Rod’s Health Journey

My health journey actually began when I gave myself permission to be vulnerable.

Let me explain. I’ll need to give you a few details for background. I am number 8 of 9 kids, and soon after I was born, we started moving house frequently. I actually moved 16 times before my 15th birthday and had attended 10 different schools.

I was 8 years old before my family had any idea that I was profoundly deaf. I had learned to read emotions as a more reliable mode of conveying information than reading lips and speech. It was my reading lips that alerted my family that I had a “problem”.

When the doctor had a look, he suggested that I had often had earache, that my eardrums were permanently scarred, and that I would never hear any better than I do. The fact is, we were always on the move, always busy. There was no time for me to be sick, no point in complaining about earache, that was just life. I coped. I have no regrets. But I was the child who never complained about anything, who was always easy to deal with. When my mother found pools of pus on my pillow, she asked why I had not told her, “my ears always hurt, Mum.” was the answer I gave her.

I have since grown up. The boy who did not complain became a man who would not. It became increasingly important that I not be seen to be vulnerable in any way. So I became the image of robust good heath, I could eat anything and I could do nearly anything (or so I thought). I was physically active for most of my working life.

That describes much of my first 40 years of life. I had occasional bouts of injury, but they never lasted long.

Then I went to America to marry my wife. At first, I had intended to get my green card and work. When our son made his presence known, I was to be the at-home parent, and later the homeschooling dad. I could live with that.

My wife’s first order of business was to get me to have a sleep test conducted because she was very alarmed that I woke gasping for breath many times each night. (Of course, I had no memory of such things!). I did as she suggested and was very surprised when they put the mask on me at about 4 am. Between 4 and 6 were the best 2 hours sleep I could remember having in at least 10 years! I have used a C-pap ever since then, and do not sleep without it. I was dying, many times per night, and I had no idea! I suddenly went from “invincible” to “vulnerable”. That was my first taste of my own vulnerability, but it would not be my last!

Part of my immigration process was to have a chest ex-ray (which I had never had in my life to that point). The doctor asked me how I felt, and I said something like “Fine until you asked me that!”. It turns out that my chest ex-ray looked like a Fantasia Lamp: there was white stuff all through my lungs. “What is to say that this is not Lung Cancer?” I asked rather matter-of-factly of the Doc. “You wouldn’t be able to stand up for the pain,” was his equally matter-of-fact answer. “I am going to say that this is sarcoidosis in a fairly advanced state” he said. “More people die with sarcoidosis than from it” he went on “have you noticed that you have been getting shorter of breath of late?” I admitted that I had. I had just put that down to recently sedentary living and gaining in years (I was about 43 at the time).

The real shock to my system then was that I had a chronic disease that I knew nothing about. I had to monitor that disease and make sure it got no worse. I suddenly had multiple specialist’s appointments. I was getting older! Thankfully my wife’s health insurance covered everything except for a small co-pay. (A benefit which eroded in later years. The co-pay went from $10.00 per visit to $8,000.00 per year) My blood pressure had started to sneak upward by then as well.

I had this disease, possibly since birth, that I never knew about. Much like my hearing loss, it was really just a part of life.

So that was my second taste of vulnerability. Again it would not be my last! Feeling better because I was treating my sleep apnea did not make up for feeling bad about having this disease, but I was improving.

In April of 2009, (I was now pushing 50) I had started to bleed from the nose regularly and everything hurt from the top of my head to the tips of my toes. Movement was painful; resting was just as painful. I had put up with this agony for a week or so when I mentioned something to my wife (the habit of being invincible was still hard to break). It turns out that a mutual friend was having the exact same symptoms. Her diagnosis had been fibromyalgia and she had started taking massive doses of Vitamin C for it, and something called SAM-e for her state of mind. Fibromyalgia produces depression as one of its symptoms. Considering the pain I was in I could well understand this.

I started to do the same as she had, starting on 10 g of Vitamin C per day and 400 mg of SAM-e. It worked to stop the pain within 2 days. I later boosted the Vitamin C dose to 20g (5 doses of 4 grams 3 hours apart) when the pain started to return. I kept up with that dose for 6 months, then I started to back it off successfully. (I had numerous trials at backing it off, but they began to succeed at about the 6 month mark. The SAM-e I just went off, it was expensive, and of limited benefit to me anyway. I was still taking 10g of vitamin C a year later.

By the time two years was up, I had reduced my Vitamin C intake to a maintenance dose of 2 g once per day. By that time I figured I had beaten fibromyalgia with massive doses of Vitamin C over a long period of time. Vitamin C had me feeling better than I had in a long time.

That was my third bout with my own vulnerability, but the story does not end there.

I had been seeing a lung specialist for many years since I had been diagnosed with sarcoidosis. The shortness of breath was slowly getting worse, so she eventually put me on a steroid for asthma, which I was to begin taking immediately and was to take for he rest of my life.

Seeking for alternatives (and our insurance was beginning to cover less and less anyway) I went to a GP who was outside the mainstream and not covered by our insurance. He heard my tale of woe including sarcoidosis and fibromyalgia and promptly ordered a barrage of blood tests. Having heard me out, he was nearly convinced that my main problem was, in fact, celiac disease. He said that I was to take my medication as prescribed for as long as I needed it, just in case he was wrong.

The tests came back with a huge positive for wheat allergy, and he said that if I do nothing else, my health would improve if I were to live without wheat.

I decided that I could do anything for 3 months (that is generally how long it takes for a food sensitivity to show itself), bought a focaccia on the way home, and announced to my family that this may well be the last bread I ever eat. Within 2 weeks, my breathing was noticeably improved, so much so that I stopped taking the steroid. I never bothered to try wheat again (there would be accidental cases of wheat ‘poisoning’, which would prove the point anyway), I felt so much better without it that I was convinced.

I never went back to my lung specialist after that.

My new doctor told me that there are 3 proteins which our bodies treat very similarly, they are gluten (in wheat-related grains), casein (in all milk products), and soy protein (in soy products and tofu).

Now I need to digress a moment to tell of how much I used to love wheat, and what a chore it was to give it up. My wife, being a “nutrition nazi”, had turned me onto whole foods. By 2009 I was grinding my own flour from wheat berries and making my own fermented bread from it: we were more-or-less observing the Weston Price style of eating. Our friends used to like my bread when I made it, and once I had perfected the recipe, we ate very little commercial bread. (The focaccia I bought as our last loaf of bread was so I would not have to bake a loaf from scratch!). My wife tells the tale that, early in our marriage, I would go to a store at 3am to buy bread if we were out of it! I loved bread! For the doctor to suggest that I live without it was no small thing. For me to decide to live without wheat was no small feat either. During the course of many conversations about food allergies with my wife and my doctor, it became clear that we crave the foods we to which we are most allergic. My preoccupation with bread certainly fit into the “craving” category.

Of course, when I went off wheat, I started to eat more dairy. (I liked dairy almost as much as I liked wheat). Six months into the no-wheat thing I had to admit that dairy was filling in for it, so I would give dairy-free a 6 week trial (I was not going to give it a full 3 months!). If I thought life without bread was tough, life without dairy was tougher! It was in most of the substitute foods which I had become fond of, and besides, a life without cheese was barely worth living in my book! So at the end of 6 weeks, my wife came home with some goat yoghurt, hoping that it was far enough removed from cow and had so many probiotics in it that I might be able to try it and be OK. Terrible mistake, I got sick as a dog from it, damn it! I was going to have to live my life without wheat or dairy! So much for Weston Price eating; we still followed those principles but made adaptations for my growing list of allergies.

Over subsequent months, I tried eliminating many other things, none of which I had a reaction to when I went back on them. Eggs were safe (thank the gods), as was coconut, almonds, cashews, pineapple etc. The only other one was peanuts, and with bread and milk on the “No” list, it did not seem that hard to add peanuts to it as well.

One other factoid that came from my doctor’s research: in the studies he was reading, people who had sarcoidosis of the lungs were shown to be intolerant of gluten. There was every chance that my gluten-free life had also dealt with my sarcoidosis. I have since had chest ex-rays which confirm that there is no sign of sarcoidosis in my lungs!

By August 2011, after 2 years of going without wheat, I had lost over 50 kg (110 lb.) in weight. I never tried to lose a pound, I just stopped eating the things that were killing me. I was feeling better all the time as well. I had more energy than I had ever had before.

I had mentioned that my wife was interested in whole foods.  As a matter of fact, is she is diabetic, and highly allergic to corn. I have diabetes on in my birth family as well. All things considered, we decided that carbohydrates were probably not our friends. In hunting the Internet for recipes, we discovered that the people who were eating the way we had begun to went by the “paleo” tag. So when anybody asks us, we are paleo – – not because it is trendy, but because it is necessary for our well being.

It was facing my vulnerabilities, and dealing with the facts as they were rather than how I wanted them to be, that helped me to overcome sarcoidosis and tame celiac disease. It is no longer a chore for me to live without wheat and dairy, that is how I can write this piece at all, and I feel better than I ever have!

While it might be nice to end my discussion about vulnerability there, I have things which make these challenges pale in comparison.

I’m lucky to be alive!

I have suffered 4 strokes that I know about. Some have left me permanently altered, some have not. I will just add here that, should I have felt at any time that I was life-threateningly ill, I would have not hesitated to go to the Emergency Room.

Stroke 1- December 2012.

I call this a stroke because the numbness remains with me to this day, but in the grand scheme of things it really does not present as much inconvenience. I lost sensation in the ball of my left foot somewhere around December 15, 2012, by December 19 I was in hospital having an MRI. The doctors said it was probably a TIA and that it would rectify itself in a week. 4 years later I still have that symptom. They identified quite a few damaged spots in my brain and recommended that I take blood pressure medication. I tried several medications at that juncture, but I found the mental slowness that all of them induced to be intolerable. A bill for $60,000 of which we had to pay $8,000 deterred me from going back to hospital to be told nothing very much in subsequent events.

In time, I had more or less forgotten about that incident, though I was on a bunch of natural supplements which brought blood pressure down a little, but nowhere near enough.

I had always said that I did not want us to be in the USA for the 2016 US Presidential election. So we began to plan in earnest to emigrate. Our plan at that time was to emigrate sometime in 2015, maybe early 2016.

Stroke 2- November 2013

This is where things get serious! I went to bed one afternoon with a very bad flu. When I woke up, next day my entire left side was paralysed. “How do I get to the loo?” was my first thought. I figured that if I jammed my left leg and locked the knee, my bones would hold me upright, so that’s what I did. It was nearly a week before I ventured downstairs, by which time I was getting good enough at jamming my leg to drive our (manual transmission) car. Rather than letting it stay useless, I insisted on using my left hand wherever possible, and slowly some utility returned. It took at least 3 months before I could take our stairs in succession, and at that point I did so very gingerly. To this day, my left side is less capable than it was, but it is slowly improving. I did not see the point in going to hospital to be told what I already knew. I would, and did, work this out by myself. I did not need another $60,000 bill to deal with.

Stroke 3- May 2014

As if things were not serious enough at this point, they just got a whole lot worse! I went to the movies with my wife and son to celebrate his 11th birthday. When I walked into the theatre, I could talk just fine; when I came out, I was unable to talk at all! (And no, the movie was not that good!) My son, who had been in my at-home care from the time he was 6 weeks old, knew what I was thinking, even if I could not say it. He acted as translator while I figured out how to talk again. It was like somebody had put a 2 inch section into my tongue while I wasn’t paying attention. I knew what I wanted to say, but I could not say it clearly enough to be understood. Again I was not going back to the hospital to be told what I already knew.

I began looking for speech therapists to no avail at all. It was during this time that I decided to head home to Australia where health care is less of a crap-shoot and they ‘understand the question’. I had started to discuss this with my wife, but we still had a family trip to take and I was going to do it! (She suggested I stay home, but I refused.)

At this stage I could not walk 200 yards without stopping to rest.

Stroke 4 – July 2014

We went to the family gathering in upstate New York from our home in Michigan. This was to be our last family reunion before we emigrated. On the way, we called in on a dear friend in Ohio who has since passed on. I think we took the last photograph of her alive!

We were due to travel back home to Michigan on my birthday, so we celebrated early. It was during that trip home that I told my wife she would have to take the wheel, because I was having trouble driving on the “wrong side of the road and the wrong side of the car” (I am from Australia, but I had been driving without trouble in America for 13 years!)

I call that ‘stroke number 4’ and my Australian neurologist seems to think that it was. I had one last professional commitment to fulfill, which I did the following Saturday night. I drove to a gig an hour away, and home, then I hung up my keys for good. I had to concentrate way too much to drive that night. I am glad I got away with it.

So here I was, unable to speak in more than a whisper (I had worked out pronunciation, but still had not learned projection) and unable to drive without second-guessing myself. It was time to call on my family for help. Within a day, I had a place to stay in Australia and someone to stay with me at all times. (Thanks, Ann!)

Within 5 days, we had figured out how to pay my air fare home (Thanks, Mark and Paula!) and I was ready to fly out in September of 2014. My wife and son would tie up the loose ends of our life in America and join me later.

I have never traveled well, being unable to sleep in a moving vehicle makes a difficult 30 hour trip into a grueling feat of endurance. I was a basket case by the time I reached the other end.

Within a week of arriving, I had seen a medical doctor and had appointments with many specialists. We were going to see what damage had been done and what we could do about recovery! An MRI showed 4 strokes: 2 clots and 2 bleeds. At least here the medical establishment were not going to be putting their hands out at every turn for money. I believe I had to pay one bill for $200; everything else was covered by medicare. The speech therapist was brilliant. She had me ready to deliver a 2 hour online lecture in November 2014. I still speak with a bit of an accent, specially when I am tired, but I can make myself understood.

There was a period between stroke #3 and early October 2014 where I could not understand a paragraph of written text. I could read every word, but I could not tell what they meant. That particular debility rectified itself as quickly as it had appeared. One minute I could understand nothing, the next minute it was as clear as a bell. Just because I could understand it did not mean I could remember writing it. It was quite novel to read something I had written many years before and not recognise it as my own work until I read the by line.

Anti-hypertensive drugs slow my mind down, there is no arguing about that. I take them now because I do not want the strokes to continue. I have noticed, though, that my mind is pretty much as agile as it ever was, it is just translating what I know into language or movement that has become arduous. Whether it is writing or speaking, it is all difficult, but it continues to get easier as time passes. Anti-hypertensives also mess with my body’s thermostat. I get extremely cold when most folks are a bit cool, I also get extremely hot when most folks are just warm, but that too, is rectifying itself over time.

Singing has helped me no end. I was a choral singer until stroke #3, and I wanted to get that ability back. I can sing without slur or accent! It uses a different part of the brain than does speech. Working with ‘Stroke a Note’ choir has helped me to find my confidence again.

If I have a pet peeve, it is being “infantilised” by well meaning folks who figure that I am disabled, therefore they have to do everything for me, including think. I am less physically agile than I once was, and we need to make some allowance for that, granted. I am as mentally agile as I ever was, it is just expressing my thoughts that is more difficult than it used to be.

I consider myself lucky to be alive, because my brother, my father, and my grandfather all died before their 56th birthday, and I had stroke number 4 around the day I turned 55.

I have always believed that we make our future; that nothing is fated. Had things worked out differently, I might have died in the midst of all this, but I believe I made a decision many years before which meant that this would be a difficult time rather than a deadly one.

Marrying my wife and having our son has given my life renewed purpose. The dietary changes have meant that debilitating injury does not need to stay that way. My brain-scan from 2012 shows many small spots of damage. My scan in 2014 appears to show much healing, along with much more new damage. I now take anti-hypertensive drugs to reduce the risk of new damage.

Recovering after stroke is not easy. Progress is so slow and sometimes it does not appear to be there at all, but we persist anyway. The “fog” of anti-hypertensive drugs passes with time. The tiredness has not left yet, but healing a brain takes a lot of work.

So here I am, two and a half years past my last stroke.

  • I walk with a cane, but hey, I can walk and 3 km is not out of reach these days!
  • I speak with a strange accent, but hey, I can speak and be understood!
  • My reflexes aren’t what they used to be, but I still have them!

Life is good. Occasionally I have to remind my legs that they are walking and would they please continue. Moving from sitting to standing and from standing to sitting are still challenging. Talking and walking are very deliberate processes these days. Nothing is impossible, but it is truly just not worth the effort sometimes.

I occasionally come across folks who like to whine about this or that. I must confess to feeling a little smug when I think “hey, we woke up this morning, let’s not waste our life wondering what might have been.”