Living with Parkinson's
Post by Prof Generaliter.
You know,
there is no other way of describing it, but being diagnosed
with Parkinson’s, by an obviously delighted neurologist, makes for a bad
day and I will admit to having felt more than a little pissed off. I was
definitely grumpy for a few days and googling online for some information
made things worse. The path in front of me looked unpleasant: pain, loss
of mobility, possible dementia and my nurse's obsession - constipation and
incontinence.
Oh, joy, a
future of wearing Tena’s for men and drinking litres of Movicol.
It is reckoned that Parkinson’s has potentially up to 40 symptoms,
not including the side effects caused by the medication. Some of which
might seem amusing to all but the sufferers. Obsessive behaviour leading
to a possible interest in porn, gambling or hypersexuality. People have
been known to gamble away their pension and the partners of the sex
obsessives have moved on from finding it exciting to wishing to be left
alone for a few days.
Now all this is bad enough, but not all of it will happen and for me,
most of it is a few years down the line. What does wind me up however is
other people's attitudes.
Take
Parkinson’s sufferers who have taken to blogging, with titles such
as “My Parkinson’s Journey”! Full of life-affirming positivity
and happy smiling photos. Considering that one of the common
symptoms is something called ‘Parkinson’s Mask’, a condition that
makes the face anything but smiley, all this smiling can be seen as either
ironic or tasteless depending on your view of things.
But why is
everything referred to as a journey these days? You even get some Z-rated
non-celebs who when interviewed after being kicked off a reality show
because he/she failed to convince some airhead to mate on national TV,
referring to their 20 minutes of fame as “A Journey”.
I’m sure Blair
also used the phrase ‘A Journey’ as the title for his autobiography,
So, if that's not proof enough, anyone who is still unconvinced that such a
phrase in any of its variant’s stinks, they are, I'm afraid, beyond
redemption.
Anyway, I decided to write my own blog, to give sufferers an alternative to all this cheesy positivity. And after two years of prevarication, I finally got around to it. It’s called ‘Parkinson’s is not a Journey’ and can be checked out at Parkinsonsisnotajourney (apologies for the blatant plug!).
The other thing, or perhaps more accurately person, that can cause me irritation, is the well-meaning but frankly not awfully sensitive Church goer. Of which there are too many.
When my news became common knowledge, in the main I was left alone by people obviously unsure of what to say. Fair enough, I am as inept in such a situation, scared of saying the wrong thing. But some other people obviously had an interest which wasn’t based on concern and who seemed to believe they had to ask out of obligation, and didn’t have the good grace to show an interest in my response. Nice.
However, the
one that annoyed me the most, someone who in 10 years had never attempted
to speak to me before, had in a fit of spiritual concern, decided to ask
if the diagnosis had shaken my faith. What presumption! And, actually
the answer was no. I’m too pig-headed for that. If faith is only for the
good times, it's no faith at all and I slightly resented the question. I
wonder what they would have done if I had said yes!
But I’ve also
been asked some searching questions: “Was I afraid of what
was going to happen to me?” My line, oft-repeated, was to
say “It could be worse, at least it’s not MND”, which whilst
true was a bit glib. So, when the Minister asked, over a pint or two, for
the first time I gave it proper thought.
So am I scared?
Not yet, but I
am apprehensive.
Ouch, Clive. I'm sorry to hear this. It must have been a shock. Sorry also that your doctor didn't display a great bedside manner.
ReplyDeleteThanks for your comments Carl. Consultants in this country have something of a reputation for being insensitive. Not entirely fair, but it does reflect a lot of people's experience.
ReplyDeleteYes it was a shock, but life isn't a box of chocolates. I have no right to expect nothing but good times. Life difficulties are a common experience, there is nothing to gain by crying about it.
And they do lead you to depending on God more and yourself less. Something I needed to learn.
Thanks for this honest post, Clive. It and your blog is a tough read.
ReplyDelete<<"someone ... decided to ask if the diagnosis had shaken my faith."<<
Jack suspects, what they're really asking is: "would such a diagnosis shake my faith?" In Jack's experience, suffering and weakness offers the opportunity open ourselves to the workings of God. Only when we are weak do many of us rely on God.
I agree. At the moment my weakness is more emotional than physical, although I feel the decline happening.
ReplyDeleteBut as I said, I can rage against the disease, but it's pointless to feel sorry for yourself.
And it could be so much worse.
I am very sorry to hear this. Keeping you in my prayers, brother.
ReplyDeleteThank you Brian I really appreciate that.
ReplyDeleteThank you for such a personal post, Clive, and for sharing your blog.
ReplyDeleteYou reminded me of an advert for a charity I saw a while ago that was 'accompanying women through their breast cancer journey'. I thought that was quite repugnant at the time, but I didn't realise it was such a common tactic. It seems to me that there's a good deal of denial behind this phrase; let's just pretend everything is ok and we're all just on a journey together. It's perhaps not surprising in a culture that now has no way of accepting its own mortality.
I'm sorry that you've had the experience of being avoided by churchgoers who don't know what to say, or worse, who say idiotic things. Having once been at the centre of a mile-wide exclusion zone after a bereavement, I'm sadden but not surprised by this. I think Jack is correct; that one man was really saying 'I don't think that my faith could survive this, please make me feel better by telling me that yours has been shaken'. He needs your prayers.
You're right that 'it could be worse', and that making peace with the diagnosis is going to be easier in the long run than raging against something that can't be changed. But it's also OK to allow your faith to be - not so much shaken - but re-formed by your experiences. Something like a third of the Psalms are people telling God they're pissed off with him in the midst of their tribulations, and that's God's official prayer book! We discussed Job the other day; his faith was not the same at the end of the book at it was at the beginning (and he also had to listen to trite opinions from immature churchgoers).
You will be in my prayers. Whatever the future holds, may God bless and keep you, and lead you deeper into himself.
Lain thanks for your comments. As is usual when reading you, you have a great ability in clarifying what I was only half understanding by myself. You are absolutely correct in your analysis of "the Journey" as are your other comments.
ReplyDeleteI've been struggling with what to write for my next post. Thanks to everyones comments I now know.
It will involve a bit of plagiarism!
I'm also sorry that you were shunned when you needed the opposite. To be listened to and embraced.
DeleteFeel I need to clarify what happened to me. My friends at church were very good and took me to the pub to listen and chat. I am very grateful to them and I should have been fairer in the post.
I really don't know what the person who asked about my faith was doing. At the time I simply assumed that curiosity had got the better of them!!
But you and HJ have made me reassess that.
Thank you, you're too kind ☺️. I'm glad you have supportive church friends, I just wish that churchgoers in general were a bit better at empathising with people during life's tougher patches, I think it's an area in which we really fail people. The least we can do is treat suffering people like normal human beings, rather than lepers. Reflecting on my own experiences, I think a lot of people are clinging to a fragile veneer of 'everything is OK', and it's a kind of mental self preservation instinct to avoid anyone or anything that threatens it (I've seen people take monumental detours around the church to avoid adults with learning disabilities, for example). It's not helped by preachers glibly tripping out verses about God giving us everything we ask for if we truly believe in him, and all things working together for the good of those who love God, as if everything should be butterflies and rainbows for anyone who believes in Christ (conveniently ignoring the fact that Christ himself was tortured and nailed to a cross). There's still an insidious residue of the prosperity gospel lurking in many people's theologies, which causes huge dissonance when they see something that contradicts that (see, again, Job's counsellors). So I try to be forgiving.
DeleteI do struggle more to forgive the same behaviour in my then priest, who obviously couldn't get out of the conversation fast enough after chucking some Bible verses and books at me as though he were warding off a vampire. Especially when I compare that with the Buddhist monk who took my friend's funeral, who was simply intently present with me for an hour, gently absorbing my tearful and incoherent nonsense without feeling the need to offer platitudes or empty comfort. Christ didn't shy away from people's pain, I think churches need to help Christians be better at doing the same.
@ Lain
DeleteSometimes a silent, loving embrace is all we need - not words. A space to let us weep. It's a cultural issue in the West and priests are not immune to it.
@Jack
DeleteThis is true. The western mind tends to view everything as a problem needing a solution. I don't think that the intensely academic nature of seminary formation helps with that, either. Very few people are able to simply sit with a mystery and not try to figure it out.
@Lain, yep that's me!
Delete@ Lain
DeleteYes, but we can glimpse some of the meaning behind the mystery of suffering from scripture and from spiritual writers.
As Christians we can't just say, "Who knows?"
That said, there's a time for silence, to just listen, and to give space to folk to simply grieve for their loss.
@ HJ
DeleteWe don't say 'who knows', but we can say 'God alone knows' - which is effectively the answer that Job got. Suffering is temporary - it wasn't part of God's creation in the beginning and it will be wiped away at the end (if the Gospel has any value). I don't think it has any intrinsic meaning; it's what we do with suffering that creates meaning. Pain, as someone put it, can either be transformed or transmitted. It can drive us towards God, or drive a wedge between us.
We can discuss suffering and theodicy academically and theologically, but the time to do that is rarely when someone is sitting among the ashes, scraping their sores with potsherds. Job 2:13 was the most appropriate pastoral response that his counsellors managed, IMO.
Oh, Jack agrees there's a time and a place for thinking and discussing this. Christ’s approach is not an intellectual answer to an academic puzzle. Reconciling the existence of an all-good God with evil can be tackled in this manner, but the problem of real pain is concrete, experiential, and personal. However, I do believe redemptive meaning can be found in suffering.
DeleteGood passage from Job, btw ...
DeleteI agree that redemptive meaning can be found *through* suffering, but I don't think there's any redemptive meaning *in* suffering per se. I don't think there's any redemptive meaning in suffering that leads someone to take their own life, or tsunami that kills thousands, or child trafficking. I think there's often a temptation to try to impose meaning on suffering in order to explain it away, or 'let God off the hook' as it were, because suffering is easier to bear if there's an apparent meaning or reason to it. The pain of childbirth, for example, is more bearable than the pain of, say, holding one's hand to a red hot iron, because there is a purpose and desirable end to it. So you find people who'll say things like the shoah led to global efforts to prevent the persecution of ethnic groups or families who've lost children to terminal illnesses talking about the good friendships they made in the hospital and the charitable efforts they've set up as a result. Or the idea that all earthly suffering is somehow a necessary part of God's mysterious plan for our redemption, rather than an unpleasant byproduct. It's true that suffering can knock down those barriers between us and God that we can't knock down ourselves (usually by making us humble), but that's God working in our weakness, not a result of the suffering itself. If suffering were redemptive per se (rather than redemptive only inasmuch as it's united with the suffering of Christ), it wouldn't be destined for the lake of fire.
DeleteI also think that one has to be careful to avoid judging suffering, which is where the ability to simply hold it as a mystery and say 'we don't know' comes in. In my experience, Protestants tend to be more likely to err on the side of treating suffering as punishment, on the basis of misreading verses describing God's discipline, and indicative of one not having enough faith/being a sinner, etc., so become avoidant of suffering as a sign that they've done something 'wrong'. Catholics and Orthodox, on the other hand, tend to err on the more masochistic side and view suffering as a necessary part of redemption in such a way that they become almost desirous of it as a badge of honour (misreading the Fathers). In my view, it's better to simply learn to live in God in and out of season, neither avoiding suffering nor desiring it (Phil 4:12-13).
St. Sophrony wrote: "St. Peter reminded the early Christians in their despair that 'the Spirit of glory' (1 Pet. 4:14) rested upon them. One thing...is not open to doubt: the hour will come when all our trials and tribulations will disappear into the past. Then we shall see that the most painful periods of our life were the most fruitful and will accompany us beyond the confines of this world, to be the foundation of the Kingdom 'which cannot be moved' (Heb. 12:28)."
@ Lain
Delete<<redemptive only inasmuch as it's united with the suffering of Christ<<
That's the basis of the Catholic position.
See this Apostolic Letter written by Pope John Paul II, a man who experienced considerable suffering in his own life:
<<"Declaring the power of salvific suffering, the Apostle Paul says: "In my flesh I complete what is lacking in Christ's afflictions for the sake of his body, that is, the Church"(1).
These words seem to be found at the end of the long road that winds through the suffering which forms part of the history of man and which is illuminated by the Word of God. These words have as it were the value of a final discovery, which is accompanied by joy. For this reason Saint Paul writes: "Now I rejoice in my sufferings for your sake"(2). The joy comes from the discovery of the meaning of suffering, and this discovery, even if it is most personally shared in by Paul of Tarsus who wrote these words, is at the same time valid for others. The Apostle shares his own discovery and rejoices in it because of all those whom it can help—just as it helped him—to understand the salvific meaning of suffering."<<
https://www.vatican.va/content/john-paul-ii/en/apost_letters/1984/documents/hf_jp-ii_apl_11021984_salvifici-doloris.html
I think the problem with that argument is that St. Paul's sufferings are suffering for a reason, like childbirth: he rejoices in 'suffering for your sake' because he is enduring persecution in order to preach the Gospel and save souls (and, presumably, he sees the opposition as a sign he's on the right track). He already has salvific assurance (he has seen Christ), which renders his present suffering as nothing compared to the glory which is to be revealed; the pain of the race as something to be endured so that one might win the laurels. Again, it's not the suffering per se that's important, it's that he gets people (and himself) to the finish line. Had he been able to do this without suffering, I'm sure he would have chosen to do so. I'm happy to endure the suffering of being hit by a car if I'm pushing a child out of its path, but I won't go and stand in the middle of the road.
DeleteThe argument also doesn't account for indirect suffering; where we suffer because of what's happening to someone else. It's one thing to find meaning in suffering that only affects oneself, but I think it would be ghoulish for me to say, for example, that there was any salvific meaning in the suffering I've experienced from the hidden pain that drove my friend to suicide. Or for someone to make the same claim among the ashes of Auschwitz.
There's also the fact that suffering seems to push at least as many people away from faith as it pulls deeper in. Perhaps not the best marketing tool. I would say that salvific meaning lies *beyond* suffering, not in it (one dies with Christ not to die, but in order to rise with him, and this is not simply an eschatological statement). I suppose the question ultimately becomes; if suffering is salvific, should a Christian take steps to mitigate or avoid it? Are we frustrating God's purposes every time we take ibuprofen, or visit the doctor? Who are we to decide that one kind of suffering is salvific and should be endured, but reach for the medicine cabinet for another?
My step-father had Parkinsons, and even became a (rather successful) campaigner for getting mobile Parkinsons nurses in his area. He said that everybody gets their own unique customised version of the disease. Wishing you all the best.
ReplyDeleteThanks GD. Yes I've heard that as well.
ReplyDeleteProf G - can you recall your blog name(s) on Cranmer back in 2018? I've been contacted by an ex-Cranmerite wanting to know.
DeleteI think it was simply CliveM I'm not a 100% sure of the capitals
ReplyDeleteWho is it?
ReplyDeleteDannybouy.
DeleteWell he hasn't been banned yet, so encourage him to come along.
DeleteIt would be nice to have him back.
Seconded, it would be nice to see Danny again.
DeleteI've also been in touch with Dannybouy, and he has fond memories of many people from Cranmer (some of whom are now here); he has been encouraged to come and contribute.
DeleteHey Clive, how is Mrs Clive holding up?
ReplyDeleteInitially not well. Lots of tears and contacting friends for lengthy, weepy conversations.
ReplyDeleteThen she discovered that there was a lot of physiotherapy I could take, exercise classes, Parkinson's groups and she was in her element. Suddenly she had found new ways of telling me what to do and organise me.
She likes to be in control 😖
Yes, Jack has read all about your struggles with Mrs Clive. God Bless her.
DeleteThese things are sent to try us!
Delete"She who must be obeyed"
DeleteYep!
ReplyDeleteOh Clive....this is such sad and awful news. You were always so nice to me on Cranmer and made my visits so much easier....I always thought you were the best poster boy for Protestantism . Now don't listen to that nurse. I am going to send you my grandmother's recipes and I promise you will never experience constipation ever. One problem sorted:) Hugs to you dear one
DeleteCressie
x
@ Cressi
DeleteWelcome to our little island! Good to see you made it safely following the sinking of the SS Cranmer.
Welcome Cressie, I hope you're keeping well. Good to see you here, the blog needs more women to balance out the endless football!
DeleteLain
@Cressie
DeleteI was hoping that sooner or later you'd turn up on Jack's little ísland!
It would have been sad not to have bumped into each other again.
Hope you are well. Stick around, Lain needs feminine support.
Actually she doesn't, she seems well capable of wiping the floor of all comers all by herself!
But it will be good to have you around!
@ Lain and Cressie
DeleteJack is more than willing to accept articles on netball. knitting, cooking, house-keeping etc.
Tsk....not biting ! I am intending to bring some high culture to this blog which was an essential embodiment in Catholic Convent education but sadly overlooked in the Catholic Boys education in favour of primitive sports such as football... https://youtu.be/5hwOveZlugk
DeleteThis is the best hair you will ever see on a concert pianist and the Chopin is pretty good too!
I hope we do not have to use hieroglyphics or leave spaces to put on a video like we use to on Cranmer
DeletePraying for your friend, Jack.
ReplyDeleteO holy Father, heavenly Physician of our souls and bodies, who hast sent thine Only-begotten Son our Lord Jesus Christ to heal all our ailments and deliver us from death: do thou visit and heal thy servant, granting them release from pain and restoration to health and vigour, that they may give thanks unto thee and bless thy holy Name, of the Father, and of the Son, and of the Holy Spirit: now and ever, and unto ages of ages. Amen.
Thank you, Lain.
DeleteNow here's a hot topic. Indonesia an Islamic nation with a population over 280 million has passed a law that sex outside marriage earns a prison sentence of one year. Cohabiting defacto couples get 6 months. This applies to tourists as well. Christianity has the same belief that sexual activity outside of marriage is sinful so why are so many Christians horrified at this new law?
ReplyDeleteEr ... because Western prisons would be full to capacity within days!
DeleteJack may use this as the subject of a new post (after the football).
Es ist ein Ros entsprugen....my choice for Christmas carol....listen to this....so wonderful
ReplyDeletehttps://youtu.be/xZ_WIZ29yys
entsprungen....oops my German is a bit rusty
ReplyDelete@ Cressie, you're on the wrong thread!
ReplyDeleteIt's the 'Desert Island Videos - Favourite Christmas Hymn' page you need to be on!