I started writing this from a hotel in London. Roz and I are fortunate to be able to make a swing through two of our favorite cities – we are off to Paris tomorrow for a quick visit.
While on this trip we have had to make even more adjustments to what is the new “normal”. Given my eating difficulties, we are traveling with a whole supply of freeze-dried camping food. Just add boiling water and VOILA, a meal in a pouch that is about the right consistency for me to eat – even if it takes an hour. Lots of Carnation Instant Breakfast that we mix with milk (an excuse to explore British supermarkets) and can either drink or inject through my feeding button. We bought rolls of paper towels – a new requirement to help deal with leaky lips.
I may move a little slower these days, but I am still capable of using the underground and the buses if I am careful — hence the reminder to mind the gap.
But the gap to be minded is also between what I used to be capable of doing and the much more limited capacity I now have. Travel used to mean trying new restaurants and foods. It used to mean wandering through neighborhoods absorbing new sights and sounds and smells unconcerned about stumbling. It used to mean filling days and nights with activity. Now it means afternoon naps and constant attention to food issues – concentrating on eating with no distractions; menus limited to purées, soups, pudding and foods of similar consistency; reminding myself to consume enough calories to keep my weight up.
But on the positive side, our stay in London has enabled us to reconnect with old friends and to meet my new best friend, fellow blogger Lindsay. We had connected via our blogs, but this evening we were able to meet up, share hugs, and put solid reality in place of electrons. Lindsay and I are so similar – bulbar onset that has robbed us of speech, eating and swallowing. Fierce determination to live every day we have to the fullest. Weird sense of humor that is an important part of our coping strategies.
Now I am finishing this from the Eurostar train to Paris, and I will post it when we are settled in our Paris apartment this evening.
Real pandemonium at the station, but Roz is the world’s best traveling companion so we are safely in our seats waiting to depart.
So what lessons from our stay in London?
First, this journey has both difficult challenges and rich rewards. Walking at half my former pace certainly slows us down, but walking slower makes it easier to really see where I am and am going. I see a lot more than I used to see. It takes some effort for me to acknowledge my now-apparent limitations, and I resent the reductions in my independence. I am grateful that my companions are always looking out for my best interests, giving me just the right amount of leeway so I can be learning my new limits. They will let me stumble, but will not let me fall – although sometimes I can defeat their best efforts with my stubbornness.
Second, the stay in London enabled me to fill in some experience gaps. I have now been to Greenwich and Hampton Court, important memories from my British history course many years ago. I have taken long bus rides through suburban London and now really appreciate the enormous diversity of this world city. I have experienced the hype and cynicism surrounding the royal baby. I admitted to my new friend Lindsay that I sometimes use my feeding button naked to minimize the mess. TMI?
And third, I am even more grateful than before that so many friends (old and new) are here for and with me. We do not take this journey alone. I am confident that as I progress, there will be constant help crossing whatever new gap is placed on my path.
So now I get to see how much high school and college French I remember. Wish me luck!
As we approach Paris I think about the city of romance, and am so grateful that Roz is here by my side. I love her so much.