Can you hear me?
I'm in California dreaming about who we used to be
When we were younger and free.
I've forgotten how it felt before the world fell at our feet.
A year or two ago my cousins decided for Christmas their gift to their mom, my aunt, would be a girls weekend. The place really didn't matter as much as the idea to spend time together without the distraction of children, husbands, a get back to basics girls weekend to take time once a year despite the fact they both have three children and extremely demanding careers to take the time to be together.
My cousin had the opportunity to see Adele in Chicago last year and as she is a more die hard Pink fan went with enthusiasm but not thinking she would be blown away. Her sister, the one with the talented voice in the family, who really missed out on American Idol type shows is more in my world of die hard fan. So with only a few concerts left they quickly put together a trip to Phoenix…yes Phoenix in August - so clearly my home was available. They were a bit nervous if their mom - lol who wouldn't be - could handle the heat…but felt it was worth the shot. And then BAM…Adele put out the teary hoarse voice video that she needed to cancel her second concert (one that was already a make up) in Phoenix due to a bad cold….but don't worry she would reschedule. Yeah, no worries if you LIVE in Phoenix, but rescheduling four days before Thanksgiving not really the easiest trip to make back.
I called my cousin on Monday, knowing their mom had just traveled to see their brother in California, to see if at least the two of them decided they could last minute come out for the show. It turned out to be a no go. I had asked right at the beginning if they didn't go to let me know because I would attempt it. I felt a bit uncomfortable; I did go to the Bodeans last year for half the concert, but the venue was smaller - the tickets far less expensive, but Adele…everything quite the opposite. My dad also mentioned it - and said he didn't mind paying above market price, because he knew I wouldn't push the issue but wanted me to have the chance. I had thought if they did come back for the concert I for sure would scalp a ticket and attempt to go with them. They weren't coming, so it was me and Christine for our adventure.
I printed out the tickets and saw the word "upper" and my heart sank a bit. The night prior to the concert my whole body hurt and I couldn't keep my eyes open past 9pm. While I was in bed I kept getting little flashes of heat running throughout my whole body…and thought for once it feels like my body is "working" to fight something off. This was different from my normal night sweats. I just slept and when I would startle for a moment kept telling my body - well done - fight whatever it is off because you have a mountain to climb tomorrow. I woke up at 8am and nothing felt right. I immediately got a rush of heat and sweat up the back of my neck and rushed to the bathroom. This is not good. The body pains were bad, the rush of heat kept coming and the trips to the bathroom didn't seem to stop. I called my friend and started to cry. I think I have the "real flu" not my normal "flu". The smell of coffee that Chrissy brought the smell I normally crave was vile. I called my doctor's office - I had a previous appointment that I canceled to get to the show. My appointment was still available to do by phone. Around 10am I messaged my other cousin who was in town with her husband's family and said the tickets are yours - I can not imagine this turning around- and don't want to waste them. She kindly said you have 8 hours rest and see. By 11am I couldn't' get any food in but all of a sudden the smell of coffee returned to it's blissful routine. Okay - so if I can get coffee in this is my normal sick not flu sick. This may be possible.
At 2:30pm I had my appointment. My doctor recommended 2 homeopathics - one in case it was the flu and one if it was my normal flu. If you think homeopathy is a joke, that will be until you are prescribed the perfect remedy and feel your body respond. By 3:30pm I could attempt a little food. I can't tell you how many times Christine went up and down the stairs by now.
Since this illness, I have become a master at knowing my circumstances. I am like the team they set up before a President arrives at a new location. So I had called the arena and after a 30 minute wait asked about the handicap - no stairs seating. Unfortunately they were all already accounted for - since it is first come first serve. She did suggest I could come at 6pm and go to customer service. However, I know I have about an hour before I start fading. So that wouldn't be possible. I then asked given our seats what was the best point of entrance…South. Okay - check. Then I asked what time did Adele start the performance - 8:15pm. Alright. Got it. My concern was to bring the walker or not. Yes, that's a story for another day. I need it more for sitting than walking. But add to my claustrophobia - elevators don't work -and with the stairs to get to the seat - we would have to carry it to our seat which wouldn't work. Also the entrance nearest to the seats was not close to escalators or elevators. So all these things go through my head. What is best of not greatest circumstances.
So back to the day. I'm half asleep but body aches are so bad around 4:30 decide to force myself to Epsom salt bath. Alright things are starting to turn around. I get out of the bath. Chrissy brings me chicken and rice and a salad. I can eat this. It is staying down. I get to turn on the Bucks pre-game show which brings me a calming routine. I look at Chrissy and say- how is this possible. How - right this second I feel almost normal. How does this happen every day? Some days I never get that normal feeling - and I don't know how long it will last. She looks at me and says I have no idea. And if someone wasn't here with you all day they wouldn't believe it. I said I know - I barely believe it. Apparently I am currently the Phoenix rising from the ashes…time will tell.
At 7pm I am hungry again. I hadn't eaten much in 2 days - this is a good sign. So up and down the stairs again and a half of ham sandwich, yogurt and raisins. I have arranged for Vasil to drive us. This way at any second if I need to leave - there is no walk to a parking lot. No me standing by myself. I had also messaged him saying if at 7pm it looks impossible - my cousin is definitely out - the tickets are yours. Vasil…who well again, another story - is so kind he said - we do the best we can - you can't go in we don't go in. But we will try. My sister texted…Goal 1. Get there Goal 2. See her Goal 3. One song. Okay - yes I can break it down that way.
We timed it perfectly. No traffic. South entrance - walk in the usher says you have 5 minutes before Hello. Golden. Deep breathe. Goal 1 down. We turn to the right and the usher said - up two flights of stairs. Okay - I can do 2 flights. We get up the two long flights and it's the 200 level Suites. There is a strong fish smell they must be serving that makes my stomach cringe…We being to hear the first words being sung. The usher said - two more flights. Okay. I can do two more flights. Chrissy now has my purse. Two more flights - Mother F'er are you kidding me…the second level of Suites. Oh sorry one more flight. Chrissy looks at me…and I'm like what can we do - my heart is beating so loudly I can feel it. We get up the final flight. Pause at the aisle. And like okay we did it. Enter, Hello is blaring but I'm so lightheaded at this point this is feeling more like a dream. The usher looks at our seats …says you are the top row. I look up at the staggering steep steps - Chrissy and I lock eyes and I say - No F'ing Way. I can not do one more step.
Oddly, I'm not discouraged -more like you did it. Goal 1. Goal 2. and kind of Goal 3. I say let's just go back down, I saw some chairs outside the black curtains separating the venue from the walkways. We can just sit and listen from out there. So we slowly go down the steps…and at the bottom I look straight ahead and see the curtain on the left has the handicap sign. And all the rules below it. I read the "fraud" penalties and part of me visualizes this big mistake and I am being taken handcuffed out of Adele. But the other part is walking straight forward. I pull back the curtain, and there is a folding chair propped up. This section has two "disabled" seats it appears plus one for their guest. One an obese woman on the far left and the woman in a wheelchair the far right - where we entered hence the extra folding chair. This is one of the "no steps" necessary spots. I sit down - take in the last seconds of Hello. Tears well in my eyes and I lean on the metal post next to me. Chrissy is standing behind. Then an usher comes from the other side of the metal posts and asks if I am allowed to be here…and through Adele belting out I say truthfully. "I called, disabled was all booked. I have a chronic illness and couldn't get here early. I tried to get to my seats and almost passed out - and I promise you I will be lucky if I last for more than 4 songs." She looks at me - and kindness in her eyes says - okay.
|November 21, 2016
Chrissy and Me
This illness most of the time you don't feel like you are truly living. You are existing until the next moment of relief. And for an hour I was living. It took a lot to get here. It wasn't the same as heading out to dinner before, grabbing a drink, rather the necessary monitoring of myself to make sure I didn't put myself over the edge. I have learned it's always best to leave before I have to. So I gave Chrissy the look - it was after 9pm - texted Vasil and we walked a few steps down and like Cinderella my car was waiting. While we were leaving all the ushers at the exits said - you can't leave she has more than half the show left. And I kindly said no this was perfect. And then they kept persisting - not being able to reconcile this person who looked well leaving a sold out sought out concert. So I finally said, I have a chronic illness, getting here was enough and everything else was perfect. And I got a look of recognition. Not understanding, but understanding this woman couldn't understand, she didn't understand but she got it.
Vasil had the biggest grin when we got into the car. We got home, Chrissy took Sophie out brought me some ice cream and I collapsed wondering if that was all a big dream - or did that happen? I tried to write yesterday but couldn't move. And wanted to write while it was fresh.
I know how sad my cousins were to have had this big trip planned and the reality that it didn't happen the way it was suppose to was a gut punch. I get it. That is how I feel nearly every moment of every day. Whether it was getting all dressed and then being too sick to make my niece's dance recital - especially since she has huge performance anxiety and I wasn't there to support her. Missing every soccer game of my nephews. Missing this amazing life laid out in front of me. That is what it feels like every day - I do my best. I made a promise to myself a number of years ago when it was obvious people felt guilty telling me where they have been - what they have been doing - I will do everything I can to encourage people to live loud, live boldly remember what matters. I will never make someone feel bad about an opportunity they have and I can't do. Joy is expansive - if I can have joy for their experience rather than sadness for mine - it helps me too. I will say food is the exception. Since food is life and it scares me that I can't eat so many things I do ask people from refraining from telling me about their meals.
I have gotten good at missing all the things I use to love. Maybe sometimes I make it look to easy. The reason I do is because most days I'm so sick that missing something is too far out of my mind. The other is coping, when I start to take in what use to be rather than what is my heart gets shattered in a million pieces. When I'm my best self I remember I've had more experiences prior to getting sick than most have in a lifetime. I am still one of the lucky ones. But there are days that pill is hard to swallow.
When I attended Adele, all I felt was gratitude to my parents. There is no way most CFS/ME patients could do what I did - because they don't have full time help, then a driver, and my parents give that so freely - they didn't care if I got half way there and needed to turn back. That's not the point in my life right now. The point is to way the risk and rewards and try to slice out these moments of living not existing. It is bittersweet, when I had mentioned to Chrissy all of a sudden I felt pretty well, I said wow life was so much easier. And being at the concert and knowing that was food for my soul for so many years - and this experience so different than when I was well was also hard to swallow. But there was so much kindness sent my way - I would be a fool not to soak that in. My best friend texted me the next morning - when I saw your photo I had tears in my eyes for you. That is love. I have an abundance of love. I am desperately lonely here in Phoenix right now. I miss my friends, my family but I can't dismiss the family I have created here. Vasil, Christine, Ashley, my doctor, my psychiatrist….they see every day through the 4th wall and they root for every tiny achievement. Someday that is coming downstairs and others it is a glimmer of an old life.
Adele you are truly one big blur of gold sequins. But I was there. I felt my cup vibrate, the crowd yell, the lights go up, your use of the word Fuck in casual conversation, putting on a goofy t-shirt over the sparkly dress. I interacted with the usher. I made it up the Everest of the steps. And I put myself first- I wasn't embarrassed to say - yes I belong in this disabled section -and that is fine by me because I am here.
Hello From the Outside
At Least I Can Say that I Tried