People Are More Than Just Their Disability

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Here is an article I recently submitted to Think Inclusive, “an online resource that promotes the full and authentic inclusion of people with disabilities in their school and communities through education and advocacy.” Check it out and consider becoming a member. Lot of great content on a variety of disability-related topics, including autism. Click here…….

 

 

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Waking Up Paralyzed

My eyes were still closed as my consciousness returned slowly. From my quiet hospital room, the sounds in the hallway and from the nurses’ station grew clearer. Through my fading sedation, my senses began to return. I took a deep breath and swallowed, eyes still closed. My throat was raw from having been intubated during my long surgery. How long had I been under, exactly? Time is warped as soon as you succumb to anesthesia on the operating table. I wiggled my fingers and felt the pulse oximeter on my left pointer finger. Good, then I can more easily press the call light with my right hand to let my nurse know that I was waking up.

 

Yet in a haze, I took another breath and drifted off again, into a light sleep. I recalled some of my last thoughts before the surgery. It had been a long, difficult wait. There was so much uncertainty as to whether surgery was the right intervention for my disability, which I had lived with my whole life. So many of my treatments had been somewhat experimental because long-term outcomes and prognosis couldn’t be determined with much confidence. While much research was being produced, my disability was not very well understood. It was hard to say if this surgery would help with the effects of my disability. But after thinking long and hard, and feeling like there probably wasn’t any other solution that could offer a greater potential for pain relief and easier walking, I sort of resigned myself to this as my only option for relief.

 

I took another deep breath as I reflected on all of the changes that had led up to this surgery. My body had a mind of its own! Not too long ago, I was not only walking fine, but was working out, traveling, and a successful celebrity fitness trainer based in Los Angeles, working long days in a physically-demanding industry. But then little things, like fleeting numbness and losing my balance for a moment, turned into painful, labored walking and an impending almost sense of doom as I felt as though I were losing control of what was happening to me. My body was my temple and my instrument. I took good care of myself and was at the pinnacle of fitness. But, without my permission or doing, it crumbled into a mass of symptoms I could not explain or deny. Something had to be done; I intended to be proactive about my health. Having this invasive surgery was not a decision I had rushed into. And in order to plan it, I had to consider many factors in my life, as a mother of four boys and professional. The timing had been complicated, which kept pushing back my availability to go through this huge production: I was looking at spending at least a week or two in the hospital, and a year in rehabilitative therapy. Who has time for that in a busy life? Especially for someone who liked to be so active and on-the-go. Sometimes you just have to take the plunge and go with the ‘good enough’ when ‘perfect’ circumstances will never present themselves. Ah, so there I was, phase one completed, and on to phase two of an indeterminable number of phases; I had no idea what lie ahead, and willing or not, I was on the ride. Buckle up and hold on, right?

 

“Clang!” I startled, my eyes flying wide open. A nursing assistant right outside my hospital room door accidentally dropped a bed pan. It couldn’t have been for me because I had an indwelling catheter in my bladder, which had been placed before surgery, and would remain until I had enough control not to need it. She poked her head into my room and sheepishly apologized. I smiled weakly, too tired to say anything in response. Well, no need for coffee, I was awake now! As I got my bearings, I wiggled my left fingers again and again felt the pulse oximeter on my pointer finger. I turned my hand over and moved my arm a little. I felt the bed rail on my right side, feeling along it for a call light button to request my nurse. I pushed a button. Nothing happened. I pushed another button, which lowered the head of my bed. Nope, not it. I squinted at the bed rail with many buttons. There it was. I pushed it a few times to trigger the call light with a “Ding!”

 

I turned my head toward the door to watch for my nurse. I didn’t know who was going to be taking care of me on this shift. I didn’t even know what time it was. I had no windows in my room, and had not located the clock. I tried to scoot up in my bed to be ready to meet her. That is when I noticed that I couldn’t feel my legs. I attempted once more to reposition myself. But my legs would not cooperate. They weren’t even numb. It was as if they were not there anymore. Panicky, I tried to reassure myself that it had to be the heavy anesthesia. Or maybe they had me on too many pain medications to prevent too much post-op discomfort. There had to be an explanation. But nobody had prepared me for this. In all of the conversations leading up to my surgery, there was no mention of the possibility that I wouldn’t feel my legs after this surgery. I knew what corrections were going to be made and was given an idea of how long it might be before I would be eating normally, and such. This part was not according to plan. I grew more anxious as I waited for the nurse. “Hurry up and get in here and tell me what is going on!!” I thought to myself, though too worn out to speak any words of frustration.

 

“Hi, Bridget, I noticed your call light was on. Your nurse is on break, but I can help you.” Great. Just great. She probably didn’t know anything about me, my disability, or my surgery. I mustered up some courage and fought back tears. “My legs! I can’t feel anything! My legs are paralyzed!” The nurse told me to wait a minute and pulled my chart from the plastic rack on the wall. She flipped through the many pages, looking for information to base a response on. “Hmmm, it looks like you had an extensive operation. This is a bit unusual, but not unheard of. Let me try to bring your doctor in to talk with you. Try to stay calm and I’ll hurry, OK?” My heart fell. A sinking feeling came over me as I began to sob, trying not to become hysterical. I was emotionally exhausted from everything I had been dealing with and trying with patience and positivity to manage all of my chaotic symptoms over the past year, or so. But my brave face melted into a flood of tears.

Everything About You is Beautiful

Everything about you is beautiful

Absolutely everything

I love your contagious laugh

Your soulful eyes that reflect so much kindness and love

The way you gesture when you speak

How you make me feel so warm and happy

You have the cutest nose

And perfect, kissable lips

Sensitivity of an artist

Intelligence of a scientist

Heart of compassion

Wit of a comedian

Words that you speak to me are gifts of your soul

You sparkle on rainy days

In the dark, you’re my light

In my universe, you’re the brightest star

When I awake in the morning, thinking of you gives me joy

Waking up next to you is heaven

And falling asleep, wrapped in your love, I am at peace with the world

I love you so much

Everything about you is so beautiful

My Dear Old Friend, Matilda: A Short Caregiver Story From The Heart

Wow, I have so many wonderful memories of people I’ve worked with over the last twenty-plus years as a caregiver. One of my favorites was an elderly woman I’ll call Matilda. She was in her 90s when I did her bath visits, so I’m sure she is by now departed. I went to her apartment by the U of MN campus in the Riverside neighborhood twice a week to give her a bath, do laundry, and help with whatever she needed. She loved watching “Price is Right” on her antiquated television from her worn-out arm chair, and eating potato chips. She would tell me stories about her son, who was a professional at the university, and how she raised him while working in a factory. Her arthritic hands were evidence of her years of hard labor; there was something very beautiful about them, knowing what they had accomplished. During bath time, we started a tradition of our own: singing together. As I shampooed her incredibly long, gray hair (twice to get it really clean), we found songs we both knew the words to. When we got loud, she would sometimes stop, look at me with a bright smile, as if she were channeling her inner child, and giggle, “My neighbors probably think I’m having a party over here.” We both laughed heartily about that prospect. Bath time was always followed by braiding that long, gray hair, so she was fresh and neat for a few days until my return – when the fun would begin again. Imagine if I had just gone in to do my job in a routine way. I wouldn’t have anything to delight in today, looking back…I love you, “Matilda” wherever you are.

Raising a Strong Woman

It takes a strong woman to raise one. And it takes a village of strong women to support each other to raise strong women. The best way to show our strength as women is to empower each other — plain and simple. Our daughters will learn from our examples — our sons, too. We speak loudest through our actions, especially how we treat each other. The more we support each other, the more supportive we all become. And this collective good will is returned to us, in kind. So, women, BE GOOD TO EACH OTHER!! No excuses for anything but love and kindness. Namaste!! 🙂

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My daughter after her first major reconstructive orthopedic surgery on both legs to correct issues related to cerebral palsy.

My daughter was a teeny-tiny baby, to say the least. She was born 14 weeks early, weighing two pounds, six ounces. Her early prognosis was very concerning — understatement of the year! With many medical challenges related to prematurity, I had no idea what to expect for her future. I guess one could argue that nobody knows their futures. For each of us, uncertainty is a part of life. But it smacks you in the face when you know the odds are stacked against you. Anyway, I chose to have faith, and then acted on it. I set out to do everything I could to give my daughter a fighting chance, and a great life. Some of her outcomes are connected to things I did, and quality medical care, but a lot of it has also been pure chance. We have only so much power to control our circumstances. We have some! But there is a lot we can’t change. I have found that it’s healthy to do everything you can, and then surrender the rest. Easier said than done, but worth the effort. For example, I couldn’t ensure that my daughter would eventually walk. But I COULD take her to specialists who could advise us on strategies to help increase her chances of walking. I couldn’t predict how well my daughter could read, or if she would even be able to. But I COULD put her in an appropriate preschool and provide a rich environment — reading to her, taking her to museums, introducing her to growth experiences. You see what I mean? I wouldn’t call it realistic, or optimistic. I would just call it managing expectations. I’m a dreamer who analyzes odds according to my own judgment. That means that I imagine the possibilities, aim high, maximize my internal and external resources, and then accept that the resulting outcomes will be on a range, or spectrum. I don’t worry too much about what other people say. Sure, I take it into account, like I do any input. But I process it with a lot of other information to form my own hypotheses. The benefits of a scientific mind are applicable to life, not just a lab. 😉

 

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Recovering well and enjoying an outing to a friend’s farm.

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Always at home with her animal friends.

 

 

 

 

Fighting for Caregivers at the Minnesota Capitol

Here is a repost of a blog article I recently submitted to the Direct Care Alliance:

Fight for Direct Care Worker Raises Gaining Ground in Minnesota

Bridget Siljander

Minnesota caregivers—also known as direct care workers or direct support professionals—have been fighting for many years to get the support that they need to continue doing the work that they love. Now that fight is gaining momentum in a big way, thanks to the 5% Campaign the Minnesota disability community is uniting around. The campaign is asking legislators for a 5% increase in funding for home and community-based services, 75% of which will go toward compensating caregivers. The funding would go to two state programs: Home and Community-Based Services and Intermediate Care Facilities for Developmental Disabilities.

Last month, people with disabilities, direct care workers and other advocates gathered for Disability Day at the Capitol. Minnesota Public Radio and Kare11, our local news station, both covered the event. Kare11 quoted Pam Gonnella of Eagan, whose daughter lives in a group home, about how important the workers there are to her daughter’s well-being. “Which is why it’s so important to raise wages and cut down on the turnover at group homes and home based agencies,” Eagan said. 

In order for caregivers to continue doing work that we have chosen and would like to continue doing, we need adequate support. The raise made possible by the 5% increase will be a starting point on the path toward a living wage, an important part of what is needed in order to ensure availability of quality services for vulnerable Americans.

The campaign may already have had an effect on the state senate’s health and human services committee, which recently approved a bill that would give home care workers a 5 percent raise and increase pay for nursing home workers who earn less than $14 an hour. According to The Bemidji Pioneer, the bill is expected to be folded into a budget bill that was passed last year.

Learn more

Wednesday Wonk: The 5% Campaign

Testimony about what direct care workers have made possible for a man who receives direct care services

 

Here is an update: Governor Dayton is committed to raising caregiver pay.

Thank you for reading about these important issues. Caregivers are essential to our community infrastructure, and need to be invested in to become sustainable.

Stay tuned! 🙂

Caregiving Saved a Teen Mom

Leaping from girlhood to motherhood in a single bound does not allow much time to process this dramatic transition. At 18 years old, I was with child. At 19 years old, my baby was born 3 1/2 months premature. She weighed 2 lbs. 6 oz. and was 14 inches long. The night she was born, it was like I went through a sort of identity warp. So was my pregnancy, in slow-motion. The girl in me, the mother in me, the woman in me, all swirling together like sticky taffy. Different colors, different consistencies, and different flavors. All in one form, yet distinct. It was an internal menagerie. But I had a good head on my shoulders and a lot of fortitude. I would need it over the coming years, which would be more than I ever could have bargained for.

As a new mother, you fall in love with your baby. Thrilled, you are eager to go home to indulge in the joys of motherhood. But this reward of pregnancy, childbirth and long-awaited anticipation evades mothers of sick babies. It would be a three-month wait in the Neonatal Intensive Care Unit (NICU) until we would be able to see the light of day. While the clock ticked more slowly than in any other context, I waited. Not idly, however. I worked seven days a week as a personal care assistant (PCA). I suppose this helped to pass the time, but I wanted to be nowhere but near the little life I had just created that lay in an incubator in the corner of a hospital ward.

My daily routine was active, to say the least. I did bath visits in the morning. Margaret was one of my favorites, and she lived near the University of Minnesota, where my daughter was in the hospital. During bath time, she wanted me to sing with her while I washed her long gray hair that she normally kept in a braid. She had raised a son as a single mother while working in a factory. She had an amazing, happy spirit, and loved to laugh with me. When we sang together, she often giggled and said, “My neighbors probably think there’s a party going on over here.” She told me that I looked like a movie star, and insisted that I have some potato chips while she snacked from an open bag and watched “The Price is Right” on television. Her apartment was cozy and she seemed to feel right at home there, especially in her lazy boy chair, parked in front of a large television with a wooden veneer. She certainly brightened my day when I visited her. In fact, she was a bright spot that helped get me through the long months while I waited for my baby to improve.

In the afternoons, I worked with an 11-year old boy, named Chris. He had multiple disabilities, which were physical and intellectual — and autism. Some of his behaviors were challenging, and he often hit me. It was hard for him to control his emotions, but he was a sweet boy who seem to like me well enough. I would take him to the community center so that he could interact with other kids. They were very welcoming, and he sometimes played ball with them. He had an older brother and sister, and the family of five lived in a house in south Minneapolis. His mother was very outgoing and feisty, and his dad was very quiet and passive. The older siblings were typical teenagers, and didn’t say very much. One of the toughest parts of the job was making sure that Chris took his bath. He sometimes didn’t like going in the water and I had to work really hard to help him stay calm. It was quite a production and sometimes the bathroom would be a huge mess afterward. He was a good eater, though. He would walk around the house with his food. Cheese sandwiches were one of his favorite snacks after school, and he could eat quite a few of them. Because I worked such a long shift with Chris, I had to carve out time to pump breast milk in the bathroom when he was settled somewhere. I needed to pump breastmilk every two hours, and store it and small plastic cups that I labeled. Some of it went into a refrigerator, and some needed to be frozen for later. It was nerve-racking trying to fit in this task while I worked with this family. It was a pretty stressful job, but it was good that I had so many hours together — a rarity in home care. Most of the time, you get two or three hour shifts, and nothing over four hours, normally.

After Chris, I would go to the hospital to visit my baby. I was at the hospital every chance I had. I usually parked in a lot across from the hospital, and sometimes listened to music on a Walkman as I made my way up to the floor. Usually I went after my morning shift because I wouldn’t wake up until I needed to go to work, after spending most of each night at the hospital. But I went between every shift after that, and stayed most of the night until I couldn’t stay awake anymore. It would get pretty late because I worked an evening shift until midnight with a man named Mike.

Mike is still a dear friend to this day. His mother, too. They changed my life. Completely and wonderfully. Mike broke his neck in a football accident when he was 16 years old and in high school. But he still went on to go to college at Berkeley, finishing at the University of Minnesota. This was after he spent months in the hospital and rehabilitation. I learned all about it, and found him to be fascinating. He became a teacher and then a motivational speaker, and has written a book about his life called “I Still Believe in Tomorrow.” Mike told me that one of his doctors early on suggested that he learn everything about his body after his injury so that he could teach other people how to assist him. He walked me through everything that I needed to do, including changing ostomy bags that went over openings in his abdomen. I learned how to transfer him from his waterbed into his power wheelchair, and back. I also transferred him into and out of a shower chair that rolled into a shower in his bathroom, where he kept a pet turtle in an aquarium. Sometimes I gave the turtle a few pellets of food. Mike did a lot of things for himself, using adaptations. For example, he had a handle on his brush so that he could put his hand through it, instead of gripping it because he didn’t have the dexterity. He brushed his own teeth, and washed his own face. He had other adaptations around the house, so he was able to use a computer and lock his own door. I learned so much from Mike and he told me that I deserved better than I had in my current circumstances. He empowered me.

As time marched on, I grew through my experiences — many of the more enriching were connections with caregiving. The people I worked with taught me a lot about life, resiliency, perseverance, patience, and optimism. My schedule was grueling, too intense actually, but the plus side of it was having a purpose and knowing that I did, I had everything. I had a spectacular reason to live and fight!

Profession or religion?

Cristian Mihai

religion J.D. Salinger once wrote (in his novella, Seymour: An Introduction ), “Do you know what I was smiling at? You wrote down that you were a writer by profession. It sounded to me like the loveliest euphemism I had ever heard. When was writing ever your profession? It’s never been anything but your religion. Never. I’m a little over-excited now. Since it is your religion, do you know what you will be asked when you die? But let me tell you first what you won’t be asked. You won’t be asked if you were working on a wonderful, moving piece of writing when you died. You won’t be asked if it was long or short, sad or funny, published or unpublished. You won’t be asked if you were in good or bad form while you were working on it. You won’t even be asked if it was the one piece…

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