Joni Mitchell’s performance of her classic “Both Sides Now” has been going around the internet today. Have you seen it? Watch it if you haven’t. Just the reactions of Brandi Carlisle and Wynonna Judd alone make it worth it, besides Mitchell’s obvious giddiness at the end. Joni Mitchell was more someone of my parent’s generation in the background of my life, but this song, released the year before I was born, has just always been there. I never gave it much thought. But even I was moved to hear that Mitchell, at 78 and recovering from a brain aneurysm 5 years ago that took away her ability to perform her songs, was able to come back and perform last weekend. You never know when your last curtain call is, and she has a few bonus ones here it appears.
Being a Sick Person as of late, I have had to deal with the reality that there are things I’ve done that I may never be able to do again. I don’t know if I will really be able to ice skate again, I rode a bike around an apartment complex recently, but I doubt I will be able to do the carefree riding down an ocean path that my son, Avery is just discovering now. My father took his last trip to see me in 2019 and probably didn’t think it was his last, and now he is 80 and will likely remain in Kansas, having traveled America extensively but never gotten out of North America. I was not sure if I would ever get off this North American rock in my lifetime, either. But just recently, I did.
I’ve been to Europe! I can say it now. I spent a month in Sweden. I had my 52nd birthday in Sweden. I’ve done a thing that as a Sick Person, I wasn’t sure I was going to be able to do.
I met my husband, Nik, in 1993. And then it took us 17 years to get married and another 12 years for him to take me to visit his family in his hometown in Gotland, Sweden. In between that time, there has been marriage, friendship, divorce, kids with other people, kids together, job losses, businesses, houses and apartments, custody issues, poverty, death, birth, and disability. But always he said he would take me to Sweden, and we would stand in the church of his tiny village called Stenkyrka and say our vows to each other. We tried to do it when we first got married, but we had immigration issues. We tried to do it other times but there was no money, or there was illness or work. We tried to do it on our tenth anniversary and there was a worldwide pandemic, and then I got told I needed a kidney transplant and couldn’t be more than an hour away from the transplant center. And as my energy depleted, my hopes of ever getting to Sweden just started drifting away. Maybe, like my dad, I will never get off this North American rock.
But it was more than just going there to visit. Nik came to the US for me, and he didn’t really want to. It was because my kids (and at the time, his kids) were in the US and I couldn’t remove them from the US. We thought we would stay a few years, sort things out and wait for the kids to get a bit older, and then we would go back to Canada, where he had been living. It had always been the sort of background plan.
And so we worked and worked to do all the right things, and juuuuust when we were getting into a position where we could consider making a move…all the new shit went down. As the years went by, we were getting priced out of Canada, whose housing crisis is much bigger of an issue than even in the US. Housing is the Achilles heel of Canada, like health care in the US. But then, Nik’s best friend suddenly died, and he had always told us (possibly in gest, because what healthy person thinks they are going to drop dead one day?) that he was giving us the house when he dies. We didn’t take it seriously or anything, until the very first thing his mother said to us when we went to the funeral was “Do you want to live in Grant’s house? We want you to live here. Lets make it work.” But then…before we could even update the Canadian passports…it blew up. Kidney disease, pandemic, his mother’s illness and death. The house was sold. Bye bye, Grant, and Toronto and Roncesvalles and High Park and all the memories built there. Poof!
Until one day, when on a whim I decided to download a Swedish language real estate app and learned enough real estate related Swedish words to use it. On Gotland, Nik’s island in the Baltic Sea, there were little cottages that were even on a little plot of land to garden on, and maybe have a couple of chickens, and let our dogs run…and we could AFFORD THEM! And for such a rural/small town area there were even buses and planes and ferries! And as the pandemic had shown, we could continue working remotely for the most part and built our business slowly in Europe as we kept our business going in the US. I mean, it would be an undertaking, but we could do it, except—Kidney Transplant/Dialysis prison.
So, this trip was both a trial and a consolation prize. My life could go either way. I could get a transplant and have lots of great, productive years left (Be Super Pigg!) and go on all kinds of European adventures while keeping a lovely garden, having my kids in college in Sweden (for free!) and maybe even bring our brand of vocational rehab and assistive tech to Sweden to rally the blind folks there. To work but also ease into retirement where we will build community and enjoy a slower pace in our old age.
Or this trip could be my “Make a Wish” trip. My last hurrah before my health declines dramatically, and I die young(ish). And maybe this trip is Nik’s and my last big adventure and part of it is for him to reconnect with his family and home country so perhaps he might have a soft place to land if he becomes an early widow? And maybe this will be my first and last time I will go to Europe, my only time to meet his relatives and see his hometown, and the last time I will see all five of our kids together.
I see this trip from both sides now. But I don’t know which side it is.
But in any case, it was a wonderful trip. I don’t know how much of this is placebo or rallying or the change of scenery or actual real environmental factors, but I had more energy on that trip than I have had in the last 2 years. I was still a bit slower than the others, but I did stuff all except for 2 of the 32 days we were there. There were a few days I bowed out early, but other days I walked up to 4 miles and days I swam and rode bikes and had to navigate and socialize with people with both a hearing and language barrier and I did it all. It wasn’t even hard. Am I really that sick even? Is this reality or is my home chronic illness the reality? I can see it from both sides.
On facebook I did little photo posts where I told all the things we did and talked about the places we went. But it was not the full picture of what was accomplished. I feel like in sort of helping Nik take a bit of control and responsibility for our travels, he was able to get some added peace with his family. (Almost all disabled people suffer from some level of ablism from their families who excessively worry and feel burdened about stuff they don’t think we can do even though we do it every day at home, but then resent us for the fact that they worry and feel burdened. There is no winning, which is why lots of disabled people live FAR from their families.) We both wanted to work out our own transportation for the most part on this trip, via bus or taxi or uber or whatever. But this creates a fuss with families. I told Nik, “um, you get that you don’t need to tell anyone or get their permission to ride a friggin’ bus. Just DO IT!” It’s amazing how all of us need to be reminded that we can actually be the same grown-ups we are in every other capacity of our lives, even in front of our families of origin. It has always been hard to understand why families struggle with this issue so much, but as I watched Nik’s mother with Nik and the kids, her love is obvious. It’s almost as if sometimes that love is so much or so close that they can’t step back and see the whole you for who you really are. And as disabled kids, we just have to try to appreciate the fact that they are doing their best with the love they have.
The “both sides” of that is that as we worked on his relationships with the older generation, we also got a chance to spend it with the younger generation. It was great to have all 5 kids together. I did not get to spend a lot of time with Nik’s daughter, but one of my favorite memories will always be when she and my daughter, Aaron, rolled down a grassy hill together. My daughter is transgender, and neurodiverse, and is a very unique person. At times she is hard to deal with because she is EXTREMELY literal and misses social cues. At other times, she is the cat’s meow. Creative, talented, personable and empathetic. But…at all times she is unconventional. I loved how the two of them just accepted each other and literally “rolled with it.” Nik’s daughter is a bright spirit that can make friends and family with almost anyone anywhere she goes.
In all the shenanigans that have gone on with our kids’ 4 parents (all of whom are blind) it was Nik’s daughter and son—most especially his son—that took the brunt of it. We were never able to be there for them as much as we wanted to be. I don’t think any of the 4 parents are bad parents, or terrible people. I do think that we all did the best that we could and loved all those kids. But still, there were aspects of our decisions that had to be hard on the kids. Nik’s son, since he was very young, has always been a light in the murkiness. He has always been the person who brings people together, a peacemaker. Half Swede and Half Ojibwe and queer, he has a comfortable ease with his identity. As he becomes an adult, we sometimes worry about his seeming lack of clear direction. But I can’t help but admire the free spirit in him that is still all about making the most of any given situation, putting people at ease, and how he can be in the moment and recognize the largest and tiniest joys in life all around him. Avery loved spending time with his big brother, and it was so nice that they all had several weeks together to bond. I really enjoyed the time with all the kids.
Nik works way too hard, sleeps too little, and takes on too much responsibility at home. So, it was also good to see him slow down and sleep at least 8 hours each night. I saw him get physically healthier before my eyes. Although Nik has support people in our business, he IS the business, and it is a lot of pressure. His blend of being able to teach people where they are at and put people at ease while having all the tech know how to back it up as well as real world experience is extremely rare in our industry. Clients ask for Nik and only Nik a lot, and he is really the only person who can do what he does the way he does it. I can’t do what he does. So, to finally have him be able to have a real break was a gift. And we could do this trip (him taking 5 weeks off! 5 weeks!) because of the many gifts he has and how hard and tirelessly he has worked to make our family and company into a success. I said to him one day, “I don’t think your family gets how much of a catch you are!” And its true. I joke that I am merely “Nik’s wife” because as soon as I mention him to anyone, it’s all about the gushing people do over him. We may not be the beautifulest couple in the world, and we may walk around like awkward blind people, but what I have in Nik is extremely rare and wonderful. And like he said he would, he brought me to Sweden.
Which is why I about lost it altogether in the Stenkyrka Church. Our vows that we did there were nothing extravagant. It was pretty quick actually. Nothing like the wedding that I thought I might have there someday. I think that was why we did not only (quickly) do our vows to each other in that church, but in all the churches we went into, even ruins. (And there are a LOT of churches in Sweden.) In Stenkyrka, though, it was special. I had heard about and seen this church since I was 21 years old. And finally, I was standing there in it with the person I love. We always talked about getting married there. So, to not be able to do it until 31 years later—and to finally be able to do it after 31 years was a mix of happy and sad.
Again, I saw both sides. Here we are! After all we have been through! We are so lucky! I am so lucky! We made it! But also, what would have it been like if we had done this say, 25 years ago? There were so many roads available to others that we wanted to take but were closed to us. If we could have stayed here, where would we be? What would have been gained and lost? Maybe there would have been none of our babies we have now. But who is missing here that we will never know? If we would have stayed on Gotland, would we be successful farmers? Assistive Tech entrepreneurs? Or would we not have developed our American brand, tough nonconformist edge that has gotten us so far? Would my kidneys even be this damaged? Or would they be worse? Would I be dead?
And will I ever be back here again? Will I get to have a 20th anniversary wedding or a 40th? Will Nik walk in here next time, lonely after I am gone and remember this time with sadness? But we made it here now. We made it here now.
On our last day in Gotland, we had very mixed emotions. We had a day of packing and cleaning before catching a flight in the evening, but we had to do one last thing. Nik had already swum in the Baltic Sea, but I had wimped out due to the cold water and the rampant seaweed on the beach. The long dock that Nik jumped off of was scary to me. But I wanted to swim in the Baltic, because I was sick of saying no to things and wanted to say yes. Soon I would be at the airport, and then I was in for over 24 hours of being treated like shit, not being able to hear or see what was going on, searched (I get searched EVERY SINGLE TIME. On the trip home, I got pulled, searched and patted down 4 times). I wanted to do something free.
It was only about 1 block to the swimming dock. As I walked down the same street I had walked down for the past several weeks, it looked like my life. Now I am in a beautiful setting, a treelined road with almost no cars. At the end of the road was the sea. The unknown. I kept putting one foot in front of the other, getting closer to the water, not knowing what is ahead or would be found there. Just water as far as the eye could see. It could give you life and joy. It could kill you.
We walked down the dock and talked about whether we should swim together and decided against it. It was safer to have someone on land. Nik’s and my disabilities sometimes complement each other, sometimes clash. We work with it. Sometimes I am the most disabled, sometimes he is. The other one tries to fill in the pieces. In this case, I was the most disabled. Nik is a stronger swimmer; he is not an anemic woman in kidney failure. He can also hear.
When we got there, Nik jumped in right away. I took one of our white canes and tapped it on the dock every few seconds as a sound cue. The water was very cold, but I watched a swimmer in a wet suit swim back and forth like he was swimming laps at the club in 80 degrees. But I noticed, he too had a spotter on the dock. I thought of my high school and facebook friend, Jay Gallentine, who used to do iron man competitions but now serves as a “swimming angel,” someone who swims in lakes and seas during competitions to help out anyone who gets overtired or panicked. I thought it was kind of cool that I was a swimming angel now, too, in a way. Nik followed my banging cane and came back shortly. And then it was my turn.
I pretty much jumped in without hesitation. My first thought, of course, was “Motherfucker this is cold!” Like, sickly cold. My next thoughts were that even thought I was coming up to the surface, I had no idea where I was or what I would do. It occurred to me that I didn’t know if it was 6 feet or 50 feet deep here. As I reached out for anything, It turned out that I was only about two feet away from the dock, and I immediately got out, shivering to the point where I felt sick and nauseous.
I was shivering uncontrollably. As I had discovered as a Sick Person, my body has a hard time with temperature extremes. It just doesn’t recover like it used to. It can take hours. Great. I was pretty healthy this entire time and now I’ve fucked it up and will be miserable all the way home. So much for my goodbye experience. Kidney disease ruins everything. And then I cried. I cried about this being my last day of freedom and when I got home, I would be in kidney jail, waiting, waiting, waiting not only for someone to die so I could live, but for some bureaucrats who have never met me to sit around in a meeting and decide whether I was worthy of that gift. And I cried for the life maybe Nik and I could have had maybe years ago if there wasn’t immigration, or disability discrimination, or poverty, or lack of health insurance, or families who have no clue about our lives or dead best friends and their mothers or any number of stupid choices we made that when we look back, weren’t really stupid choices at the time, they were the only choices available to us. It was as if Gotland had come to symbolize all the hope and promise in the world and I was being forced to leave it, kicking and screaming. As if I wasn’t still a Sick Person on Gotland and my disease wouldn’t come back to haunt me here eventually. Nik “there thered” me, but what can you do with a shivering sputtering person who is crying over silly illusions, and you have a plane to catch?
“I’m going back in,” he says after we had sat there awhile and pretty much dried off in the soft wind. “But I need you to tap harder this time. I couldn’t hear it very well last time and had no clue where I was. Maybe tap on the ladder handle bars.”
BANG! BANG! BANG! I rammed the cane into the metal handlebars. The thought occurred to me, what would I do if he didn’t come back or needed help? Could I go in and get him? “Could I be a swimming angel for real? I certainly did not have Jay Gallentine’s swimming prowess, vision, or hearing or wet suit. It was probably an illusion, but I needed this illusion so I decided I could. I could and I would. There are many things outside our control, but I am not losing him because I can’t bang hard enough or some shit. I would go save him and I would find my way to the dock or at least shore, because this little ceremonial Baltic swim will not be our demise. I could save him. We are at the same time weak and strong. This, is also a both sides thing. Strength, or how much we have of it, is also much the illusion we make it to be. The truth is, we will make it until we don’t anymore. No one knows when the last time we can save ourselves will be. There is power in the illusion.
He came back ok and we sat in silence for a while. It was a warm morning with a light breeze. There were gulls flying and way off in the distance, a sailboat or two. The good swimmer and his spotter had left and we were alone. It was time to say goodbye to Gotland. Softly, in the depths of my brain, I heard “Lie back and the sea will hold you.” I knew immediately it was from a poem by Philip Booth that someone had given me just after my twins were born and I felt like I was going to drown in blindness and diapers and C section scars and premature babies who wouldn’t eat. Now those babies were nearly 18 years old and I never felt like I was close to drowning again.
Lie back and the sea will hold you.
“I’m going again,” I tell Nik. “And this time I am not going to freak out.”
Let your head be tipped back in the cup of my hand
“Go for it,” Nik says.” I’m here for it, you can do it.”
Gently, and I will hold you.
I jump in. “FUUCK it is cold.”
Look up! Spread your arms wide and look high on the gulls.
I flash panic, but decide I am going to enjoy this. Its freezing, but I am calm and I swim out. With my vision, I can sometimes see the horizon line between sea and sky, but now I couldn’t. I look out onto a bluish void. It feels strange. Like I know the dock isn’t really that far behind me, but I can also convince myself that I am alone in the middle of a vast, cold blue sea. I taste salt water; it’s not as salty as the ocean. I muse about how salt water is bad to drink but can also hold you up. Great. I am now seeing both sides of salt water.
For those who collapse small and hidden will drift into the bottom of their own fear.
What if I am really all alone in a huge sea? I can hear nothing. I see hazy blue wherever I look. Like I have faith that Nik is not too far away, but what if he is not? Or what if he can’t save me?
Lift your breath wide and free in your chest.
I spread out and lay back. I am very aware that I don’t have the ability to hear a cane banging on the docks. I am in this wonderfully cold tactile experience in the outdoors, but also its kind of sensory deprivation. I am deaf and almost blind. I could easily lose my way. I go back to my early blindness skills training. The very first lesson. What do you know? What do you sense? Where is the sun, warm on your face?
Your compass lies not in the dark sea, but the indigo sky!
I rotate around 360 degrees. I try to feel the direction of the current and the sun on my face. The sun is easy. It is so bright in the early morning sky that it blinds me into squinting. I close my eyes it is so painfully bright. In doing that, I can feel it, warm on my face. Such a contrast to the cold water that is so cold I can’t really get a read on the current.
And you will dive and swim soon enough where the tidewater meets the sea.
I try to yell to Nik to get a read on him. If he yelled back, I can’t hear it, but my yell was wimpy, it got caught in the tightness of my shivering throat. Yep. I need to swim into the sun. Towards the dawn of the east. I will either hit the dock or if I miss it, I will hit the shore. The sun is both blinding me and guiding me. I swim towards it.
When you tire of that long thrash to your island, lie up and survive.
I swim but feel like I am traveling nowhere. I tell myself it is an illusion and I keep going. As long as I go toward the sun, I will hit the shore or the dock. Suddenly, the sun is gone to shadow, and I reach out. My hand hits the hard cement of the dock. I feel my way over to the ladder and pull myself up. I shiver, but the warm, sandy cement dock feels good on my feet. Nik and I stand there and warm up while several sea gulls fly in spirals around us. Nik says there must be something dead around us, “Oh, hush up,” I demand, “they are saying goodbye to us, and wishing me well and to come back some day. “ He laughs, but buys in to my illusion.
Sometimes, the only way around fear is through it. Sometimes, the only way to move toward it is to decorate the path with your flowery illusions as you go. Sometimes, the sun and the water both threaten you and save you. Sometimes, you need both the illusion and the reality, you need to believe in the hard reality and the blind faith. When you can’t see and hear, you take what you have in front of you: the warmth of the sun, the taste of the salt water, the smell of the misty air, and you fill in the rest of the space with your illusions. If there is one thing that blind people know how to do more than anyone else, it is to step assuredly yet softly into an unknown future.
Lie back, my child. Let your head
be tipped back in the cup of my hand
gently, and I will hold you. Spread
your arms wide, lie out on the stream
and look high on the gulls. A dead
man’s float is face down. Look up!
Your compass lies not in the dark sea,
but in the indigo sky.
Lift your breath wide and free in your chest.
For those who collapse small and hidden,
Will drift to the bottom of their own fear.
And you will dive
and swim soon enough where this tidewater
ebbs to the sea. My child believe
me, when you tire of the long thrash
to your island, lie up, and survive.
As you float now, where I held you
and let go, remember when fear
cramps your heart what I told you:
lie gently and wide to the light-year
stars. Lie back, and the sea will hold you.
-Philip Booth
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