Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


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Stupidity knows no bounds

No, I’m not referring to Trump, although he could be used as another example. I’m referring to myself. I’m kicking myself in hindsight and calling myself a bloody idiot.

So what did I do that was stupid? I drove to a local fast food outlet to pick up dinner for the wife and myself on Friday evening. No, I’m not referring to the consumption of fast food occasionally as stupid, nor to the fact that I drove instead of walking. I chose to leave home when it was potentially unsafe for me to do so, and I chose to drive at a time when I posed a danger to myself and others.

We all know that alcohol impairs one’s ability to drive safely, and most of us won’t drive after drinking, either because we don’t want to put ourselves and others in harm’s way, or because of the repercussions that will be heaped on us if we get caught.

(Drink Dive ad from 2007)

What many people aren’t aware of is that a migraine can seriously affect one’s ability to drive safely. Even fewer people realise that driving can be impaired up to three days before a migraine headache occurs.

Not every migraineur is impaired this way, but for some, cognition is impaired before the headache stage: during the prodrome and aura stages. I fall into that category.

Migraine goes through four possible stages: prodrome; aura; attack/headache; postdrome. Not every stage occurs in every migraine attack. For those unfamiliar with the stages, a very brief description follows:

Prodrome: Begins hours to days before the attack stage. Experienced by about 60% of sufferers. Symptoms can include: mood changes such as depression, irritability or euphoria; food cravings; sensitivity to light , sounds and smells; fatigue and yawning; frequent urination; muscle tightness.

Aura: Typically lasts for up to an hour, but in rare case can last considerably longer. Experienced by one in 5 migraineurs. Symptoms can include: visual disturbances such as zigzag lines, stars/strips/spots, scintillation, blind spots, and tunnel vision; Numbness; loss of motor skills; confusion; Alice in Wonderland syndrome; loss of spacial perception; vertigo; memory loss; visual and auditory illusions; aphaia; disorientation.

Headache: Typically lasts hours to days. Occasionally migraines can occur without this stage. Symptoms include: severe throbbing headache, sensitivity to light, sound and smells; nausea; vomiting.

Postdrome: Typically lasts hours to days. Symptoms include a “hungover” feeling; symptoms similar to the prodrome stage.

They may appear to be 4 distinct stages, but in my case, the transitions can take hours and there’s considerable overlap of symptoms. I’m unable to distinguish between the prodrome and aura stages unless the visual clues kick in, and sometimes I recognise the prodrome and aura stages only in hindsight. And that is where my stupidity arose. The clues that I was in the prodrome stage of a migraine were staring me in the face, but I failed to notice them.

I am very mindful of the potential hazards that I might be confronted with during a migraine, and I tend to err on the side of caution. While I can accept a higher level of risk for myself that results from my migraine symptoms, I’m not prepared to place that risk on others. Before I undertake any activity I normally take some time to consider the possibility that a migraine might be just around the corner, or even if a silent migraine has already arrived. Except Friday.

I drove while visually impaired and initially didn’t realise that I was. To make matters worse, when I realised that my vision was impaired, I drove home – an executive decision I should not have made.

So how did all this play out? The first clue surfaced on Wednesday. We decided to have sausages for lunch and I offered to drive to the supermarket to pick some up. That was the first clue. “How so?” you may ask. Well, I’ll tell you.

We have no idea what are the triggers for my migraines are, except for one: the red tone lighting frequently found over the meat section in supermarkets. It takes less than a minute under those lights before I start to feel light headed and within a few minutes I am completely disoriented to the point where I can’t find my way to the checkouts or exit. In fact I exhibit symptoms that can be confused with a stroke. When we first discovered this phenomenon, I first I thought it might have been a psychological reaction to seeing all the meat, but when we realised that it was related to specific shops, but not others, we eventually were able to pin it down to the lighting.

These days I avoid supermarket meat sections like the plague, and in stores where the meat section runs along the side of the shop at right angles to the isles, I avoid going to the ends of the isles, and keep my eyes diverted away from the meat. So what possessed me to even offer to pick up the sausages? And why didn’t the wife pick up on it? She knows what happens  when the lighting triggers an attack even better than I do. She has to manage me while I’m kind of spaced out and not totally aware of the situation. Clue missed.

At the supermarket I had already picked up the sausages before it dawned on me what I done. To say that I was concerned is an understatement. I was by myself and if the lighting triggered an attack, I could be in an ambulance and on the way to hospital with no choice in the matter. It’s happened before. Several times.

What I should have done when I realised my mistake was phone the wife or another nearby family member about what had happened and for them to come and get me. I didn’t. I hastily paid for my purchases and sat in the car waiting for the worst to happen. That was a stupid thing to do. If an attack had come on, I might have decided to drive, but I would not have had a clue where I was going. I wouldn’t have known where home was. Clue missed

I waited for nearly ten minutes before concluding I was lucky on this occasion, so I drove home. It was there that I realised that I had made a poor choice of sausages. One pack was Angus beef. No problem there, but the other pack was venison and herbs. To the wife, venison equals Bambi. Because of her sensitivity over this, I never bring home food containing venison. Clue missed.

At 2 am on Thursday morning I got up and made myself a couple of sandwiches. I haven’t done that since my twenties. I felt really hungry. I never feel hungry except before the onset of a migraine. It never occurred to me that this might be one of those occasions. Clue missed.

Later on Thursday I drove into town on some errands. I drove for the fun of it. Heavy acceleration and braking. Feeling the tyres grip under fast cornering. It was exhilarating. I don’t drive like that. Well not for the last 45 years. Clue missed.

I chatted with every one I met and enjoyed it. I have no idea if it was reciprocated. I didn’t care. Normally I converse as little as possible with persons I’m unfamiliar with. Experience has taught me to be cautious as I’m completely unable to read body language and only the most basic of facial expressions. I usually can’t read between the lines. I’ve learnt the hard way to carefully measure what I say and how I say it. But not on Thursday. Clue missed.

I went to bed four hours earlier than usual. I was unable to stay awake. Clue missed

In the very early hours of Friday morning I got up and made myself some sandwiches. Second night in a row. Clue missed again.

On Friday I worked on a number of Websites, but I frequently forgot HTML and CSS coding I use regularly and had to resort to cheat-sheets. I frequently found myself editing the wrong files. Clues missed.

Late Friday afternoon, I found that words were disappearing off the screen, or lines of code started undulating in front of my eyes. I knew I had to stop. I put it down to eye strain. Clue missed.

I this point I should have been fully aware that I was well into the aura stage. The sunlight was very bright, the shadows very dark. The face of the wall clock was blank. We discussed what to have for dinner. I kept tripping over words. I Couldn’t think of the words Turkish kebabs. We “agreed” on KFC. Clues missed.

There’s a deep dip where our driveway meets the street and I normally cross it at an angle to avoid the front air dam scraping the road. Except then. Oops. Clue missed.

I drove to the kebab shop. Wrong place. Headed for KFC. Clue missed.

At KFC the illuminated menu above the counter had pictures but most of the words kept shimmering in and out of view. And I couldn’t remember what we had “agreed” to purchase. It was then that it finally dawned on me that I was in the aura stage of a migraine and that I should get home as soon as possible. Decided to telephone the wife to confirm what I was supposed to order. No phone. I never go out without my phone. Decided to order what the wife probably wanted, No problem ordering the Hot Wings, but I could not think of the name for a Zinger Burger. Finally I resorted to describing what it was.

By the time the order was ready, everything before my eyes was shimmering, and my peripheral vision was all but gone. I should not have driven home. I could no longer see the speedo and other dashboard instruments and still it didn’t occur to me that I should not drive. I can remember thinking I must hurry home before it got worse. So I did hurry. How stupid can one get?

If someone had stepped out into the road in front of me, (a) I probably wouldn’t have seen them, (b) I would probably not have known how to avoid them if I did see them, and (c) even if I did, my reaction time would have been too slow. As it was I didn’t see a vehicle approaching from my right at one intersection until I started to move into it. In fact I’m very lucky to have made it back home in one piece.

Today I’ve been re-evaluating all the procedures the wife and I have developed over the last decade or so to prevent exactly what happened yesterday. It had been working very well up until now. I still don’t understand why so many clues were missed. I am very angry at myself and to a lesser extent my wife. Was it a one off slip of our guard, or have we become complacent because it has been working so well? Or are we both are loosing the ability to recognise the signs.

I really don’t want to hand in the keys for driving just yet. My mother drove until she was ninety and I’d like to think I can do the same. But yesterday has given me a scare.

 

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Three days lost

There are two conditions that conspire to make my life difficult at times. One is considered a mental disorder by the medical profession although I hope that in time this attitude will change. Once homosexuality was considered a disorder by the medical profession, and when I was a child, left handedness was certainly treated as punishable condition.

How times have changed. Today we understand that what is considered “normal” is in many cases, just the bulge in a bell curve of human variability, and one doesn’t need to be “cured” if one tends to be at either end of the curve.

Of course I’m referring to autism. While autism has its challenges, most of those challenges are because of the way other people, in other words “society”, respond to how I exhibit aspects of autism. While I think autism awareness is ideal in theory, I’m afraid that awareness isn’t accompanied by understanding. In Western culture, it seems that it’s being demonised as an epidemic; something that needs to eradicated, even to the point where the desire to  eradicate the person with autism is seen as understandable, although thankfully not condoned. This must change.

The other condition, and the one that has had the most effect on me over the last few days, is considered a disorder, by the medical profession, and with which I heartily concur, is migraine. Having been laid low by a particularly painful attack that has kept me in a darkened room for three days, unable to eat, think rationally or coherent thoughts, I would like nothing better than for science to find a cure, or even to reduce the severity, frequency and duration of attacks. Looking at the Migraine Buddy app on my phone, I see the following statistics for the last 31 days:

No. of attacks: 14
Average attack duration: 32 hrs 25 mins
Attack days: 27
Attack-free days: 4
Pain Intensity
(1 – 10 scale)
Minimum: 3
Average: 6.3
Maximum: 9

The three most common symptoms (apart from pain) are sensitivity to light and noise, and Tinnitus. These occurred in every attack. However following symptoms occurred in at least half of attacks: Aphasia, giddiness, sensitivity to smells, fatigue, blurred vision, blind spots, ataxia, and confusion, with nausea occurring in only six of the attacks. Distorted spatial awareness, hemiparesis, tremors, dysarthria, and facial numbness occurred in five attacks. There are a few other less common symptoms, but I think the list is long enough as it is.

While the frequency and duration of attacks are a little up on a normal month, it’s not by much. Migraines do limit what I can do and it means that I’m not able to make definite plans. Everything depends on my condition at the time. It means that I’m often seen as “unreliable” because I can’t commit to being at a particular place at a particular time.

Even blogging has to go by the wayside during a migraine, as I’m unable to string a coherent paragraph together, and I’m unable to perform even the basics of proof reading during many attacks.

Currently I’m in the postdrome phase of the last migraine. This means that although the throbbing head pain is gone, it still feels like I’ve been hit by a bus, and I’m not sure how coherent my writing is. The postdrome phase can take as long as a day, sometimes longer,  to finally fade away, but at least, that little guy with the sledgehammer who has been so busy inside my skull for the last 3 days has gone for now. For that I’m extremely grateful.

WoW – a spectacle

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Like many people on the autism spectrum I am hypersensitive to sensory input – especially visual and audio input. This puts some events out of my reach. Shows with flashing lights, pyrotechnics or loud music can trigger severe migraines that can include fuge states or display symptoms that look so much like a serious stroke that even doctors misdiagnose what’s happening. One show I would very much like to see live is WoW – World of Wearable Art.

Our son in law is involved in WoW and our daughter invited my wife and myself down to Wellington to see the show. It’s something I’ve always wanted to see ever since it started back in the 1980s. However, after discussing the matter with family, we all came to the conclusion that it was not a show would have a good outcome for me.

So this evening while my wife, daughter and grandchildren spent an evening spellbound by the spectacular sets, costumes and choreography, I spent a very quiet evening in my daughter’s home babysitting a cat and dog. Such is life.

(Excerpts from the 2015 show)


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A week of it

It’s been one of those weeks where it has made itself very present in my life. In fact it has been intruding somewhat more frequently than normal over the last month or so.

At the beginning of the week (or was it the weekend? Timelines are rather vague things when it is around), I went out for a short evening stroll of ten to fifteen minutes only to return home five hours later, shortly after midnight.  Obviously it had plans I’m not aware of. I have no idea where it lead me, but judging by the wear on my sandals and the pain in my leg muscles the next day, I walked nonstop for the entire time.

Then mid-week, I took the car to our garage for its six-monthly WoF (Warrant of Fitness). As I was handing over the keys, I felt that odd out of body sensation that I sometimes get before it makes an appearance. Fortunately there’s a supermarket next door to the garage, so I decided to head there and buy an isotonic drink in case it was being triggered by dehydration.

I remember walking through the supermarket carpark (parking lot), but have no recollection of entering the store. As best I can work out, a friend saw me staggering about in the town square over an hour later.

Apparently others had seen me but assumed I was intoxicated and did nothing to assist me. However she knew enough about it to get me safely home.

By Friday my wife was concerned that it had been around almost continuously for a week and showing no signs of leaving. She managed to get an appointment at short notice at the medical centre. Apparently the doctor took one look at me and promptly ordered an ambulance.

I have no recollection of visiting the medical centre or of the trip to hospital. I do have a vague recollection of having a fascination with a stream of lights, which were probably passing ceiling lights as I was wheeled down corridors.

The first clear recollection I have is being told that I would be going for a CT scan shortly. I had the scan at about 2:00 am on Saturday morning.

It seemed to have abandoned me by midday Saturday, and I was informed that I would be discharged later in the day provided I could show I could walk steadily. Finally I was given my discharge form mid afternoon, and an hour later I was home.

Has it left me for the time being? It doesn’t seem so. It had taken up residence again by the time I woke up this morning (Sunday). It is just being a minor nuisance at the moment – a mild pulsating headache and a misjudgment of clearances between objects on my right and and various parts of my anatomy (and I have the bruises to prove it). I am hoping it will soon get bored and leave me alone for a while. Time will tell.

I notice that it has been given a new name. On previous discharge forms it was either not given a first name, or was given a first name of “atypical”. This time it had been given a new first name of “hemiplegic”. It‘s last name hasn’t changed. That’s still “migraine”.

Hello hemiplegic migraine. I can’t say I’m pleased to know you.


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Migraines suck

Tonight the wife and I are supposed to be enjoying the Royal Edinburgh Military Tattoo in Wellington. We bought tickets for the event many months ago and paid an arm and a leg for the perfect seats. We were both keenly looking forward to seeing the spectacle tonight.

Instead I am lying in a darkened room in somewhat of a fogged frame of mind. The mental fog is a direct result of the migraine, and while it dulls my cognitive skills, it also dulls my perception of pain. Something I am grateful for.

We drove from Feilding to Waikanae yesterday to stay with our daughter and family. Waikanae is only an hour from Wellington on the suburban train system and as the stadium where the tattoo is being held is only a few minutes walk from the Wellington railway station, it made more sense to take the train instead of trying to find parking space within walking distance.

Shortly after midday I felt that out of body sensation that often precedes a migraine and by mid afternoon I realised that a migraine was on its way as my vision began to loose its precision.

I took some pain killers and with a sinking feeling retreated to a darkened and quiet spot in the hope that it would all blow over before it was time to leave.

Unfortunately by early evening I could no longer walk without staggering and my ability to comprehend language was on the way out and I realised that I’d  be courting disaster by going out.

So our daughter is accompanying my wife to a fantastic night’s entertainment while I struggle to keep from drifting into unreality.

I recently discovered that at times like this, conversing at the slow pace required by typing with one finger (all I can manage at the moment) I can remain somewhat in the real world one letter at a time. Even though the light from the phone screen is very unpleasant, even at its minimum setting, and I hit the wrong letters more often than the correct ones  (thank goodness for predictive typing), by communicating at a pace I can manage, I am finding that I cease to be enveloped in that fog of nothingness that has so often accompanied the migraines.

Of course there’s the possibility that I’ll ramble somewhat incoherently, but if as I am beginning to suspect, it shortens the duration of the migraine, and/or reduces its severity, then that’s something readers will have to put up with.


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Disabled? I Am Legend!

I have never considered being an Aspie and having chronic migraine disabling any more than the need to wear corrective lenses. While I would love to loose the migraines, 55 years of wearing spectacles is no more an inconvenience than wearing clothes. On the other hand, my differences due to Asperger’s Syndrome are intrinsically part of who I am.

I am not disabled, but society often disables me. Unstrange Mind explains it so well:


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A week in the life of … (part 1)

As he passed through the bedroom doorway, his right shoulder collided painfully with the door-frame, followed immediately by the little toe on his right foot doing the same. While he is accustomed to abusing his shoulder in this manner, the same can’t be said for the toe. If he was into swearing, this would have been an opportune time to do some. The toe is positively yelling at him to say something – anything – loud and inappropriate. As usual, he can’t think of a single expletive in the heat of the moment, but he manages to expel air between clenched teeth, making a satisfying groaning sound, quite appropriate for the situation he thought.

The throbbing toe, while painful, distracts him from the the little man in his head bashing the inside of his left temple with a sledgehammer. As he descends the stairs, the throbbing in his toe subsides, and the thumping pain in his head returns with vengeance. He wishes that the toe would complain for a little longer – “a change is as good as a rest” he recalls. He feels sorry for the little man with the sledgehammer. The man has been swinging it non-stop for two days, so he’s probably quite tired by now.

At the foot of the stairs, he turns and goes into the kitchen carefully keeping as far to the left as possible. No sense in colliding with another door-frame. His wife isn’t there as he expected. He goes to the window and looks down to the carport below. No car. She must have left early. Did she say good-bye to him this morning? He can’t recall. He turns to look at the clock on the wall. No clock. He looks away and then back to where the clock should be. Slowly it fades into view. First the sliver grey frame, then the white face followed soon after by the numbers. Finally the hands appear. Eight o’clock.

Coffee time. He goes to the cup rack his daughter made at school many years ago. A beautiful wood-stained object with three crossarms capable of holding six large coffee mugs. He waits for a cup to fade into view. His first attempt at grabbing a cup fails as his hand passes straight through it. He closes one eye and has another attempt. Success. He picks up the stainless steel coffee plunger. By its weight there is at least two cups of coffee remaining. He pours out a cup, then wipes up the copious amount of liquid spilt onto the bench-top.

He searches for the sugar bowl. He knows it should be on the island counter-top and starts scanning for it. On the third scan he locates it, almost directly in front of him. He tips two teaspoonfuls of sugar into the coffee cup, not noticing that he spilt most of the second onto the counter. He makes his way to the microwave, and places the cup inside. He goes back to to gather a dishcloth to wipe the spilt coffee from the turntable. Closing the door, he presses “Warm+” and then the “Start” button.

He waits while the microwave’s infra-red sensor monitors the rising temperature of his drink. He becomes aware of a dampness in his right sock. Had he spilt something and stepped in it? He looked down at the floor. Red streaks. Where did they come from? Plum jam? Beetroot? He doesn’t recall seeing either today? It looks like … blood!

To be continued.


Contrary to popular opinion, migraines are not just a bad headache. They can affect a sufferer in many different ways. This story is an attempt to describe a week in the life of a chronic migraineur. The migraineur in the story is not exceptional. His symptoms, while not common, are not as extreme as experienced by many others. He has auras and other visual disturbances, loses fine motor control, and experiences cognitive and executive failure during attacks.

Between attacks he has been described as of above average intelligence, open minded and having a dry sense of humour. During attacks he has been seen by others as being drunk or under the influence of drugs, having a stroke, or suffering from dementia.

The story is being told because too many people have little or no tolerance of those who are “different”. The aim is not to gain sympathy. It’s not wanted or needed. The aim is to give a little insight into the life of just one person who is just a little different from the norm. If it paves the way for a few to become more accepting of others, then it will have served its purpose.

The person portrayed in the story is real and and the events described will be those that happened to him over a single week. I will endeavour to be as accurate as I can, but as some events cannot be recalled fully, some “filling of the gaps” may be required. For this, I hope I am forgiven.

In case you are wondering how I am able to tell this story in detail, it’s because it comes from personal experience. The week is just one out of the fifty two I lived this last year.


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“If I was you, I would kill myself”

Believe it or not, those words (slightly paraphrased) were said to me by a counsellor I was seeing. That was five years ago. The reason I was seeing the counsellor is irrelevant to this story suffice to say that it was related to a matter that seriously affected my relationship to those nearest and dearest to me.

I had just completed describing my everyday life to her when she uttered those words. It wasn’t something she blurted out, but was a slow and careful statement made after a moment of silence. I wasn’t shocked by her statement, but I remember thinking that it was was an inappropriate comment for a counsellor to say to a client. I didn’t understand then, and still don’t understand now, why anyone in my situation would want to contemplate suicide, but I when I have discussed the inappropriateness of her comment with others, many have tended to agree with her.

So what is it about my life that others think should make it unbearable?

For as long as I can remember I have had headaches. I’ve also had periods when I become totally disoriented and confused. There would be occasions when, for example coming home from school, I would discover I was somewhere I didn’t recognise and didn’t have a clue how I got there. There would be times when I couldn’t comprehend what people were saying even though I understood each of the words they used. Sometimes I would forget the meaning of specific words. Sometimes a word I wanted to utter was replaced by something totally different. Sometime my sensitivity to light and sound became unbearable. Often these cognitive problems coincided with the headaches, but not always. Not knowing any different, I thought this was normal.

As I entered puberty, the headaches become more frequent and often were accompanied by bouts of nausea and vomiting. These were diagnosed as migraines. These migraine attacks would  occur somewhere between  once every few days to once or twice a month. I was still plagued by the cognitive problems but less frequently than the headaches, and not realising that they were not normal, I never mentioned them to anyone. I was assured that I would “grow out” of the migraines, and by the time I was twenty, the migraine attacks were down to about one every two or three weeks.

This state of affairs remained until I was in my thirties when the migraines slowly increased in frequency. It was also beginning to dawn on me that there were significant events that I had no memory of, and couldn’t be explained away as forgetfulness. There were times were I felt a distinct disconnect between my mind and my body – almost like I was simply an observer of another being. I also noticed that sometimes I would forget how to do simple things such as tying my shoelaces, or, if I did remember how, I couldn’t get my fingers to cooperate. I became sufficiently concerned about these issues that I finally mentioned it to my doctor when I turned forty.

A series of tests revealed nothing untoward, and I suspect the medical profession thought I was making it all up. I almost convinced myself that it was “all in my mind” and perhaps I should seek the help of a psychiatrist. I didn’t. The migraines continued to increase in frequency and intensity through my forties, as did the cognitive problems. I found I often missed door openings and collided painfully with the door frame or find that the fifteen minute drive from work to home would take an hour and a half.

I had just turned fifty when it was decided I could no longer work full time, and I had my first EEG and brain MRI. The EEG was “inconclusive”. The MRI revealed an unusual occurrence of white matter, but was “considered not to be relevant” to my symptoms. Shortly after this I was picked up by the police as I was apparently staggering around town as if I was intoxicated. It seems they thought I might be having a stroke and when I came to I found myself in the unpleasant noisy and brightly lit environment of the Emergency department of a nearby hospital.

This was the first of many occurrences where I have ended up in hospital with stroke-like symptoms. Despite multiple MRIs, EEGs, CT scans, x-rays, blood tests, spinal taps and psychiatric examinations, no definitive explanation has been found. The closest they have come to a diagnosis is “it’s possibly atypical migraine”.

At sixty I was diagnosed as being on the autism spectrum. This possibly gives an explanation as to why I don’t feel as distressed about my condition as others think I should be. And while I can intellectualise why perhaps others might find my life is distressing, I just can’t feel it.

Now I’m in my mid-sixties, and my headaches, cognitive skills and motor skills fluctuate on a daily basis. Some days I’m almost in a vegetative state, on other days I feel like I’m a kid again. Some days I worry about the stress I undoubtedly impose on my family.

But on the whole, I am happy. I can still admire the beauty of a sunrise, experience the thrill of a thunderstorm, delight in the squeals of joy from small children. When I’m able, I can still enjoy taking part in a deep philosophical discussion, or feeling the breeze on my face on a long walk.

Yes, life is good.