When One Door Closes Another Opens: Adapting to Disability

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I am a big believer in doing rather than talking about doing. When opportunities come up take them because you don’t know where they may lead, Do everything and anything you want to do because you only get one life. These things may seem cliché to some, and indeed they are but in many ways, I find, they ring true. School, work, sports just to name a few, I think it was once thought by someone that I would never get past high school – I’ll have you know I have a BA, people also saw I would never get a “worthwhile” job, I have and job and, so you know, I like my job, and sports well when I was younger I played street hockey with the best of them.  Now when someone says you can’t I say just watch me.

Not to say that I haven’t had my share of difficulties, and or, had to adapt my activities to my comfort and skill level, but there was and is always away. I was once told I shouldn’t be an acting class because it was too physical, I did it anyway. Or even simpler things, like climbing down a rock, I can do it, and I know I can do it it really miss conceptions of everyone and I deal with. My friends and family members are often more scared than I am. There are things that I haven’t been able to do because of my limitations, but that should not be the end-all and be-all – making limitations work for us what ever they may be is the skill we all need to master. If we could all do that think of how much easier life would become.

I’m about to turn 25. Yes 25! And I have decided that I am going to go parachuting, I know there are some that think that it’s a bad idea including my mum. I know I may have to change a few things, but , I find, sometimes, taking the path less traveled is more fun anyway

When Breakfast becomes a challenge you know it’s Monday  #LivingMyCPLife

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I went to an appointment today and I got up with plenty of time to get ready to leave and yet I always find myself rushing out the door. I got to my appointment almost an hour early – as per usual – thankfully there was a coffee shop nearby. Easy right? Go get coffee maybe a muffin and I’m on my way. Well, today, apparently not so easy. I got in got my coffee and muffin but then I realized I was carrying not only my bag but another folder. OMG that coffee was hot. I could barely get out The door, but I got back to the building, somehow I don’t know how. I was able to  miraculously find a seat so I could have my breakfast. Ordeal over right, not quite, I know you had to get my coffee and myself up to my appointment. Thankfully there wasn’t an elevator. But I was in flip-flops. Long story short, I was able to get into the elevator and slowly shuffle my way to my appointment, without feeling any coffee! i’m almost home free, I got in the door and went to throw something in the garbage when I knocked my hand against my coffee and… Spill! Thankfully I was able to catch my balance so I didn’t fall too, and it wasn’t a bad spill. By the time I actually got into my appointment my Monday was shaping up like a sitcom. Between the people, the coffee, my balance, and the weather I could have my own reality series. And on top of it all this was posted to Twitter:

Mindy Tucker @MindyTucker

“When you’re sitting waiting for an appointment and you realize you left your ear buds and battery pack in your other bag! #Monday”

– Got a love MyCPLife

Changes to this blog

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Hi, everyone, I been away for what seems like forever– I miss you guys. the recovery from my hip/leg surgery was a little more involved than I thought and didn’t believe me with much energy for any of my social media platforms. But, I’m back now and I think I have come up with a way I can be more present on this blog. from this point forward all blog posts that have a corresponding video on YouTube will be located in the YouTube Channel tab, in the upper menu bar, in a drop down menu titled video blog posts. This will allow me to try and post daily on the main page. Little things that happened to me (Funny, scary, interesting etc.) relating to #MyCPLife.

I feel like this will give you a better insight into my daily struggles, achievements, life in general and will allow me to post more often, I will also try and post any photos I take that day. Photo’s can also be found on my Instagram, located on the right side of the page

I hope you like this new format, I think it will work much better for me and I’m excited to get started.

Spoon Theory and Me

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As a person with a disability sometimes I need help to do things. This is a fact I fully admit to. Getting people to understand this without them going overboard, and either talking to my like a child, or ignoring my disability all together, is a constant dance, I find myself doing – and this jig is getting old. How is it to hard for people to understand, I can walk, bend, and lift. I can be helpful. Then there are times when I need a hand up a step, or WILL NOT go down escalators. The people I’m with, if anybody, are usually understanding, but sometimes are less than helpful. Telling me “you can go it” or “you were okay yesterday”.

Enter the spoon theory, this basically states, every person has an energy level made of a certain amount of spoons (this amount is different for everyone.)  In this example let’ say “able-bodied” people have 24 spoons to get through an average day. But, for those of us with disabilities or chronic illnesses that number may be 20. Maybe the average person uses up 12 of their 24 spoons at work, while I may use up 13 of my 20 spoons at work. Maybe I use 4 spoons to get up, make my bed, get dressed and get breakfast. Where an able –bodied person uses 2 of their 24 spoons to do the exact same routine. teaspoon-554065_1280By the time I get home I may have 3 spoons left, just enough for me to have dinner and get some other things done. If a friend asks me to go out I may be able to but I may have to borrow spoons from the next day to do so. This may mean I may need to spend part of another day recovering from my night out. If you are confused by my explanation of the “Spoon Theory” here is a better one.

The Spoon Theory written by Christine Miserandino

I have people in my life who understand Mindy with spoons. I have people in my life who understand Mindy without spoons. Very few people understand both. This gets frustrating because many times I can have days where I’m “basically normal” for part of the day and “showing my CP” the rest of that day. I can see how that might be different to people who are used to seeing me a certain way but I don’t understand why they feel they need to treat me differently. I’m the one, if anyone, who could or should get frustrated. Why should a person’s attitudes change if they know me? I then I have to go into education mode, and prove to people, show people that I can do things, and the dance continues at least until I get a few more peaces cutlery.

Hiring a person with a Disability: My expearence Then & Now

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About a year ago I posted a video about summer jobs with a disability. If you would like to watch it see the link below.

Although, all of those points still stand true and I stand by what I said in that video completely, over the past year I have gained so additional knowledge and experience I feel I need to share. I may have made it seem simple in my video, there is only so much you can say in 5-7 minutes, and of course something like employment would vary from state to state, province to province. What may be more common though is the position a person is put in after education weather they have a disability or not.

I personally have a student job. How do I have a student job now, I took a few classes through the term, so I could keep my job. I have tried looking for other job, and even got a few interviews but nothing yet. So, send out more resumes, look for more job postings and pray that a hiring manager can see past the walker, wheelchair, and or my accommodation needs. In a way I can compare it to when you’re born with, or acquire a disability as a child there are services out there for you and when you turn 18 suddenly you’re on your own. This is the same type of situation, I and I’m sure many others, currently find themselves in. job searching was something I never liked but we all have to do it. Now I just hope I can find one before my current job ends. I really don’t want to be depending on the government. I know I have the skills and experience and education to work.  You would think after completing a Collage or University degree employment opportunities would increase; in my case, I think my biggest challenge will be trying to breakdown the attitudes and misconceptions people have about disability and work, and showing employers that, yes in fact I can do things.

That said I can see why employers might be apprehensive at first about hiring me but all I want is a chance to show them what I can do, how I can adapt things, and most importantly how I can be an asset to their company. I think it’s strange, in 2015 when the world has come such a long way in so many other things, hiring a person with a disability still seems like an uphill battle. By no means am I being critical of the job market, I realize it’s tough for everyone out there, and the market is oversaturated with many very qualified candidates. I see why employers would want / need to hire able –bodied people. I most definitely am not saying Persons with disabilities should now be working, on the contrary, I want to work, I have always wanted to be the same as everyone else and I still want to be treated that way. I would just like to see some more understanding and education from and for employers and a chance for those of us with disabilities to be considered in the mainstream job market

How a Corrgo Net Changed My Life, Disability, and how I view Exercise with Cerebral Palsy

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This was a last minute vlog that turned out to be Awesome.  I know it doesn’t really go with my “Life with a disability series ” – which will be back next week but we don’t get many nice Spring/Summer days here so when we do. My friends and I like to take full advantage of them at the park, or doing something outside. When I saw this cargo net I couldn’t pass up the challenge. the last time I saw  on of these I was in elementary school school  and I couldn’t do it then.  This time not only did I climb it but I climbed it  backwards and in flip-flops. It wasn’t nearly as hard as I thought it was going to be. I’m thunking I’ll try indoor rock climbing next. I now realize I can’t be in a conventional gym, I need to make my workouts fun. If you have any suggestions for”fun workouts” please leave them in the comments or find me in social media I love to know. My confidence is through the roof right now! For the first time, in a very long time, when I see you challenge I don’t see my disability getting in the way. If you like these types of posts tell me in the comments and I would be glad to make more.   What do you like to do at the park, or on summer days?

*Note* There should be one more post this week before Sunday when the next video in my ” Life with a disability” series will go up.

Mobility aids & CP: My Story & Tips for Dealing with New Equipment

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This is my second video in my “Living with a Disability” series. I have put together a video about Mobility aids and CP. By no means am I trying to brag by posting this video. Mobility aids have been a part of my life for a long lime. I’ve always gotten questions about them, from friends, family and others. If you have any information about mobility aids that I didn’t talk about please feel free to post it below.

Mobility aids are very individualized, even though they may look the same. Something that I use in one way another person may use in a different way. For that reason what works for me may not work for you. Many people with disabilities may have all or some of what I have (Walker, wheelchair, crutches, scooter).

scooter I recognize this many mobility aims me seem excessive to people. In my case it took me a while to figure out what really worked for me; and like a lot of people you don’t know that until you use a mobility aid in real life situations, on your good days and your bad days.walker done but here’s how I look at it, when I’m using mobility aid it becomes an extension of me to help me do. Just like a person may have several pairs of shoes for different occasions, or, different tools for different jobs they do around the house, or in their profession, I have tools of a different sort. WheelchairSince my disability to change days season to season -sometimes even day to day – The knees that I have also changed so for me it’s nice to have options. Some people can have one mobility aid all year around – I wish I was one of those people. If you are somebody who exclusively uses crutches or a walker or is completely ambulatory at the moment I hope you stay that way because having several different mobility aids can also be a pain when it comes to transportation the accessibility of buildings and many other aspects of life. On the flipside, if your mobility does change don’t be afraid to try a new been at the age. Crutches
Always ask your doctor, to patients are pissed, physiotherapist to get their sought and opinion because they know you best. If you do end up getting a new mobility aid know that it will take some time to get used to but that doesn’t mean you won’t get used to it. Also don’t be afraid to personalize it I’ve painted my walker and even given my different mobility aids names. Says more about me than anything I’m sure. My point is, if you personalize it and make it your own it will, at least in my experience becomes easier to accept. Use your equipment to make a statement, go against  disability norms, make it you. You are not your disability. You are more than your equipment. The equipment is there to help You be the person You want to be.

Everybody Wins: My Middle School Experience with Cerebral Palsy

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Everybody Wins

Last night my cat Jackson broke one of my awards. I was sitting in bed watching TV and I heard the dreaded crash. I walked out of my bedroom, into my study to find my aptly named “Yes I can award” broken on the floor. After yelling at him and cleaning up I held my “award”- now in three parts in my hands. I thought back to middle/high school days( grade 9) – Oh with those teenage years. When everybody wants to fit in and anything or anybody that is different is outlawed. I was never the smartest, In fact I had a TA (Teacher’s assistant) with me for a good chunk of the day. I had friends but I wasn’t by any means popular. I was always presentable, but never really in fashion – Oh and – I had the worst case of acne in my grade! On top of all that I had Cerebral Palsy. I was stuck in the middle of the perfect storm. But that’s for another day.Middle school picture of Mindy

My school and family were very competitive, we still live to this day,  I’ve learnt to embrace it. I have become pretty competitive myself in my own way. Back then though, we can track and field day. My siblings would come home with metals and ribbons, I would always come home with nothing. This was fine I told myself, gym of all things was never my forte; and because I had CP I was never going to win against all these able-bodied people anyway. One of my TA’s, in grade 8, was even nice enough to make me a certificate, since I was saying  it wasn’t fair people got ribbons. Everyone should get something for participating. A gesture like that was so nice of her, and yet, in my grade 8 head I felt singled out and “special.” “ She only did this because I said that” I told myself – it’s not even in colur. By grade 9 I hated the track meet and only participated in it to get out of classes.To be fair,  I didn’t hate everything about it, I liked everything except the events.

My school also had awards day which took place in the morning of the last day of school. The whole school would gather the gym, and class by class, awards would be given out. Awards for, the most improved, the highest average, and the highest GPA over all. Every year I sat in anticipation… and got nothing. That was okay though, because when I got home my sister would always have one, and I would get to congratulate her. While dying inside, punishing myself, saying I got decent marks, maybe there’s been a mistake, it’s all rigged anyway.Aword 2 Until one year when my resource teacher asked me if I had ever been nominated for a “Yes I Can” award. When I told her I didn’t even know what that was she got started on the paper work.

Fast forward a few months, and I was sitting at a banquette table waiting to receive my award – when people at school were given awards they didn’t get a banquette too. I was on top of the moon! The award ceremony started and it became clear that there wasn’t one recipient per category, but several – at least at the provincial level. It was only once someone got to the national level that they would become the only recipient in their category. Again I was one of many, but this time I wasn’t an outcast, on the contrary, everyone had disabilities. It was a night I will never forget my parents were so proud, some of my friends were there, even my brother and sister had to come.

This morning in bed as I was going over what happened last night, how it happened, what could’ve been done to prevent it, when I realized it’s not about the award it self. The award is a symbol, it’s about what happens afterword. The confidence that award gives you. I’m not saying that because of that award I went to university, graduated high school, or started a YouTube channel. But, on that night, in that moment, I was on top of the moon, more than that, I felt the same; jugged like all these other kids, over coming some of the same obstacles as all these other kids, and deserving like all these other kids.

So what. Jackson broke the symbol of what I had accomplished at that point in my life.
JacksonThinking back on those years, and what they bring up for me, I can’t believe I didn’t brake it myself. I don’t need to be reminded of ridicule, sadness, and being thought of as an outcast, when I would go on to accomplish so much more. I don’t need an award to tell me “Yes I Can”. I epitomize Yes I can.

Quadding With Cerebral Palsy: Surgery may be Required

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This is the kick off video for my Living with a disability series. In this series I will be talking about:

  • Past surgeries I have had
  • The different equipment I use on a daily basis
  • How to use a walker effectively
  • Home help
  • Dealing with attendants

This video series will be posted on YouTube as well as here on my blog.

If you have any other topics you would like me to talk about or do a video on please let me know either through my versus forms of social media or my contact me page and I will put them on my list of future videos, I will need a few ideas of videos to do after my surgery.

This may seem very superficial to some, but I have been struggling with this “lump” as I call it for a year and a half and I feel it has truly affected my life. I can’t role over or sleep comfortably, my balance and right hip have had to compensate for the “lump”

Lump on my left side, and on top of it all, my clothes don’t fit right. With all this in mind, my doctors, parents, and I agreed that surgery was the right thing to do.

I did not go into this lightly; I know that there is a risk that I could come out with a “lump” that is worse than the one I have now.How people see my "Lump" If that happens, I will fully accept the consequences of my decision. I have been told that my left hip/leg will never look exactly the same as my right hip/leg and I am okay with that. After all, perfection is relative. I will be happy with a little less pain and – here’s hoping – a little more mobility.