Segev appears to have pulled out of his bronchiectasis exacerbation. As has been the case before, an intensive regimen of physiotherapy, inhalation therapy as well as several supplements are allowing Segev to go long periods without antibiotics. Since his lungs are colonized with Klebsiella, Pseudomonas and candida, antibiotics are a last resort; the less antibiotics the less chance of resistance building up. As a matter of fact I have to look back a few years in the blog to find the entry where I had to give Segev injections three times daily, which truly was a hellish experience. Hospitalization in his condition is extremely risky and I have already written about that as well. So he is home with me and looking fair.
|Segev's medicine bag: the medications and supplements he gets every day, up to three times a day|
I quite liked that film, "the Imaginarium of Doctor Parnassus", where people strangely enter into a special world entirely created for them, in a place where the laws of physics would have a difficult time surviving.
As it is it seems some days I question if I'm not just deceiving myself, believing in a world I have created, creating only the illusion of health, rotating in and out an endless stream of remedies and medications but doing it so well that you can never quite be certain which part is real and which illusion.
In the film people enter Dr. Parnassus's world and find what they actually need. In that sense he was a gifted healer. But the trick is of course to know what to heal. When Bennie Waddell writes in his blog I get the feeling that the healing is going on within himself and Timothy Ringgold may just one day be able to patent his method of taking the ultimate pain and transforming it into one thing we all want so dearly: to nullify the uncertainty that nibbles at our lives as parents of severely disabled and ill children.
He writes about transformation and about taking the pain of loss and being able to "turn down the dial" so that he can turn up the dial of the beauty of his love for his child.
The pain is there for me when seeing my son ill, uncomfortable, suffering, in pain, screaming. My pain is so strong because I love him so much and somewhere in there lies the beauty of it. I can't seem to separate the two the way that Timothy does: but then he speaks from that sense of finality where his Anabella no longer feels pain. And while he and his wife may grieve I hope he is never made aware of the fact that people say, "you'll get over it". You can't and shouldn't get over it. You can learn to live with it but it is the value of the thing itself, all the love that you have put into that shared life. Somehow I don't think this will be a problem for Timothy, as he strikes me as a very strong person, a completely genuine one.
Dr. Parnassus is certainly an apparition of faith to me, showing us that it is our trust in discovery, transformation and the unexpected that allows us to connect to our true needs and thus form an understanding of our lives that really works. An understanding though that functions like the lifting of the veil, of maya, something I glimpse as I rely on my intuition.
While Segev's veil has at times been quite transparent , not so lately. Just the opposite, I feel that he is undergoing deep changes which are not understood at all. Signs of this can be seen in his sight becoming functional to some minute degree after twelve years, changes in his expression. But also in the worsening of his sick little body.
Thus, serious feelings of unease accompany me these days. Some reasons are obvious though connected indirectly to Segev; financial problems are mounting. My oldest son received his conscription papers last week. My own minor health problems persist; as the conjurer cannot be tricked, the cobbler goes barefoot.
You won't find me looking for assistance here, in Segev's drawer, full of emergency meds, narcotics strong enough to end any suffering. Nor in a bottle. Not in something you can smoke or taste. I won't look for a solution in another person, having tried that more than once. Obviously the solutions need to be appropriate to the problem.
Most importantly I believe that the difficulties that have passed may not necessarily prepare me for those ahead and so it must be my understanding finally, that allows for what I think can and should be done, not necessarily being what I will actually be able to do.
"Physician heal thyself" means, if you can't help yourself, how can you help others. But my twenty years as a therapist has taught me that everyone needs outside assistance on occasion and so "physician heal thyself" rings a bit hollow in my ears. I'm glad that through the two fathers I have mentioned here, perhaps members of some league of extraordinary men, I can continue to seek new avenues of understanding.