At first I was afraid, I was petrified. Kept thinking I could never live without you by my side.
So come with me. Lets be brave and journey westside. Together.
Prepare for some cuddles California...
Ask me anythingSubmit
…but there is another story from this day (Sunday). Post flight, pumped up, delirious, sleep deprived ‘flyer’ ( have a certificate uh-huh), bedraggled, not a pretty sight, but we need food. And Bloody Mary’s. So we drive to Pacific Beach with me screeching “rising up straight to the top, had the guts got the glory”…whilst the boy smiles and encourages me to help with directions. Not a chance. I am so far gone to be helpful.
Eventually we rock up at the Fig Tree cafe and are assigned to a queue. Sunday. Lunchtime. Spring Break. But it’s alright, drinks can be delivered to us outside on the waiting bench. I’m still ranting incohesively about my inner brilliance when a (rather lovely looking) guy comes over on crutches and asks to sit and wait with us. And I can’t help myself but fill him in on my flying courageousness, and he applauds enthusiastically. I ask the boy if I should go get my certificate. He frowns. That means no.
Anyway, once the lovely looking stranger gets a chance to talk (shame on me), he asks where we are from. He says he was also in London last year for the Paralympics. I talk about how much we wish we had been there and he tells us how brilliantly delivered the whole event was. I grin, patriotically.
And then. The reveal. He won a bronze and a gold, A GOLD MEDAL. And also the very same medals he fought for (and deserved) in Beijing. Ex-military involved in a motorcycle accident subsequently losing the use of his legs, one (many/most/me?) might crash and burn. But no, this great being chose to make the very bestest of an awful tragedy. And I never want our table to be called as I am so brilliantly inspired by this incredible man. He’s going to retire after Rio, but I so definitely know that he will continue to make random strangers lives happier. In the 15 minutes I spent with this incredible guy, I changed a bit. In a really, really good way. I didn’t get his name, but I will never forget those precious 15 minutes…
I know you know, but let me remind you (again and maybe once more, next week) that yesterday I was pushed out of a plane. I did it…
Lets get some perspective. I am a despiser of all things high. I have vertigo (never before useful, but perhaps, for one day only, that insane “urge to jump” came in handy…). I’ll be honest, lots of things terrify me. Bananas, men with long nails, facials (bad experience), the ocean (and all things beginning with S that lie beneath)…But the boy loves mental stuff. He thinks its like “awesome” (his words) to jump off a cliff relying solely on a piece of elastic and a big wad of good fortune. Opposites attract I guess. Suffice to say, he was excited. As for me, well weeks of bad sleep and numerous “I WANT A REFUND AS I WILL MOST LIKELY DIE” phone calls to the skydive centre. But, I remind myself, the boy does immense things for me everyday so lets go Lucy Long. Or, at the very least try…
And then it was Sunday. 8am. Cloudy. I smile a sleep deprived selfish grin to say thank you for those who provided said precipitation (I’ve read in my hours of useless research, no jumps in such weather). But we head out regardless. 30 minute car journey with random me interludes of “at least I’m trying” and “perhaps we should postpone until I feel better” (which; in relation to upcoming event, will never ever happen).
As we pull into a busy car park, I note a very small airplane and plenty of unknowns psyching themselves up for the unknown. They’re smiling. I am in the wrong place. A very wrong place.
A zillion disclaimers signed later and a disturbing video-on-repeat lawyer giving examples of folks who have experienced accidents and are totally not ever, no way in the world, able to sue (cue LL “who gets what ifs…” to the boy, nothing he hasn’t heard before).
And then we wait, and wait some more. The clouds must clear, a lady who I KNOW has never jumped from a plane before tells us, shes too happy. I will them fluffy white beauties to hang on, protect me. But the buggers disapate and the alarms go. Take off (bite another nail). In some twist of evil fate, we are not on the 1st flight, nor the 2nd - too much time to think. And I am forced to watch a rickety plane fly so high I can’t see it anymore thrusting happy (odd) people into the sky. They all seem ecstatic. I question their sanity. Their luck. I grind my teeth and rock a bit (lot).
Flight 3. That’s us. We get harnessed up and taught how to not die (well how to do our best not to). And I get paired with a tubby Canadian (Johnny) who walks me to the plane. I say “I’m scared”. He says “me too”. I say “I don’t like heights”. He says “me neither”. I say “is everything going to be OK?” He says “let’s hope so”.
We get squished into the plane. And I don’t like seeing masking tape on such devices. The instructors sense my very apparent fears. And respond sweetly so; “hey Lucy, where’s your parachute? He’s got one, he’s got one, he’s got one, are you crazy, you NEED a parachute” and “so the bottom of the plane drops down and you fall, simples” and “Johnny’s new and, well, he’s a bit sporadic”. And I sweat, tears well up and they shut up and hold my hand.
Next bit. I’ve to shuffle tight between Johnny’s legs and he pulls on strings and I squeeze his hands tightly and he asks me to please leave that for later and hold onto the harness. The boy is at the back of the plane (far from me) squeezing his buttocks into another mans lap. A brief LL smile ensues until the door is whooshed open and I see my boy being thrust out at 13000 feet. Gasp. Panic. Baaaaaaaaaaaaaby! No time to ponder more about the boys life status as I am now waddling down the not-really-a-proper-plane strapped to Johnny and he says “it’s ok Lucy, head back, annnnnd NOW”.
And there it is. We are flying. Chubby cheeks a blubbering, BAD words exhaled and 60 seconds of, oh, I can’t explain it cohesively…Mental, crazy, messed up scariness and almighty brilliance and then, and POW. Parachute unleashed and we float. And Johnny lets me fly (just for a little bit as I was rotating rather too wildly; think me dancing). But I flew. I, Lulo who has been know to cry hysterically on commercial big and proper planes that you never have to jump out of, flew. And it was brilliant and beautiful and also the most insanely weird and wonderful thing I think I’ve ever done. I think. I remain undecided as to my true feelings about the whole event. All I know is that I don’t ever want to forget that I flew. Yesterday I flew.
And so it begins. Not like its a biggy or anything. No. Scrap that. YES IT IS. I am about to (attempt to) change my life. Do you feel the positive Californian energy? Ohmmmmmm, COME ONhmmmmmmmmmmm. Let me feel it. Please? Something? Anything?
Ohhhh, OK, thanks. That feels good. But I am so far from Zen right now. Am-dram Lulo (LAMDA to grade 8 all with distinction, oh yes!) goes a little nuts about everything. I am trying to arm myself against those naughty, devious, MS blips, make them feel less, erm, crazy/debilitating/ frustratingly wrong…
But, weird stuff scares me. Okra, bananas, those texty smiley/winkey faces, being so far from you, currants in chocolate/anything but chocolate in chocolate, and I feel like I am about to self combust with fear. But, as The Boy reminds me; I should/must focus on the real. The now. The real and actual fears (NB irrespective of actual subject I despise all the previous, bananas in particular). And missing you is painful. With a capital P.
And so, here I am. With a new, super neurologist. Small, like me. But brilliant (and therein ends the association). And I am to start my daily anti-MS (terrible, wrongful explanation - I shall bore you further someday) injection on Sunday. I am hoping to share this journey with you. I am not asking for money. Not today. And not even for my ‘jump out of a plane tied onto a complete stranger fiasco’ - just send me luck for that - and earplugs for the whole State of California. Right now, I just want to talk. And, if you’re listening, that’s great, I appreciate you.
Hello. My name is Lucy and I have MS. Until a year ago, I couldn’t say that out loud. I didn’t want to. And perhaps if I didn’t say it, it would go away.
Spring 2005. I picked up the phone. No words came. Just a slur. It was my job to talk to people. I had to talk. Alarm sets in.
And then my vision went blurry. I was driving home to my parents and I couldn’t see
the road. It was a long trip. Alarm turns to fear.
I had more tests than I can count on my hands and toes. Lots of “maybes and “probably nots” but no diagnosis. Fear turns to ignorance.
In my head I knew something was wrong. My heart wouldn’t let me accept it. At 25, I needed to be perfect. I needed to be able to dance all night and go into work the next morning. I needed to be normal.
For four years I lived my life following my heart. The tingling in my hands was fine. The occasional slurred speech could be hidden. I could fight off the fatigue. I could blame my klutziness on my falling over. Everyone has their problems right?
And then I was hospitalized. They said I had Guillain-Barre Syndrome. Googled. I didn’t want it. Fortunately I didn’t have it. But the doctors started asking more questions. The questions got more intense. The answers got scarier. Ignorance turns to fear. The clock ticks slowly.
Really slowly. Another two years of testing and passing and hoping and wishing and crying and denying. I was alone inside. As far as my friends and family knew, I was just fine. I didn’t want to need help. It’s hard being scared on your own.
I remember the day clearly. I have brought my darling cousin with me. I sit down in my neurologist’s office. He has some test results. I have MS. He says it out loud. I cry. No, I sob. I can’t hear him anymore. I have to leave. My cousin holds me. Tightly. I don’t want to talk to her. Just feel her there. I remember nothing more about that day.
In fact I remember very little about the next few weeks. Except that I cry. A lot. And sleep. Very little. What if I wake up and can’t walk? Every time I see someone in a wheelchair I fear my future. I question my past. What did I do to deserve this?
Two years later and here I am. I am okay. I am not just coping - I am living. I live with my MS. I love my life.
I still cry. But not so much. I still get scared. But I have support. I have a boyfriend who adores me. A family who love me. Friends who hug me. Lucky Lucy Long.
