Tag Archive | disability

Do Unto Others (or not …)

Sep8

It is puzzling to watch how, in various social media (and in a wider sense as well), some Christians reach out to other Christians and interact with them as a closed circle, yet fail to extend their friendship quite so generously with those who might either be struggling with their faith, or simply not Christian at all. I suppose it’s natural to do this. Like seeks like. But when it becomes self-focused, then it also becomes less than inclusive. At least, that has been my personal observation just lately.

I wonder if this is what Jesus would have intended. The Christian Church is shrinking in membership. Is this sense of exclusivity a part of the reason? A retreat behind the barricades of faith, so to speak? A feeling that “our church” is better than “your church” because WE do it right and YOU don’t? I have heard this sentiment explicitly expressed from the pulpit. It disturbed me so much (coupled with the anti-scientific mindset I encountered) that I stopped attending services anywhere. My gardens are my sacred places these days. God – genderless and remote but still present – glimmers above my head and dances in the leaf shadows. I suspect I have become something of an animist. I detect that holy but unfathomable presence in almost everything, from the stones and water to the air and light. It doesn’t wear the skin of either a man or a woman. My fundamental Christian acquaintances will no doubt be concerned for my soul and consider me damned for eternity. I have done many things worthy of damnation, after all. But is this one of them?

I’ve belonged to a “traditional” church but now live at some distance from it and am no longer a participant – although I hasten to note that these are fine people with beautiful hearts. So it’s not their fault; I’m just standing outside the circle. My home congregation from childhood is in another region entirely. I have been exploring the Jewish roots of my father’s Levy lineage, with considerable and increased attention. That is the surname I’ve carried from infancy and its history is undeniable.

And then there’s Yeshua, Jesus, the Jew at the foundations of Christianity. He never once claimed to be anything else but Jewish. I think too many Christians have forgotten that over the years. Western society harbours a groundswell of anti-Semitism that I find frightening. The situation in the Middle East has some bearing on this, but it’s not the whole story. There’s this knee-jerk reactionism that gets directed at a much broader spectrum. So I quietly research my name and its ancient antecedents and wonder if we will ever truly be comfortable with our own identities, any of us, regardless of beliefs or cultures or places of residence. I doubt it. Contention is inherent in humanity. We do not play well with others. If we believe otherwise, we are lying to ourselves. No one ought to get too smug about our capacity for committing acts of goodness.

Meanwhile, my family’s home in Yarmouth will become increasingly our “prison” owing to my husband’s physical deterioration, thanks to ALS. Its address is not far from several mainstream churches. People from these congregations know us and many also know what we are dealing with. Yet David has received nary a visitor from any church, except Mormon – and they were total strangers to him until then. He appreciated their attention. Otherwise – nada. Nary a card. Nary a knock on the door. Nothing. He is confronted with mortality and it will be a terrible conclusion to a life bravely lived. His atheism is, I suspect, more along the lines of agnosticism. He has a keen intellect and his mind closes no doors entirely. It doesn’t need to. The religious community closes them for him. We have been the recipients of generosity from many sources but all of them were secular. I do find this curious.

Still … he can hardly hike out to the nearest place of worship these days. And he’s probably not alone. Well, yes, he IS alone in that terrible sense. On his hospital admission forms, he always writes “Anglican”. He was born in England although he deems himself 100% Canadian but that one tie remains. I believe the last time he saw any clergy member one-on-one was in a hospital setting. And for a religion that originally emphasized outreach and conversion, this strikes me as rather sad.

corberrie church IMG_3731

 

The former Catholic Church in Corberrie, NS – now unused and no longer consecrated.

I took this photo on a recent drive around the area. I have never attended this church, however. 

On the Road Again

May13

How ’bout them Habs? That final game should be somethin’ else! I have a happy husband this morning. We are Canadian, so we tend to root for the only Canadian team in the Stanley Cup race. However, Boston has Canadian players too. Brad Marchand is from our part of the country. And of course, there’s also Sidney Crosby; the Penguins face their own seventh game, do or die. We are hoping for “do”.

For those unfamiliar with Nova Scotia, this is a small province. The odds of producing NHL players are probably against us, owing to population. Yet produce them we do, and not just your average puck-chasers, either. According to one list, there have been 68 NHLers from NS. However, Yarmouth’s own Jody Shelley was omitted from that roster because he wasn’t born here, but his formative years were all spent in NS. He was a local favourite during the many seasons of his on-ice career.

So most Nova Scotians know and love their hockey, even when we don’t always watch every game on TV or at the local arena. My late father, Bert Levy, coached and/or managed teams in the Annapolis Valley back in the day. As a child, I often went to the old Acadia University rink to watch Valley Hockey League contests with him. I vividly remember the excitement, the smell of the place, the hot dogs slathered in mustard! I’ll write about my father in another blog entry at some point.

We have a visit to the ALS clinic tomorrow at the NS rehab centre. We’ll soon know every curve in the road to and from Halifax. I need a good cushion for my butt … which in itself IS a cushion, but not nearly enough! I take along my camera(s) and manage to make the most of the drive whenever I can – but I will never again leave a camera in a hospital! I made that mistake when we were at the Infirmary for the second neurological consult. I had thought of walking through the Public Gardens during David’s tests, to shoot a few images of whatever was in bloom, but misplaced my Canon T4i in the examining room instead. A month later, it came back to me after someone found it and the neurologist’s office tracked down the owner. Meanwhile, thinking it lost, I’d already replaced the missing camera with a Canon 7D, so now the T4i has become a nice backup for the newer and fancier model. Both cameras will last me twice as long. And the lesson has been completely absorbed. They stay locked in my car!

Still, these drives are daunting after awhile. They take seven hours, round-trip, not counting any stops. Our daughter works at an elementary school in Yarmouth; she’s a guidance counselor at Meadowfields. The staff raised money to buy us gift certificates that are certainly making these trips easier to bear. This will be our fifth one and we continue to be grateful for their support. The ALS clinic is held twice a month but I don’t think we need to attend all of them, although there will undoubtedly be a referral or two to other specialists in the future. This week’s consult will involve an anesthesiologist, whose field is pain management, and a GI surgeon. The topic of placing a PEG tube is very much in everyone’s mind right now. ALS patients (PALS) risk choking and aspiration of food as their swallowing function diminishes. Yet they require nutrition, of course, so a feeding tube permits them to receive it with greater safety and comfort. Bulbar-onset ALS, which David has, first affects the throat, voice and associated areas. In fact, he first knew something was drastically wrong when he began choking on his food and swallowing with great difficulty, accompanied by slurred and indistinct speech. Fine-motor control in his hands has greatly diminished. Yet he can still use his legs and get around, albeit more slowly. Limb-onset ALS – which is the more common type – attacks the legs and the other issues develop later. It is, however, normally slower to progress. David’s bulbar symptoms began only in October, 2013.

So he can take walks if he doesn’t overdo it and wears proper shoes. Still, one should never assume. To the casual observer, such a patient appears to be able-bodied. But with a bulbar patient’s loss of strength to eat well also comes weakness in other locations – fingers, hands, arms – and inevitably it spreads to the legs, often striking one side harder than the other for a short time. We are there now. The falls at unexpected moments have started to occur. For a man who not so long ago climbed Gros Morne mountain in Newfoundland, this is a frightening and devastating consequence of his condition.

So the paperwork increases. A form for a handicapped parking permit is waiting to be completed. The definition of a disability includes more than confinement to a wheelchair. Those who suffer from conditions such as ALS, and are still able to walk, fit the definition if they are physically limited to short walking distances. In a small community, mall parking lots tend not to be too daunting but in larger centres, they can be vast. I’ve gained insight into those who park in a handicapped spot and then walk away from their vehicles. Some folks assume they’re abusing the system – and this is not so. They are simply trying to remain mobile, within the limitations of their strength, but can’t push things too far (literally). For cardiac patients, these limitations can arise from severe shortness of breath. With neuro-muscular conditions, such as ALS, there can be other difficulties. When those motor neurons quit, they quit forever. This can happen faster with over-exertion. And in the end, inevitably, the wheelchair and other obvious support devices will come. The series will, in essence, be tied at that point. Nobody should wish this to happen to a stranger in a marked parking space. So if you spot someone parking in a handicapped space, then walking to the mall, please keep an open mind. Please be compassionate. The reality is often not what the appearance might suggest.

We learn as we go. Looking back to May of last year, who could have imagined how life would take such a radical shift? But it does, for many people, all the time. We’re not unusual. Each of us confronts his or her own destiny, for good or ill. There are no fixed strategies to reach that destiny, no set rules of play. We just find the best approach and trust it will get us there. And that the team will bring  its A game, every minute of regulation play, right through to a hard-fought overtime. That’s the goal, after all. This disease will win in the end but it’s not much of a victory when the winner plays dirty.  And ALS plays very dirty indeed.