Invisible Illness

Do you remember when you were little, and you climbed up in Granny’s lap? "Be careful, darling," she’d say. "Gently, snookums," she’d whisper, as you’d hug her. She would often warn you to use care and be gentle, as her ’Rheumatism was acting up a bit’. We smiled and climbed up anyway. And Granny let us. Why? Because she wanted our love! We didn’t understand what it meant to have arthritis as kids. And we certainly never expected it to affect us, in our perfect little lives, not until we were old like Granny anyway. And Granny’s hands looked gnarly.

 Bulging and deformed knuckles are a classic sign of arthritis.

But, not all of us grow up to have those perfect little lives that jive with our perfect little time lines. Often times, we hide our reality, lest our peers, our coworkers, even our family, judge us for ’breaking down’ earlier than they do. ’Invisible Illnesses’ that will rob years from our future, make every day more difficult, and cost untold dollars in treatments. We don’t want to appear weak, or unworthy of our social class places in our community. But the fact is, we are here with you. We are mixed in with you, the perfect. And we are your mothers, your sisters, your bosses, and your children. We are your neighbors, your friends, and your grocery clerks. You just don’t know it. We hide it well. And you fear us, because you could BE us, one day. We don’t want to be shunned, or worse, pitied. We want understanding. Acceptance. Appreciation for what we are capable of. 

We live in a time when we are expected to excel. Do the right thing, work hard, and you will reap the rewards. That’s what we are taught from the day we start Kindergarten.  We work, pay our taxes, raise our own kids, we love our animals and we hope we make a difference in the world. Our country brags about being at the top of everything (even when we know better) and that seems to be part of the fallacy that causes so much conflict. The reality is, we hide our weaknesses as a nation, hoping others won’t see them. We do it politically, militarily and most sadly, domestically. There is positive strategy in boosting our egos in politic and military realms, but the fact that we turn our backs on the truth of our frailty in our own backyard is shameful.

For the purpose of this blog, I want to focus on physical illnesses that most people can’t see by just looking at the patient. (No, I’m not shunning mental illness, but that’s a completely different blog topic.) Yes, there are the short-term injuries we all endure in life, but I’m talking more than just a self-inflicted ’bum knee’. I’m talking about systemic illness, the kind that affects your every breathing moment, your daily quality of life, and your ability to live pain free. Illnesses like Multiple Sclerosis, Fibromyalgia, Diabetes, Muscular Dystrophy, Crohn’s Disease, Immune System disorders, Heart disease, and other, life-altering diseases. Things we cannot cure, but fight every day to survive. Those illnesses you pray you don’t ever get. Yeah. Those ones.

There are many illnesses that are invisible. I personally can relate to Rheumatoid arthritis, as that is my diagnosis, and has been for over 20 years now. I also have Sjogrens Syndrome, which causes dryness of all mucus membranes (eyes, mouth, etc).  I don’t look like it, but on the inside, my body is pretty darned sick. RA is an autoimmune disorder that affects my entire body. 

It’s like my own body is attacking itself, a vast sea of mini-pacmen destroying my healthy joints. In order to control it, I have to try to kill my immune system with chemotherapy, which that has it’s own set of symptoms and difficulties.  

It’s a constant balancing act, and if you were unaware of my struggles, you may not notice the thinning hair, the utter exhaustion or the lack of appetite. If it unbalances on the flip side of the arthritis, I am prone to cancers. It’s a treatment plan that often feels as though it’s as bad as the illness itself. You might see my swollen joints, but you’d have to look to notice. And I’d have to allow you to see them. I hide it well. 

 Fingers spread out as wide as possible. The thumb is severely restricted.

Making a fist. See how hard it is to use my hands?

Most of the people who have had contact with me in the last year cannot tell you what my symptoms are, as I have learned to work around them in order to function. I am expected to function, ya know? When people meet me, I avoid a handshake as it is painful. People can’t understand why I don’t have a totally full schedule. I look so damned healthy! There was a time in my life when I was the super woman – houseful of kids, 2-3 jobs at a time, and lots of activities. I’ve had to slow down a little, but I’m finding that isn’t a totally bad thing, per se.  Well, I could have a full dance card, if I really wanted to -  One day a week. But arthritis is a sneaky little bugger – you cannot predict it. One day, I may be able to hike a forest path for 5 miles, but I most certainly will pay a price for it the next day. Or week. I won’t know until I try. So I don’t make plans ahead. I can’t. But I do try.

I am often judged unfairly when I am in public. One of the most common biases raises it’s head when I drive to the grocery store. I have a little blue dangly for my car’s rear view mirror - a disabled parking pass - which I do not abuse on days when I feel fairly good and strong. I use it only when I really need to. Yes, I am the girl who parks in the slot with the little blue wheelchair signs. I get out, but I appear healthy as I climb from the car. I am the one you rant at. And I see your sneers. I hear your rude comments. I know what you are thinking - I remember the days when I was perfect too. But you have no idea how much of a difference my little blue placard changes my life. If you compare my gait as I return to the car, you will see a different girl. That little spiel around the store has made my foot arch dislocate with each step.  

That bulge by my baby toe is my bones jutting outward.
Yes, it hurts with each step.

If it’s a big store, my feet can almost go numb from such intense pain. But because of saving a few steps, I will have enough energy to spend an evening with my son, watching a movie with my feet up. I can stand in the kitchen and cook a meal for us. By parking closer, and using a grocery cart as a walker, I have a better life with my son. (You think I really need the cart to just grab a loaf of bread and a gallon of milk? I bet you had no idea of that little trick either, right?) To be a better mom - THAT is what is important to me. That is why I tolerate your glares and remarks. 

Next time you think about judging someone parking in a handicapped spot, think about the fact that they may have one of these invisible illnesses.

One common trait is severe fatigue.

 Most of the illnesses that are invisible have one major symptom in common - fatigue. There is usually chronic pain involved and pain is extremely draining. I personally do not take any pain medications, however I am getting to the point where I need to consider it. I use humor as my drug of choice for the most part, as those of you who know me can guess. I live to laugh. When the laughter doesn’t seem to dampen it to at least a five on a 1 to 10 scale, it’s time to get help. When the laughter ends, I suspect I will too. Until then, keep those happy blogs coming!

Special thanks to Ang for requesting this blog.

 

God's Favorite Color

It is Special Education week & Autism & ADHD Awareness month and I ran across this writing from nearly a decade ago. Theo is now 25 years old, living on his own in Boise, Idaho. After graduating from North Eugene High School with honors, he went on to be a lead singer at Boise Bible College, with a full ride scholarship for his voice (the kid can SING!). He works full time for Jackson's and continues to sing. Now if we can just talk him into moving closer to home!

 

God’s Favorite Color

            Children follow him with wide-eyed amusement. Adults scowl in first impression distrust. He is noticed in a crowd, standing out with his shockingly bold blue hair. His appearance is the first characteristic people notice about him, but it is his heart that draws them close. He is a miracle child. A gift from God. From the moment of his conception, life has been his challenge: one that he has endured and successfully faced with the love of God and strength of understanding beyond his years.

            Theo was the fourth child in a rocky, violent marriage. It was a difficult pregnancy, complicated by maternal high blood pressure. During delivery, his umbilical cord wrapped tightly around his neck and strangled him. He was barely alive nearly five minutes after birth, when his father took a handful of cold water from the hospital sink to baptize him, should he not survive. This small act of blessing saved his life. The cold water shocked his tiny body into breathing his first life-giving breath. Although it would be several days of intensive care in the NICU, he survived.

Theo’s first year of life was difficult. He screamed every waking moment. He was allergic to milk of all kinds, including cow, goat, soy, and even breast milk. By age one, he was able to tolerate milk that had the lactose removed. Slow to develop, he did not follow the normal milestones of growth. He didn’t roll over until nearly 9 months old, didn’t walk until nearly 2 ½ years old, and didn’t speak until after he was three years old. When he did begin to talk, he spoke in a language only his oldest sister could understand. The doctors explained that there had probably been a brain injury from the lack of oxygen at birth, and that this child would need special care for the rest of his life. Devastated by the news, but with unyielding faith in God, the family encouraged his talents and advocated for his success. 

Small for his age, Theo lived in a world that didn’t include others. He was an artist, evident before he could speak. He would sit for hours drawing, unaware of the chaos occurring around him in our household. He shunned physical contact and rarely spoke, except to detail the story lines of the cartoons he was drawing. For many years, he attended speech therapy. The day he came home and could say the word ‘parallel’ was a day for rejoicing. Theo had found communication, finally.

During his ninth year, he began having grand mal seizures. Unable to control them medically, the seizures impacted his life, both physically and psychologically. Unpredictable, they occurred at school, or while climbing a tree – usually in very dangerous moments. The bruising that occurred from his falls was minimal in comparison to the shame he felt. Other children were merciless in their teasing of him. He was shunned, an outcast by his peers, at a time when self-esteem was just beginning. For several years, he dealt with seizures as an every day part of life, until he finally outgrew the grand mals as he reached puberty. The seizure disorder also interrupted his educational success. Having to endure absent seizures, or staring seizures, he would miss parts of each lesson in the public school classrooms. Instead of banishing him to special education classes, the school allowed him to attend a school geared for medical problems, Creative Minds. The ratio of teacher to student was one-to-four, and Theo thrived with the undivided attention. Still socially inept, he was able to focus on learning. Like a computer memory system, Theo has incredible skill at remembering information. Part of his disability has been in organizing all he sees, hears and learns. And he is oversensitive to outside distractions. He notices the classroom bustle, the trains passing a mile away, the ticking of the clock, the fantasy thoughts of adolescence. But he cannot find a file system in his brain to prioritize the information. At times, his frustration releases in violent outbursts. At other times, he simply shuts down into his world of being alone. Amazingly, God has given him yet another gift: the gift to understand it all.

He knows he is challenged by life, yet he faces it head on. Unable to read other people’s emotions, he has learned the social skills we take for granted; knowing how close to stand to another, how long to look into their face, and the proper intonation of his words. Sometimes he forgets, but his natural ability to endear people usually overcomes any adversity that may surface. He is a creative individual. His style is all his own. The day he dyed his hair blue, I realized that he actually relished in being different. Most people would consider him a nerd, or a dork. Yet his uniqueness is what draws people to him. He can infiltrate any group and seemingly fit in. The fact that he has learned this skill is remarkable, knowing where he started in life. 

An awkward, clumsy child, he was never able to interact with his peers physically. Having always had sports available to him, it was his choice to attempt to play soccer and tee-ball, but he never really felt comfortable. Then he found the skateboard. His grace and balance is incredible. Known as a freestylist, he has become almost legendary on the local skateboarders park circuit. He will often lose track of time, spending hours perfecting a special move on his board, or teaching a peer to succeed in a board trick. He teaches through positive reinforcement, having learned it in his own struggles. When I overhear the other kids talking about the awesome tricks he accomplishes, and his willingness to teach others, I see that God has always had a special plan for Theo. He has a knack for reaching people, for teaching people, for touching people’s lives. He has the patience of Job, the diligence of Moses and the intelligence of all the disciples rolled into one. This quirky little Einstein, the boy whose eccentricities at times put him into harms way, has the brain of a genius. Yet his goals are simple in life. He wants to be a youth minister, a mentor in life, a teacher of truths. And I know he will succeed, that God’s plan has shown itself to the world. The blue haired boy will make a difference. He already has.

Watching Theo interact with others gives me great satisfaction. It’s as though I awoke one day and saw a totally different child than the one they handed me in the delivery room. This is not the handicapped child I was promised. He may not be following the societal rules as we know them, but he has obtained the purest form of understanding that many of us only dream of. He has always understood the teachings of Christ, an unwavering belief that is exhibited in his every day living. The boy who couldn’t communicate has also found his voice. Whether unleashed in choir, or belting out hymns in the shower, Theo has the voice of an angel. Clear and resonate, the lyrics that escape his heart have the knowledge of truth. Sharing his vocal gift is a talent that gives him joy. Honest and refreshing gullible, his sense of humor belies his intelligence and compassion.  

Theo is fascinated with the young children who follow him, asking him if he knows he has blue hair. He is always quick to smile, and kneel to their level to talk. The children want to touch this young man who shunned physical contact. Recently, Theo was walking in the mall. A shy, red haired boy of about 6 stared at him with the familiar smile. Before the boy could utter the often-heard questions about his blue hair, Theo spoke to him. “You have red hair!” exclaimed Theo. The boy smiled broadly. Theo gave him the ‘thumbs-up’ sign, “Cool!” Yes, the blue haired boy has a gift. Sometimes God’s gifts just happen to come wrapped in the shockingly bold color of blue.