Deb is home

The odd-yssey that began with a trip to the emergency room on July 21 in Geneva, OH,

surgery on July 22 in Cleveland, OH, and stops in three hospitals and 5 different levels of care (Trauma-Surgical ICU, Floor, NeuroICU, Respiratory Acute Care, Rehabilitation)...we are home. Together.

Deb was discharged, or I should say set free, from Spaulding Rehabilitation Hospital in Cambridge, MA yesterday at 11:30 AM. We loaded her in an ambulance and headed back to Yarmouth where we spent a furious afternoon making our home ready for its long-awaited, and desperately missed, creator and heart. We are very grateful for the dozens of medical professionals who cared with such compassion for Deb over the past three months, and yet we are most grateful to be home.

I learned many things about our health care system from mid-Summer until this blustery, post-Nor'easter day. First, acute care hospitals are designed to save lives; and they are very good at their jobs. Second, the business of caring for patients can become enormously complex, both in the routine rhythms of daily nursing rounds and activities as well as procedures that are never without some risk. Third, it requires discernment (and some detachment) to perceive the difference between "more" and "better"; and we had to adapt to the fact that all of our medical colleagues were looking through their individual lens of specialization at a set of conditions that were not easily bounded and always changing. Finally, time waits for no one. I know, I know. That is pure plagiarism with gratitude to the Rolling Stones.

How did all of this happen? Well, I am going to skip a lot of the details. ALS is a progressive disease of the nervous system. In a typical patient, the body slowly declines while the mind and spirit of the patient operates at full-strength albeit increasingly taxed by the burdens of the flesh. In Deb's bulbar-onset progression, speaking was taken followed by swallowing followed by encroachment on breathing and extremities. Today, Deb communicates by writing, having lost function in most other parts of her body. She is receiving full or partial support in all other aspects of daily living.

We have received such love and support from so many people, it would seem that a very small number of our close friends or a stranger on the street would ask, "Why would you keep going?". I can answer it this way, as I have hinted at in previous posts and in recent remarks I shared at Abbey and Ted's re-wedding reception. First, I fell in love with many things about Deb; and I believe "love" is a term we throw around so casually that it has lost some of its meaning and much of its mystery. One of the things that attracted me, and still holds me, is Deb's incredible mind that is both intellectually-gifted and also emotionally strong and supple. From the depths of this crisis, I have never lost sight of that beautiful mind, whether it is climbing from the fog of surgery or enduring hours of pain in recovery. Deb's physical body was a marvel: healthy, athletic, something she treated as a "temple" even when it was under attack from various challenges. But the mind and spirit were always penultimate. Second, I am inspired by her spirit. As someone remarked at a reception we held at Spaulding Hospital over a week ago, with just a hand gesture and tilt of the head, Deb is able to emotionally connect with those in her presence with a whole new language. Knowing the medical backdrop, I am not sure I could handle the daily burdens she does. Finally, we made vows to each other; and, in time, we became in the words of the Apostle Paul "one flesh". What we initially did to and with our family for ourselves, we were doing ultimately for each other. So self-love became mutual love which grows into "agape" love: willing the good of the other. It is incredibly sustaining, and I am forever grateful to have built a life-partnership with this woman. It was through warm-up "trials" over nearly 36 years that we entered into this most formidable challenge of our lives.

So, in terms of medical care, we really needed to struggle with a host of doctors to gain the right to be discharged. With a terminal illness, there is always an option to say "No more". And we talked about this on many levels and at many times during the past three months; and, let me assure, we are not delusional. And the going forward is truly something that everybody must commit to achieving and for what purpose. We know roughly how this will all go, not that we take great solace from that certainty. What is always in Deb's control, and through partnership mine, is the determination of "how" we will go forward. In the simplest terms, we both wanted to be home, under the roof we shared and in the place where we gathered with our family and friends. While our current home carries fewer of the shared memories of some of our homes through the years, there is no mistaking it for someone else's crib. And our familiarity and attachment to Maine and its coast was etched years ago when our children were young.

I would also say that battling as we must is easier when the environs are yours to control. We are no longer separated, living in two places most of the day, and going into and out of a hospital that is itself neither our home nor a place you ever feel settled. While we built special relationships with a number of nurses, therapists, nurses aids, and doctors over the past several months, we also had to face hours of impending grief and real suffering that are too vulnerable to put on full-time display. With no casual dismissal of the tears we shared with once-strangers, this is a journey we wanted to continue with our family and friends foremost. Spaulding, after an unfortunate encounter, lifted all of the visitation restrictions for us and provided a wonderful space for us to celebrate on the morning following the wedding reception which Deb was forced to watch from her room by Zoom.

So we are now into controlling the "how" of the time ahead. Deb is resting peacefully on the first floor of our townhouse, and we are in the early stages of bringing support professionals onto the team to care for her needs. We are energized, and we will eventually break through the anxious moments as we learn a lot of new skills involved with often unassisted care. But the house is a comfort, our neighbors are a reassuring presence, and we are happy to be taking back an iota of control over our lives as our adversary tries to press forward.

In the words of Holocaust survivor, Viktor Frankl, and paraphrasing Friedrich Nietzsche, "He who has a WHY can bear any HOW.".

So it is.

p.s. Please be in touch. Come visit before Winter makes Maine an inhospitable ice chest.