Technically ALS symptoms are pain-free. Frustrating and scary. But pain-free. Technically.
Have I mentioned that my balance and stability are not great right now? Because of the symptoms of paralysis in my legs, I feel pretty wobbly and I’m more likely to fall… Like I did seven weeks ago, after being pushed by a six-year-old (I don’t want to talk about the damage to my ego but… a six-year-old! Sigh.) I fell backwards, landed on my butt and then hit my head on the ground. Ouch. Also, keep in mind that I have very little body fat and atrophied muscles that don’t hold my bony structures together as well as they used to.
So, I’ve been in (varying amounts of) pain ever since. Seven weeks.
The worst part at first was my neck and shoulder area. And my osteopath took care of that. I was left with pain in my right SI joint (sacroiliac joint, at the back of the pelvis between the hipbone and the sacrum). And my osteopath did a great job on that as well, but then I sat in a plane for eight hours flying to Montreal and that made everything worse again. Plus, I’ve had a few almost-falls here, so… it’s been difficult. My pelvis feels totally crooked and the pain has been bouncing back and forth between the right and left SI joints. SI joint pain really sucks because the sciatic nerve is in that area as well, so sometimes I get these excruciating neural pains. And when your pelvis is out of alignment, your spine is probably out of alignment, too. And I haven’t been sleeping all that great because I wake up from pain every time I move.
Don’t get me wrong, I’m not screaming in pain all the time. It does get a little better sometimes but I haven’t been completely pain-free in… well, seven weeks.
Pain. Totally sucks. Can really wear a person down. Especially when there’s something else going on as well. I thought (and said) several times in the last couple of weeks: “Paralysis or pain, I can handle one of the two, not both.” But I can, of course. I’m still here, still coping, maybe a little angrier (see previous post…), but overall still positive and optimistic. And quite fascinated by this pain experience. How do I deal with pain?
First, I look to movement. One of my favorite sayings is: “Movement is the answer.” But in this case, it’s not. I tried taking a few yoga classes… wow, was that a bad idea! I tried everything my Pilates mind could come up with, pelvic clock, stretching, massaging… It all just made things worse. Which was disturbing on so many levels.
Then, of course, there’s painkillers. And yes, I took some, go ahead and judge. I just couldn’t handle it anymore. But I’m not a fan of painkillers because they may take the pain away for a while but they don’t really solve the problem, do they?
If I was in Berlin, I’d go for bodywork (osteopathy, acupuncture, craniosacral therapy…) before painkillers, obviously. Specifically, I’d go see my osteopath (obviously). The flip side of having such a great and trusted osteopath is that… well, I tend to think that he’s the only one who can help me. Which is a problem when I’m on vacation. But I’ve recently had a bad experience with a different bodyworker on this SI joint issue, so I really want to be careful. Plus, there was no immediate opportunity for bodywork around here.
Finally, there is spiritual healing and the theory that everyone has the power to heal themselves because all pain and disease is related to emotional issues. I wish! I think emotional work is a very important part of the healing process but to rely solely on that is oversimplifying. It doesn’t do justice to the complex process of pain or disease. A while ago someone suggested to me that bodywork is pretty much the same as painkillers: it may take the pain away but it doesn’t solve the problem because you never address the underlying emotional issues that lead to pain. I disagree. While I definitely have emotional issues, I think in this case it’s quite clear that I’m in pain because I fell. But anyway, I had the opportunity here to work on myself using Reiki, breath and meditation, so I did. It was wonderful and relaxing and inspiring and gave me a lot of clarity but didn’t have any effect on the pain. I guess, it doesn’t work like that but it was still in disappointing. Especially because in that context I often hear stories of people who were able to release their pain because “they were ready”. Does this mean I’m not ready? I feel pretty ready. At least ready to not be in pain anymore. I don’t know. I think being “not ready” is a pretty horrible thing to suggest to someone who is in pain or dealing with a serious health crisis.
Anyway, I’m back in Berlin now, the osteopath appointments are booked and I hope to be pain-free by Christmas. That’s all I want for Christmas, by the way, the ALS symptoms I can deal with later.

Reaction rant

One of the hardest things is telling people what’s going on with me. I totally understand that it’s shocking and I generally cut people a lot of slack when it comes to how they react to these news. However, some reactions are just so fucking awful, that I have to be impolite for a moment.
Two things before I start:
If you’re a friend thinking “I don’t think I said that, did I?” Relax. You probably didn’t. You’re fine.
And if you’re a friend thinking “Oh no, that’s what I said!” Relax. You’re not alone. You’re fine.
And I still love all of you.


My all-time favorite: “If I were you, I would try absolutely everything.”
Actually, any sentence that starts with “If I were you…” is probably not worth finishing because I will have stopped listening. You’re not me. Be thankful. Shut the fuck up.
But the example above is offensive on so many levels: First of all, it seems to assume that I am not already doing my best and “trying everything”. Second of all… Thankfully most people think of these extreme health challenges as theoretical occurrences but… this is my reality. So my question is, on a purely practical level, how does one try absolutely everything? How does one manage, in terms of time, energy and money?
A very dear friend, who I still love very much, had this reaction and then went on to suggest I go see a spiritual healer in Brazil. Now, while I do try to keep an open mind and I do want to “try absolutely everything”, spending a ton of money to go to Brazil to see a spiritual healer go into a trance, become possessed and then cut into my body with an actual scalpel… What can I say, I’m not quite there yet.
Don’t get me wrong, I appreciate getting suggestions. I put them all (including the Brazilian healer guy) on a list and when I feel like the time has come to try something new, I do it.

I also love when people explain to me (sometimes in great detail) how cynical they think it is that I of all people blah blah… And how awful it is that I had to sell my studio… And what a horrible, depressing disease ALS is… Yeah. Thanks. I hadn’t noticed.
As a general rule I’d say, don’t sound more depressed than I do.

And when I do sit down to tell someone about what’s going on, I absolutely love being interrupted. Example: “… and then two years ago I was diagnosed with ALS” “You should get a second opinion!” “Oh. My. God. A second opinion! Can you imagine that in two years I haven’t thought of that?! No? Neither can I. Why don’t you let me finish and then if you still think you’re smarter than me and in five minutes you can come up with something I haven’t thought of in two years, by all means enlighten me.”

So, what are you supposed to do? How are you supposed to react to a health shocker or really any kind of extremely bad news? Well, thankfully I don’t have to come up with that. Susan Silk and Barry Goldman did it for me in the LA Times:

I highly (highly!) recommend reading this article but if you don’t have time to do so, here’s my two cents for talking to someone in a crisis: before saying anything, ask yourself, “Is it helpful? Is it kind?” And if you don’t answer at least one of those questions with a big YES, stay silent. Compassionate speechlessness, I think, is a perfectly acceptable reaction.


I have ALS symptoms.
I have been diagnosed with ALS.
That’s it. Symptoms and a diagnosis, that’s all I will accept and admit to.
I don’t “have” this disease. I’m not going to own that shit.
The end.

Munich – Montreal

I finally made it. I’m at my cousin’s house in Montreal with no appointments and noticeably less stress. One would think that I’d have tons of time to write my blog now… But I’ve been luxuriating in my stresslessness and my cousin has me hooked on “Türkisch für Anfänger”.
But my head is so full of stuff now that I have to get some of it out. So here goes:
I think it’s fair to say that for the most part during this health challenge I’ve been able to stay remarkably calm. And I’ve kept my inexplicable optimism. There are two reasons for that:
For one thing, I absolutely believe that I have these symptoms for a reason. That there is something I’m supposed to learn here. If asked to describe myself in a nutshell, I would say that I’m a figure skater turned dancer turned Pilates instructor from Berlin and I have lived in London, Chicago, Tsuruga and Kobe. And now I get a rare disease that affects movement only?! That’s just too weird. There has to be a reason.
The other thing is that I think there are three big methods out there that are quite promising in dealing with ALS: Traditional Chinese Medicine (TCM), Ayurveda and Integrative Manual Therapy (IMT). And I am going to explore them one after the other or maybe mix them a bit, depending on what feels right.
So now it was time to start exploring IMT. That’s a fairly recent method developed by Dr. Sharon Weiselfish-Giamatteo. There are not a lot of experienced IMT practitioners in Germany. As far as I am aware, there are none in Berlin but some in Munich. And since my flight to Montreal was going through Munich, I decided to add a one day layover to go see an IMT practitioner that a friend of a friend had recommended. So I flew to Munich on Monday afternoon, spent the night at a friend’s house, had my appointment on Tuesday morning, and then went straight back to the airport to fly to Montreal.
Looking back, I don’t know what I was thinking, stressing myself out like that.
But it was worth it because the IMT practitioner was fabulous! Well, she didn’t start out great… by telling me what a horrible disease she thought ALS was and how cases like this were so upsetting to her and her colleagues. Uhm… Sorry to bother you? What am I supposed to say to shit like this? But she got better and it seems that she has some experience dealing with ALS and has had some success in treating it although she has not been able to heal it completely yet. She thought that my case was unusual and that there might be something else going on (which would be great!) because my paralysis symptoms have more spasticity than she has seen in ALS patients. And because my attitude is different: I’m absolutely determined to fight this and I’m convinced that there is a solution. She said usually ALS patients have an attitude of calm acceptance… What?! I cannot even imagine that! So, she basically confirmed a feeling I’ve been having this whole time: that this is not “normal” ALS, that my case is different and will be different. I know that sounds crazy and like denial but whatever… it’s how I feel. She also said that any kind of strengthening exercises (physical therapy) could be counterproductive. I had thought and felt that as well but… didn’t dare give up strengthening. I mean, I have to fight this muscle atrophy crap, right? I’ve been thinking about that a lot. I think she’s right, strength training probably puts more stress on my already stressed out brain to muscle connections. But I still think that movement is the answer (always), so I’m going to focus my training more on body connections and energy flow, with less ambition for pure physical strength or flexibility. She also told me that an increased need for sleep was quite normal, which was reassuring because I’ve been collapsing onto the couch after strenuous activity such as grocery shopping. I’m supposed to sleep a lot and nap whenever I feel like it. Yay! She also treated me a little bit: I was lying on some mats connected to some sort of machine and there was a strobe light… and it made the muscle fasciculations in my arms go away for a while. So I think it’s promising, that there was a reaction in my symptoms. I’ve sent her all my lab results (pages and pages) and she is going to look over them and talk to some colleagues and then make her suggestions how to proceed.
So then I took a cab to the airport because I was really exhausted and I just couldn’t face S-Bahn stairs and stuff with my pretty heavy overnight backpack. I also hadn’t slept well because I hadn’t slept in my own bed, and I hadn’t eaten since breakfast. Like I said, this whole Munich trip wasn’t terribly well thought out. So at the airport, I decided to accept the help Lufthansa offered, and was taken to the plane in a wheelchair and on one of those golf carts. Bit of a blow to my ego but I think it was the right thing to do because I really couldn’t walk very well. And I got to pre-board the plane which was awesome!
The flight was alright and I discovered two things in the in-flight entertainment program:
Annie Hall, what a great movie! And Elementary looks like a pretty cool series.
And then my cousin picked me up and life’s been good.

PS: I’ve been writing this post for three days and I think it’s coming apart at the seams a little bit and I was probably going somewhere else with it. But I’m going to publish it now, just to let you know that I’m still here.