“Winter is not a season, it’s an occupation.” — Sinclair Lewis
“For whatever we lose(like a you or a me)/it’s always ourselves we find in the sea” — e.e. cummings
If you’ve survived the soul-suckers that both the months of January and February and March can be, then you’re doing all right for yourself. For Sam and me, these months lurched forward with one medical issue after another with restless nights sandwiched between the type of immobilizing fatigue that only an extended stay in the hospital can cause.
To make a long story short, due to malnutrition and dehydration, low oxygen levels, a crazy-fluctuating heart rate, and general ill-being, Sam made two trips to the ER and stayed one week in the hospital. It is not an exaggeration to say that I would not have survived this stressful time without my grandparents, Sam’s mom, and my parents. We had their complete support, even if there wasn’t much for them to help us with at times.
Before Sam’s first visit to the ER, we were making plans to get a feeding tube placed. When dealing with such a swiftly progressive disease, like ALS, it is always best to stay ahead of Lou and his mischief. Ironically, I (of all people!) did not realize how severely Sam was malnourished and dehydrated. The only explanation that seems valid is that I see him everyday, and I don’t necessarily notice subtle changes, or even big changes, in the same way that someone who hasn’t seen him in months will.
Although staying in the hospital is never fun, especially on the Neurological floor where imprisoned octogenarians attempted to escape from their beds and roam the halls only to have Nurse Ratcheted restrain them with a bed monitor and the promise of pain medicine, Sam was able to have his feeding tube placed at least a month earlier than we planned initially. He also had every test performed known to modern medicine, and he is healthy as a horse!
Just to answer a few questions that many people seem to have … yes, Sam can still chew and swallow and speak. His primary source of nutrition is from this special formula that he takes with the help of a pump that pushes the liquid into his belly, but he eats at least two bowls of cereal at night (Cocoa Pebbles, to be exact) and a small meal during the day. Ironically, his appetite has skyrocketed since we have increased the number of calories he consumes everyday. I know that these abilities, the abilities that we all take for granted: eating, speaking, swallowing, coughing, will continue to decline, but I am so grateful and relieved that Sam has gained his strength back. He is in the best shape I have seen him since before Christmas. That is a miracle in and of itself.
Spending all of this time in the hospital and seeing Sam so weak got me ruminating, which is always dangerous. Some of you may understand how you can think yourself into the swamp, unable to get back on the trail of reasonability. But then I think, well, this whole situation is completely unreasonable, so I may as well honor my feelings as I feel them.
Recently, a friend’s husband passed away from this monstrous disease. I can only imagine her pain now, and yet, I don’t want to dwell in it — out of fear, for my sanity, out of gratitude for where Sam is right now, maybe all of the above. I choose to live in the present, and in my present I have so much to be grateful for: Sam’s health and strength, our ability to travel, and the great support that we have from our families and from people who we have never even met! Someone commented to me that this may be a form of denial, along with my use of anti-depressants (that’s another story, folks), but my only response is this: you have no idea until you live it. Degrees, a career, case studies, books, Ted Talks, clients — even the experience you may have had with someone else in a similar situation does not give you permission to make judgments on me and my response to the slow death of my favorite person in the world. Unless I am in some way being negligible in my care of Sam, I figure I am doing fine for now. Perfection and status and the judgments that others may or may not pronounce on our decisions have flown the coop, and, I say, for the better.
That isn’t to say that I do not grieve for Sam and for myself and for our life and that I do not grieve for those lost in this long war and for those left behind, struggling to know how to dig out of the trenches. I do. I just remind myself that right now it’s more about Sam than me. I have chosen to take on that role because I want to be there for Sam completely. I don’t want to hijack his pain and only see it through the lens of myself and my pain. My solace is the peace that those who have gone before us have finally found — and that this too shall pass, eventually. ALS is a physical and neurological disease, but even more than that, it is a test of will and a challenge to the mind and to the heart. It might even be more of a mental game than anything else. Also, it is a revelation of Sam’s character, of my character, and the character of those around us.
During our journey with Lou of almost 4 years, I have noticed that it is those who you least expect who get it and who stick around. More often than not, it is those who society finds difficult to understand and, from a traditional Christian perspective, may even view as “lost.” But often different doesn’t matter to the outcast. And the marginalized have really embraced Sam simply because they see that he needs a friend — in whatever form that may be.
So, to honor the survival of these hard months and hard thoughts, we decided to take a trip to the beach. A family friend let us use her condo at Hilton Head, and it was fantastic! Sam, Conner (our dachshund), and I lounged on the back porch, enjoying the sun and watching the tide come in and go out. We read continuously and indulged in fresh seafood. I’d say it was one of our best trips because we did absolutely nothing.