Tag Archives: invisible disability

A Trip to Helios.

Waiting Room at Helios by Suzanne Forbes August 17 2021We got out of the taxi at the automated parking gate, and the first thing I did was flop down on the grass.

Just outside the city in the North-East, Helios Klinikum Berlin-Buch is sited amid patches of woods, sweet meadows and pretty village streets. We had taken a cab from our home in the Far West on this beautiful summer morning, because using mass transit like normal Berliners would have involved bus, S-Bahn, tram and bus again. Plus the risk of exposure to thousands of people.

I had badly hoped to see some Pferde, but although I saw some paddocks, no horses were out. Nobody was out. In our hour-long cab ride across Berlin and then out into the suburbs, the city appeared deserted. It’s normal for Berlin to be deserted in August, when all the locals go on holiday, but this was different. The lack of British tourists was profound. The only place we saw people was Potsdamer Platz, where a few Americans were photographing the horrible architecture.

The village streets were empty but at Helios hospital, things were moving. There was the usual German hospital complex mix: beautiful old buildings, flat glassy new ones, and doctors and nurses on their smoke breaks outside. As the cab rolled away from the Helios grounds, I took off my face shield, my prescription swim goggles and my outer FFP3 mask, and lay back on the grass. Dandelions, daisies, burdock, gentian, goldenrod, Queen Anne’s lace, all the flowers of high summer in Maine are here in Germany too, and it was so good to see them and smell the cut hay of nearby fields.

The very rainy summer and cool August has left the countryside fluorescently green and vital, everything alive and bright and waving. The mix of fields and town and woods and rivers here is so much like Connecticut, where my mother’s family settled on arriving from Scotland, or Wisconsin, where I spent summers with my godmother. Germany is so fucking beautiful, and feels so much like home, which is always a little confusing.

My husband stood nervously waiting for me, while I looked at the blue sky and thought about the last planes leaving Afghanistan and the pregnant ten year old girls in the Tigray and the burnt islands in Greece. I tried, briefly, to make sense of the German countryside, its buried shell casings and its bucolic splendor. Then I sanitized my hands and my goggles and put everything back on except the face shield (which I use primarily as a windblock in taxis now that we have our goggles) and we walked to the biggest building and went inside.

Of course we had to walk around endless hallways and down long galleries full of unmasked children and chin-maskers while we tried to figure out where we were and how to understand the signs, but the place was well-ventilated, the day was temperate, and we have good PPE. I would have liked a wheelchair, but the walking was bearable. We found an infodesk, and D. got yelled at for wanting to go to a place that was for children. Then, after he explained that he had what the children had, he got yelled at for having the wrong form.

Then we were given permission to go ahead anyway, as is customary if you accept the yelling, and we went to the Warteraum for Kinderchirugie.detail Waiting Room at Helios by Suzanne Forbes August 17 2021

“Du bist meine Muffin,” I said to my husband.

It was the first time I said it in German. I was terrified about the doctor. I had had three nights of endless recurring nightmares, the bad one where we’re trapped in the US and can’t get home to Germany. I was so afraid the doctor would say the same thing all the other American and German doctors have said over the eleven years we’ve been together: “Your condition shouldn’t be causing you pain. Are you sure it’s really happening?”

Medical gaslighting and patient invalidation is a core trauma of disability and while I have had more than D., he has had his share the last few years. I was afraid we were braving the Delta variant and his trauma around hospitals to be told “You’re too old, why didn’t they treat this sooner” or “We can’t help you, the insurance doesn’t cover it” or “You should just try not to eat fried foods”.

We waited about an hour, with a relaxed tween boy seated across from us and then gone, and the occasional screaming, crying, coughing children and parents going by. The single oversized blue LEGO on the play table really was the only toy visible, though there was an empty dollhouse and kid’s books on the shelf.

And then we were called in to see the specialist, who is the protégé of the world-renowned doctor who we were originally going to see before the Covid-19 pandemic started and he retired.

The doctor was the real deal!

Finally, someone who truly knew about my husband’s condition and had no shaming commentary about how nowadays this is treated when someone is a child. He was immediately committed to treatment, and explained that the insurance company would argue because of D’s age, but that he could handle them. It helped, he said, that we had done everything right: seen all the specialists leading up to him, to confirm nothing else could be causing the symptoms. He believed my husband (and me, I’m generally the one who yells, “He’s suffering and he deserves relief!”) about the symptoms. He agreed that D deserved relief from this pain and limitation.

He said, “I see 300-400 patients like you per year. I know what they are experiencing is NOT A FAIRY TALE.”

(emphasis mine, imagine this sweet validation said in Germanic English.) !! WOOHOO!!

Another Big German Surgery for my cyborg hubbie next Spring, God and booster shots and pandemic willing!

I am so grateful to my Patreon Patrons, whose monthly financial support makes it possible for me to continue making art as a Covid-vulnerable disabled person. With your support, I can work from home or safely outside and keep telling the stories of Berlin.

My Fantasy Wheelchair, Part 2!

My Fantasy Wheelchair Version 2 by Suzanne Forbes July 6 2021This is the wheelchair I need for the goth club.

And the picnic in the park, and the life drawing salon in the old mansion with no elevator. Rideable, stair-climbing wheelchairs are an absolutely necessary part of the future.

Probably this one should have a cup holder for the disgusting Red Bull (tastes like carcinogenic Gummi Bears! and I always get the diet kind cause it tastes even worse!) that I like to drink when I draw at a nightclub.

My Fantasy Wheelchair by Suzanne Forbes June 20 2021 detail 1Since it’s Disability Pride Month, I thought I’d share some info on my personal disability sich, at this moment.

Several loved ones have asked, what exactly is my disability deal?

I’m an out disabled person, and you can always ask me about my limitations and conditions. But that applies to me only, just this one disabled person who is me 🙂

Well, official diagnoses: Hashimoto’s disease, asthma, C-PTSD, PTSD, OCD, lifelong severe depression (in total remission the last eight years!!), a rare circadian rhythm disorder called DSPS, “medical obesity” and bum knees. Unofficial: crippling fatigue, dizziness, vertigo and a fair amount of muscular pain, caused by some kind of ME/CFS, fibromyalgia, ME or lupus. Working on that diagnosis situation.

But what really makes my daily life challenging?  Dynamic Disability, a term coined by Brianne Benness on twitter. Benness is also creator of the NEISVoid, a vibrant disability community formed around the NEISVoid hashtag. You can read/hear voices from the Void on NoEndInSight.co. and support Brianne’s Void work on Patreon.

What Dynamic Disability means is that my capacity to function fluctuates.

I have good days and bad days, and sometimes both in batches. On the bad days, I sleep 20 hours. On the good days, I can unload the dishwasher and load the washer, the same day.

And work on art!!!

No matter what my condition is physically, I am fine spiritually and usually pretty good mentally, in the eight years since my remission from depression began.

The disability community has given me a way to understand and accept my limitations.

My Patrons on Patreon have given me a way to work and keep working in ways that are safe and manageable for me. I look forward to increased mobility and support as assistive technology develops. Fantasy wheelchair version one is here.

I’m glad to be alive and happy to be here, Disabled and Proud!

I am incredibly grateful to my Patreon Patrons, whose monthly financial support makes it possible for me to continue making art as a disabled person.