by Karen Luoto
I still cannot believe it…
I NEED to tell you about a cross country trip I recently took with the emotional and logistic help of other ME/CFS’ers from the community.
Although I am in severe pain now, feeling as though every bone in my body is breaking with every step, the tendons and ligaments have all torn away from every joint, the brain is detached completely and my eyes cannot seem to focus on a single word at the same time, I AM HAPPY!
I recently traveled a 4400+ mile trip from Jacksonville, FL to San Antonio, TX to Albuquerque, NM back to San Antonio and then back to Jacksonville. I cannot believe I did it… and I am STILL ALIVE. (I think)
I have met several “friends” on the forums and wanted to help someone, somehow, when I was asked if there was any way to help someone get from San Antonio to Albuquerque to look for a place to live due to their physical climate needs.
I have never been to either of those places and always wanted to go…you know, the bucket list we abandoned when we became ill… How would this ever happen now? How would I ever be able to physically make the trip? How would I now afford such a thing?
Then, I was offered a place to stay in San Antonio with another ME/CFS person, his wife (who has now contracted ME/CFS) and help with the logistics of the trip. How could I refuse? Oh, yes, minor point, I was completely bedridden a couple years back.. so how in the world would this be possible now?
I closed my eyes and said, “It will be worth the price you will pay” and just went on “Hope”. I truly don’t know how I did it and wouldn’t expect to be able to do it again…at least not until my body heals a bit and who knows how long that will take? Another 6 years? A lifetime? Who knows? But, enough of the trials we all face, let me tell you what happened.
I left Jacksonville, thanks to my son and caretaker, who said, “You need to do this for yourself and for all the people who are really ill.” My daughter also gave me her blessings, saying that, although she was concerned, she wanted me to live like I used to…
I arrived in San Antonio and met Adin, who is the one of the incredible volunteers at Phoenix Rising, and his wife, Jennifer, who is also a volunteer and an incredible woman, and their two lovely young children.
They were then living with her parents due to some unforeseen circumstances and needed to move to a better climate due to the issues Adin is having with the climate in San Antonio. And, yes, after corresponding via the Internet for almost a year, when I arrived, the tears flowed, the hugs came (with all the pain), but the ability to meet someone from the forums, face to face, and know that they know and understand was like a lightning bolt of energy infused with love and caring and everything we dream of every day… day after day…
Of course, I then slept with no one asking me why or what is your problem…I just slept and when I was OK again, Adin, Jen and I left for Albuquerque to look at houses and for me to see the sights.
It was something like a dream from then on. I met other ME/CFS’ers in Albuquerque that I had only known by their forum names, but what a revelation. Like the stars opened up and shined on me. I cannot express the feelings I had when meeting any one of them. I felt as though I had been swept up by some unknown force that was holding me together and keeping me well enough to walk and talk and visit people and places I had only dreamt about.
I met Sushi, who most of you know as a very knowledgeable and helpful community member, and who I had the pleasure of chatting with on the forums. I met Claudia who is an advocate for ME/CFS and has worked diligently to organize fundraising events for our cause.
Adin and Jen took me to the tops of mountains where the caulderon is only 5 miles below our feet. While I got hit with a snowball (Thanks, Adin) I was told the hot springs that emerged a mile below the spot we were standing on was heated sulphur water and too hot to touch unless it was allowed to merge with the snow run-offs and bathed in special hot “tubs” that were part of the natural order of things.
Petroglyph National Park
Again I slept (our kind of sleep), before attempting another “tourist destination”; Petroglyph National Park, a well known site for Ancient Indian tribes where they describe, on scratched rock, their visions, their world and their way of life. Sushi and I climbed a “mountain of volcanic rock” gingerly picking our way along a “semi-paved” path. We didn’t know if we would be able to make it to the top and see the “lookout”, but painstakingly, and with several oxygen stabilizing stops, made it to the top to rejoice with unknown fervor at our final destination. We could look out and see all of Albuquerque and the mountain ranges that surround the city. We cried at the unknown force that allowed us this pleasure.
Oh, yes, in case you wondered how we did it… We needed all the tools we had just to have enough energy… (The ranger said this was the shortest loop trail and should take about 30 minutes. It took us about 2 hours…)
We then slowly descended back to the truck to try another stop at the dormant volcanoes that lie a bit west of where we were. While we drove to the next destination, a hot air balloon rose from the horizon and we rejoiced at seeing it. How lovely to see something outdoors and in clear view.
We made it to the site of the volcanoes, but only 10 minutes before they closed the gate, and didn’t have the stamina or ability, at that point, for the walk to the volcano. But we took pictures of the vibrant sunset that was closing around us.
We then met up with Adin, Jen, Claudia and her husband and ate dinner at a lovely Greek restaurant. It was soul-wrenching for me to know this may never happen again in my lifetime, but for one instant in time, I was there, I was with people that knew me and my illness even if they had never met me before. They just knew, we all knew and we all understood.
I only hope my short term memory loss never blocks that image of us all sharing our trials and tribulations, our hopes and dreams, our wants and desires to help the whole ME/CFS community to come together, to speak as one voice, to demand respect, to find ways to bring us together, to find help for our illness both in the short term and long term and most of all to find what we need – “A CURE”.
San Antonio River
I then returned to San Antonio with Adin and Jen and, again after sleeping for a few days, we all traveled to the “Riverwalk” with the help of their dear friend, Leon. I could drive no more, so he took the wheel. We walked or stumbled (or whatever it’s called) down the sidewalk next to the beautiful San Antonio River to stop at shops and admire the Christmas lights, the riverboats and all the goings-on of normal people. I felt almost normal… although I knew it wouldn’t last.
We ate at a “British Pub” along the Riverbank, like real people do. We watched the passers-by, knowing that any one of them could have the same fate befall them at any time, unknowingly halting their very existence and changing their lives forever. I felt like I was in a dream world where this illness couldn’t stop me, where no worries lie, where life is but a dream and all you have to do is follow the path. We ate “Scottish Eggs” and loaded baked potato halves and quesadillas like we had no care in the world.
Then, as our illness dictates, Adin and Jen fell ill and had to stop and sleep. I wanted to see the Alamo, just one more stop, please, oh please, let it be. I traveled by myself to see the place where the words ring loud and strong, “Give me liberty or give me death”. I thought, what a horrible illness this is, that I feel the same way when I’m in my bed unable to lift my arms or legs, unable to feed myself, unable to bathe. And I am only fighting for myself, not for a country or a universal truth, but I am still fighting for all of us who suffer.
My last stop before I left was to the Pueblo Indian Cultural Center, where the Native Americans Indians are trying to teach the rest of the world about their culture, their plight and their ways of living. I pondered, how beautiful, how wonderful that people are interested in understanding, if only that were true for us, the ones with the invisible illness. We have no explicit culture, no explicit ways of living, no uniform look or nationality, we only have this illness that draws us together.
Yet everywhere I went, everyone I met that has ME/CFS or has a loved one with ME/CFS has compassion for each other that extends beyond natural boundaries, beyond nationalities, beyond borders or countries. We have an understanding and respect for each other that transcends all the obvious trappings – and maybe, just maybe, that is worth more than all the other limited, defined physical laws of this world and we can both cry and rejoice together when one of us can make a trip cross country to search and find another one of us.
I thank all the Phoenix Rising members for being here,
K2 for Hope