Archive for April, 2009
Well, it seems I got away without any computer glitches until my last post in China – and then all my writing got deleted. Alas. In any case, I will try to rewrite what I wrote here now, plus a bit more!
Mom and I arrived home safely on Monday afternoon after a long trip. All went better and better as the travelling progressed after a rocky start. After being ready to go at 8:00 am, our ride somehow mixed up 8:15 with 8:50 and chose the latter time to show up. No problem really; our flight left at 10:55. But then at the airport, we apparently got the Air China rookie to check us in: even with a translator there to help us it took a full hour. With 10 minutes to spare we made it to the plane, which then thought it would be best to wait on the tarmac for 45 minutes while take-off was delayed. Sigh. But we did finally get going, and the rest of the trip went very smoothly, except for the fact that by 8:30 that night I had been up for about 28 hours. The fun of jet-lag; I am recovering from it as I write.
All this was preceded, however, by a rather eventful weekend. After my last lumbar puncture on Wednesday (Apr. 8), as I mentioned before, on Thursday I was a bit weak and woke in the middle of the night feeling quite uncomfortable but got back to sleep and got up full of energy at 5:30 am, showered quicker than ever, and wrote my last blog for an hour and a half before physio at 8:30. This would have been an amazing day just from that, but it became a true banner day. I went to physio a bit late, but made up for it by being able to do much more of my exercises than ever before. For example, one of the exercises Tina had me do each day was to (lying on my back) lift the knee of each leg to my chest, one leg at a time. She would help me do the movement correctly and assist my leg if it was too weak on its own. For the entire trip this had been one of the more difficult exercises for me to do, especially with my left leg. But on this morning, where I could usually do only about 6 or 7 repetitions with my left leg with a lot of assistance, I was able to do a full 20 repetitions mostly with hardly any assistance at all! And similar things happened for every exercise! One more example: I was able to stand easily, unassisted and straight, for a full 30 seconds, where a difficult 5 or 10 seconds standing had been the norm. Tina and my Mom were both watching and were as astounded as I was. But it seemed like a huge success for the stem cells and the therapy, and confirmed what the doctors had observed with me repeatedly over the 30 days: That the stem cells seem to have a very positive effect in my case.
The vice-head doctor and his entourage came to visit me during this amazing physio session. I say entourage because he never comes alone but with my attending physician Dr. Hong, who gives him a run down of my status, and also with at least 2 other doctors, 3 or 4 nurses, a translator, and often a young woman with a video camera. A veritable swarm of professionals all looking intently and kindly at me! A bit overwhelming at first, but I realized that it did make me feel very supported and cared for. The Chinese way of doing things I suppose.
In any case, the doctor asked how I was and I said that I was doing extraordinarily well that day. As he spoke no English and Dr. Hong had not yet heard about the amazing things going on, he did not hear about that day’s great improvements at all. However, even on the basis of what had gone on before, he confirmed again that the stem cells were working well for me and then suggested, rather dispassionately, that I should come again for another month of treatment in 3-4 months time and continue coming every 3-4 months after that for a while – that that would be the most effective treatment for me. I was a bit shocked, and only managed to quip that I would love to come but I had no money. This got a chuckle, and then the swarm moved off to the next patient. Sadly the video camera girl went with the swarm, so none of the amazing feats I was accomplishing got caught on tape.
A few minutes later Dr. Hong came by to chat by herself, and I told her about what was happening that morning. She was delighted! I then asked her to explain why the doctor had recommended coming back so soon. She said that the stem cells take 2 or 3 months to mature after the lumbar punctures, and so the improvements that they will give will show up during that time. However, after that period no more improvements will occur. Thus, she said, the doctor’s opinion was that it would be most effective to get another infusion of stem cells immediately after the first round had matured in order to continue to make progress without interruption. I said that made sense, but again it was the lack of money that was the real obstacle. She laughed and said something like, “you’re smart, you should go make lots of money and come back”. I laughed faintly and rather half-heartedly in a somewhat discouraged manner. I felt demoralized and a bit hopeless. It had seemed so hopeful – finally a treatment that actually had a positive effect for reversing the MS symptoms rather than at best merely stopping or slowing the progression. But how would I ever be able to afford it? Not on a graduate student’s salary for sure. The cost would be in the range of $100,000 a year.
I returned to doing my exercises and left the problem alone. The exercises continued to go extremely well, and I was not even tired after we were done. I reconfirmed with Tina my realization that relaxing the tension in my shoulders and back relaxed the muscles in my legs which in turn allowed them to work much more strongly, and that this, along with and aided by the effects of the stem cells, had allowed us to see the great improvements we were witnessing. She also confirmed that my legs were indeed much more relaxed than they had been on other days.
All the spiritual work I had done had showed me that the tension in the shoulders had come from the deep terror I had carried there all my life. My revelatory week had given me some spiritual tools and understanding that had allowed me to let go of the terror and work through it in large part and to be able to replace it with peace and joy and well-being. All together, perhaps, I had finally found and begun to undo the (or at least a) root cause of the MS, something I had been searching for for 16 years. I don’t know, but greater peace and joy and contentment and well being, especially in my body, can do nothing but good I figure. I feel as though I can continue to use the spiritual tools I have gained to keep undoing layer upon layer of tension that has built up in my body over a lifetime of carrying and dealing with a terror I was unconscious of. It seems that process is symbiotic with the stem cells as evidenced by this day of great healing physically coming in the wake of a week of spiritual opening and work using the same tools. Only time will tell.
After physio, I had electric wave therapy as usual and then acupuncture which for the first time in a month was almost completely painless; I actually almost fell asleep! Another amazing event. And, interestingly, James, the acupuncturist, had said that the reason for the pain had been that because my muscles were very tense, when the needles were pushed through them it would hurt. Hmmm…
I did standing therapy after that, and Mom and I had a good and unexpected chat with Luca, one of the patient coordinators who happened by. Somehow our concern over getting funding to come back for treatment came up, and he told us that some of the Italian patients had asked their government for funds to do subsequent stem cell treatments, and one had even gotten some funding. He described the long process that one had to go through in order to get official documents that one could use to petition one’s government with. But he assured us that everyone there was more than willing to help the process in any way possible. He also suggested other ways that patients and their communities had raised funds to enable them to come back, and we left feeling inspired – ready to go home and write letters and do what needs to be done to make it happen!
After the amazing morning, we had lunch and then my Mom and Dad and I went out with a driver we hired, Ms. Lee, to a wonderful little tourist street in Hangzhou. The afternoon was sunny and about 20 Celcius – truly a perfect afternoon. We bought some knick-knacks (Ms. Lee was a ferocious bargainer and got us some incredible deals), saw the working end of the Traditional Chinese Medicine Museum (where they treat patients and give them herbs), and then had green tea in a truly lovely traditional tea shop. It was served with an assortment of dried Chinese fruits, some seeds and some fruits and raw vegetables, all delicious and mostly unlike anything I had ever had before. We then went to Mom and Dad’s hotel room, rested for a bit (a little red wine helped) and then went to dinner. By 8:30 I was home and in bed after a truly splendid Good Friday.
The next day we all (Mom and Dad and I) were taken to a beautiful spot called West Lake by Dr. Chen, my Dad’s colleague, and his wife. Sadly I was tired from the day before, and was a bit overwhelmed by the incredible number of people there on a Saturday. But it is an incredibly ancient and beautiful spot, and most of the trees had just flowered and were gorgeous. Then we all went to a restaurant (according to Dr. Chen the oldest restaurant in Hangzhou, founded in 1930) for a late lunch which was possibly the best Chinese food I have ever eaten. Unfortunately the food, the heat, the fatigue, and really the effects of an incredibly profound and intense month, all culminated in a huge headache for me, and so we went back to he hospital soon after.
Easter Sunday we relaxed before our trip home, got packed, and went out for a foot massage. This is one of the most wonderful things in China! For the equivalent of around $20 CDN, you get seated in a very comfortable chair and have your feet soaked, your shoulders, arms, and legs massaged and then your feet thoroughly rubbed all while drinking some of the best green tea I have ever had. It was my third such massage (I had been there twice the previous week), and it provided a fitting, decadent, and well-deserved ending to a truly incredible trip.
April 12th, 2009
The last lumbar puncture on Wednesday went about as smoothly as possible. You know that feeling when you are nervous about something and then when it is over you think, ‘why was I nervous about that, again?’ Sort of what it was like. No problems to report after (ie no headaches or pains) and no side effects other than I feel really good. Well actually, last night I woke up at about midnight and felt very uncomfortable – especially on my left side – and irritable, to the point of anger even, but it passed after half an hour or so and I went back to sleep. Another perhaps hopeful sign that things on my left side are waking up! But there are some other things moving that are responsible for feeling good (and possibly waking up), too – or maybe it is all just working together…
In any case, I have wanted to share what has been happening on a more spiritual level. I have found myself thinking a lot about how to share this, and I couldn’t come to any kind of conclusion – so I thought I would just share my experience and forgo a lot of mental/intellectual stuff (which has been processing in my head around this). Anyway, I had mentioned in my previous blogs the spiritual journey that this trip seemed to be for me, and how terror of a very deep kind seemed to be what I was getting in touch with. An existential level terror that I had throughout my life associated with my Mom (not that she did anything, of course, just that I had associated it with her) I had been aware of and had worked through a lot and doing a lot of work on here. But about two weeks ago I realized that whenever my Dad would come over to my room (usually Mom has been my caretaker in the mornings – roughly 9:00 to 2:00 – and Dad from 2:00 to 8:00) I would experience a bodily terror around him. Then I had a powerful dream one night where I was playing with my Dad’s father (my grandfather) on a farm on a lovely, quite warm, late spring/early summer day and my grandfather jumped into a pool of clear, cool, lovely water with a few strands of straw floating on it. I jumped in after him and the feeling of being immersed in that water was stupendous – peace and joy and love – the kind of feeling you never want to leave. And I saw my father sitting across the way from this pool inside behind a pane of glass. It was a very emotionally charged dream and a day or two later I understood that the terror I felt with my father was terror that I had gotten from him that he had gotten from his father (and perhaps he from his, and so on - I didn’t see that far). And when my Dad came over that day I was able, and it felt right, to ask him directly if he had felt terrified by his father – to confirm what I had intuited. He said he had, and we had a beautiful talk about it. Bringing it out seemed to dispel the terror in me, too, and I felt it much less in subsequent days.
At the same time I was reading the book ‘A New Earth’ by Eckhart Tolle. This book has been showing up in my life all over the place for the last year or so, but never had it felt right to read it. Then I found it in the small collection of books they have here, and I borrowed it. Reading it was a journey in itself. What he talks about is what might be called ‘spiritual awakening’, which he explains is just the consciousness that whoever ‘I’ am is not who I think I am, or my experiences or anything else – ‘I’ am the consciousness that sits behind all that and is aware of all of it. I am the ‘I AM’, if you will. I won’t say any more here because Eckhart Tolle says it much better and also as I said before I don’t want to get down in intellectualizations. My experience while reading the book, though, is what was astounding. Eckhart Tolle in the book actually says that reading his book is transformational in itself and that its purpose is not to play with ideas, which are in the mind, but to serve as a transformational tool to help get beyond the mind to the ‘I AM’. And amazingly, I got it!!!! Somehow I was able to step back from my mind and my experiences and observe them. All I felt at first was a relaxation in my shoulders, roughly between my armpits – I can feel it now even as I pull back and observe myself writing this. And astoundingly, this was the exact physical location in my body where I felt the terror! I was a bit overwhelmed by it all, and just went on with my day – this was Sunday – but I began practicing stepping back from my mind and emotions and everything into this little place of relaxation between my armpits. The next day I continued practicing and began to notice that if something happened that would make me feel badly in some respect, if I just watched and felt what I was feeling and tried to get to the place of peace, whatever it was I had felt would just dissolve. I had to practice ‘doing it right’ because it was a skill I was very new at and it didn’t work right away all the time. But it always worked. And what is more, I began to notice that as I got bolder and tried to do it with stronger emotions, after the emotion had dissolved I was left with a residue of not only a feeling of peace, but often a little burst of joy as well. As I continued practicing during the day, the peace and joy became more sustained, and I noticed that I was more at ease with everyone, laughing more, being silly and fun – enjoying life! And this was happening with everyone, most noticeably with my parents!! I also noticed I had more energy and felt lighter. This thought of lightness of course brought up the thought of ‘enlightenment’, a term that I have disliked more and more in recent years. It had always come across to me as some unattainable spiritual peak that only a few ever reached and that mere mortals like me wouldn’t have a hope of ever attaining. I also had had the rather cynical thought that anyone who claimed to be enlightened was, by definition, not – the very act of claiming it precluded it. (I had heard, on a related note, similar things said about understanding Zen and/or quantum physics – that anyone who claimed to understand either by definition didn’t). But then I looked at my experience and thought that I liked the kind of ‘enlightenment’ I was experiencing a lot better. It was (is) so simple. More like saying ‘take it easy’ or ‘it’s all good’ or something like that. It felt like a little child going over to a friend’s house and asking “do you want to come out and play?”, that suddenly life was not so serious anymore and where I had been the child who is sad and won’t come out to play because they had more important things to do – like practising violin in the common caricature – I had returned to being the child that just wanted to play and have fun. What a wonderful feeling! “Be ye like little children” – isn’t that close to what Jesus said? So I feel very much like I have been reborn into a new way of being that is at once simpler and more profound and is full of joy and peace – real joy and peace and not derived from external things. In fact it has beome much clearer that external joy and pain are really the same thing – both keep me away from the space of peace and joy I can be in in an instant when I step back from either of them. They are transient where what I have found might be called eternal – not in some high falutin’ sense of eternal like I had imaged that word before – but in the sense that the awareness, the ‘I AM’ is not affected by anything transient – it is that which watches the transient come and go be it a cloud or death itself. Many more thoughts and realizations and connections have come to mind, and Eckhart Tolle’s book brought almost all of the spiritual ideas and sources of wisdom that had most influenced me together in one place: Among them the Bible, in particular the prophets and Jesus, A Course in Miracles, the Tao Te Ching and the poetry of the Sufi master Hafiz, among others. So it felt like the end of a phase of spiritual development for me and a transition into another. A final marker of this came on Monday night – really Tuesday in the early morning – when I had one of the most powerful dreams of my life. I was talking with my Dad in a very impassioned way, pleading with him to try and convince him of the reality of spirit. I was so animated I had tears running down my cheeks and finally something shifted and he got it, and with tears streaming down I ran to him to embrace him and right before I hugged him I saw he was me – I was hugging myself, and our embrace was beyond description. It then took me a full hour to wake up, and I felt drained as I have rarely felt before. This joy and happiness has continued all this week and it has been a blessed week. I continue to practice this new skill of ‘being present’ to everything, and a world of new challenges and realizations opens up.
It seems fitting somehow to be able to write this on Good Friday. And I thought of a nice connection with my experience. In the same way that I felt the ‘eternal’ peace and joy in the same place in my body where before I had felt terror, it occurred to me that the suffering we experience acts as a gateway of sorts to link us to the eternal in precisely the same way that Jesus’ passion led to his resurrection. Easter blessings to all.
April 10th, 2009
It is getting increasingly hard to keep track, but last Friday was my 4th (of 5) lumbar punctures. And it went very well. I am feeling like an old hand at this… The recovery was a bit faster than usual, although I rested most of Saturday and was tired. Sunday morning (yesterday) I actually felt energetic enough to go out of the hospital with my Mom for a little over an hour. We walked to a wonderful little park near the hospital – just set beside a road with a lot of trees and flowering plants, well-tended, some grass, and a little calm lagoon. There was a man fishing in the lagoon, and a woman washing clothes. And this not 50 metres from a major road! The little bridges and walkways are really pleasantly done, made out of stone, carved what seems to be by hand. Absolutely lovely. And we walked by a little space where there were some public exercise machines, apparently put there by the city to encourage citizens to get out and exercise more. In that park, they would get me out that’s for sure! And there were a number of people using them. Mom figured if they put a playground for kids next to it, it would be perfect. The weather is very humid here – so much so that we have rarely seen any blue sky, much less a clear sky like in Calgary. And it has been raining a lot. But yesterday the rain was not so cold as it has been, and no wind. It was a pleasant spring drizzle, and the sun even shone through the clouds briefly and warmed me up (Mom was warm from pushing me around!) Hangzhou is truly a beautiful city. Little parks like the one I mentioned are everywhere. The people here seem to take collective pride in making their city beautiful and a lovely place to live in. For me this was only the second time I have been out of the hospital since I arrived, and so the trip proved a good omen. The time I went out before, the cold and wind gave me a bit of a chill, and along with the exhaustion I felt from the treatments, I didn’t want to risk getting sick and thus delaying or having to cancel some of my treatment. The price was too high! But I feel stronger on all levels today. My spirits are good, and physically I felt strong. The improvement in bladder function that I noted after the third lumbar puncture last Monday seems to have stuck, and so I have gone to the bathroom only once during the night in each of the last 4 or 5 nights. Hooray! And I seem to be sleeping better, which I sense is deeply healing on many levels. I have more dreams and awake with the crazy, new sensation of feeling – wait for it – rested when I get up in the morning!! lt is one of those things that it has been so long since I felt rested that I had forgotten what it felt like. What a blessing. So I feel more peaceful overall. The sleep has dovetailed with the spiritual growth and transformation that has taken place and that I have been working hard on. I now feel I have done at least a large part of what I was here to do, and there is peace and a deeper gratitude – a calm after the storm of intense spiritual work. Not, of course, in the ego sense that I am somehow “there” or “done” growing - there are new horizons opening up on all fronts. But that I have a little respite from the heavy going. So I am appreciating that. One more lumbar puncture on Wednesday Apr. 8, most likely at 2:00 pm here again, and then a couple of days of recovery and the treatment will be over. Given that I seem to be recovering more and more swiftly after each successive puncture, I am hopeful that by the weekend I will feel good and will be able (finally) to do a little sightseeing. The weather will hopefully cooperate, and my Dad’s colleague Dr. Chen and his wife have been so kind and earnest in wanting to take me out to see some sights (they have taken Mom and Dad out, albeit seperately, a few times) that I would really like to be able to go with them, even if only for a few hours. There is a famous place nearby called West Lake that I would like to see. And it would be fitting to end the trip on such a happy note with Dr. Chen and his wife. They have been an integral part of our stay here – so helpful and kind and generous for one thing, but on a deeper level too. I found out yesterday that the amazing way in which my Dad was able to come here (because Dr. Chen just happened to live in Hangzhou, the same city the treatment is in) is actually even more miraculous. My Dad told me yesterday that in fact he had not sought out Dr. Chen in this at all, but that in around November 2008, Dr. Chen had emailed my father out-of-the-blue regarding his daughter wanting to come to the University of Calgary to study mathematics as my father’s student!!!! Then my father mentioned my treatment an everything fell into place. Wow!
April 6th, 2009
I had my third lumbar puncture on Monday, and it again went well. In a slight complication, they gave me the valium earlier than usual, and I had to wait longer than usual before actually going in to the operating theater. The result was that the valium had essentially worn off when I began to get the lumbar puncture itself, so I was conscious of the entire procedure – not something I want to repeat. It wasn’t bad, but the doctor poked a bit in the wrong direction at one point and I felt a bit of pain shoot down my right leg for an instant. Totally normal and without any effect except that I groaned a bit! The poor doctor – her name is Dr. Hong – she is so nice and was very apologetic afterwards! She said she never wants to give her patients any pain. I think that gives some indication of the extraordinarily high level of care I am receiving here. I mean really, how often do you hear about surgeons apologizing for their errors in surgery (except in a court?…), and this wasn’t even an error. My Mom said that little pokes like the one I experienced are the norm in spinals, and, really, it is the experience of having a completely pain free spinal (like I had for my first two) that is out of the ordinary!
But my thought was really how lucky I am to be an adult going through this process. The scary part of having a lumbar puncture is the thought that someone is going to stick a needle in your spine! The actual experience is not bad at all. I am able to breathe and pray and take my mind away, but most of the patients here are children, and they are terrorized! It breaks my heart – even when I was getting the last lumbar puncture, I could hear one little girl, her name is Abby, screaming in terror because she isn’t able to understand what is happening to her. And her extreme agitation, of course, makes the procedure that much more difficult and painful in a downward spiral. They had to just forego her lumbar puncture and try to get an operating room where they could give her a general anaesthetic. And then they detected a heart murmur that hadn’t been there before, and her Mom, Jenny, was so worried, and I am not sure they could even do the general anaesthetic. And Jenny is here alone with Abby, who has, I think, (this may not be quite exact) quadraplegic, spastic cerebral palsy, is in a wheelchair full time, can’t speak, has no control over her limbs, and, Jenny said, has had up to 70 something seizures in a 24 hour period. Abby is eleven, Jenny had to give up a really good job to take care of Abby, her husband is a cop and they have two more little boys. I think they had to take out a second mortgage on their house just to afford this treatment. And I know only a fraction of their story! My God!!! I don’t think I complain about my condition too much – I have many problems, but that’s not one of them! – but if I am ever feeling hard done by, all I will have to do from now on is think of Abby and Jenny and the other heroic people who come here to remember how good I have it and how lucky I am!!
The children are heartbreaking, but the adults are even more amazing. There is a patient Russ who has Muscular Dystrophy. He is in his 50s and has had it all his life. Also ALL his (I think 3) siblings also have it! And he came here with a caretaker (also named Jason!) who is Russ’s stepdaughter’s husband! The courage, stamina, sacrifice, and just general spirit and good will of the other patients here is truly humbling and awe inspiring.
This combined with the incredible staff make this a truly blessed and healing place. I really feel so fortunate and blessed myself to have been able to come here. And what I have said about all the staff doesn’t even come close. All of them, from the cleaning ladies (one of whom brings me food every morning without me asking!) to my caretaker (the cleaning lady’s husband, who spends the nights in my room to give my parents a chance to recuperate themselves and sleep well at a hotel nearby!), to the nurses and therapists and doctors and patient service representatives (who can translate and are eager to help with ANY problem that comes up in or out of the hospital) are each and every one some of the kindest, most caring, loving, friendly people, as well as being extremely skillful and professional at their jobs. They make this place such a nurturing and healing environment that it is a pleasure to be in! It is more likea 5-star hotel than a hospital!
My next lumbar puncture, injecting my own stem cells cultured from the bone marrow they extracted two weeks ago, is tomorrow, Friday Apr. 3 at 2:00 pm China time. I am hopeful it will go better than the last one – ie that the valium will knock me out for more of it!! 
Also, Monday’s puncture seems to have had a better effect on me. No headache or leg pain, and on Tuesday night I didn’t get up at all to go to the bathroom. This may not seem like much, but when my usual is between 4 and 10 times a night, this is great! So I hope tomorrow’s puncture will be even morer free from side effects and full of healing. They say that one of the first signs of improvement for MS patients is increased bladder control, so I am hopeful. But I don’t want to give any false hope either. Jenny said to me that she is not even telling her friends and family the hopeful signs she is noticing in Abby which are, perhaps, a result of the stem cells. She reminded me that we are here with no expectations for any improvements, and that she did not want to get anyone’s hopes up back at home only to have them disappointed by the hopeful signs being just wishful thinking. So there are some hopeful indications for me, but I offer her advice to all – don’t expect anything. But keep hoping and praying!
April 2nd, 2009
