This question is the first in a list of 52 questions (Don’t worry, I may not do them all) on Rose B. Fischer’s blog. It’s part of an awareness raising campaign called Redefining Disability. I’ve mentioned my own disability a few times, I’ve seen a lot of campaigning for the raising of mental health awareness recently and I’m following the Models of Diversity campaign so I thought I’d join in Rose’s Redefining Disability project and occasionally pick a question and talk about how my own disability affects me and my life.
What is my experience of disability?
It’s been a gradual experience, to be honest. My disabilities are Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (PoTS) . I was only diagnosed about four years ago but because the EDS is genetic I’ve obviously had it all my life and I had been what I thought was a hypochondriac. Wow, was that a blessing to find out I wasn’t and all this time, I wasn’t just lazy, this tiredness was real. I wasn’t bringing on the mind numbing migraines myself, they were real. Being told I was disabled was a relief. But getting that diagnosis was difficult because EDS is a little heard of disorder. The symbol used by EDS charities for EDSers is the Zebra because at training school doctors are taught, ‘if they hear hoofbeats, think horses not zebra’s.’ In other words, think more common, not rare. But we are those zebra’s.
As I’ve got older my symptoms have got worse and more unmanageable. Before, I was a reasonably active person. I lived, I enjoyed life, I did a skydive when I was 17 or 18, I forget, I socialised with friends regularly, I dated, I got married, I continued to have a social life. I had a great job, an active job I loved. Between all of this I was getting the migraines which would lay me out of action for between 2-3 days but I coped. And besides, I didn’t have children, I could sleep in if I was tired.
Now things have changed dramatically, joints hurt, a lot. I’m fatigued beyond reason. So much so, I live my life by to-do lists and a diary, making sure I don’t have to do too much in a day and don’t schedule live, going out the house events, too close to each other. I live by my diary.
The largest joint that is giving me problems is my head/neck joint and that gives me a myriad of symptoms, wracking pain in my neck and head so that I can’t move, as well as nausea. I’m wearing a hard collar while I wait for a neurosurgeon in the States to look at a special MRI scan. It’s this that is controlling what I do mostly because it is this that gives me the most problems. Unbelievable body slamming pain.
My experience? Other than the diary needing to be used to plan my life, is that I carry with me a huge sense of loss. Of having my life ripped out of my arms. physically and forcibly. Completely against my will. I hate this damn collar. I’m locked in this green plastic cage and yet I couldn’t bear to take it off because of the pain I’d be in without it. I even sleep in it at bad times because at those times I find I’m asleep on my stomach with my head completely twisted to the side and I’m surprised to find I’m in agony the next day!
My experience of disability is loss. Huge unbearable loss. My career is in tatters, my social life non-existent, I feel useless. Yes, I have to keep going. I have no other choice. My mind is still alive and well and active (if somewhat sluggish at times). It’s why writing is so important to me. I’m being stripped down piece by piece and I have to try and build something new from the ground up.
Can you imagine having to do that? Do you do that? How do you cope?
We shouldn’t shy away from disability or its effects. I hope my honesty doesn’t make you squirm or make you want to leave the blog. It was a hard post to write, but this is the person behind the book and all future books! Let’s buck the trend of ignoring what makes us uncomfortable and just take ten minutes to acknowledge it from time to time.
Rebecca – What a powerful post! Thanks for sharing what you’ve been through as you deal with your disabilities. I’m happy for you that you’ve got your writing as a way to re-build, and I admire you very much for determining to do just that. I also respect and admire you for giving a voice to others who deal with disabilities.
Thank you Margot. I think I’d be in a more difficult place if I didn’t have my writing and if I can help just one person see disability differently then I’d be happy. x
I don’t think anyone can truly imagine it, or what you go through on a daily basis. It takes strength. Just never lose that strength.
Thanks Alex, I’m a stubborn one 🙂
I’m sorry you’re having such a rough time. Believe me when I say you are not useless, even if you do feel that way right now. In time, you’ll find new ways to have the kind of life you want. I have done so. Hang in there, keep writing, and feel free to talk to me anytime.
Thank you, Rose. The writing is a new start at life for me, it’s why I’m working so passionately at it. And thank you for starting such a great campaign.
I can imagine how vulnerable I’d feel if I wrote a post like that, but I am really glad you did. I don’t think you realise how inspiring your output and productivity is to your blog readers/fellow writers, you do so much and on top of all your commitments you deal with your pain in the bum health issues, seriously you inspire me. I hope the medical community continue to innovate in ways that support you to give you something back for what you have lost x
Thank you for your lovely comments Yasmin. I have to do what I do because writing to me now is a chance at a new career. It’s still hard work, but one I can do at my own pace. What everyone sees is the finished product not all the laying about before it comes out 🙂 x
It must have been hard for you to write this post – and I really thank you for your candour. You are such an incredibly active and committed person, writer, blogger, builder of communities, and I don’t know what more you could do if you were ‘on top form’. I hope you find some answers and some solutions which can help you manage your condition better. But to me you are already sooo inspiring and admirable!
Thank you so much, Marina. It wasn’t easy to be so open, especially about how much this affects me on an emotional level, but that is also a part of living with something like this and it would be doing everyone who deals with disability a disservice to say it was a walk in the park to adjust your life around how your body behaves. Luckily I’m quite a stubborn person which is why I keep on going and want to do the best that I can and make myself a new career where I can do it to the timetable the disorders dictate.
I feel loss too, as at 18 I was all set to go on to bigger things, but an accident left me with spinal cord injuries, amputation, bladder and bowel, and lower limbs no longer working. However, looking back I can see where I’ve been fortunate and i certainly have met people in hospital who are quaraplegic, tetraplegic and some who will only leave the spinal unit one way.
I hope you get the help and support you need from U.S and a great post.
I’m so sorry you have had to deal with all that. It is certainly a lot to get your mind around. I hope that you have found something you love to do that you are still able to do. It’s about making the adjustments and finding something to love and put our passion into I feel, to make life encouraging.
Thank you for your kind comments.
I want to thank you for educating us about EDS. I had not ever heard of it until you mentioned it recently and I went and read more about it. I think you are performing an important service to let others know about your issues and disability and to basically bare it all, so to speak. I admire you for being honest and for your positive outlook. I find it amazing what strides are being made in medicine and science these days and how many things are indeed linked to our genetic makeup. Having lost family members to Alzheimer’s and lung cancer in the last few years, my hope is that more and more diseases and conditions will be brought into the light and there can be treatments and even cures found for these things. Your condition included. Bravo and know that we’re thinking of you and wishing you well.
Thank you Kay, I really appreciate that. I’m sorry you have been through such losses. Science and medicine have made huge strides in recent decades, it can only keep progressing. Unfortunately, a lot of the science needs funding and we’re in a low economic climate at the minute, but scientists always persist and people with an invested interest are always pushing, so fingers crossed for each disease and disorder. Thank you again.
You are so insightful. I worked with special needs children within the school system a while back. I had a wonderful little boy that was hurt before he could walk. When we met he couldn’t talk, but he had a wonderful way with color. I chatted all day long and wrote down each word he tried to use. Together, his caregiver and myself, we watched him go from maybe five words to over thirty.
Special needs, challenged are more positive words. In they end its up to the person living with it. How do you see yourself? How damn stubborn are you? No matter how much we love you, we can’t make life better. All we can do is encourage you to try and notice when you succeed.
Little successes when facing large challenges is all there is some days. On days with success remember to celebrate. 🙂
Anna from Shout with Emaginette
I’m damn stubborn Anna, it’s why I’m still here working away and writing. I need a new career, one that can bring me joy and can fit into a none 9-5 routine that my body can’t work to.
It must have brought you so much joy working with that little boy and to see him progress so much, thank you for sharing him with us. x
Hi Rebecca, I don’t think you could ever call yourself useless. You’ve managed to achieve so much – a great blog, writing and publishing a book – some people never achieve that so I think a big pat on the back is in order! Disabilities are never easy and are hard for other people to understand. Keep the faith and I’ll keep everything crossed that the US doc can give some ideas. Take care x
Thank you Lynne, I appreciate that. I know I have made some achievements, and I can acknowledge them, I just get so frustrated sometimes by how hard it is, by the fact that I have to rest between spates of sitting at my laptop etc. But I do it and I see results and I’m stubborn 🙂
Do you often wonder (knowing how much you’ve accomplished while living with your disability 24/7) who you could have been without it? I do.
Unfortunately Jacqui, I know who I could have been without it.I was there. I was living my dream. I’m still in the career I loved, but long term sick now and trying to sort things out. I know where I could have been within that career as well had this not have made me too tired to push myself harder within it, though at the time, I didn’t realise why I was so fatigued. And that’s part of the reason I feel such a loss. One day I may be able to blog about that specific loss, but not yet.
I cannot imagine how it feels to be in constant pain. You’ll probably say you just get on with it because you have to, but I think you deserve a lot more credit than you give yourself. I wonder if the active younger you would be a writer?
The younger active me wasn’t a writer, the younger active me had an active career. It’s one of the losses I feel. Though I did always read a lot and did always want to write, maybe had I not had this, I may have even had the energy to do both….
For me it’s a different condition, but I totally understand where you’re coming from. Have you heard of February 28, being Rare Disease Day? I use my blog and my writing to help me deal with my own pain and disability. Glad to have discovered you here.
I have and I shall blog about it here 🙂 I’m now following your blog 🙂
It’s very brave of you to write this Rebecca. I hope the neurosurgeon is able to help. It’s really amazing that you’ve managed to hold down any kind of career through all this, and managed to write a novel and publish it too. You’re an inspiration. By the way, did you hear about this serial on Radio 4? I think it was on woman’s hour. When I saw it, I thought of you 🙂 http://www.bbc.co.uk/programmes/b0505zw7
Thank you Niki. I think pure stubbornness gets me through 🙂 And I do rest a lot more than maybe I let on 🙂
I haven’t heard of this serial, I’ll have a look at it, thank you x
Rebecca: I just read your post. I am sorry you are dealing with pain, limitations and frustration.
My wife was in a car accident almost 26 years ago that changed her life. Her greatest current challenges are visual but she deals with pain every day. She tells me the good days she only hurts a bit.
We are Catholics and find our faith helps sustain us.
Starting in the early 1990’s I represented hemophiliacs and blood transfused infected with AIDS through the Canadian blood system. All of them were dying as there was no treatment for AIDS at the time. I admired their courage and love of life as they dealt with hemophilia which daily threatened their lives and AIDS which was taking their lives.
From the above experiences I now greet people differently. I only ask people how they are today.
God be with you.