angel
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Confidence of a drag queen! In my job I often have to talk to governmental agents or lawyers or bankers about my clients. Often times represent them in very difficult situations. Be prepared. If you know what you know, then in what voice you say it, or what clothing or what position, is little on the scale of significance. Stephen Hawking had to type out each word with his eyes. His speeches that were not pre-prepared could take hours and hours. Question and answering was slow. Yet people came from all over the world to hear what he had to say in person. We are lucky that our disease actually comes with an intellectual boost. However, who is going to know what we know unless we tell them. I actually think I have more pushback as a woman, then as a disabled person on people believing I know what I know. But maybe that’s just family dynamics and a lot of males in my family. If you are the boss or in charge of your arena and you act respectively as such, as well as make mindful, intelligent and appropriate decisions with foresight, people will follow you as a leader.
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I know this is an older post, but here is too much info. Remember that online dating for everyone is like fire, the greatest thing ever and a very possible nightmare. You have access to people you probably would that have in every day life who have similar interests, ideas and beliefs at your no makeup on, unshaven pajama wearing fingertips (I’m not talking about shaving your fingertips). Adversely no one feels like a person yet, so everyone is disposable, including you to everyone else. I tell my friends without disabilities that it takes 100 online encounters before you might meet someone of substance that you truly want to get to know on a personal or intimate level. I’m guessing the odds are not better . when you mix in a disability. However, it is also a way to be a person before a disability. It is a way to get to know someone, on a personal level without physical limitations. I remember when the Internet was young and message boards were plentiful. Introducing graphics was not an easy task, so people were literally just their words. Age, sex, race and physical descriptions were all just vague unknowns, left for the asking and telling. No, Internet dating is not like that anymore, but it is a chance to be something more than what you see in the first 10 seconds. You probably will not find Mr. or Mrs. Right right away, if ever. Yet dating for everyone is usually not about finding what you want at first, it is about finding what you definitely don’t want. That is why anyone who has ever dated, online or IRL, has a few horror stories. Once you do know what you want, and what you definitely do not want in a partner, it is easier to find someone like that because you have narrowed down the playing field. Like any first date, on your profile put your best traits forward. Maybe this next part is the wrong approach, but it is usually the one I use. I don’t mention a whole lot about my disability until I get to know someone well enough that it is worth the effort of answering the questions they will inevitably want to ask. (And be open and prepared to answer the different levels of questions without embarrassment.) Does this approach mean more rejection from people I might actually be interested in? Yes. It also means that people who might not have considered me as an option, sometimes do. If you are starting out and have a thin skin when it comes to rejection, I would suggest putting much of it out there and those who go beyond the profile are probably open to the idea of a disabled friend or partner. That number will be significantly less, but maybe they are the best of them (or maybe they have a fetish). Either way you find out what you want and what you don’t want. You also are going to be rejected, until you feel bulletproof, you are not done. The Titanium Kroll process of online dating confidence, involves many levels of rejection absorption that is not unique to people with disabilities. But becoming bulletproof allows you to find out what you want in a partner and what you have to offer.
Disclaimer: You can stop reading if you are not really interested in online dating or are an old pro. These are my personal best rules for this topic.
My best rules are:
Cast a wide net. You can always put the fish back in the water if it starts to stink. But you never know what exotic and strange creatures you may come across that are worth at least studying.
Be forward. If you see someone that you like, say something to them. If you find it difficult to know what to say, all you really need is one clever and interesting line (preferably a question) you throughout over and over again.
Don’t feel bad when they don’t reply. You don’t know other people’s lives, maybe they don’t check their mail, maybe they are already flirting with someone else they really like, maybe they’re racist or not even who they say they are and you are not their mark type.
Don’t get too clingy. If you happen to start a good conversation and suddenly they are not responding, give it time and don’t keep messaging. At most you get 2 maybe 3 unreplied to messages before you start sinking into the clingy category. Ladies remember, guys often want what they think they can’t have, don’t be too available. Guys remember, girls like a little bit of mystery, give them something to wonder (positively) about.
Don’t let people get to clingy. Stalking is a real thing. Online stalking is a very common thing. If people pop up in places you do not expect, take a step back. If you wake up to 20 messages from the same person, be wary. Stalking when encouraged often leads to controlling behaviors, in not the best ways. You can be polite but you have to be firm that you are no longer interested.
Be friendly. Sometimes you just make friends. I have a few friends that I almost dated from back in the day and we still talk. Our lives are very different than they were, our friendship is different than it started. But if you are willing to date someone you probably also should be interested in being their friend. Sometimes you don’t get romantic love, but friendship is always a win.
Be careful. Of course you know the basics, don’t give out personal information until you absolutely know someone. And I mean like know their middle names and have actually talked to them. Never give out financial information, never give out money or currency, never sign any contracts. Don’t meet someone by yourself for the first time, or at least always keep it public. Make sure that before you get in a situation where it is just the 2 of you, they are someone who understands no means no and respects your decisions. Don’t give any private pictures to a person who will not delete them if you ask. (I’m pretty sure there are apps for that now).
Don’t repeat the same mistakes. Everybody has a type. You should probably learn what your type is. Then you should learn if that type is good for you. If they are not, tweak your type. Find out what you actually like and what is actually not good for you. Try to keep the 1st part while discarding or replacing the 2nd part. It is not always easy, but it usually leads to making new and interesting mistakes instead of the same old ones. Part 2. If you do something that continuously leads to the parting of ways and that thing is not absolutely necessary, stop doing it! The full disability conversation is necessary. If that’s where things end, such is life. If you keep trying to get them to understand your deep and abiding love for My Little Pony figurines or your World of Warcraft Battle archived videos, and that’s where things end, STOP IT! Please keep that hidden gem of yourself to yourself.
Move on. You had a good thing forming and it ends for some reason. Or you find the perfect person for you, if only they would reply. If you never actually met in person or talked on the phone many times, it is probable that you did not actually know that person very well if at all. People get turned off or uninterested for so many different reasons, most of them have to deal with that person and not you. Asking over and over again what happened, will likely not help you or get answered. Gleam what you can from the interaction or lack thereof and move on. I’m not saying it is never personal, but with online and app dating, it is best not to take it too personally. Because until you actually meet up or have a very extensive long-distance relationship, you might not feel like a real person to them, just an Internet character or persona.
The truth or dare to lie? The Internet is a great place for personas. In fact, if you want to try one on and are ok with the consequences, have at it. Just remember that if you like someone and you tell them any lies, you will one day have to come clean or say goodbye and deal with the feelings and rejection that come on both sides. There are different kinds of websites/apps, with different expectations of reality and truthfulness. If you are going to try on a new persona, find the appropriate place. Always remember that telling the whole truth or any lies will both have some sort consequences.
Have fun. If you’re not having fun, and it seems like a waste of time or an energy drain or an emotional roller coaster that is making you sick, get off the ride. Maybe you change websites/apps, or maybe you take a break altogether for a while. It does not mean you are necessarily giving up on the thought of ever being with someone. Sometimes it just means you need time to digest the information and growth you have acquired. Most of the time you find something right before you are about to give up looking or when you are not looking at all. You can leave your profiles active and not worry about checking them for a while. The goal I have always focused on is having fun and meeting interesting people, everything else is a bonus.
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I know this probably isn’t the popular choice, but audiobooks are my favorite. I can multi-task, listen to the speed I want, which is usually between 1.7 and 2, and give my eyes a break without losing the ability to explore new worlds and intake information. I am an auditory learner, so this works for me. But many people are visually based learners and this option holds little value. However, it is one way to go
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Is your dad aging into Medicare? If not. I would highly suggest that you go on healthcare.gov and look at the Blue Cross Blue Shield options for your family. Because he has a life change, such as retirement or a change in jobs, you don’t have to wait for open enrollment for next year. I don’t know if that’s financially feasible, but it is something to look into.
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Always have the confidence of a drag queen when it comes to knowing who you are and what you need and want. We don’t always know the answers about ourselves and others, but when we find them and are certain, be confident. Humility and gratitude are not the opposite confidence, that is arrogance. People are attracted to and feel safe around those who are self-assured but not cocky.
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Maybe my face is expressive enough, or have an interesting smirk, but usually I just say “I don’t really shake hands.” Usually it makes people feel like idiots for asking. However a smile and “It was great to meet you,” sets them back at ease. There may not be an immense amount of things to be grateful for as a result of Covid, but people’s understanding of not wanting to shake hands or the awareness that not everyone is comfortable with physical contact has definitely increase.
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If you do find something llet us know how it works.
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When I read her first article about the initial health problem I was a bit dismayed. But I guess many of us have had to endure more than one diagnosis. When I was 11, I was diagnosed with stargardt’s disease, chronic kidney stone at 18 and H. pylori at 21. Each one has taken its toll, , but I guess SMA teaches us earlier on how to adapt and overcome. We all have different ways of coping and dealing. I personally pray, and I will for Kala. I know after reading some of her book, that may not be her particular method. But I have found that believing in something bigger than the frailty of our own existence can help put my suffering into perspective. Sometimes crying out to God (with a suction machine close at hand) truly does offer some peace, and occasionally healing. However, I am not above temporary fixes like music, laughter, pain relieving substances, creative endeavors, stimulating encounters and good ol’ entertainment escapism. How do the rest of you cope, find solace and comfort and/or overcome?
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It is a good thing to be small when someone has to pick you up! I do not know how Junior you mean by junior sizes, like preteen (3, 5, 7) or smaller like (10, 12, 14). But being on the petite side myself (5′ 90 lbs). I can still usually find my size in the adult stores (petite section). But they do sell the panels to make your own maternity pants. One great crafty mom I knew just took tube tops and made her own panels. I am sure the right seamstress could hook you up unless someone in your circle can sew. We are not very gifted in the home economics department in my family, more accountants, writers, and engineers. But the good thing about being an accountant is you usually know someone who does what you need. Remember, act like a Chihuahua and never let your size stop you from getting what you need! Sorry my posts are always long!
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I used to wear a waist cincher when I was in my wheelchair for long hours. Even after spinal rod fusion I still have a bit of a curve and it would help me without wearing down my stomach muscles. Honestly, it did not hurt the look of my figure either. Long story short (too late), on my side that still curved in the girdle would try to bend in and flip up. Luckily my mom was a huge fan of shoulder pads in the 80’s and not a fan of throwing anything away. So like someone mentioned previously (small piece of malleable foam), the foam shoulder pad really did the trick. OK, and trick #2, maternity panel pants. If you love bluejeans and leather pants and all the other tight things that make your butt and legs look great but are killer on the waist when sitting down for hours and hours, they really work! It may take a bit of pride swollowing to try the first pair on and you will also want to make sure your shirt is long enough in the front to cover up the material change. But in the long run if it works, nobody else has to know what makes our lives doable and fashionable. You can buy plenty of pretty cute ones already made or a local seamstress can usually alter any pair of pants with the panels. But I would not try your favorite pair of jeans first. That is what thrift stores, and goodwill are for – trying new fashion alterations on the cheap. I hope any of that helps!
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I have broken 9 bones, if you do not count fingers and toes. Mostly ribs actually, sometimes the same rib. (If those driving you do not have excellent records and you wear a tray, bring a pillow.) I have had 4 documented concussions, probably more than that, but after you have had a few you know what to do and what to look out for if something goes wrong. Fortunately, nothing ever went seriously wrong with those. Strangely, the brakes usually had less to do with wheelchairs and transporting, than roughhousing, car accidents and maybe not the best decisions. The toes and fingers are definitely something that you need to be careful with when driving a wheelchair or existing in a wheelchair around people with backpacks at the right level (got to love middle school). When I was growing up, my doctors never really told me that I had brittle bones. So I played with my brothers like I didn’t. We broke my patella, femur and tibia in a transfer/wrestling match involving 2 of my brothers while getting into a van. I was 8; we were on a trip, and my dad was sure that it was just sprained. After moving it around all night (good for sprain, bad for a break), we drove home and it swelled up even more. A quick trip to the ER sent us back to a specialist (in the city from which we had just returned). After another 3 days waiting for the swelling to go down, so they could re-break the bones and set it, I received my cast. It weighed almost as much as I did at the time and it went from hip to toe. It took 3 people to take me to the bathroom, one to hold me, one to hold the cast and one to deal with the clothes. At that point, having older brothers came in very handy. That was a very long 3 months! When I was a teenager, we cracked my ankle trying to pop the front wheels of a rental chair (with no foot rests) up a step. I think it was a three-week cast on that one. Almost out of college, I broke my collarbone during a lift with a bit of a trip and an accidental bodily slam into a very metal potty chair. It was right before Tax Season and 80 hour weeks where no fun! But “you live, you learn, you bleed, you learn, you break, you learn”. Okay, so I added that last one, but I think the original artist would be okay with it. The important thing to remember is if we break we do indeed heal. Healing does not always feel like healing, sometimes it is like hurting. Anyone who has had to do a section treatment or a bronchoscopy or re-break a bone can testify to that point. But as the parent raising a child with SMA, you cannot always or maybe even mostly protect your child from the pain that their life will bring. You can comfort them, you can hold them (at least until they become teenagers and stop letting you… in public), and you can always be there to help them. However, maybe the most important thing you can do is teach them that pain is a message, one that they should listen to, but not one to fear. Being afraid to live (especially at a young age) will cause far more pain than any broken bone. Our bodies need to be pushed, use it or we will lose it. Truthfully, even after using it, we might still lose it, so enjoy it while it lasts. And as a physical therapist once told me, contractures come slowly over time and not from injury but from apathy or focus on other, seemingly more important, things. We will never be normal, our experiences will never be exactly like other people’s and we will always have to work harder to do the basic things that most people do easily. However, that is exactly the reason we should never be afraid do whatever we find worth doing, because who else could ever get that kind of enjoyment out of even the small things?
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I am not twenty-something, I am in my late 30’s. People say I never look my age, which might be a good thing when you have a child’s disease. When I was diagnosed with SMA type I, it was something you died of, not lived with (pardon the dangling participle). So I put off ideas and relationships until my twenties because honestly I had more important things to accomplish. I have had a few relationships now and I wish I could say something to Brianna or maybe my younger self. It is not that I know everything about intimate relationships, I have never been married and none of mine have lasted more than 6 months. But at 16, 18, and even 21 years old, knowing that those relationships were even a possibility might have helped me to be more confident. Because that is a huge part of dating and relationships, being confident! Believe that you have something to offer someone that is just as valuable as what they can offer you. No, we cannot offer the same things that most people bring to the table. However, we can offer something different. SMA comes with an IQ boost, (at least that is what they tell me after they give me my IQ score) as well as hypersensitivity. Both of those things can be incredible attributes in relationships. The brain is the sexiest organ. Imagine it! Most of us have been through a great deal. So using that empathy to understand others and their struggles can be very helpful. There is no Mr or Mrs. Right. We have issues, yes. 90 percent of them are probably physical. So we have to realize that anyone that is going to be able to understand us enough to get close enough to matter is probably going to have issues too. Maybe those issues will be physical (that might actually make things more complicated) but maybe they will not be. Maybe they will be emotional, mental, spiritual… but pain is pain! And pain is probably something that we can understand more than most, so use it. Also, find something for which you share a common passion. Passion can lead to passion. Common interest are what you have with friends. Common passions are what bring people together! I was lucky, I found out that curiosity was my passion. I wanted to learn anything someone could teach me. Music, art, comics, physics, human anatomy… I found people who had a passion for these things and their passion became mine. I had exactly the same romantic ideal as Brianna, someone to look past my physical limitations. But found myself not looking past anyone else’s problems. I am not saying scraped the bottom of the barrel, have standards and have reasonable expectations. Numerically, having a wheelchair, alone, drops us down to a 3 (a drunken equation I hashed out with a few buddies) but intellect, imagination, openness, and confidence (and maybe breasts, sorry guys) can easily get someone to a 5 or 6, depending on how much they have of them. So when looking for a partner, aim accordingly. Again, who am I to tell you about dating or relationships. I am just saying what I would have said to 15-year-old self. Maybe it would have helped. Maybe it would not have changed a thing. So after a very long 1st post, I apologize and accept your gratitude (see confidence). Maybe this will help you, maybe it wont, or maybe you are thinking that I am full of it. Let me know!