I wanted to do something a little different, so once a month I’m hoping to have a guest post from one of my friends who have different disabilities. The purpose of this series is to show that we have lives like everyone else and to get people who don’t have disabilities to maybe think about us a little differently.
What should people call you if they want to ask you questions in the comments?
They can call me Joanna.
What are your diagnoses? How old were you when you were given those diagnoses, and what was the prognosis?
- Cerebral Palsy, diagnosed when I was 2. However, I was born 10 weeks early and developed periventricular leukomalacia, or white matter death, as well as oxygen deprivation, so doctors said that cerebral palsy was very likely and that my parents should watch for signs during my toddler years.
- Learning Disabilities like OCD, ADD, dyscalculia, diagnosed throughout my childhood.
- Depression with Anxiety, first diagnosed when I was 10, then rediagnosed when I was 32.
- Sciatica and nerve pain, diagnosed when I was 16.
- Asthma, diagnosed in my early 20s.
- Epilepsy, diagnosed when I was 26.
- Fibromyalgia, diagnosed when I was 28.
- Chondromalacia Patella and overall joint pain, diagnosed when I was 30.
The prognosis was the same for every diagnosis: Permanent conditions, progressive symptoms, going to worsen with age, but treatable throughout my life with various medications, treatments, and remedies.
What is your level of education?
Four years of college, graduated with a BA in Creative Writing.
Do you have a job/have you held a full-time job in the past? What is/was it? If you aren’t working now, why not?
I held several jobs in the past, most recently as a law firm library assistant from 2002 to 2009. The first law firm, which I joined in 2002, dissolved in 2008, and I was hired by another firm later that year, only to be let go in the peak of the recession in 2009. I have been unemployed since. I collected unemployment from late 2009 to late 2011, and in early 2011 I filed for disability insurance, for which I have a court date.
Do you have a life partner? What is your relationship like?
I am married to a man after five years of dating. Our relationship is extremely balanced in almost every way except physically. He is over a foot taller and much stronger than me. But we take advantage of that and enjoy it. We rarely fight, preferring to talk things out and then laugh over them. We forgive very easily because we know we will always be friends and lovers. We are a unit, a team, and we love each other more than our lives. I don’t have other partners, although I am bisexual, and my husband and I have discussed the possibility of my having a same-sex partner, although we would be in it together. He and I met through a mutual friend in 1999, while he lived in MD and I was at college in NY. We first met as friends when he abruptly fell in love with a school friend and came up to see her instead of me (very long story) but our attraction was immediate. The two broke up after a month. A few months later, Adam and I slowly began a long distance relationship, and in 2001, I moved to Maryland to live with him. In February 2005 we got engaged, and in May of that year we got married. We would have waited longer, but his parents wanted to sell the house and move to Florida. So for over a decade, Adam has been my best friend, my strength, my balance, and my ultimate support, especially with my disabilities. He has a younger brother, Michael, who is severely disabled and living in a group home, so he understands my life.
What kinds of things do you like to do in your free time, and why?
Reading. Creative writing. Watching silly television shows. Chatting via phone or internet, occasionally talking in person with one or two good friends. Taking walks when the weather is pleasant. Doing things with my husband, even if he loves them and they don’t interest me. Playing with my three cats. These are all gentle, quiet activities. I’m a complete introvert, and also shy. I prefer small activities, few surprised, no crowds, no clubs.
Do you have any pets? What type are they? Do they help you in any way?
I have three cats: A white/black female named Luna, a red tabby male named Jupiter, and a cream tabby female named Rose. They are all extremely sensitive to my disabilities and will often rally around me when I am experiencing symptoms. The females have taken to asking for hugs and kisses.
Describe how you feel when you have a seizure.
I call it “Being Alice” after the “Alice In Wonderland” stories. For me, a complex partial seizure is like being shoved into a different reality, losing most of my connection with the real world. I will experience colors, sounds, sensations, movement, and hallucinations all inside my mind, usually unable to move physically or at least limited or delayed in my responses. I might feel fear, euphoria, sadness, amusement, confusion, often all at once. I’ve been told that sometimes I act like someone tripping on LSD.
Often I remember some of the things that I experience during the seizure, but I won’t remember what happens in the real world. Many people say that you don’t remember what happens during a seizure, but that is untrue. I can lose those memories quickly, though, if I don’t write them down. After a seizure, I am often exhausted and confused, although occasionally I experience a kind of hypomania that lasts a few minutes to an hour. However, the post-ictal state can last for days and can leave me ultimately fatigued, unbalanced, and emotional.
What kinds of treatments do you use for each of your disorders?
Prescription medications (Soma, Flexeril, Codeine, Klonopin, Zoloft, Trileptal), meditative exercises, gentle workouts like Pilates-inspired exercises, massage, acupressure,
What kind of advice do you have for people who don’t spend a lot of time around individuals with disabilities?
Be kind, be gentle, be compassionate, be understanding. Never tell a disabled person that they can just walk it off, get over it, stop complaining, or try a treatment you believe is certain to cure them. They have probably heard it all before and will most likely be unhappy with you. Don’t treat them like a child, either. They’re capable of doing what they need to do. Offer your help in general, but if they turn you down don’t be offended; they’ve probably done certain things on their own. Just treat them like a person and tell them that you support them.
Can you share a story of a time when you had to deal with someone who really didn’t understand the nature of your disabilities?
After I was officially diagnosed with fibromyalgia, some of my male friends didn’t believe that such a disorder existed and that I obviously had “problems from the cerebral palsy.” I kept trying to explain how fibromyalgia differed from cerebral palsy, but they just kept telling me to “walk it off, stop whining, stop being so tired.” They didn’t understand why I could seem fine one day and drained the next. There were definitely moments of “Well, you did this the other day, why can’t you do it now?” It took months before they really started to understand what I was going through. Once they did understand, they really wanted to support and help me, sometimes to a suffocating degree. One friend started doing research on his own, although most of his research was wrong. It was very sweet, however. All of my friends understand, accept, and support my disabilities.
Anything else about your life that you are willing to share?
Because I’m working on a novel and short stories in the urban fantasy genre, I like to turn my disabilities into allegories, like monsters and supernatural forces. All my characters have some kind of psychic ability, since I have always wished for powers like telekinesis and clairvoyance. I love gemstones and I find magic significance in almost everything. I consider myself an agnostic eclectic polytheistic pagan; my husband is similar. Occasionally, we will use healing energy techniques on my pain and stiffness. Sometimes it works wonderfully, but like life, sometimes it doesn’t work out.