Just before waking

For most of my life, I have seen things in that creeping inertia toward sleep. Figures made of vibrating inkiness would move towards me until I screamed and jumped in the moment before we touched. I would shake my head from side to side and rub my eyes like an incredulous cartoon character while my pounding heart slowed.

The shapes I saw never existed outside of that thin slip of time that bounded waking from sleep, but logic is not enough. It didn’t matter that I knew that these were hallucinations. The panic was real.

From the moment I decided to visit China, I was panicking. I fretted about bringing medications, transporting IV bags, getting medical notes, dealing with the airline, the weather. Everything was a variable I could not control. The mental invention I could muster to frame worst case scenarios was impressive. Every obstacle brought fresh waves of anxiety until I believed I may never get there. I worried and worried and worried.

By the day I was set to fly to China, my fear had reached fever pitch. What if the airline staff wouldn’t let me carry my supplies onboard? What if I need an epipen? What if my port clots off? What if I can’t reaccess my port? What if all my IV bags pop? What if I have a severe reaction during the sixteen hour flight?

I had actual nightmares that I would arrive in China to discover all of my medication bottles were empty. In the half slumber just before waking, vignettes of my illness destroying this trip paraded before my eyes.

Late on November 2, I went to Logan Airport with my new matching luggage and checked in for my flight to Hong Kong. As anticipated, there was some trouble with getting approval to bring my critical supplies and meds as my carry-on luggage. Lots of calling supervisors and discussions. At last, a supervisor walked over to us. In his hand was the printout summarizing my health conditions and necessary accommodations. I could bring this small piece of luggage onboard with me.

Things went much better from that point. A wheelchair was brought to transport me to the gate. TSA gave me no trouble. I boarded the plane first to get medicated and settled. A flight attendant came over, holding a copy of my medical approval form.

“It says you have ‘mas-to-cy-tro-sis’, this is right?” she asked warmly.

“Yes, that’s me,” I said, fighting with my infusion pump.

“This word does not mean anything to me. How can we help you during this flight?”

“I’m fine, I can handle everything myself.” And I was fine and I could handle everything myself. I manage my disease everyday. There was never anything to fear.

After we took off, I laid back and fell asleep for nine hours. I flew over the North Pole and landed in Hong Kong without any trouble.

I have been in Hong Kong for five days. I am very tired. I am very sore from the flight. I am reacting mildly. It is hot and hazy here, the air like droplets of lead weighing everything down. I can eat almost nothing that wasn’t prepared at the house and need to nap every afternoon on top of sleeping 10-12 hours a night.

But I am here. I made it to Asia. I have seen the Star Ferry and the Peak, the bustling central area and the sun blazing through the fog over the South China Sea.

The nightmare is not that I would be sick in China because I am sick and will always be sick and being in China won’t change that. The nightmare is that I would wait so long to be “healthy” that I would never experience the blinding joy of going to the other side of the world. The nightmare is that my disease would prevent me from living a life of wonder and meaning.

You don’t need a good reason to pursue your dreams. It doesn’t have to be logical or convenient. You don’t need a plan. You just need to decide that you want things to be different and believe that they can be.

In a season when it feels like I have lost so much, I can no longer be controlled by these nightmares. And even when I’m queasy and sore, I am happy in those quiet moments just before waking.

6 Responses

  1. madelyn levy November 7, 2015 / 3:14 pm

    How incredibly wonderful for you, Lisa. I know just a little of your anxiety about traveling. I recently spent 2 weeks in Europe with my daughter, overdosing on museums. I worried so about the flight and hotel rooms and taxis and food and smells for at least the 6 weeks prior to the trip. Though all was not perfect, I had a marvelous time with my 33 year old daughter; such a wonderful experience, the memories have sustained me since the trip.
    I am in awe of your determination, abilities and attitude. and your post has me crying as I type this. You are my hero. I feel I should beak out in song. with much fondness, madelyn

  2. Karen Neill November 7, 2015 / 6:19 pm

    Oh Lisa! Im SO proud of you for taking this on. No airline would let me fly right now, but I’ll get there, too. I’ve travelled a fair bit, but my children haven’t, and I want to take my son to see the cistene chappel, and my daughter the Eiffel tower. Nobody would be surprised if you cancelled at the last minute, and Im positive you had at least a few friends and family say ‘Are you SURE?”. You are brave every day when you step out your door, this took some pretty mad guts to do. You are a highly competent, independent woman, just as I was beforecI got sick. I can hear you now- It’s not THAT big a deal. Oh, yes, it is. These threats to you are real. China is as dangerous to you as the amazon rainforest was to missionaries in the 19th century. There are threats at every turn. But, oh, the elation to conquer that, and say “F- You Masto. I’m doing this ANYHOW.” Superhero, super brave. I hooe you contune to stay as least reactive as possible. And I hope just enough things go ‘wrong’ that you will come home brimming with stories!
    Karen

  3. L Wright November 7, 2015 / 7:12 pm

    This makes me happy. So glad you got to live your dream. I am still in that panic mode where it is just easier to give in and stay home. Hope to be as brave as you are some day.

  4. Judie November 7, 2015 / 7:20 pm

    Yeah Lisa, so happy for you and proud of you, you are a positive and wonderful example for us all!

  5. Angelina November 9, 2015 / 5:19 pm

    So excited and happy for you, Lisa, that you are living this most wonderful dream. Your trip has reminded me of a George Eliot quote: It is never too late to be what you might have been. I marvel at your strength and fortitude, and look forward to reading about your next challenge overcomed. Your constant encouragement provides us all with a little pat on the back and a “Ya, you can do it”.

  6. Angela Masomera November 11, 2015 / 7:01 pm

    Very brave! I have MCAS and just survived surgery and a formal education of about 100 doctors. We will all get there with some determination! Well done!

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