The Caterpillar and Alice looked at each other for some time in silence: at last the Caterpillar took the hookah out of its mouth, and addressed her in a languid, sleepy voice. “Who are you?” said the Caterpillar. This was not an encouraging opening for a conversation. Alice replied, rather shyly, “I — I hardly know, sir, just at present — at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.” “What do you mean by that?” said the Caterpillar sternly.”’Explain yourself!” “I can’t explain myself, I’m afraid, sir” said Alice, “because I’m not myself, you see.”
When I was four, I contracted scarlet fever and spent many days lying on the couch in the living room. I’m told that at the time it was rather a scary diagnosis, antibiotics weren’t yet widely used, and instead I was given gamma globulin and lots of bed rest while my scarlet red skin peeled away. My companion was Cyril Ritchard, an Australian actor of some renown as Captain Hook in Mary Martin’s “Peter Pan.” My son would be more impressed that he was the voice of Elrond in the Rankin/Bass TV version of “The Hobbit.“
Every day, as I lay on the couch, my companion would read to me Lewis Carroll’s “Alice in Wonderland,” entertaining me with different voices and having a small wind ensemble play petite interludes between chapters. The gift of his company came to me by way of my mother’s best friend who we called Aunt Helen. What little girl wouldn’t love to have an aunt who made her living sewing small yet beautifully detailed costumes and dressing dolls for museums? Who would give me my own dolls with wardrobes she would sew? Who lived right by the World’s Fair in Queens and would take me on weekends so I could make yet one more plastic dinosaur? And she gave me, to keep me quiet during my recuperation, a boxed set of four vinyl LP’s with Mr. Ritchard taking me into that wonderland with Alice. Nestled in the bottom of the box was a red cloth-bound copy of the book full of John Tenniel’s illustrations. I would hold that book tight as I listened, finding the right pictures as the story unfolded.
I finally got off that couch having memorized a good deal of Alice’s adventures and with a residual effect of the infection having given me double vision. I was too young to remember seeing any differently so I didn’t ask myself as Alice did when she found herself in the small hall at the bottom of the rabbit hole, “I wonder if I’ve been changed in the night? Let me think: was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, Who in the world am I? Ah, that’s the great puzzle!”
Today, as Rich continues through his recovery, with digital audiobook downloads and instant streamed movies and shows to keep him company instead of vinyl records, changes take place as well. We continue to try to wean off the dreaded prednisone, the effects of which keep niggling at us… Muscles atrophied, lungs recovering, and a neck puffed like the bullfrogs that live by our pond. His hair seems to have some confusion as to whether it’s supposed to grow back or not but instead exists in blotches that stick out this way and that like the Mad Hatter. His adrenals running every which way making for some very odd days. Neuropathy stinging his feet. Balance is off… thinking is off… cognitively just not quite there. What changes will stay when all the meds are gone and what will resolve, we wait to see.
Which brings us back to Alice’s question… “Who in the world am I?” It is indeed the great puzzle!
Patient? Non-Patient? We’re quite in between!
Survivor for sure.
We’ve gotta get ourselves out of patient mode. While there are still restrictions and precautions, while we still have to think before we leap, we need to begin to get back to ourselves. Like my eyeballs that just don’t want to work together, there will be residual effects. Alice was not the same young girl that went down that rabbit hole. Our experiences change us, for better or for worse. But we’ll adapt and find a way out of our current rabbit hole and Rich’s current wonderland. We make plans. Sometimes we need to cancel them but then there are those wonderful times where we can follow through. Success!
Our team of gurus we see this week are pleased with the progress to date. Although our stem cell doctor calls Rich her yo-yo as he has been in and out of the hospital, we celebrate April as a NSUH-free month… the first of 2015! And most importantly, we celebrate the news that the latest PET scan has once again come back clean and clear… Rich has been in remission for nine months…celebrations galore!
We begin to add more everyday tasks to Rich’s day. Errands to run, small jobs to do. This and his dedication to restarting the exercises the physical therapist gave him months ago, with the pulmonologist’s approval, begin to show their effects in his stronger and faster walk. Within a month, we should be able to stop the prednisone. We need to be aware that his asthma, like his allergies, and his immune system, have all been reset. So we’ll need to keep that perspective if and when some wheezing comes back. We work out a plan for the next visit with the doctors to review other blood results, consider some medication changes once the prednisone is gone and hopefully resolve at least some of the issues we’re dealing with now. In the meantime, we rejoice in the progress we’ve made and continue to make our plans. Some we’ll have to cancel, but in time, more and more we’ll succeed.
As we look back, it IS a certain type of wonderland that we’ve been able to come this far, to celebrate this year’s journey, another twelve months of family and friends and being able, at the end of the day, to say, as the Doormouse reminded Alice, that it was all, really, very much of a muchness.