Wheat gluten. Not the most romantic offer a man can give a woman but if the man is Hook and the woman is me, it becomes a gift that leads to falling in love which leads to marriage which leads to caring for someone until they do not need your care anymore.
When Hook and I announced our engagement to my parents back in 2008, my mother said, “Only marry a man you’re willing to care for in sickness.” That might sound ominous to some except my mother, like me, married a man who was older than her. My father was 14 years my mother’s senior while Hook is 11 years my senior. Married men, on average, die before their wives. Erma Bombeck said it was the only break women got. The world laughed, I laughed, too, except I’m not laughing today.
My mother’s sage advice comes from living her wisdom because those words were spoken three years before my father, Lou, passed away in 2011. So women, write my mother’s words down, share it with every female you know – young or old:
Only marry a man you’re willing to care for in sickness. – Anselma Guzman
I’ve put off writing this blog and you know I’ve been putting it off. No matter how many times I blocked the words WRITE on my calendar, my fingers wouldn’t move over the keyboard. To write, I would have to think, and to think meant I would have to feel. Feeling too much meant spending too much time curled up in a ball sobbing, and I could only afford to do that when Hook was resting in another room so he wouldn’t hear me. I call it repressed crying; my mind calls it selective madness.
Hospice Austin & Hook’s Research
Under the oncologist’s advisement, Hook decided to stop chemotherapy treatment permanently in June because it was too debilitating to his system. For the past three months, I have envisioned Hook standing in the middle of a road with chemotherapy headed toward him from one direction and cancer from the other. Both were accelerating faster and faster with the same outcome expected regardless of which reached him first.
Stopping chemo meant moving into palliative care which some of you may know as hospice. We’d been avoiding hospice out of fear. If you’re like us, hospice meant preparing to die with no alternative but death. Then, one of Hook’s friends lent us a wonderful book, The Best Care Possible, written by a palliative care doctor. The book gave us a positive perspective on what to expect and how to embrace this type of care. So far we’ve learned:
- Some people “graduate” out of hospice. People can and have lived far longer than the estimated six months under hospice care. At the risk of sounding pessimistic, I know we will not graduate out of hospice. It’s important for me to write this because it’s part of my acceptance and part of helping you to accept it, too. I mention the ‘graduating out of’ because hospice is as much about hope as it is about dying. There are other things we can graduate toward.
- Palliative care usually reduces stress. Hospice covers pain control and symptom management in the home. This in-the-home care alleviates (most) trips to the hospital, doctors’ offices, pharmacies, medical supply stores, etcetera. Less stress = a more productive Hook and more time for him to focus on completing his final pieces of scientific research which he attends to daily. We’ve been trying to get to his university and to UT’s Brackenridge Field Lab, where Hook stores his bug samples, on a more regular basis. He has been able to line up other scientific experts in the U.S. and abroad who are willing to take the research baton and carry on his work when he’s no longer able to do so.
- Hospice means hope. Hook and I are hopeful but realistic but hopeful. The hope I hold in my heart today is different than the hope I harbored three months ago. We’re living with hope that adapts to daily, sometimes hourly changes. No matter what is staring us straight in the face, though, we still hope for the best outcome. If you’re thinking where is hope in the face of death? It’s in honoring the person who is dying by allowing them to live their life to the fullest regardless of how it affects you. Honor and dignity are words that come up a lot with respect to dying. I consider it an honor that I get to be the person who is with Hook at this stage in his life. My flaws as a human are highlighted daily now, but in the light of my husband’s love, I find myself both a stronger and weaker person than I ever imagined. When I am strong, it is for him. When I am weak, I’m back in that curled up ball position, but I’m fully aware in a way I know I’ll never be again. Hopeful but realistic but hopeful.
- Intimacy is heightened. Intimacy here is meant to describe the trust and faith two people hold between them, sometimes with words, sometimes in tears only. We wrap ourselves in each other’s arms to ward off any assaulting anguish that descends upon us on any particular day. Still, Hook and I share our desire for the remainder of the life we have left together. How could we not? In this, we build on top of plans still in place with an appreciation and fear of time, sidestepping emotional landmines or sometimes stepping right on them. We know not everyone gets the chance we have been given – the chance to finish things, to say I love you, I’m sorry, I love you, I’m sorry I’m not a better cook. (Hook says, “You mean a cook.”) But even if we do not have more years together, we do have this — this flimsy gift of time not afforded to those who lose loved ones traumatically. Hook mumbles above my head that this experience is traumatic and I mumble into his chest, only because he’s so ornery.
Speaking of ornery and the real purpose of today’s blog was to share the story of how Hook and I began. It’s a story that starts with a small bag of wheat gluten, but it’s too long to finish in one sitting. I promise I didn’t intend a To Be Continued to torture you rather I suspect my ramblings in these blogs are torture enough. Consider this break to Part II your chance to save your eyesight or to get away altogether . . .