Being Disabled Isn’t Sad

Walking that Sunday afternoon clutching the arm of a friend as my legs felt especially wobbly and the brain fog was in full force we were approached by an elderly woman. She asked me how I got injured and as we answered in unison “no its permanent” she responded with a sorrowful realisation. As we parted with the woman my friend mentioned how she can see why that would be frustrating.

That was the third time I was approached that day.

A few days prior I was at a shoe store picking out a new pair of converse. I had just picked up my new hinged AFO which meant new shoes and I was excited. As I was trying on my shoes an employee asked what happened. As I explained that I have a drop foot I was bombarded with a thousand questions and “I’m so sorry, sweetie.”

I just wanted a size 6.

Before I became disabled I didn’t see that being disabled or sick is not the worst thing that can happen to a person, especially a young and vibrant teenager.

As a society, we put a lot of our worth into our bodies, whether that is trying the latest diet or makeup trend or as deeply engrained as how our legs function. While I fully see that I am not any less of a person because of my long list of diagnosis’ that does not mean that others do too.

What I think is often missed is that my inability to run or jump in no way means that my life is lacking. It doesn’t rob my joy because my joy does not come from my physical being. I am filled with the joy of The Lord and that is sufficient for me.

I am an athlete, a sister, a friend, and those should mean so much more then the limitations on my body.

But to most they don’t.

I don’t blame you for thinking this way. Most of us never get the chance to see the world through a new light.

Please don’t interrupt my day to stare or express your Pity.

I challenge you to change the way you view differences. As simply that, something unlike you but not tragic or heartbreaking. I am not a tragedy and you shouldn’t feel sorry for me; I certainly don’t.

My life is far more beautiful  then I could have ever imagined.

 

 

 

 

 

 

 

 

 

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This Is Not A Public Service Announcment

Chronic illness is sleeping with a pharmacy worth of pills that you can pop if things go downhill.

Chronic illness is being stuck in bed for days on end.

Chronic illness is having your family rework their lives to make sure you are okay, constantly serving your needs.

Chronic illness is your mum driving all over town getting you food you think you can stomach.

Chronic illness is exhausting for everyone involved.

Chronic illness is isolating yourself so that others don’t worry.

Chronic illness is feeling isolated by your inactivity.

Chronic illness is watching the world pass by, feeling trapped by your own body.

Chronic illness isn’t glamourous. It isn’t a PSA. Chronic illness is gut wrenching  and hidden from the world.

Chronic illness is only making it a few steps past your bedroom door before collapsing from pain and frailty — trying to make it back to bed like a baby sea turtle rushes to the sea.

Tears streaming.

Chronic illness is knowing there is nothing anyone can do.

So you sit, you wait, and you contemplate everything.

Above all, it’s knowing that something good will come from this — The joy that is coming cannot compare to the pain in this moment.

 

 

Choosing To Sit Down

Since I got sick, getting me to function normally has been a priority. I have spent years trying to gain independence. I  have learnt to walk more then once and while my legs aren’t my best attribute they are ones I am very proud of. I am proud that each and everyday I stand up and put my best foot forward.

I’m 18 and I wish this wasn’t a choice I had to make.

I wish this didn’t feel like a failure. I now see that putting the amount of worth I did in my ability to walk, even one that is  based out of pride, is damaging to someone with lowering physical abilities. It feels as though everything I have always strived for I am loosing. So much of who I am was comprised of  the girl who learnt to walk so many times and despite everything stood back up.

I’m choosing to sit down.

I’m choosing to see that being able to do more with my life, a higher quality of life, outweighs the expectations I put on myself. I choose to get an AFO years ago for the same reason. I choose a handicap placard.

I know that if I want the chance to be independent, which I do, I need assistance. I know that going to University has been something people have believed is out of my capabilities but I got into every school I applied for. I am smart and capable. My body isn’t quite as capable. My body is atrophying, chronically fatigued, and unbalanced. Life has been doable with people to support me but getting around a campus on my own isn’t going to work unless I lessen the burden on my body.

I am really struggling with the stigma. I don’t want to be a girl in a wheelchair. I don’t want to be separated, and potentially isolated. I don’t see myself sitting, in my mind I am running free in fields of wildflowers. I guess my expectations for myself have never lowered and I haven’t yet decided if that is a good thing.

I know that so many people are disappointed that this is a choice I am making. I know those in my prior medical team would not be okay with this. This isn’t he first choice ive made that would make them feel that way.

I hate that I am seeing this as a negative,  but I don’t feel good about this. I don’t understand God’s plan right now and I’m trying to be okay with this confusion; That not understanding His plan is not the same as not knowing that there is a plan.

So I will start the process of getting fitted and working with Occupational Therapy.

Sometimes chronic illness isn’t a series of rosses sometimes its tearstained pillows and disappointment.

 

 

Two Years

I was given two years to live.

You know that it probably isn’t a great sign when the specialist you are waiting to see tells you that if you don’t get onto a shorter wait list, you won’t live to get to meet them.

I’ve made it a year and this is what I have to say;

  1. When someone puts a limit on your life it does effect the way you choose to live it.
  2. You will want to make choices out of fear of the unknown but those make out of love are so much more valuable.
  3. you will find your people. You will meet other sick people and they will understand. You will meet people who aren’t sick and try their best to understand. that is all you have ever wanted.
  4. You still hate stairs and climbing hills.
  5. Everything is temporary. The love of God isn’t.
  6. Telling people you are a Christian is allot less daunting then you make it out to be in that mind of yours.
  7. You will miss getting to eat spaggetti and meatballs.
  8. You will learn to love to paint.
  9. That blog thing you have been talking about since you were 10, you’re doing it.
  10. You have been out of physical therapy for a year and a half and haven’t once regretted that choice.
  11. You are learning what it means to follow.
  12. You have learnt that potential isn’t enough you have to work har for your dreams, even if you have too many to focuse your effort.
  13. Being goal oriented isn’t selfish.
  14. You wont have everything figured out.
  15. You still cant drive.
  16. You will be thankful for your life in a way you hadn’t yet experienced
  17. You want to get to grow up.
  18. You will be off medications once again.
  19. Choices about your health don’t get easier.
  20. You know nothing compared to what you will someday.
  21. You still love life with all your heart.

Here we are halfway through that two year mark and while I know those words may have been uttered out of a professionals mouth the words of my creator is what matters most.

Running Marathons

For weeks I have been dreading going to the doctor. Now as someone who is chronically ill, this may make no sense. None. It didn’t to me until it happened to me.

I couldn’t understand why people wouldn’t want to know what was wrong so they could “fix it” but what happens when you realize the fixing isn’t coming.

I forgot. I forgot how I used to fight. How I used to see God above all thing and as the creator of all things. If you see Him at the top, dotors don’t seem all knowing any longer. While I trust, and pray, that God would place me into a set of capable health care providers, where he wants me, I never believed they had the final word. If God can make the entire universe in six days He can heal me if that is in his will.

I forgot that maybe this isn’t God taking away another piece of my health, like so many times before, but maybe He is protecting me in more ways then I am aware of. Maybe the endless test results and normal numbers really do mean that I am healthy in that aspect. I failed to see that God wants me to be healthy just as much as he has a place for me to be sick. It doesn’t have to be one or the other.

As the case with many sick kids I was mandated to see a psychologist. The idea was to asses my mental state and help my adolescent mind deal with the idea of a lifetime of illness.

My psychologists never understood my mentality. I am not textbook and I don’t make sense. When they would  ask what my goals were I would always answer to run a marathon. That was always followed by a conversation about having to readjust to my expectations for my life. They had no concept that from the beginning of time God has had my expectations in mind. He knows what I am capable of and where He wants me. I still believe that one day I will run a marathon, if not in this life then when I meet my maker.

As I walk into that appointment tomorrow it has felt like I have run a marathon to get there.

 

Lessons Learned Crying In A Coffee Shop

If you break down in a coffee shop people will care.

The middle aged men’s concern will be shown through their efforts to ensure a safe ride home.

The twenty something year old college student will look away so that you don’t feel bashful for the salt leaking from your eyes.

The barista will make small talk and offer you a free cookie, because who doesn’t need a cookie.

People will mop circles around you, literally and figuratively.

And despite crying to someone who has nothing to say to you;

A room full of people will have things to say to you.

A room full of people will care.

Society cares if you are doing okay, even when it feels like you are a fish in a mighty big pond.

So if you ever forget that you are important, cry in the shelter of a coffee shop because you will see that society isn’t as dark as it is portrayed to be.