Bad Moments…Not Bad Days

bad moment quoteIt’s no secret that things have been rough for me lately. Not only have I had to face one of my biggest fears, but I have been surrounded by it. Having to go through an agency to meet my caregiving needs instead of being able to hire people independently goes against almost everything I am about. For more than thirty years, my life has been defined by fighting for my independence and finding my voice as well as making my own choices. Because of various circumstances, going through an agency to get caregiver coverage will take some of that away.

There are times I have wanted to do nothing more than turn and run, but if I could do that, I wouldn’t have a need for caregivers. That seems ironic somehow.
It hits me hard sometimes. The loss of control. The decrease in dignity. The thought of absolute strangers coming into my house to help me with the most personal things that I do. And it’s a big deal. But it’s up to me not to make it everything.
People who are close to me know that I am no stranger to frustration and disappointment. Those things are a part of life for everyone, maybe even more so when a person lives with a disability. But bad days? The older I get the more I am learning that, for me, those are a decision.
When I get bad news or something doesn’t go the way I want it to, or something happens that is unexpectedly unpleasant, it is natural for me to feel sad or hurt or angry. And I am a huge believer in people feeling what they feel completely instead of trying to minimize it. I know that when someone feels into a negative emotion it can feel all-encompassing, and the moment seems to last for an eternity. The thing that I need to remind myself is that negative feelings don’t last forever and a bad moment doesn’t have to equal a bad day.
When I look around at all that is happening in the world, so many people are affected by things that are out of their control. Hurricane Harvey hit the neighborhood where I grew up with a vengeance, and many families who were a part of my childhood lost their homes, their cars and most of their belongings. It hurts my heart to think about people I knew when I was younger, people I care for, dealing with all of that. And then I see Facebook posts from the same people in Houston who are incredibly grateful for the sack lunches they received from strangers during demolition days and the groups of volunteers they had never met who pitched in for hours helping people who needed assistance. Are they in a bad situation? Yes. Did they have a completely bad day? I don’t think they would say so.
Because of some glitches with Medicaid rules, I technically have not had any caregivers this week. (The agency can’t start until Monday.) Have there been moments I have been scared spitless? Yes. Am I spending more time alone than usual? You bet. And that has been proven to be not a great thing for me. But in the last few days, I have put effort into doing some things for myself that I have never attempted before. Some crashed and burned. Some worked out. I would never have known about the latter if my current circumstances were different.
My friend Andrea lives in Lee’s Summit, about 45 minutes away from me. I have seen her much more often than usual lately because she is checking on me whenever she can. She keeps up with my laundry and does my dishes when she is here, all the while reminding me in many ways why we have been friends for more than twenty years. That has been a good reminder that not everything in my life is changing. I need to know that. Eric, who technically stopped working for me last Sunday, comes by for a bit in the evenings just to help me into bed. It’s something he doesn’t have to do. He does it anyway.
Do I still get overwhelmed with the idea of working with an agency when I vowed I would never do so again? Indeed. I have sobbed and screamed and cursed the unfairness of the world and the fact that I am so dependent repeatedly. At other times, I have invited my heart and my soul and my mind to be open to the possibility that working with an agency might be a good thing for me.
There is also something to be said for looking the deepest fear in your soul square in the eye and showing it who is boss. If I can do that, at least eventually, I will feel unstoppable.
I am certain that I am not yet finished processing all the emotion around this situation. I will be okay with the bad moments to come. And I will do my best to keep a simple truth in the forefront of my mind.

Bad moments don’t have to equal bad days.


Posted in can do, caregivers, choices, Disabilitiy, Facing a fear, Finding Your Voice, Independence | Leave a comment

I Want Spectacular!

spectacularIt is something I vowed that I would never do again. There have been too many bad experiences in the past. And besides, it takes away my power.  Some of my humanity might even be at risk. I have hired and managed my own team of caregivers for more than 31 years, and I said I would never again use an agency to meet those needs.

For some people, agencies are a perfect solution to getting some needs met without having to rely on family members or friends. For those people, it works to have someone come in for a few hours per day, get done the tasks that need to be done, and then the professional caregiver goes on to the next client. I can see that.

My situation is a bit different. Because my disability prevents me from driving, I can rarely leave my house on my own. My caregivers are the only people I see in a day about 90% of the time. That is not a bad thing and I am in no way trying to elicit sympathy from anyone. Since that is the case, it is important to me to have a personal connection with my caregivers. I don’t mean that I want to be close friends with them. I mean that I want to make the decision as to who I hire. I want to be able to train whoever works for me to do things in my house the way I want them done. And I want a bit of flexibility in the schedule for both my caregivers and me in case unforeseen things come up for either of us; the times they arrive at or leave my house can be tweaked a bit. Working through an agency means I can’t do any of those things. And those are the kinds of things that add so much “goodness” into my life.

I have also said this a few times before. I am okay with the fact that I am a vulnerable adult, but it needs to be my choice as to who I am vulnerable in front of. That is the only way I can maintain my dignity and individuality.

Since I started managing my own caregivers, the biggest challenge is that the position is incredibly temporary. Students going into health professions tend to work for me in order to get some experience to put on their resume. Other people work for me because the schedule can be worked around classes and other jobs and such. Lots of people work for a semester or so and move on to other things. All of that means I am looking for new caregivers on a fairly regular basis. I know all the places to advertise that have gotten good results in the past. I have even learned how to look outside the box with my advertising. Nothing has been working lately.

In recent months, one of my caregivers got a full-time job elsewhere. Another got very sick and had to quit working for me suddenly. A third caregiver who worked for me last semester and was supposed to come back after the summer decided at the last minute not to return. I have had numerous interviews over the last few weeks, and everyone who I have offered the job to has turned me down.

The situation is somewhat desperate, and I start working with an agency again later this week.

The idea of having strangers in my house who I had no say in hiring is terrifying to me. I don’t want to be “just another” on a caseload. I can’t change a schedule without several days notice, and I won’t have any former caregivers around to help to train the new people in the manner I have done before. And because of the way Medicaid funding works, I will have significantly fewer hours with caregivers that come through an agency compared to the hours I was allotted when I hired caregivers independently. So many things about this situation are difficult.

Really good, well-meaning people have told me that everything is going to be okay, and I believe them.

Lots of people can make my bed and put my shoes on and sweep my floors for me. But in working through an agency I have to give up some of my freedom. And because I spend a significant amount of time advocating for people with disabilities to stay out of nursing homes, this feels like a huge step backward in my life. That is the hardest part.

Maybe this is a bit selfish, but I want the caregivers I have had in the past who take me to Sonic when there are only 15 minutes left in their shift because a chocolate shake sounds so good to both of us. Or the caregiver who stayed with me half the night after one of my surgeries because I was so sick and she didn’t feel comfortable leaving me alone. Or the caregiver who got a Christmas gift for my service dog because she didn’t want him to feel left out if she only gave one to me. Or the caregivers who pick up something at the grocery store that I mentioned I needed a few days ago, but neglected to put on the list. Or the caregiver who came in and told me we were going for a drive because he knew I had not gotten out of my house in two days. I have countless stories like that…

Those kinds of things are spectacular.

So I am making the decision that working through an agency to get caregivers is only a temporary situation for me. That is the only mindset that allows me to keep my sanity right now. I will continue to put ads up on Craigslist and and put fliers all over campus. I will continue to ask the professors that I know to announce the position in their classes. I will post information at the library and the community mercantile and continue to talk about it with members of the church that I attend.

And I will believe I will find several awesome caregivers that I can hire independently very soon.

Because I don’t want to settle for everything just being okay.

I want spectacular!


Posted in caregivers, Disabilitiy, Facing a fear, Independence, Making Changes | Tagged , , | Leave a comment

“Drop and Give Me Twenty…”

$20 billIt was over twenty years ago, and I was a “fresh out of grad school” rookie, eager to do well in my first real job. Although it meant moving from the town where I had attended college and gotten my master’s degree, a few weeks after graduation I accepted a position at Independence, Inc., a Center for Independent Living in Lawrence, Kansas. The organization served people with disabilities in a wide variety of ways. My title was that of Independent Living Skills Trainer, which meant that I helped our clients learn skills of their choosing that would enable them to increase their independence. During my almost five years of employment, I worked with people who wanted to learn budgeting skills, how to successfully use the community transportation system, effective ways to grocery shop, cook, clean, advocate for themselves and a whole lot more.

My favorite client was a young man named Todd. He had an intellectual disability, and I quickly discovered he took things rather literally. In our work together we went over skills including safety, successful social interactions, and various ways to ask people for things he wanted or needed effectively. We also spent lots of time at the grocery store. When we first started, Todd carried a list that his mother had written out and we would find the items on it in the store together. Over time, he made his own list and learned to count out change for the cashier. He made slow and steady progress. Eventually, I would simply sit at the front of the store and wait while he completed his shopping on his own. Those were really good days.

When we first started, Todd carried a list that his mother had written out and we would find the items on it in the store together. Over time, he made his own list and learned to count out change for the cashier. He made slow but steady progress. Eventually, I would simply sit at the front of the store and wait while he completed his shopping on his own. Those were really good days.

Todd and I worked together twice every week for several years. And I always looked forward to our appointments. He had a great attitude, was incredibly respectful and was always ready to work hard. Even when what we were trying to accomplish was difficult for him, like counting money correctly.

He had a part time job in the mornings at Hobby Lobby. In the afternoons, he would either work on something with me or work on a project in the computer lab of the agency. In between, he would eat his lunch in our conference room.

His lunches were epic., rivaling any gourmet meal I have ever seen. He always packed them himself. The sandwiches could have come from a deli. In addition, there was fruit, chips, raw vegetables and dip, and numerous cookies and other sweet things for dessert. He ate all he brought with gusto and flair. Sometimes he also brought snacks, in case he got hungry while he was working at the center.

One day, I was a witness when a coworker of mine passed by him as he was eating lunch in the conference room. Because we all really liked Todd, he got teased good naturedly pretty often. Upon seeing all the food laid out in front of him, this co-worker started to give him a hard time.

“Todd, if you eat all of that, you will end up getting pudgy. Now drop and give me twenty.”

It’s safe to say that Todd had never been in the military and consequently had probably never heard that expression nor any reference to it before. After several seconds of confusion turned to panic, Todd’s answer was one that I will remember forever.

In a voice that was both shaky and uncertain, he stammered, “I don’t know how, I just don’t know how, and besides, I don’t have any money.”

A classic Todd response. Totally, completely and wonderfully Todd. Both the coworker and I assured him quickly that all was well.

I must confess, I have been known to over-indulge on good food much more often than I should. And I, like Todd, am unable to drop and give anyone twenty, at least in the conventional sense. When that particular memory comes to mind, I simply make sure I know exactly where my purse is,  ready to hand over a $20 bill to anyone who might suggest it.

And I smile.

Posted in can do, Disabilitiy, Good Memories, Independence, Laughter, Laughter,, overcoming challenges | Tagged , , , | 1 Comment

Sometimes I’m Wrong

At first, I wasn’t sure what to think. In my experience, usually when t.v. shows are made about people with disabilities simply living their lives they tend to be sickeningly drippy. Think Tiny Tim meets Superman. Get the picture? Most shows I have seen tend to emphasize the struggle and invite pity instead of a portrayal of empowerment. To me, there is typically not an accurate representation of what living with a disability is actually like either in movies or on television So, when I heard that “Speechless” was going to be a show on ABC this past fall, I expected it to be more of the same.

I was wrong.

The show is about the DiMeo family, consisting of mom and dad and three kids. They live in a house that is falling apart, and on the first show, they make it known that the kids have been in six schools during the previous two years. They are continually searching for the right learning environment for one of their boys. The oldest son, J.J. has cerebral palsy. The actor who plays the character (Micah Fowler) is affected by cerebral palsy as well. His mom, (played by Minnie Driver) is a fierce advocate for her son as well as being known to be incredibly overprotective. She has disagreements with the school’s administration routinely. J.J. has disagreements with his siblings, as all teenagers do, and is sometimes at odds with his parents as he struggles for his own independence.

Some of the episodes have explored topics like being friends with other families that have a family member with a disability, how J.J. balks at “special” treatment and wants to be seen as an equal, and my personal favorite, how demeaning it is when other people engage in “inspiration porn.”

The other thing I truly appreciate about the show is that it examines the affect that J.J.’s disability has on the rest of the family. There was an episode when his siblings were curious about who was going to care for J.J. when they were grown and their parents were gone. Several episodes have touched on how J.J’s siblings resent him sometimes in various ways and how each character works through that. Particularly moving are the scenes where J.J gets to be a protective older brother in his own way; which is not typical because of his disability. But J.J. does everything in his power to let his brother and sister know that he is looking out for them.

In another episode, when J.J.’s brother asked their dad why nothing fazes him, he replied, “Because when a doctor tells you that there is something wrong with your kid and that he is not going to grow up the way you thought he was, and he turns out great anyway, you say ‘okay, what else you got? Bring it.'” That whole comment is paraphrased, but overwhelmingly awesome nonetheless. It just doesn’t get any better than that.

Perhaps the most impressive part of the show for me is the way that J.J. stands up for himself. He has no expectation that anyone else is going to fight his battles for him. In one scene, he got mad at his caregiver, Kenny, for taking advantage of all the “perks” J.J got at a professional baseball game. When J.J. had reached his limit with that kind of thing, he let Kenny know in no uncertain terms that he felt like less than a human being, saying to this caregiver through his communication board, “You don’t get to do that.”

In order to keep the show authentic and “unsappy”, the executive director of the Cerebral Palsy Foundation is on the set every week. The cast and creators of the show are incredibly familiar with disability issues in a variety of ways, and still, they are aware enough to understand that they might need some guidance when it comes to some issues. Some of the comedy, the cast admits, might push the line between funny and offensive.

In an interview about the show, Minnie Driver said, “You cannot force people to be inclusive. You cannot force them to be unafraid. You can teach them that (disability) is okay.”

When I first heard about the show, I was convinced it was going to be drippy. I was prepared not to mention it anywhere because I was taught that if I didn’t have anything nice to say I should remain “speechless.”

Instead, I am using my voice to say quite loudly: Bravo!

Sometimes I love being wrong.

My favorite scene from season 1 is below. Season 2 premieres on Wednesday, September 27th on ABC.


Posted in cerebral palsy, changing perspectives, Disabilitiy, Family, inclusion, Independence, Making people comfortable, negative perceptions, Television, The Cerebral Palsy Foundation | Tagged , , , , , | Leave a comment

Simply Inclusion…

IMG_4635I will say it repeatedly until there is nobody left to tell. A world where everyone is treated like equals and disability is seen as a difference instead of a weakness is the world I strive for. Along with many other people. It’s not going to happen overnight. And even decades after the Americans with Disabilities Act was passed, there is still a long way to go. Progress in baby steps makes me smile. This week I saw two examples of my community heading in the right direction.
Checkers Foods has been my grocery store of choice for several years. They have good produce. They always have lots of stuff on sale. And a few days ago, I learned they have an awareness about inclusion. My caregiver and I went inside to get some food to fill my fridge. Just inside the entrance, I saw something I have never seen before. It was a modified grocery cart that was built to accommodate wheelchairs. The sight was intriguing enough for me to go check it out. The basket in the front of the cart had been removed and a flat platform was in its place. Some pieces of the cart had been welded. And the access symbol was on the side. The same symbol that designates accessible parking spaces. I just love that little guy.
The result was that I could roll my wheelchair directly up to this cart, and put the groceries I wanted within it by myself. The whole thing was so much more comfortable than putting a small basket on my lap. That is painful sometimes. And with this cart I could get a whole lot more food than I could ever fit in one of those portable baskets. I was psyched. Simple modifications to this grocery cart helped me to feel much more empowered and more “just the same” as everyone else in the store. And I’ve been talking about how cool this contraption is to a whole lot of people ever since I discovered it. That makes the whole thing a win-win all the way around.
The other thing that impressed me was that I saw a guy who worked at the store watching me as I was figuring out how this cart worked. However, he didn’t approach me until I asked for his help. My guess is that he didn’t want to take away my independence. When other people have that awareness, it makes me smile big. He didn’t doubt my ability and was available to assist me as soon as I said the word. The whole experience was pretty darn awesome!
A few days later, I went to the community coop with a friend, and we decided to have a cup of coffee. After we ordered, we went to find a place to sit. There were stools available for people who could use them, and a table in the middle of the room that was completely accessible. The table had a sign on it that said, “this table is reserved for people with disabilities when needed.”
What I appreciated most was the wording. The sign did not say “this table is only reserved for people with disabilities” with the implication that nobody else was ever allowed to sit there. It also was not a table that was in the corner of the room. To me, the sign was a message of welcome. My take was that it said “If you are a person with a disability and having a low table would make this establishment easier for you to enjoy, then we’ve got you covered. But you are also one of the crowd. We will not separate you from anyone else or designate a particular table that calls attention to your differences. If you need this accommodation, it is here for you.”
Neither one of the modifications I discovered this week seemed to be a big deal. The grocery cart required some welding. The sign on the table probably was made on a computer in a matter of minutes. Both of those things spoke to my heart. They said “We will meet you where you are to let you know that you are wanted here. In my world, that kind of stuff is incredibly powerful.
I will say it repeatedly until there is nobody left to tell. A world where everyone is treated like equals and disability is seen as a difference instead of a weakness is a world that I strive for.

Simply inclusion.



Posted in Accessibility, Disabilitiy, Helping people with disabilities, inclusion, Parking Signs | Tagged , , , , | Leave a comment

A Lesson in “Parking”

bedroom parking symbolNo worries. The content of this post will be rated “G” and family friendly.

A few years ago, after numerous long discussions with Lee, my wheelchair guy, and a whole lot of soul-searching, I decided to make the switch from using a manual wheelchair around my house to a power one. There are several reasons for that. As I get older I find that the spasm in my body is becoming more intense, and my strength and balance simply are not what they used to be. All of those things combined made pushing myself in my manual wheelchair challenging, and the situation was only going to get worse as time went on. I’ve had several doctors tell me that the bodies of people with cerebral palsy tend to age faster than those of the general population.

In addition, Lee thought a power chair would enable me to be more independent, and he was right. It is only in my power chair that I can take my trash can out to the curb by myself. And a power chair means that I can get out and about in my neighborhood and on a nearby bike trail in a way that I would never be able to if I had to rely solely on my own strength. This power chair sets me up for success in all kinds of ways. It even reclines fully so that I can take a nap during the day if I need to. It’s similar to what I imagine the bat mobile would be like.

Once the power chair was delivered, there were several things I had to adjust to. There are various speeds of my power chair that are appropriate for indoors and outdoors. In the beginning, I got them confused. Let’s just say that there used to be a whole lot more paint on the interior walls of my house than there is now. The learning curve took some time.

Another thing I had to get used to is that my power chair needs to be charged every night. One cord of the battery plugs into the wall, the other plugs into the chair. I always like to keep my chair close to my bed in case I need to get up in the middle of the night or get out of bed in the morning before a caregiver arrives. Since my power chair is significantly larger than my manual one is, putting the chair in exactly the right spot while it is charging is essential. If it is a few inches too close to my bed, I get stuck and there is not enough room to maneuver my feet when I attempt to transfer. If the power chair is too far away, I can’t grab on to it in order to get myself settled after the transfer. This situation is much more complicated than it might first appear. Especially when I am training a new caregiver who is unfamiliar with how I use my chair for leverage when I am transferring from one place to another. On more than one occasion, I have fallen out of bed when I tried to transfer and my power chair was not in the spot where I needed it to be. EMT’s are some of the few people who have seen me before my hair is brushed in the morning. (Once I hit the floor in my bedroom, I am as helpless as an overturned turtle, and caregivers and I typically call 911 for help to get me back up safely.)

Several weeks ago I was explaining to an old-timer caregiver the dilemma of needing my power chair to be in exactly the right place in order for me to successfully transfer out of bed, and not knowing how to get that done consistently. She came up with a brilliant idea. She outlined a box in tape on my bedroom carpet where my chair needs to go. Now all I have to do is tell the new caregivers I train to put the front wheels of the chair next to the tape. It’s a great system. Not exactly foolproof. (I still lose my balance occasionally, but that has more to do with my cerebral palsy than the placement of my wheelchair these days.) But things are a whole lot better than they used to be.

Who knew that I would get a lesson in “parking” from one of my caregivers at the age of 48? Additionally, who knew I would be giving lessons in “parking” to the people around me so that they could do it well.

“Parking” correctly is a good thing.


Posted in cerebral palsy, Disabilitiy, Independence, Lessons, Power Wheelchairs, What some people don't think about, Wheelchair | Tagged , | 1 Comment

Go Dance!

Scott and his medalsAs a mentor, he came into my life at the perfect time.

When I was fourteen years old, I joined a sports team for people with disabilities.  It changed my life.  Because I had always been mainstreamed and up to that point, had mostly done whatever my family did in terms of activity, I wasn’t around people with disabilities much.  The exception was a few weeks at sleep away camp for kids with disabilities each summer.

When I joined that team, for the first time, I had exposure to people with disabilities who were older than me on a regular basis.  One of the athletes I met was Scott.  He was 26, has Muscular Dystrophy, was newly married and owned his own business as a graphic designer.  Instantly I was intrigued.

As the months went by and I got to know Scott, I began to ask him questions and share some fears I had about having a disability.  Could I hold a job?  Date? Get married?  Have kids?  Have a nice social life?  What is the best way to respond to people who are clearly uncomfortable around my disability?  Scott heard it all.  He listened, guided, and offered all kinds of support.  We saw each other every Saturday at wheelchair soccer practice.  We talked on the phone sometimes as well.

In one such conversation, he asked me an interesting question.  “Hey kid,” (He hardly ever called me by my given name.) “If you didn’t have a disability, would anything in your life be different?”

I didn’t hesitate.  “Yeah, I would be a dancer.”

He was not surprised, but he asked me to tell him why.

“Dancing is graceful,” I said with conviction.  “Dancers use their bodies to create beauty.  I can’t do that in my current circumstances.  A wheelchair, crutches and leg braces are all awkward and bulky.  They are functional, not beautiful.  But there is more to it than that.  Dancing is something that I can’t do, it feels out of reach because of my disability.  Sometimes I would love it if I could just let go and dance.”

In terms of sports, my passion was track.  Every day after school, I would work out with the head football coach.  Over time I got stronger and my speed circling the track increased.  Things got even better when, as the result of some fundraisers, I got a state of the art wheelchair to use when I was competing.  My favorite event was the 400-meter dash, and after my junior year in high school, the time that was a personal best for me was only a few seconds slower than the world record at the time.

In August of that year, we traveled to Michigan State University to participate in the National Cerebral Palsy Games.  They were a big deal.  It was there that I was hoping to qualify for international competition; what would be the equivalent of the Paralympics today.

Shortly after we arrived at MSU, Scott and I went to see the track.  I remember feeling like I might have been in a washing machine too long and had shrunk as we had traveled from Texas.  The enormity of the track and the stadium caused nerves to play hop scotch in my belly.

A couple of days later it was time to see what I could do.  And the nerves were so at home within me after showing up a few days before that they were probably eating popcorn and watching cable on race day.  Thoughts of the race were secondary as questions swallowed my concentration.  What if I didn’t do well?  Would I be letting down everyone who supported me?  Would the head football coach think he had wasted all his time with me?  If I didn’t qualify for the international competition, what was I going to do?  I couldn’t turn my thoughts off.  I wanted to scream simply to release some tension.

Finally, it was announced over the loud speaker that the 400-meter event would be starting soon.  Scott came over to talk to me for a minute before I made my way to the starting line.

“Hey Kid, I know you are nervous.  Don’t think about anything but the race and getting across that finish line as fast as you possibly can.  You have worked hard to get here.  Now go do what lots of people don’t think you can.  Go dance.”

For some reason, the words hit home.  By the start of the race, I wasn’t nervous anymore.  My best effort qualified me to represent the United States of America at the International Games for the Disabled.

I think about Scott often these days, and keep up with what he is doing.  We also touch base occasionally.  (Thanks, Facebook.)

And for more than 30 years, whenever nerves play hopscotch in my belly or completing a task seems like it is too far out of reach, I remember his words of advice.

Go Dance!





Posted in America, CP, Disabilitiy, Disabled Sports, Good Memories, high School | Tagged , , , , , | Leave a comment