The Adventure Continues
December sure flew by. The first ten days were consumed by painful tests, followed by a short hospital stay, and then suddenly Phoebe was here. She arrived on the 12th and stayed to the 22nd. It was the best Christmas present of my life. While she was here we were both overcome by the feeling that everything was going to be alright and that I am going to get my new lungs.
We managed to do a lot in ten days, considering how restricted I am by my oxygen situation. I am on 2 litres continuously at home, but have a pulsed machine which lasts about 2 hours on battery and can be plugged into a wall socket to charge. So I carry it around in my backpack, and it is pretty heavy so I can’t really walk and talk... and stairs are MURDER. But we did alright by cabbing a lot and ducking into coffee shops to recharge my power pack and catch our breath.
Things Phoebe and I did:
-Went to the museum and saw the Dead Sea Scrolls. I ate gross museum cafeteria chicken strips and ended up feeling sick and throwing up in the giant crystal formation on my way out of the place. That was rather embarrassing but I managed to contain it in a wastebasket like a true pro and not too many people were grossed out. Then we sat down to catch our breath and watched people cooing over their babies.
-Went to the art gallery and saw King Tut’s looted treasures. Phoebe informs me that the graverobbers who stock the British Museum got all the really good shit, so I'll just have to come and gawk at it when I get my lungs!
-Hugged a giant ice cream cone on Yonge Street and got coupons for free ice cream
-Took the GO train to Hamilton to visit Kendell and Bram; Walked through an amazingly beautiful and frigid snowy forest with creeks and bridges and a frozen waterfall. We brought her dog along and it was a REALLY long walk in the bitter cold for a dude with two bum lungs, and let me tell you I wasn’t sure I would survive. But I persevered (to the intense disdain of my female companions who were appalled by my mule-like male stubbornness and stupidity) and made it all the way back to Kendell’s house where I promptly barfed all over her nice marble floor, which was all good because it was easy for her to clean up.
-Went and saw Mother Mother and Matthew Good play in Hamilton with Phoebe, Kendell, and Kendell’s friend. This was a cool mix of old and new for me; when I was a teenager Matthew Good’s singles were all over the radio for years and he was a huge influence on my (dare I say, excellent) musical taste. I haven’t listened to Matt in years so when I heard him sing some of his old stuff it was a weird injection of nostalgia in a very place far from home. And Mother Mother were stellar and I hope Phoebe spreads the word about them in England.
To say that Phoebe’s visit was the highlight of my year would be an understatement. 2009 has been one of the hardest years of my life. The limitations to my quality of life grew to critical mass this year and it finally reached the scary point of no return that every Cystic dreads: going on oxygen 24/7. Having this tube constantly in my nose is like being chained in a cell. My nose is in a perpetual bleed-and-scab cycle from the O2 cutting into my flesh. The only thing I can do without oxygen is sit or lay down. Everything else I need to be plugged in for; I even get lightheaded in the shower. So to prevent myself from dizzily collapsing and wanging my head I wear oxygen in the shower too.
Now, being youthful and energetic and romantic and frisky and attractive is pretty hard under these circumstances, but I love Phoebe with all my heart and had been fantasizing about her for the past several years while lying sleepless in the hospital like a wounded soldier and whatnot. And Phoebe was ALL of those things, though also diabetic. So things were a bit bumpy on that front but I refused to let my limitations get me down, she was exceedingly patient, and we had a very good time! Snuggling and holding hands and talking into the night while planning for tomorrow revitalized me.
We decided that 2010 will be the Year of the Lungs. I intend to make my family and friends proud by surviving to get my lungs, and by spreading my wings. I feel like now is the time to lay the groundwork for some sort of amazing future, and it is exceedingly strange because I don’t know if I’ve felt that way before. I’ve always tried to avoid thinking of the future, and always figured I would just die in my mid 20s. Now all I want is to live more, to pour myself into the sea of culture and experiences that the world has to offer. There are many things I was blind to in my youth, but through experience and loss and hardship I have found a type of true sight and I realise that to fight as hard as you can to stay alive and spread your love is the most noble and enriching thing.
And one of the main reasons I feel that way now is the angelic Eva. She is soldiering along on her own LungQuest and still beaming love out into the world like a beacon. I look forward to reading her writings and going ‘amen sister’ through 2010, and I hope you dear anonymous and not so anonymous readers will keep track of our stories too, and keep us in your hearts this year, and help everyone by signing people up as organ donors!!!
I love you all and bid you a happy new year!
James
We managed to do a lot in ten days, considering how restricted I am by my oxygen situation. I am on 2 litres continuously at home, but have a pulsed machine which lasts about 2 hours on battery and can be plugged into a wall socket to charge. So I carry it around in my backpack, and it is pretty heavy so I can’t really walk and talk... and stairs are MURDER. But we did alright by cabbing a lot and ducking into coffee shops to recharge my power pack and catch our breath.
Things Phoebe and I did:
-Went to the museum and saw the Dead Sea Scrolls. I ate gross museum cafeteria chicken strips and ended up feeling sick and throwing up in the giant crystal formation on my way out of the place. That was rather embarrassing but I managed to contain it in a wastebasket like a true pro and not too many people were grossed out. Then we sat down to catch our breath and watched people cooing over their babies.
-Went to the art gallery and saw King Tut’s looted treasures. Phoebe informs me that the graverobbers who stock the British Museum got all the really good shit, so I'll just have to come and gawk at it when I get my lungs!
-Hugged a giant ice cream cone on Yonge Street and got coupons for free ice cream
-Took the GO train to Hamilton to visit Kendell and Bram; Walked through an amazingly beautiful and frigid snowy forest with creeks and bridges and a frozen waterfall. We brought her dog along and it was a REALLY long walk in the bitter cold for a dude with two bum lungs, and let me tell you I wasn’t sure I would survive. But I persevered (to the intense disdain of my female companions who were appalled by my mule-like male stubbornness and stupidity) and made it all the way back to Kendell’s house where I promptly barfed all over her nice marble floor, which was all good because it was easy for her to clean up.
-Went and saw Mother Mother and Matthew Good play in Hamilton with Phoebe, Kendell, and Kendell’s friend. This was a cool mix of old and new for me; when I was a teenager Matthew Good’s singles were all over the radio for years and he was a huge influence on my (dare I say, excellent) musical taste. I haven’t listened to Matt in years so when I heard him sing some of his old stuff it was a weird injection of nostalgia in a very place far from home. And Mother Mother were stellar and I hope Phoebe spreads the word about them in England.
To say that Phoebe’s visit was the highlight of my year would be an understatement. 2009 has been one of the hardest years of my life. The limitations to my quality of life grew to critical mass this year and it finally reached the scary point of no return that every Cystic dreads: going on oxygen 24/7. Having this tube constantly in my nose is like being chained in a cell. My nose is in a perpetual bleed-and-scab cycle from the O2 cutting into my flesh. The only thing I can do without oxygen is sit or lay down. Everything else I need to be plugged in for; I even get lightheaded in the shower. So to prevent myself from dizzily collapsing and wanging my head I wear oxygen in the shower too.
Now, being youthful and energetic and romantic and frisky and attractive is pretty hard under these circumstances, but I love Phoebe with all my heart and had been fantasizing about her for the past several years while lying sleepless in the hospital like a wounded soldier and whatnot. And Phoebe was ALL of those things, though also diabetic. So things were a bit bumpy on that front but I refused to let my limitations get me down, she was exceedingly patient, and we had a very good time! Snuggling and holding hands and talking into the night while planning for tomorrow revitalized me.
We decided that 2010 will be the Year of the Lungs. I intend to make my family and friends proud by surviving to get my lungs, and by spreading my wings. I feel like now is the time to lay the groundwork for some sort of amazing future, and it is exceedingly strange because I don’t know if I’ve felt that way before. I’ve always tried to avoid thinking of the future, and always figured I would just die in my mid 20s. Now all I want is to live more, to pour myself into the sea of culture and experiences that the world has to offer. There are many things I was blind to in my youth, but through experience and loss and hardship I have found a type of true sight and I realise that to fight as hard as you can to stay alive and spread your love is the most noble and enriching thing.
And one of the main reasons I feel that way now is the angelic Eva. She is soldiering along on her own LungQuest and still beaming love out into the world like a beacon. I look forward to reading her writings and going ‘amen sister’ through 2010, and I hope you dear anonymous and not so anonymous readers will keep track of our stories too, and keep us in your hearts this year, and help everyone by signing people up as organ donors!!!
I love you all and bid you a happy new year!
James