Welcome everyone. As most of you know I usually spotlight a child with some sort of medical condition or special need, but occasionally I do a spotlight from a different perspective--like interviewing a person who grew up with special needs siblings or adults who are disabled themselves. Well today I'm speaking with Amanda who herself is a disabled adult. Sometimes we mistakenly think that if we're born healthy and fully functioning everything is good and we're in the clear! If only that was the case. I've featured children who became disabled due to terrible accidents (see here, here and here.) I myself have dealt with debilitating back problems for the past year that have made me realize that physical, mental, medical disability can happen to any of us at any time. In fact, according to recent statistics 1 in 4 of today's 20 year olds will become disabled before they retire. I mention all of this to say that some people (sadly) still think of disability as genetic weakness and inferiority. All of us are human, which means all of us are susceptible to the afflictions that come with being human and at some point all of us will deal with disability either directly or with a loved one. If our worth had anything to do with our abilities, eventually we would all be deemed worthless. Thankfully that is not the case. Enjoy Amanda's spotlight...while many of her answers are short, but sweet they pack a punch! She's said quite a few things that have made me think, smile and air high-five. Welcome Amanda!
Miggy: Hi Amanda, thanks for being here today and sharing your story with me and all my readers. As you said in your email, you have an extensive list of debilitating conditions-- cerebral palsy, rheumatoid arthritis, Ehler-Danos Syndrome, Hashimoto's, and fibromyalgia--or as you say, Alphabet soup disorder since you have so many abbreviations. Ha! So let’s start at the beginning, have you had these conditions all your life? When were you first diagnosed and how was that for your family and yourself?
Amanda: I was a premature baby back in the day, but fairly healthy. The CP was since birth, but mine is basically nothing. It was actually caught later, my PT sent me for neurological testing because I was dropping the front of my foot at times. Ehler-Danos was also since birth, but since I got off easy with just hypermobility, no one ever thought much of the bendy kid being bendy. Everything else started showing up as an adult. Fibromyalgia was my first diagnosis at 26, Hashimoto's was soon after, fibromyalgia put me in PT, with a therapist who found it scary how flexible I was despite very tight muscle knots, which sent me onto the EDS, and my random foot dropping, the CP addition, about a year later. RA was from weird labs with Hashimoto's and I got the diagnosis the day of my 31st birthday.
Miggy: Tell us a little about your family life growing up...do you have siblings? How did your disability play into the family dynamic as a whole? How did your parents raise you as a child with disabilities? Is there anything they did really right? Is there anything you wish they would have done differently?
Amanda: Since this all started as an adult, I was living on my own. So my family hasn't had the day to day life. Which has good and bad points. Unfortunately, some relationships are less than great now because I've made choices that aren't agreed with. So I choose family to be what and who I want it to be. I just wish I had a normal family some days, but I'm ok with what I've got.
Miggy: Please tell us about your conditions and how they affect your day-to-day life? Out of all of them which is the hardest and which is the one that gets the least attention?
Amanda: RA probably likes to cause the most problems. I just flat out hurt - which is also fibromyalgia visiting also but I have more joint pain these days--and the medication to manage it is nasty. But most days are good enough. I work full time. I have learned I actually do better with a retail type job where I am up and moving instead of a seated job. Thankfully my employer is awesome about working with me if I can't manage something one day.
Least attention from me is Hashimoto's since it's behaving right now and CP because it's not an issue for me. Least attention from society is everything because mine are all invisible.
Miggy: As a person with multiple disabilities, what are the biggest worries you face for yourself? On the flip side, what are your hopes and dreams for yourself as they relate to your condition?
Amanda: My biggest worry is knowing I'm eventually going to get worse, and having to go on disability. I'm active and stubborn, so for now, I ignore those as best I can. I just hope that because I'm willing to try anything, maybe the next generation will be able to treat and cure RA at least. I also want people to understand invisible conditions more. I'm not mocking how that person walks, I walk like I need knee and hip replacement because my joints are shot.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Amanda: Every time I wear most or all my joint braces, some kid will ask or comment "Cool! Are you a Transformer?" Why yes I am! Or well, I wish I was. Questions don't bother me, so I can find most things funny.
Miggy: How can people best approach or respond to you? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Amanda: Best thing is to remember I'm a person first and most importantly. If they'd just do that, 99% of problems would go away.
Miggy: If someone else were just starting on similar journey as yourself, what would you say to them? What would you say to yourself if you could go back in time?
Amanda: Every case is different, radically so. Absolutely start with what works for most people, but if it doesn't work for you, don't do it! If I'm too stationary, my joints flare up. But if I'm lifting 40 pounds carefully, I'm ok at the end of the day. Maybe not 100%, but better than if I was sitting all day.
Miggy: Lastly, is there anything you'd like to share with the rest of the world as an adult with disabilities, like an overall message or a common misperception you'd like to address?
Amanda: Honestly, it's not fun unless you make it fun. If I wanted to be miserable, it wouldn't be that hard. But that's boring. It's not worth my time. So, this alphabet soup mess I'm stuck with is just going to have to deal with me living as much of a fun reality as I can.
I think that last paragraph is brilliant! "It's not fun unless you make it fun. If I wanted to be miserable, it wouldn't be that hard." That is LIFE you guys. Definitely applicable to having a disability (or 5!) but that is everyone one of us! Also, "best thing to remember is that I'm a person first and most importantly." Again, this is everyone. We are all people and thus all deserving of love, respect and kindness. Thanks for sharing your thoughts and experiences with us today Amanda!
Hope everyone has an amazing Christmas time. I'm looking forward to chillaxing and enjoying time with my family. I'll probably pop in and there over the holidays, but other than that, see you next year!
ps But feel free to email me anything if you or someone you know would like to participate in the special needs spotlight at thislittlemiggy at gmail dot com!