There is nothing quite like having a chronic illness and being stuck in a wheelchair that makes a person feel invisible. This sounds like an oxymoron, doesn’t it? But it happens. Having an illness like Ehlers-Danlos Syndrome, with all it’s companions (Dysautonomia/POTS, Osteoporosis, Athritis, etc) changes a person. There’s no way that it couldn’t. We can try to deny that there’s anything wrong, which I did for a while, but it catches up to us. Our bodies turn against us, causing us pain, making us faint and dizzy. There’s nothing we can do to stop it. It’s a degenerative process; it can be gradual or quick, either way it is still degenerative. We use braces and bandages to try to hold our joints together, but those become intolerable to our skin. Sores form and don’t heal well. Then the autonomic nervous system goes haywire causing our blood pressure to drop and our heart rates to become erratic that makes us nauseous and dizzy and unable to breathe properly. Our digestive system is weakened increasing nausea and making it difficult to eat. Before you know it, we start using canes and walkers and then have to make the awful decision to use a wheelchair.
This may happen in a matter of 10yrs, 5yrs, or like in my case just about 18 months to 2yrs. I’m not longer able to do the things I used to do. Last year I made the decision to stay home while most of my friends went on the annual camping trip. I can’t even begin to express how bummed I was. I loved camping. I’ve had to give away bike finally coming to terms with the fact that I will never ride a bike again. I will never be a black belt. One of the worst things, though, is that I can’t do things that my friends do. I can’t go out after dinner and have a few drinks at a bar. I usually can’t handle to stay at parties to long because of pain, or fatigue, or some other symptom. Having a chronic illness is, indeed, isolating. There’s a disconnect between the world most of my friends live in, and my own. It’s sort of like living on the outside of the world my friends live in, but I am unable to reach them, to join in. All that’s left of me in their world is my hand prints. Some days more, but… just my hand prints. I wish I could join…. I really do.
This isn’t the life I would choose for anyone. I’m 27 and supposed to be having the time of my life. Instead of having a career, a house, going out with friends, having fun… My life is full of doctor’s appointments, medical bills, wondering when my new wheelchair will be ready, making sure I take my medication when I’m supposed to. Just when I think I have things figured out, something goes wrong and it’s time for more doctor’s appointment, more tests, more medication. Some days I want to scream out and say that I am not invisible, I exist! Would it make any difference? I suppose not. I will still be in a wheelchair, going to doctor’s appointments, having to leave parties early, taking more medication, etc.
The Spoon Theory was written by Christine Miserandino, the creator of But You Don’t Look Sick – a web community for those affected by chronic illness.
The Spoon Theory stemmed from a conversation between Christine and a close friend when her friend asked her what is was like to have Lupus. Christine grabbed a handful of spoons and started by explaining how each person has a number of spoons each day, and that each task (ie. showering, shaving, cooking, etc.) used up a spoon. It is a very eye-opening story and has really helped people to understand what chronic illness is like. People dealing with all kinds and types of chronic illness have used this story to help loved ones gain understanding, not just those with Lupus. Here is a video made by a fellow “Spoonie,” a nickname given to members of But You Don’t Look Sick explaining The Spoon Theory.
Read the full version of The Spoon Theory.
With much encouragement from folks on Facebook, I have decided to do a series of posts discussing Autism Spectrum Disorders (ASDs). A lot of my content will be mostly about Asperger’s Syndrome and Higher Functioning Autism, but I will also include some posts of the more severe end of the Autism Spectrum. I do believe that with the right kind of education, assistance, understanding, patience, etc., that any Autistic child or person can become a well functioning person.
A big component of this “Project” will be a list of suggested reading for people who are affected by Autism Spectrum Disorders. This may include parents, teachers, and/or children, teens, adults with ASDs. It’s going to take some time, and is a huge commitment, but I feel it is so important. There is so much that is misunderstood when it comes to the world of Autism that I feel it is necessary to speak up and talk about it, whether it be my own experiences, books about Autism and associated disorders, fiction with autism/autistic characters (accurate depictions only), or links to posts from others on the Autistic Spectrum.
I am welcoming any and all suggestions for this Project. What do you want to know? Is there a book you recommend? – I will most definitely look into it and post a review! Leave me a comment and let me know. Or if you’d rather email me feel free to do that: klacerte (at) gmail (dot) com.
If you live near Catonsville, MD and love wool, then you must attend the Maryland Sheep and Wool Festival! Cloverhill Yarn Shop is hosting a count down where you can enter a contest for a chance to win lovelies of impossibly beautiful rovings from Woolgatherings. To enter, go to Cloverhill Yarn Shop Blog to find out the details!
This video is amazing and worth EVERY second spent viewing!
There is so much debate and controversy about Autism Speaks and what they stand for. Personally, I do NOT believe that Autism is a disease that needs to be cured. I believe each autistic person has something to offer to society. Granted, it’s not without its hardships. I’ve worked with Autistics, I know many, I am on the spectrum myself. I know what I am talking about. To say the Autism is a disease, is something that needs a “cure,” is saying as if an Autistic, or me for that matter, is diseased, needs to be cured. Autism is neuro-diversity, a different way of perceiving, of thinking, of seeing the world. Some things don’t come to us easily, but that does not make us any less in value.