rare pheochromocytoma, which was a benign tumor on his adrenal gland causing a massive overproduction of adrenaline in his damaged cardiovascular system. And last but certainly not least was his surgery in February of 2012 for stage 4 bladder cancer. He was 48, I was 39, and our youngest still at home was 8 when this all began. Dad being sick is about all our daughter remembers.


I left my job of 18 years at an area agency on aging to be at home with him in September of 2010. It would have been easy to keep working and paying toward my future. But the realization that we won’t grow old together has dampened my concerns for the future. It’s my here and now while he’s still with me that matters.

There’s no turning the clock back.

There’s no making up for lost time.

There is here and now, and he and I committed to seeing this through together.

It’s hard not to feel the grief of loss sometimes.

The list of places we’ll never go and the things we’ll never do as a result of his health is lengthy.

The grandchildren he may never see grow up will miss the experience of having him involved in their lives.

If his health continues to decline, the commitment I make to caring for him will not be repaid.

I will never again have the partner who could do it all. We could both be mired in sadness and questioning “why us?” but there is no benefit to that type of thinking. We are glass half full folks.

Our glass is half full because we know we have weathered this together.

It’s been a continual onslaught of medical emergencies that continue to erode my husband’s physical being, but we’re in this together, and he knows my support is unconditional. Our youngest just received her acceptance letter to begin the nursing program at her university.

It’s hard to know whether that would have been her path of choice had she not grown up dealing with the medical world for most of her life.

I am writing a series of three caregiver books that I hope can help other family caregivers navigate this journey they may be on as well. On the day I brought my husband home from the hospital after having his bladder, prostate, and lymph tissue removed, he told me maybe that was the reason he went through all of the conditions he had.

Maybe it was so others could learn how to handle it from us. I certainly hope that’s the case.

The first book is an ebook available on Amazon and Barnes and Noble websites. It is called “’Til Death Parts Us: A Story of Love and Commitment in the Face of Chronic Illness” and chronicles our challenges in redefining our marriage and managing when significant health challenges began to chip away at the man I married.

Bio 

Caren Rugg

Graduate from University of Kansas with a bachelor’s degree major in Political Science. Caren spent 18 years at the East Central Kansas Area Agency on Aging helping to define, design, and implement community based programs for older adults. Additionally, she created and put into action the first caregiver programs in our area, working in conjunction with the Kansas Department on Aging. 

She begun a blog in early 2010 as a mechanism to keep family and friends informed of his status, and turned it into a website in 2011. It is called themedicalmysterytour.com. I plan to release my second book on advocating for a loved one in the health care system in the summer of 2012, and hope to have a comprehensive guide to being a caregiver released in the fall of 2012. You can find her book at Amazon and Barnes and Noble: ‘Til Death Parts Us: A Story of Love and Commitment in the Face of Chronic Illness 

Christina Rasmussen

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