[losmi]

I am sad to hear this Alyssa.

Sending you good vibes! ????????????????✨

[losmi]

as always, I don’t think other people are responsible for my feelings, I am responsible for my feelings.

Do I accept myself as not being good enough professionally? Do I accept myself as not being good enough as a friend? Do I accept myself as a disabled person?

If I do accept myself as a disabled person, I am not going to be hurt by anything that somebody else does, or doesn’t do. Of course, this is not an easy task, this is a process, and actually in this process I would welcome any situation where I get hurt because that shows that I still do not accept myself fully, and I know that more self-work needs to be applied.

This is a general story, whenever there is something I try to get to the bottom of that something, and I think this is pretty close to the bottom of this something… but specifically regarding Olympics, I think the whole idea of Paralympics is unnecessary. The whole point of Olympics is seeing competition of physically most advanced human beings, so like, Paralympics????? I very rarely watch Paralympics, it is usually a random thing for me. I think people went way over their heads for disabled persons to also be able to compete at that level, but now that is not enough, we have more demands? We will always have more demands, we will never be satisfied, because we feel infinitely dissatisfied with ourselves.

Another thing, life is SO hard, for everybody, so I always try to make life easier for people. For instance, if somebody texts me with a question, whether it is a personal or business it doesn’t matter, I always try to answer as fast as I can; in todays world speed is very important, if somebody asks you something usually it will be beneficial to them to get the answer right away. If I need to hop on a call with someone, or meet with someone, I will try to accommodate the time other person wants because I usually have very flexible schedule. Et cetera…

In this context, I am sure it would be much harder for organizers to include disabled people in the ceremony, and I in the first place would never want that.

Oh and by the way when kids look at you at Target – smile to them. Genuinely, warmly, wholeheartedly. They will realize (or start to realize) that even your appearances are starkly different than most of other people you are actually just like everyone else, and they will start developing normal relation toward people with disabilities.

Aaaand another thing, in general I always think it is good when somebody writes something like you just did DeAnn. This is much better than “stewing” on it for days. You have expressed something, maybe you have realized something while formulating your thoughts in a written way, and you gave me a chance to think about this subject and practice my writing, so thank you ????????

[losmi]

yeah I mean these kind of things happen to everybody, it is just part of being a human:) I also did 2 weeks ago very stupid thing that impacted my health (I am too tired to write about that right now), and I was so furious 🙂 But this is like being angry at yourself because you have to eat, you just have to it, every living being has to it, and every living being makes incredibly stupid mistakes.

also, it goes away; every time I do something stupid I am pretty angry with myself, but the point is that it always goes away. So that is comforting to me.

also, I really believe that nothing is just good or bad, so every time something nice happens I am thinking what are the dangerous behind this, and when anything bad happens I am trying to learn something, and in general I believe that this had to happen for some reason.

you can try avoiding thinking about the stupid thing you did (just stop your train of thoughts every time you start thinking at that thing you did, consciously start thinking about something else, or even better watch a movie), but in my experience this strategy is only good for short term effects. Like I can successfully avoid thinking about something for 2 or 3 days, but if effects of my stupidity continue after 3 days there is no chance I am still going to be able to avoid thinking about this.

try breathing it out; focus on the stupidity, bring all the feelings and all of everything in your mind, and then with each exhale start clearing all of this from your body/min, just imagine how it all goes out through your nostrils.

so there are some techniques, but in general I think the way to go is just learning the most out of experience, and knowing that this hunting feeling will stop eventually.

[losmi]

When I communicate with people online I like to write long messages, so I can explain my attitude/stance, so I can be sure (so I can try to be sure) that nobody is offended etc.

I don’t have the time to do that right now, but I just wanted to say that I agree with what Lupa said.

It seems that people suffer so much from SMA (which is understandable, I know I do) that they can’t deal with it, and then they start lying to themselves and rest of the world how SMA is actually not a bad thing, how it should not even be called a disease and so on.

This is very sad.

There is one thing I disagree with Lupa with: this is not just in recent articles, this trend exists for quite a few years now, and unfortunately we are probably going to continue in this direction and this crazy lie is going to become the standard, and I fear nothing good comes out of collective lying, collective delusionment (I am pretty sure “delusionment” is not a real word :).

[losmi]

Nice, congrats Alyssa!

[losmi]

So if you are not worried about Covid, what is actually happening?

I don’t have anxiety but every contact definitely affects me more. Like if I go to the office and have just some little chit-chat I can think about that for the rest of the day. What did I say, how did I say it, what was my body language – and the same thing for persons I was interacting with. I have completely grown out of face to face live interaction, so every time it happens it is something I can ponder about for days 😀

Also, I tend to say much more than I planned and maybe even a bit more personal things than I wanted. I literally lost some of the skills, it is so funny 😀

So I would not say it is anxiety, as you said I am still entering only in contacts that I hope are more less safe so I can really concentrate on interacting with people, but it definitely feels weirder than pre-Covid 🙂

[losmi]

Hello Crystal, another great topic started by you, and I am gladly going to contribute to it, so thank you!

Before I start ranting, let me first say that I think that this is not an easy topic 🙂 It’s one of the most profound questions in life – how can I accept myself for what I am? This question plagues healthy people as well as us disabled, but (fortunately or unfortunately) I think we disabled get to ask it earlier than most of other people.

I think your approach to this problem is perfect. You have this situation that is terrible bothering you, but you are not lying yourself about it, you are not lying anyone else, and you decided to talk openly about it and look for other people’s opinion. I think this approach is right on the money, and that you will be just fine.

What do I mean by “just fine”? I think you will come to realization that maybe there is not much reason to love your body, but there is also not much reason to hate it:)

As I see it you are still very young and of course you are not satisfied with your body. I don’t think there ever lived a single soul on this planet that didn’t have a phase where they hated their body; of course, for us with SMA this is extremely amplified. So honestly, why would we love our body? It is not just that is not pretty (to say the least), it is also preventing us to live our lives the way most other people can!

Then again, it’s not like our body decided to be this way. It didn’t wake up one day and say “Hey, I’m going to make life miserable for this owner of mine”. It is as if you would have some old, rusty, half painted car that breaks down every second. I mean maybe you can’t love it, but why would you hate it? It has nothing against you, it has no will of its own:)

So, regarding your body, I think it is perfectly fine that you are not happy with it, but really there is no point in hating so much. As a matter of fact, you described this hate as a really really strong feeling, and it probably only results in actually hurting your body even more. Too much of a stress hormone is not good for your mind or for your body, so it would be nice if you could stop feeling it so intensely.

It could be an interesting practice if you could “detach yourself from yourself” in these situations. When you are shaking with anger maybe you can try out of curiosity to see which part of your body shakes the most. It’s probably not the same in whole body. Which part shakes the least? What is happening with your breathing in these situations? Your breathing is probably more shallow than usual, or faster than usual, or both. Try taking control of your breathing, make it more “normal” and see if that helps to calm down the whole body.

In general, as I said, I think you are seeing everything clearly and I think you will come to a more balanced place when it comes to relationship with your body, and that place is – it is what it is, I will try aid my body as much as I can.

Regarding the question of “How am I supposed to love myself like this?” – I am sure you heard this many times – you are not only your body!:) That is why I think we are so lucky, our bodies are shitty, but we are sane people. I have immeasurable empathy for truly insane people; I have unfortunate of having some in my family, and I can tell you that is probably the worst thing in the world. They basically have no “fighting chance”, they are left to the mercy of their illness… but we are not! We get to ask the kind of questions you are asking; we get to think about them, research them, talk to others about them, reach some kind of a decision and act on it. What I am trying to say, we are so much more than our bodies, we can make people happy, we can make ourselves happy, there is no reason to focus only on our failing bodies and not love ourselves because of it.

The main point is (at least for me) how do I judge myself as a human being? I really won’t dislike myself just because my body is faulty, I don’t think that this is logically right, and I don’t feel that this is right. I constantly work on myself and this truly I love about myself. I am not a saint, but I am always thinking about what does a good human being does, and I try do it. I really think that in this we are not different from healthy people.

Of course, I have different standard for myself than I have for someone who is healthy. If you are healthy, I really think you should try to be of service to other people and/or animals and/or plants around you. On the other hand, I am not really in a position to be of service to many living beings, but I can try to have better relationship with my parents. There were some things that we would often fight about, so I decided to try figuring out what is exactly happening, can we not have these arguments over and over again? If we somehow figure it out, I find that to be great a victory. Also, I try to figure out how can I ease some of the things they need to do for me… so something like that. Maybe I can’t do much because of my body, but there are certainly things I can do and I will judge myself by these, and not by my body.

That’s it from me. Once again, thank you for inspiring me to get on this “little” rant????

 

P.S.

Yes, English is not my first language so this text feels a bit messy, but I am tired, this is the best I can do now 😀

[losmi]

OMG, the big spider thing sounds absolutely terrifying! I guess it can be very discomforting to see something that you know for sure is not real and can’t be in your room, but to not be able to jump up and get away (just in case) from freaking giant spider… horrible situation.

[losmi]

That is pathetic, but it is perfect paradigm for what kind of world we are living in.

On the other hand I think that this situation should be the topic of your next column. It’s brilliant, and you can scale it up or down, but I would probably scale it up. Do some research on other corporate campaigns like this, if some had some real impact or was it also just publicity stunt. What is dissability community doing, did decades long insisting on some words really give us any kind of benefit when corporations still act like this? Nike is very PC corporation, but this shows how much they really care.

But even from businesses side this is wierd, Instead of actively seeking promoters in disability community (exactly people who can give some early review of the product) Nike devises this moronic scheme:D It’s brilliant.

[losmi]

great news DeAnn, fingers crossed that evrything goes well!! It is so nice that after this nightmarish year you will actually be able to start 2021 with new hope:)

[losmi]

I am complete oposite:)

I like going to bed around 9 or 10 pm, and getting up between 5 and 6 am.

Few months ago on a podcast on productavity I heard a guy say something like ” I get up around 6 – 6:30 am, but I guess everybody is different” ; than the woman replied “I know quite a few people who thought they are not morning person but than it turned out they are, on the contrary I am not sure if I know anybody who realized they need to get up later . ”

Over the last 20 years I experimented a lot with sleeping routine, and I am very grateful pandemic enabled me to finally push back to this very early going to bad/getting up. Hopefully the pandemic will stop and I will still be able to maintain this:)

Changing sleeping routine is definitely not easy, it should be done with certain tactics, but if you want to be more efficent and you don’t care so much about night-life I think it is worth it.

[losmi]

wow this is interesting… but in your case since Spinraza enabled you to keep living independently I think the answer is clear, Spinraza over money.

At least this how I see the world, I don’t think happiness, pleasures, comfort etc.  are the most important things in life; I think we are here to learn, work, give love (if we succeed in understanding what love is)… so in order to remain in the best possible position to do that I think it is extremely important for a person to live independently. It is very important just because you are pressured to learn more about how everyday life actually works, but also because you learn so much about yourself when parents or someone else like that is not around.

As for the people who are not in situation like you I think money or drugs would be a serious dilemma.

BTW, if I understood correctly $330,000 is only a starting point of Evrysdi cost, final price is going to be higher than that:)

[losmi]

The last picture is absolutelly brilliant!

Your enthusiastic smiled face and her doubtfull but opening position in the background, it is like a metaphor for the whole situation.

I love it!

[losmi]

Alyssa do you know what got you interested in this topic?

If the answer yes, have you tried probing behind that conscious reason? Probing behind it meaning is that the REAL reason?

Since you say you went down a rabbit hole last night I think prior to continuing down the whole very good thing would be to answer above questions.

You say this thought randomly popped inside your head, which is probably not true – as you say you are researching various disability-related topics so something prompted that thought. But if we leave that aside, why are you now genuinely curious about that?

From lexico.com, which uses Oxford English Dictionary

https://www.lexico.com/definition/disability

<span class=”ind”>1. A physical or mental condition that limits a person’s movements, senses, or activities.</span>
<div class=”exg”>
<div class=”ex”>‘children with severe physical disabilities’</div>
<div>

<span class=”ind”>2. A disadvantage or handicap, especially one imposed or recognized by the law.</span>
<div class=”exg”>
<div class=”ex”>‘the plaintiff was under a disability’</div>
</div>
</div>
</div>

[losmi]

Alyssa The Marvelous Mrs. Maisel is created by the same person who created Gilmore Girls – Amy Sherman- Palladino! 😀

I watched Gilmore Girls long time ago, but I think Mrs. Maisel is a bit less girly and more funny 🙂

[losmi]

Exactly my sentiment Alyssa; and not just social media, I avoid any news related media.

For me it is not only about people taking this situation too lightly, I get mad when I realize that an official is blatantly lying in to a camera, or when I realize that someone is far too incompetent for the position he/she is holding… so I stay up to date on what is happening but not so much on daily basis. I check in from time to time, but more often I just find out what is happening from other people.

As far as I am concerned I do everything that is in my power to protect myself and others, and when you do that I guess there is nothing more that you can do, and following doomsday-like news every day is not going to help.

When all of this started I re-discovered the power of comedy 🙂 To be more precise, I watched all 3 seasons of The Marvelous Mrs. Maisel – it streams on Amazon and it is maybe a bit girly but I don’t discriminate like that, if something is of good quality than that is all there is to it. It really helped me in the beginning, my anxiety levels were up quite a bit and watching the show really helped me to get back to my normal self.

I always like watching a good drama so whenever I have some time I watch something heavy and I literally forgot how therapeutic comedy can be; I have now adopted comedy therapy in my life and as soon as I see that my mood is going down I know it is time to watch a bit of comedy every day:)

[losmi]

our conscious mind is often not enough when we need to make important decisions. One way of listening to unconscious part of our being is paying attention to our dreams. When you go to bed you can pray to God, or Gods, or Universe, or simply make a strong decision that you will remember your dreams in the morning, and that you will try to find answers there. If it fails repeat, and than again…

Either way I wish you all the luck in future treatmants!

[losmi]

guys please have in mind that a person can be contagious with up to 14 days without any symptoms (they can feel perfectly fine), and also the virus can survive on surfaces for days (much longer than other viruses). Please think again about receiving any kind of guests, and do disinfect anything that enters your house.

This may sound tiresome, but just take a look at what is happening in Italy…

[losmi]

DeAnn I am so sorry for what happened, and the way it happened.

I don’t have kids, and don’t plan on having them, but I had experienced loss of animals that I had a privilege to share life with and it is very painful.

I do believe in reincarnation and since Roy spent his life in more meaningful way then most humans I really hope he will get exquisite next birth.

All the best to you

[losmi]

Nicely wrote column Kevin, lots of humor, but ”Lexington, Kentucky” line was the best one for me:D Is Lexington, Kentucky really notorious for accessibility, or is it like generally one should not expect many accessible sites in Kentucky state? Whatever the reason is, I like how the whole sentence sounds.

So as I said I like the humor, but it is really kind of text that shows how much trouble people with SMA have to go through every single day.

[losmi]

I have no access to Spinraza and it is not likely that I will have it any time soon, so these are all new information for me – surprisingly unfortunate information. For the amount they are charging for Spinraza they should organize a charter helicopter to each and every patient.