What Gives?

What givesThis time of year is always one of the most reflective for me. Having spent a few weeks before Thanksgiving thinking about all the things I am grateful for, I spend the beginning of December watching the world prepare for Christmas.

Just like when I was their age, the kids in my life are making their lists full of the latest gadgets and toys that they would like to call their own, and reminding their parents that they have been good all year. And because they are kids, Christmas is at least somewhat about what Santa is going to bring them and remembering to leave a carrot out for Rudolf along with the cookies and milk.

Many friends and relatives are searching cookbooks and the internet, planning the menu to prepare the perfect holiday meal, while also trying to coordinate how they are going to see every relative this season. And everyone is busy, trying to get it all done. Last minute presents to buy. One more card to write.

I know myself well enough to know that I don’t do well with stress like that, and for my own sanity, I try not to get caught up in the hustle and bustle of the season, even though people who can manage to pull off all the details like that have my utmost respect.

There is an ongoing struggle in my life that has been with me since I was very young. I haven’t yet figured out how to feel okay about it. Because I am so dependent on other people to meet some of my day to day needs, I worry that all I do is “take” and that none of my relationships are equal. Since that is the case, I spend a fair amount of time thinking about what I can give.

If I was a billionaire, the list might be different. Giving a whole lot of stuff to the people in my life isn’t really an option for me, at least at this point. But I know the value of a smile when I am having a less than stellar day. I know how much I appreciate it when someone looks me in the eye and takes the time to acknowledge what I am saying. I try to do the same. Often, I share with my caregivers specific ways that I feel respected so they hopefully can do those things as they work with people with disabilities in the future. And if a friend happens to be going through a hard time, I do my best to check in and offer to listen. I’ve been known to send lots of emails and messages to people I care about wishing them a good day or saying something that allows them to chuckle. It’s also important to me to say thank you when I have received some help that I have asked for.

The last time I went inside to get food at McDonald’s, I took a few dollars from my purse and bought lunch for a guy who was there. Who knows if he was homeless? I didn’t ask. But he certainly appreciated the gesture. And even though I didn’t know his story, I felt better knowing that whatever he was going through, he wouldn’t be hungry for a few hours. All of that may not be much, but I hope the effort makes a difference to some people.

One of my favorite quotes is from Edward Everett Hale, and I have mentioned it on this blog before. from Edward Everest Hale is an American poet and historian.

I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.

Typically, the first few weeks of December are stressful for most of the people in my world. For my caregivers, classes are winding down and finals are just around the corner. I wouldn’t go through that again even if someone paid me. Other friends of mine have little kids in Christmas pageants and who have classroom Christmas parties at school, as well as the endless baking and wrapping of gifts they do at home. And in years past, all of that stress has meant that sometimes people are harried and a bit short with me. This year, I will slow down and I will have as much patience with them as I can muster. I will do my best not to react negatively.

And as I ask them how I might be able to help I will also ask myself one important question.

What gives?

 

 

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Spring will come

 

Lorraine and Leah by the peach tree

Leah and me under the peach tree a few years ago.

When I went to Home Depot several years back and bought the peach tree that is now planted in my front yard, I was told that it would take many years before that tree would produce edible peaches. I didn’t care. I’ve enjoyed watching it grow, and I know that eventually, there will be lots of fruit to enjoy. The thought of homemade peach cobbler and peach ice cream made with the peaches I picked off my tree makes me smile. And so I don’t mind waiting.

In the spring, there are some pretty blooms on that tree. I have several pictures of myself and my service dog sitting underneath it on a sunny day, the pink flowers dancing overhead. The flowers don’t last too long, and they give way to budding leaves that grow and last all summer. One of my favorite activities on warm summer evenings is to water that tree. There is something so satisfying in knowing that I helped to get the tree what it needed so that it can grow bigger and produce the fruit that it is supposed to produce.

When I looked out the window this morning, I noticed that all the leaves on the tree are gone for the season. We have had some recent nights with some high winds and the leaves just couldn’t hang on. But the tree is still there. And it is much bigger than it used to be. Even when the coming months get cold and snow buries that tree to the point I can hardly see it, the tree will remain, waiting for spring when it can blossom again.

The last few months have been some of the hardest of my life. In my almost 32 years of hiring and managing caregivers, I have never had a season like this one. Some people I’ve hired have gotten sick to the point that they cannot work for me. Others have gotten better jobs with benefits that I just can’t compete with. Some have had school and family issues take up significant amounts of their time. And some have worked for a few weeks and decided that being a caregiver is simply not what they want to be doing right now.

All of it means that I have had to step outside of my comfort zone and do things independently that I never thought I could do. It also means that I have spent a whole lot of time lately alone in my house and in some of that time I have been scared for my safety.

One thing that adds to the issue is that the agency that was supposed to start in the middle of September is still squabbling over paperwork with the company that does payroll in terms of Medicaid funds paying for my caregivers. Without going into all the boring details, both the agency and the payroll company have strict policies that they follow, and those policies are in conflict. While they try to work it all out, I am the one who is living without caregiver support, and because of my balance and spasm issues, I have trouble getting myself into bed. I usually sleep in my wheelchair these days. It’s not the most comfortable thing I have ever done, but I make it work because it is necessary.

Several times per day I remind myself to take the day focusing on one thing at a time, dealing only with what is right in front of me. Otherwise, I would get totally and utterly overwhelmed. I don’t get everything done that I want to these days, but the basics are covered and my service dog is getting everything she needs, including being showered with love and affection, like always. Our bond is what is keeping me grounded.

Just like the peach tree that grows in my front yard, I am on a journey. The wind and the rain are never pleasant, but they help me to grow and hang on. This is all part of the process, and I am aware this is just a bad season. There was a quote I saw on Facebook recently that said: “If a flower dies in a garden, we look at changing the environment, we don’t blame the flower.”

I recently hired two new caregivers and I have three more interviews scheduled for this coming week. I am in the process of rebuilding my caregiver team. I will get to where I want to be. Because I know that when there are several people working for me who understand what I am about, my life just blossoms.

Spring will come again.

And eventually, my life will be sweet.

 

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Radical Gratitude

GratitudeIn the last few weeks, it seems like several bad days have attacked me all at once. I am once again incredibly shorthanded in terms of caregivers, and for various reasons, some other issues have become intense for me. All of it has been hard. And, when bad stuff happens in my life, it is easy for me to feel discouraged and even hopeless sometimes.

I am a big believer that it is okay for anyone to feel what they feel. For me, shoving down an emotion has never been effective. So, I have spent a fair amount of time in the last few days sitting with the overwhelm and letting myself cry it all out. The thing is, overwhelm has never been a comfortable emotion for me to experience, and in the midst of feeling it, I tend not to have good interactions with the people around me. Because of lots of things that have happened in the past, I have learned that when I am in that space, it is best for me to spend time alone so that I can process and work through what I need to. Overwhelm is never a feeling that I want to experience for too long. And I never want to take out on other people the issues that are mine to deal with personally.

Anyone who knows me well knows that in the last few years I have become very interested in personal growth.  I ask myself questions often like:

How can I increase my self-esteem?

How can I have better relationships?

How can I communicate more effectively?

How can I help others around me feel more positive when interacting with me?

How do I become more of the person that I want to be?

I spend a significant amount of time reading books, watching videos, and receiving training in order to get various answers to those questions, and then I take time to sift through the information and figure out which techniques might work best for me.

Since I started this process, I have acquired some tools to help me answer all the questions above. I tap and use affirmations just about every day.

There is another concept that I just heard about recently that really appeals to me. I call it radical gratitude.

The concept is this: It’s pretty hard to be sad and grateful at the same time. It’s difficult to be angry and grateful at the same time. Most people would find it challenging to be overwhelmed and grateful simultaneously. So, when something negative happens in life, take as much time as is needed to be sad or scared or angry or hurt or whatever the case may be. But then, in an effort not to stay stuck in the negativity, make a list of reasons to be grateful.

Now I know that it can feel impossible to make the mind shift to a place of gratitude when you start from a place of negativity. That is where the radical part comes in.

When was the last time you were grateful that you had access to running water all the time?

When was the last time you appreciated you had electricity or a roof over your head or enough food in your refrigerator or for the many pieces of clothing that you have the option to wear? When was the last time you appreciated that you could see or hear or breathe without assistance or communicate freely with other people?

In my case, I asked myself in the last few days if I could be grateful that I had caregivers the caregivers that I did for as long as they were with me, and for the many phenomenal caregivers I have worked with over the years. I also spent some time being grateful for the good people and relationships that I have in my life, even though I feel misunderstood by some of those people in this moment. I have also taken time to pat myself on the back for stepping out of my comfort zone in terms of my independence, in ways I never would have dreamed of if I had a full team of caregivers surrounding me in the last few weeks. I am emotionally stronger now than I would have been if this situation had happened a few years ago.

I’ve heard it said that at any given moment, anyone can find five things that they can be grateful for.

Please understand that it never my intention to minimize anyone else’s pain or to make light of any issue another person may be struggling with.

I just know that in the last few days, when I have shifted my focus to gratitude, even if only for a moment, the heaviness of what I am going through has decreased a bit. And little by little, the overwhelm has given way to various situations feeling slightly more manageable. That is a good thing.

Being grateful during the hardest of times?

I know. It’s radical.

 

 

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Life Goes On

life goes onThe show was groundbreaking for its time. Life Goes On premiered on September 12th, 1989 and lasted four seasons, with the last show airing on May 23rd, 1993. The story was about the life of a typical family. What set the show apart was that Corky, the oldest son, had Down Syndrome, and what made the show unique in my opinion, was that the actor that portrayed Corky, has Down Syndrome in real life. The actor’s name is Chris Burke.

I was in the middle of college when the show began, but I usually took a break from studying every week to watch it. What impressed me most was how the show tackled the rawness of living with a disability. Corky struggled with feeling misunderstood, wanting to be one of the crowd, and often with being left behind in terms of what his sister was doing socially.

I could definitely relate, and over time, most of my college friends could too. I had several conversations after the show was over about how Corky had many of the same challenges that other teenagers do. And that was probably the point that the show’s creators wanted to make. I was a big fan of Life Goes On.

A few years later, I had the opportunity to meet Chris Burke at a disability conference held in Lawrence. Being brand new to my job, I was nervous anyway, but the nerves increased significantly when I realized I had the opportunity to meet someone who I considered to be a pretty big star. It happened in the hallway of the conference center, during a break between sessions. Suddenly, I saw him as he was leaning against a wall and I made my way over. “Hello, Mr. Burke,” My wavering voice was brimming with formality. “My name is Lorraine Cannistra. It’s an honor to meet you, sir.”

He didn’t hesitate. “Hi, Lorraine. My name is Chris. I’m glad to meet you as well. Tell me a something about you.”

For the next few minutes, we had a wonderful conversation. I told him about my cerebral palsy, my new job, and my desire to challenge negative perceptions about disabilities. He asked questions about my family and where I attended college as well. He made me laugh as he autographed my conference program, and as I turned to leave, he said: “Hey Lorraine, congratulations on your new job.”

Over the next couple of days, I witnessed him having similar conversations with many other people and he was always a perfect gentleman. Even when he was in the middle of a crowd of people.

Chris Burke had a major impact on me the day that I met him. He reinforced the idea that all of us are similar and that it is beneficial to focus on what brings us together instead of what separates us.

Recently, I watched a video on CBS news about a trend in Iceland. The pregnant women there are encouraged to go through genetic counseling, and if it is determined that the fetus has Down Syndrome, women are given the option to abort. Most of them do so. A nurse in Iceland who assists in abortions who was interviewed said that she did not see what she was doing as murder. Instead, she was eliminating suffering for the baby with Down Syndrome and for the family. As you might imagine, people with Down Syndrome are starting to fight back. Helene Fien, a 21-year-old woman with Down Syndrome and Autism, this is what she said in her testimony to the United Nations:

“A test that checks for Down syndrome is being used to kill all babies with Down syndrome. In Iceland, Denmark, and China, not a single baby with Down syndrome has been born for seven years. Seven years! The goal is to eradicate Down syndrome in the future.” She urged the UN to stop administering the test. See the full testimony below.

http://nation.foxnews.com/2017/05/30/woman-down-syndrome-addresses-united-nations-i-have-right-live

What disturbed me as well is that, according to the same story on CBS news, 67% of babies with Down Syndrome are aborted in the United States as well.

I have often said that I believe in my soul that disability is a difference and not a weakness. If we start to think that it is okay to eradicate any disease or disability on the basis of a perception of suffering, where is it going to stop? Does somebody with a bad back not deserve to live because they might not be able to do the same things or have the same quality of life as someone who doesn’t have a bad back? This is a very dangerous precedent. I cringe to think about where it could lead.

I would be willing to bet that the vast majority of people with disabilities in society will tell you that they simply play the hand that they have been dealt in the best way that they can.

Because, even with a disability, life goes on.

 

Posted in Ableism, changing perspectives, Disabilitiy, Down Syndrome, Getting to know people, Look Beyond, negative perceptions, Television | Tagged , , , | Leave a comment

Welcome to my World

parent and child holding handsTo the parents of the child just diagnosed:

Hi, I am Lorraine. These days I am a writer, blogger, and die-hard Astro’s fan. Over the years I have perfected my chili recipe and I like to make cinnamon glazed almonds at Christmas. My friends are scattered all over the country, I have sung solos at numerous weddings, and the launch of my first book is only a few months away. I am grateful for more things than I can count, but especially my disability.

Welcome to my world.

It is totally understandable that you are grieving right now. The change in your family dynamic. The lost expectations. The life you knew that was so comfortable and familiar. The range of emotion you are experiencing at the moment might be all over the map. Anger. Fear. Sadness. Confusion. Overwhelm. Take all the time you need to feel every bit of it. Doubts and questions will come in waves. And the unknown can feel completely encompassing.

As an adult who is living with a disability, I can tell you that your journey will be different than most. But different is not good or bad. It is simply different. There will be ups and downs. Joys and sorrows. Agony and amazement. And each journey, whether it includes disability or not, is unique. You will learn incredible lessons.

My disability has taught me to slow down. To notice the little things that sometimes get overlooked. To celebrate small accomplishments. To realize that it is a big deal if I do something successfully that I could not do yesterday.

My disability has helped me to be more tolerant than I think I would have been without it. Since I don’t like other people to judge or make assumptions about me, I put effort into not doing the same with others. It is important to me to accept everyone around me just as they are.

My disability has made me intolerant of injustice. I will cry “foul” with most people who treat me “less than” and I won’t sit still when I or the people around me are being treated like they don’t matter.

My disability has helped me to use my voice. I have been known to advocate for what I need or the needs of others like me. Sometimes loudly. Always passionately. And I won’t give up until there is a resolution to an issue I am facing. People have told me more than once that the most frustrating thing about me is that I won’t go away. To me, that is the ultimate compliment. 🙂

My disability has made me unafraid of the medical community. I will listen to what my doctors have to say and I will ask questions. Then I will say what I think. Since I am the one living with my disability, I am the one who knows what is in my best interest and what works for me. The medical professionals that I respect and go back to are the ones who understand that I know myself well and it makes sense for us to work together.

My disability has enabled me to experience things and to meet people that would have never been part of my life otherwise. Some of my biggest mentors were other people with disabilities. Not knowing them or having them share their wisdom would be a big loss for me.

My disability has taught me that I am a survivor. The road has not always been easy and I have faced some challenges that I thought were too intense. Coming out on the other side has required me to look outside the box, to look for creative and unconventional solutions. On most days, my biggest motivation is my inner “I can do it!”

One suggestion would be to love your child ferociously. Help them to feel it and know it at the core of their being. Even so, tell them several times a day. There will be those around you who will never understand, and out of their ignorance, they may treat you or your child badly. From the person who totally ignores your child and pretends he or she is not in the room to the person on the other end of the spectrum who magnifies your child’s medical flaws and makes them feel like a freak show at a carnival. People who don’t get it can also live anywhere in between. There are times when the only antidote for people who are clueless is a really good self-esteem. And a sense of belonging.

As soon as you can, include your child in the goals and plans for the future. What does he or she want to physically be able to do? What does he or she not mind having help with? Is he or she okay with not doing everything that he or she is physically capable of? Please include your child in that decision-making process. Ultimately the outcome will affect their life individually.

My other suggestion is to make sure your child’s life is about more than disability. Allow them to laugh and play and take a day off from therapy once in a while if they can. Enable them to pursue hobbies that bring joy to their soul.

There are times when my disability can get in my way. But most of the time I am grateful for it. I wouldn’t trade my circumstances. I love the life I live, frustrations and all.

Welcome to my world. It’s a pretty wonderful place to be.

You can do this. I believe in you!

Lorraine

 

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Remember the Progress

progressIt was a practice that was living up to its name because I certainly wasn’t improving. That day on the track I couldn’t make anything work. My body was just not in synch with my chair. The wind was almost blowing me backward and I was having trouble staying in my lane. Much effort was put into getting it all together and on that day it just wasn’t going to happen. After more than an hour of disastrous laps, I vented how I was feeling to one of my coaches. “I can’t do anything right today, and my times are a mess!” I wailed. “At this rate, there is NO WAY I am going to qualify for the national competition this summer! What is the point?” The thought of quitting everything I was doing in sports was so close it scared me spitless.

My coach was quiet for what seemed like a long time. “Lorraine,” he said gently, but in a voice that made me listen. “I know today’s practice has been hard for you and on days like this, it seems like nothing will ever go right again. But if you keep working and giving this all you’ve got, eventually you will get where you want to be. It’s on days like this that it is good to remember the progress. A few months ago, your time in the 400 meter was about twenty seconds slower than your average is right now. Six months ago you didn’t think you would ever get the hang of using your track chair. When you first started racing, pursuing national records in your track events wasn’t even on your radar. You had a less than stellar practice today, but don’t lose sight of where you have come from. Take a few minutes to breathe. Feel free to go home early if you need a break right now. But as you feel the frustration I encourage you to also remember the progress.”

*************************************************************************************
A few days ago, a caregiver and I set out to run some errands. Cash some checks. Make a payment on my Target card. Get a haircut. Grab some lunch. There was nothing to make me think that this day would be anything but typical.

Since there is a branch of my bank in Target, we went there first. I went up to the teller and let her know I had some checks to cash. She told me to put my bank card in the machine on the counter. Doing so is usually a bit out of my reach. The cord attached to the machine isn’t long enough to make it to my lap and the machine itself is bolted to its spot. Therefore I usually have a caregiver swipe my card for me. And that usually means the rest of the interaction is between my caregiver and the teller. It’s understandable since my caregiver does what is necessary to complete the transaction. But a few days ago, the particular teller who was there never stopped asking me questions. When she had money to give me she looked me directly in the eye as she did so. Then she wished me a good day.

When we pulled in the parking lot of the restaurant we had decided on for lunch, a man who must have been the manager asked us if we needed his help getting my wheelchair out of his car. We declined, but I was so impressed he thought to ask. Not many people do that.

When we went to the place I go to get my haircut, a customer that was waiting took the initiative to open the door for us. The woman who usually cuts my hair was not available so one of the other stylists asked me if I wanted to wait for my regular hairdresser or if she could cut my hair. I was grateful she gave me the choice and I opted for her. She made polite conversation with me during the entire process. When it was time for me to pay the bill, she pushed my wheelchair to the counter and she asked me what way I wanted to face and how it would be easiest for me to sign the credit card receipt.

The whole experience made me think. I spend a lot of time writing about situations where I am not treated respectfully. I think it is okay to point that out. But as my caregiver and I were running errands the other day, there were numerous interactions where people could not have been nicer. And they were back to back.

I’ve said often that I long for a world where everyone is always treated equally. Society isn’t there yet.

The next time I get frustrated because somebody treats me “less than,” rather than let the anger marinate all day, it would probably be in my best interest to take time to breathe and remember the progress.

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Take a Knee

When I first heard about the new program, I was psyched beyond measure. The place where I was receiving physical therapy had set up a gym in part of their space, and they were inviting people who received services to work out at a reduced rate. After going over my budget, I signed up. Although I wanted to get my core stronger, which was going to help with my transfers, my primary goal was to figure out a way to bend my knees. Doing the latter would mean that I could get myself back into my wheelchair if I ever fell, and if I could bend my knees there would be a greater chance that I could put my socks and shoes on by myself. Bending my knees would mean more independence for me. Once my membership dues were all paid, I signed up to work out for the first time. Transportation was arranged. I was working on getting into the “athlete” mindset before I left on the designated day when the phone rang.

Since I was in a different part of my apartment at the time, I listened to the message a few minutes later. “Hey, Lorraine. This is xxx from yyy therapy program. I noticed that you signed up to work out in our new gym tonight but we have a policy against people with disabilities working out by themselves, so I am canceling your appointment. Have a good day…”

What? Was this a joke?

It never occurred to me that I wouldn’t be able to work out on my own. Various weight machines were the same I had used in high school. In my workout, I hadn’t planned to do anything I wasn’t certain that I was capable of. I had signed the same liability release that everyone else did but it wasn’t enough. Unless I had somebody with me, I was told when I called back, I wasn’t welcome to use the facility. And nobody had mentioned this policy before they had taken my money. There wasn’t even a conversation. I had simply been informed that I would not be allowed to do what I had paid to do because I had a characteristic that was beyond my control. This wasn’t the first time I had experienced true discrimination, but it does not get any less degrading or dehumanizing over time. Injustice leaves you with an emptiness that is cold, heavy and hard to carry. It’s like a broken heart that you just can’t mend.

The letters I wrote the therapy place went unanswered for more than two months. They ignored me until I mentioned I was considering contacting the Lawrence Human Rights Commission because this policy was illegal under the American’s with Disabilities Act. I got my money back about ten weeks after I got the phone call telling me not to come. But the refund didn’t make me feel better. To my knowledge, the policy has never been changed. Situations like that one occur in my life to varying degrees at least once or twice per month.

For the last few months, I have been trying to process and figure out how I feel about the movement started by Colin Kaepernick in 2016 about athletes taking a knee during the national anthem. I don’t believe their doing so is disrespecting the flag or what it represents. In fact, I read that Kaepernick began kneeling instead of sitting during the anthem out of respect for the military.  A quote in my Facebook feed recently put it like this: “Saying that athletes kneeling during the anthem are about disrespecting the flag is like saying that Rosa Parks didn’t sit at the back of the bus because she was protesting public transportation.”

Instead, I believe that by kneeling during the national anthem, these players are calling attention to the fact that America today is not what it was intended to be.  The America that the military is defending is not supposed to be riddled with racial inequality.  The second paragraph of the Declaration of Independence clearly states. “All men are created equal…” It’s a principle this country was founded on and yet not every one of its citizens is treated equally.

I will never know what it is like to be a person of color who fears for my safety during a routine traffic stop. I will never know what it is like to be persecuted for my religious beliefs or be the target of a hate crime. But I have experienced discrimination and been in the presence of people many times who whole-heartedly believed that they were better than me and they, therefore, thought it was okay to treat me “less than.”

I would not wish those things on anyone.

Do I support Colin KaepernickColin Kaepernick and all the other athletes who choose to “take a knee” during the national anthem? You bet.

Because when I had an opportunity to work on bending my knees, it was taken away from me.

 

 

 

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