Incoming SCuDS

Friday, September 30, 2011

I “should” be doing other work this morning as I try to stay one step ahead of my pilot writing journal. The desire to launch the new program on October 1 won’t be met. I can’t count the slipped deadlines I’ve created and were passed unfulfilled. It’s understandable I’m told, but I don’t have to like it. At the same time, I suppose I have made notable progress, more forward than backwards.

Life sucks right now. Life is brilliant. Which is it? My personal rollercoaster is fast, dangerous, throwing curves. I have never ridden this ride I am now on, and I don’t know what to expect. And yet, I do.

My roller coaster, like any, has ups and down, curves, bumps, speed, fun, laughter, dares, thrills, fears, slow-downs. Some even go backwards just when you think it is over. This ride I’m on now turned a direction I couldn’t anticipate a year ago with Dave’s diagnosis. My health has changed, and not in a good way.

I have tried to keep this part of my struggles and related emotions downplayed even as I experience them. Maybe as much for me as for others. I don’t particularly like drama, or attention, or saying too much too soon. I prefer the behind the scenes role as ironic as this may appear! Like the decision to write and share my thoughts publicly, I am committed to face all the challenges. Even my own. Yes, some text stays in my computer, because writing is often very personal. Most is public at this point in my journey.

My health… the balance problems I’ve alluded to are serious and life-changing. I have hoped for an antibiotic that would just kick the s*#t out of this seeming ear infection.  Unfortunately it is more complicated.  There is a syndrome call Superior Canal Dehiscence (SCD.) I’ve dubbed mine SCuD, as in the missile, from this acronym. Apparently the bone above the balance center – the three semicircular canals – thins or wears away and leaves a tiny hole leading to the brain. The results for some, and that would be me now, are balance problems, and a host of hearing abnormalities, the most prominent of which is autophony, when you hear your own voice and body sounds magnified. Some of these sounds can have an immediate effect on balance, such as a sneeze or loud external noise can throw me for a loop, literally. Eating crackers and brushing my teeth with an electric toothbrush are very loud, I can hear and feel my pulse in my ears often, and I hear crackly neck sounds when I turn my head. Our bodies are really noisy mechanisms! It’s not very fun and this disorder has limited some of my activities such as strenuous exercise and driving. I have bilateral SCuDS, so both ears are affected.

I am very fortunate to have gotten a specific diagnosis in about a year of the first symptoms. From the online support forum (what a lifesaver to not be alone, much less realize we are not crazy!), I see there are many who suffer far more debilitating symptoms than I do at this time and go years before a diagnosis. It is fairly rare and SCDS has only been a known factor for about 12 years. The cause is undetermined, perhaps congenital or exacerbated by injury. Apparently, some people may have this without ever manifesting any symptoms. Like any cancer, or serious threat, the “why me” question becomes irrelevant at some point; it just is. Deal with it.

I am as intellectually inquisitive about SCDS as Dave is about his end of life and death. My curiosity becomes dread when I consider the details. The only solution known at this time is surgery with its own inherent risks and recovery. Because this is not life threatening, I will not go through surgery at this time. That is a much too complicated thought.

So I am sorting through how to cope.

I am in disbelief somehow, even with the facts and evidence in front (and inside) of me.

I try to pretend I am not bothered, or having symptoms. For the most part I can mask its appearance outwardly. But it makes itself obvious in my inner world. SCD requests far more attention than I want to give. It is noisy in lots of ways.

I can finally bring this up because I had the confirmation appointment. Leah took me to Seattle to go over the tests with the surgeon yesterday. (A referral to the surgeon should have been enough of a clue, but I preferred to keep the reality at arm’s length.)  I have no choice but to accept this diagnosis this morning. Dave feels helpless. He wants to see me healed. No surgery now I say. End of discussion.

I wonder how Dave has squelched warranted complaints about the leftover neuropathy, pain and chronic consequences of his stroke 12 years ago. I have a small peek into the daily change disease can cause. I admire his fortitude and optimism even more each day. I’m not sure I have the same strength. After Dave’s stroke, I could see the result was that he became an older man. It was a physical, biological change. His body reflected age. I feel that now. Between death of loved ones and personal illness and natural aging, I am passing through an invisible line that perhaps others can see. Like when the grocery bagger first called me m’am instead of miss, the person staring back is objectively older. These are aging moments.

As I ponder the double challenges in our home, I have also thought about the multitudes of people who have their own complex set of hurdles. We don’t usually get to pick and choose what happens when and to whom. It is not that rare for caregivers to  confront their own health obstacles along with their loved one, regardless of whether stress is a factor. In my situation, I would have this disorder no matter if Dave was working, retired, here or gone.  There are spouses I’ve known each battling their own cancers together.  As a hospice volunteer I often provided respite care for the primary caregiver to go to their doctor appointment. I would think what an unfair use of free time. Survivors face multiple deaths simultaneously or in succession. The timeline of life will create overlapping priorities when adult children care for aging parents sometimes two on one side and two from the other. We don’t get through these middle years  or elder years unscathed. Only the particulars are different. I wonder how they manage. I guess one just does.

Life is tough sometimes. It can change in an instant, like Dave’s stroke. Or, over a year like this disorder has affected me. The only constant is change, as the saying goes.

“Life is brilliant,” I started this writing. And it is, strangely enough. As I’ve traversed this personal part of my ride, Dave and I have been on a roller coaster that is fun even in the face of death.

People who volunteer regularly know that a reward for their time and service always comes back to them as a bigger gift in humbling and heartfelt thanks from those they meet. This same magnificent gift is flowing back to Dave and me as we share our journey more publicly than just this blog.  I have so much to say about the process of creating the celebration of life video our providers Providence Sound Home Care and Hospice produced this month. I want to share about the richness that has come from a local follow-up article in our Sunday paper on Dave’s life. I am temporarily sidetracked, again.

With each day I gain a deeper sense of well-being and calmness. There is much said in new age realms and even mainstream media for how enriching one’s life can be when one discovers the ability to be “present.”  Dave and I are internalizing this – I shall say – fact. Imminent death forces  “presence” into reality.  If one is lucky enough to feel and accept it.

Over the last few months Dave and I have silently moved into a presence that is indescribable (but I’ll keep working on this!). Here we sit literally. Enjoying the silence. The touch of hands. The connection of the moment. When people can come and be with us, or him, that becomes the present moment. When they cannot be here, that is not important, because they are not present. It’s really OK. I’m sure I sound a little “out there” right now. I’ll take that risk! This is an important revelation to me and worth digging into the meaning on a few levels. There is more feeling than logic to explore.

I suppose I must deal with each moment whether I am listening to my own heartbeat through my extrasensory hearing or listening for Dave’s breath assuring me of his continued life. There are decisions and tasks to tackle later. Those will be the moments of presence then.

This is now. It is what it is.

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