HOW TO COPE DURING DARK TIMES

I AM WORTH TO SEE WHERE THIS LIFE BRINGS ME

–MARIE W.O.W.C.P.

In my last blog, WHEN IN DARK TIMES, I wrote about being in a dark place in yourself, which leads you to a dark place in life and how it feels to you and your loved ones. It came from someone (me) who has been in dark places in life mentally, which leads you to put yourself in a physically dark place for some time. ( NOTE TO READERS, I did go to school for human services; however, I have not worked in the field for years. It was due to how life has thrown me a curveball, and my health has had ups and downs. What I write about is all based on personal experiences and my opinions. I’m hoping that sharing my experience will spark something in other people who will give them the idea to start to open up to a family member, friend, or medical professional. If you are in a very dark place, please seek out a medical professional, or please go to National Mental Health Hotline ) 

When you’re in a dark place, you’ll encounter many different emotions and questions. For me, the most significant feeling I encountered was anger. I wanted to be angry at the world, but I was angry at myself in reality. The two questions I faced were: Do I want to change? And how do I want to change? After answering these two questions, I started to think about seeing a mental health professional. 

When looking for a mental health professional, everything you need is on the web. The first step you want to list the main topics you need help with; when looking for someone, you want someone who will fit these topics and other needs you will need to work through. I took the first step by going on the web for mental health professionals. I was on the web and stumbled upon Counselor Find | NBCC. Once I went on the site, I was able to put in the area I live and what I was looking for in a counselor. For anyone who is looking for a mental health professional finding the right fit can be challenging because when meeting a counselor for the first time can be very vulnerable but, at the same time, very fulfilling when you find the right one.

Once you’ve chosen your therapist, there’s a getting to know you period, which takes about a month or two. Once you’ve decided it’s a good fit, you’re ready to begin the work. Some of the stuff I have explored with my therapist are:

  • What are coping skills, and how do we build them? 
  • How do you develop a coping skill?
  •  How do we use them? 
  • Why are they so crucial for anyone, especially when you have a disability? 
  • Is the coping skill essential for everyone? 
  • Do all the coping skills work for a person every time they need them?
  • Can coping skills be both healthy or unhealthy?

Coping still would be my entire force. People have always told me I have good coping skills. I always had excellent coping skills but the skills I always used to help me overcome the cp; were never about overcoming life without a disability. Due to my disability, it used to be challenging to express what I felt without getting physical or vocal to myself or others. 

When I found the right fit for a mental health professional, we started the journey of picking the path we would go. We started working on the most crucial chapter in my journey, coping skills. 

WHAT IS A COPING SKILL?

A coping skill is a skill that a person comes up with to help themselves with a challenging situation/issue. Coping skills can help us in many ways, but there can also be coping skills that can do the opposite of what we are hoping to achieve. The point of using a coping skill is to affect a person positively. An excellent place to store all these coping skills is called a mental toolbox.

What is the mental toolbox? ( please see NEVER GIVE UP)

One of the most effective coping skills for people is to breathe. When you are frustrated or upset, the first coping skill to use for anyone is to breathe, take a deep breath and count to five while moving around or leaving what you are doing until you can cool yourself down. At this point, I use a mixture of breathing and picturing stop signs in my head. The word “STOP” has four letters; with each letter, take a deep breath in, then after you spell the word, blow it all out. After this, you should start to feel relaxed. Having this technique is the foundation of my toolbox. 

HOW DO I DEVELOP A COPING SKILL?

A coping skill is a problem-solving skill. Knowing how to use problem-solving can be a challenge to many people. 

I feel coping skills should be among the topics you and your Counselor should discuss after establishing a relationship. A coping/solving skill is something I think is a learned behavior that is developed over time. I have always had excellent coping skills due to my cp; I have to use problem-solving to make up for situations I lack due to my cp when it comes to a real-life problems. 

Life was always about overcoming the cp during my growing up. When I should have been developing coping skills for real-life situations, I was lost within myself because I didn’t want people to see me as a cp person. None but myself saw me as a cp person; people just saw me as me. They saw my personality; they saw how I was going about my life. The only one that saw the cp stopping me was me; when I look back on life, I know the joy and memories I had, but I also feel all the shame I felt about who I was with cp, but I realize I know now that I was the only one feeling this way.

HOW DO I USE COPING SKILLS

Coping skills will be used in various ways with every person, and every person will have a variety of coping skills. What I have in my mental toolbox may not be what you have in yours, and a coping skill works to your needs. For example, a lot of people enjoy using running/walking as a coping skill, which now, at this moment in my life, I can do, but it wasn’t like that for many reasons; one was my health wouldn’t let me before, and two was I didn’t live in an area that gave me the freedom to walk. When I couldn’t or didn’t have the freedom to walk, I learned to use coloring or knitting as a coping skills. As time went on, I started seeing some light. I started using social media as a coping skill. I started searching social media to find out How others felt and lived with cp. As I slowly started to open that door, I saw that there was nothing to be ashamed of because I learned that everyone felt the way I did at one time or another. There are many ways to have good coping skills; you have to see what one feels and fits for you. I can go on and on about what is in my toolbox because, with every dark time, I will use the ones in there, or I might add a new one. Only you can create what goes in your toolbox.

Why is coping so crucial for anyone, especially when you have a disability? 

Having coping skills is crucial for mental health, healing, and life. It’s just that when you have a disability that limits movement, coping skills can be vital. Coming from someone who can get (me) impatient waiting for life to happen because I have to live a modified life for my whole life due to my cp, anyone can contact a little impatient. Impatientness is just a part of life, but when you have a life that realizes upon others for help, having patience is something I work very hard on every day. Having good coping skills is a must to fill the time you need to occupy, so this is where the copy skills can help. (Exp I’m waiting for a ride and get to the place, I have to be early or get done before and have to wait for a ride at some end I’ll bring a book to past the time.) Then there are the days I get frustrated and want to do something but can’t, so I have an arts & crafts box that I can pick out something to do. 

Are there healthy and unhealthy coping skills? 

As I described before, some other healthy for me enjoy cooking and cleaning the house, listening to music, writing, meditation, or talking to friends. Some unhealthy coping skills can be drinking, smoking, or anything you know will harm you.

There are many times in life that we can be in a dark place for one reason or another, but as long as you take that first step of saying you want to make your life better, that might be the hardest step to take. It might seem complicated, but it will be advantageous in the long run if you stick to the right track.

Writer note: I wrote this before the last two mass shootings. While I’ll have some mental health issues due to my struggles with my disability, I can keep them under control. Many people don’t seek the help they need for various reasons. While I truly believe mental health has a lot to do with what is going on, I talked to someone who doesn’t believe this and their opinion today. We must consider that mental health is only a part of what is happening here. It’s excellent to leave a free country and have free speech, but I believe that comes with great responsibility. We go way too far with social media; people speak their minds. They have every right to, but close-minded people can be hard to reason with; It’s everyone’s right to have their thoughts, fells, and opinion, that’s the way to make the world go round, but if we want to fix this we have to start to listen to each other and meet halfway to resolve these issue.

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WHEN IN DARK TIMES

I talk openly about how I felt about having cp during dark periods in my life on my blog. I have gone through the ups and downs that life puts on people with cp. At the end of all of my ups, downs, and depressions, the only one that lost out was me. Yes, there are times when you find yourself in a dark place, but that’s life. Disability or not, humans all find themselves in dark places at different points in life. Just because I was in a dark place about my cp many times in my life doesn’t mean I won’t be there again about the CP or something else. As much as I hope I won’t be in a dark place again, it’s life, and I will. The real challenge is how to find my way out and build myself stronger. 

Being in a dark place or depression, whatever you won’t call it, is the easy part; teaching yourself how to find your way back out and rise above it is the most challenging part of what I have learned in life. In every season of your life, there will be stressful, bad, tough times, and more. It’s the power you give yourself to overcome these times. I have learned people can stand by you, but the only one that can help you find your way back is you, 

How do you fight your way back? Finding your way back is the hardest to do is an understatement; I can tell you what I did. Every person has to learn what works for them. I can only listen to a person and share my experiences: it may work for you, it may not. I believe my place as a mentor is to support the person I’m helping but let them do what feels comfortable for them and hope they will do the right thing for them: this is what it means to be a mentor to me. I have learned in life that you can lead a person to the path you think will work for them, but they have to want to take it. If they’re going to walk it, it can only be their choice.

The most challenging thing for the loved ones is to let the person go through what they have to do, and the only thing the loved one can do is hope they will do what is right for them. Having been in both places in life, needing to change, and watching others need to change is not easy on either side.

Watching a loved one needing to change makes you feel helpless. But going through it yourself is a challenge because you need to choose whether you want to make yourself a better person or keep doing what you were doing; this is a question only you can answer once you choose the path you want to travel that when you start to see the light from the darkness. Stay out of the dark is an everyday challenge for everyone, but this is not only having the right professional help and building something. I like to call it your mental toolbox (  Please read to understand the mental box NEVER GIVE UP.)

The other after a friend read this, she asked me, “ How do I not end up in a dark place again with the challenges that life puts in front of me.” It will always be a challenge for me or anyone to stay out of a dark place. If you find yourself in a dark area because of life now and then, remember to use the mental toolbox. Each time I fall into a dark place, I add to the toolbox because I learn needed skills to make it through the dark times so I can see the light again.

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HEALTHY WEIGHT EQUAL MORE INEPENDENCE (THE SUPPORT PROJECT)

WE CAN’T HAVE TEAMWORK WITHOUT SUPPORT

MARIE W.O.W.C.P.

As you all know, in my series “HEALTHY WEIGHT EQUAL MORE INDEPENDENCE,” For the next four to six months, I will be working on a healthy lifestyle for myself and putting my money where my mouth is. A healthy lifestyle will include healthy eating, physical and mental workouts. Beginning each day with 20-30 minutes of taking in what the day ahead looks like and ending the day being thankful for what the day brought to me; is also part of HEALTHY WEIGHT EQUAL MORE INDEPENDENCE. When you take off some of that mental weight that is weighing you down, that also makes you more independent.

I never thought of this, but the last few days have been rough on my mental state. I spent about two years straight doing mention, but life just got in the way, and I have not been doing any meditation. There will be four parts for those who would like to join my healthy lifestyle. 

1. Your mental health: once we have a clean mind, the sky’s the limit. 20 to 30 minutes on both days to clean your mind. If you choose to do so, keep a journal of what you’re grateful for and what you weren’t so thankful for during the day. Also, start the day on a positive note. Set a daily intention; why is this intention vital to you. Write down how you met the intention or what got in your way from meeting your intention. Always give yourself a 5-10% lea way in your day. You can’t always be 100% on the mark, but you can sure try.

 2. Your Physical health: Keeping physical fitness is a crucial part of staying healthy for anyone: in fact, physical fitness makes up 20% of a healthy diet. Health physical work can be just about anything that will get your heart up for at less 30 mins three times a week, if not more. A workout routine doesn’t always have to occur in a gym setting. As I have said many times before, a person with cp uses three-five times more energy than an able body person. So our everyday activities, from getting out of bed to going to bed and everything in between, can feel like a workout, and a daily exercise of strengthening is a must for a cp person. (this I’m awful at because I find it boarding, but I need to be much more disciplined with my strengthening.) For a person with cp strengthening, first thing in the morning is more important than our first cup of coffee. Whatever workout you choose to do, always much sure you make time for your physical health because if we don’t, then it genuinely limits our intents as a person with cp.

3. Your healthy eating: When trying to keep a healthy lifestyle, 80% of the healthy lifestyle is the way you eat; this is the part of leading a healthy lifestyle I struggle with the most. I enjoy eating; I use it to fill the void of loneliness. Eating is a friend to me. When I have to vent about life, it can be easy to talk to a bag of chips or a pint of ice cream than a friend at times because you think that bag of chips or pint of ice cream won’t tell you what you should do or how you should fell. The things in it problem better to talk to that friend, listen to them for 60 minutes, forget about it, eat the chips or ice cream, gain 60lb, and spend the rest of your life take off. Keeping the weight off is the primary goal; it’s trying to keep you independent; even if you can’t be fully independent, keeping your weight down will help those who have helped you.

4. Your Support team: I will never tell a person what healthy eating diet they should be on; everybody’s body type is different. I just tried to go on the same healthy eating diet as my friend, and it worked for her but not me. She lost 30lb, and I gained 10lb; the thing is, I knew what worked for me but did I do it? No. I thought it would help to go on the same healthy eating plan, but in the end, what works more is not only picking the method that works the best for you but the support you call from someone in the boat as you whether you choose the same healthy eating plan as you or not. 

Having support for anything in life can make a big difference if there are people out there that would like to join me on the HEALTHY WEIGHT EQUAL MORE INDEPENDENCE LIFESTYLE (THE SUPORT POJECT) Feel free to email at mariewowcp@sixlegtoindepencelifefromawalk.com, and maybe we can start a healthy, weight-equal, more independent lifestyle team/support group.

Let’s live an independent lifestyle while we support each other.

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HOPE, FAITH, LOVE, AND GOD ( HIPE&FAITH)

 Life can be challenging at times. When life makes you feel this way, you have two choices: sit in the darkness, drow deep inside yourself, or dig your way out of the dark. It will take time, but you will get there if you choose to dig yourself out. I have learned that if you want something in life, you will set your mind to terrible enough that you can do it. I may not know everything about CP or life, but I’m living and learning as I go with an open mind. When you have a cp, you never know minute by minute what the cp will do to you. As many know, there are different types of cp. Each cp has its unique challenges, and everyone will have their unique challenges; I learned that the only way you can get through all the challenges is through HOPE, FAITH, LOVE, AND GOD. Once I found hope and faith, it gave me the strength to get through those dark, challenging times in my fun, unique, and challenging modified life.

Having cp can be a very lonely and depressing life, but life without cp can be very lonely and depressing. It’s just that when you have cp, It will own your body, and you will own your mind. Having something else in the control of your physical body can be very cruel, and unless you know what it’s like living in a cp body, you have no idea. You can be in a group of people with cp and still only understand your cp; they can understand some of their pain, but you will never understand what it feels like to have a body you’re not entirely controlling. Understanding why I felt this was a whole another idea. It wasn’t until I started to understand the cp gave me a power that not too many understood or disagreed with me. The one thing that I hated within myself gave me the hope that I needed to see the light—many people believing in GOD, to show them the way out. For me, it’s my love-hate relationship with GOD. I don’t fully trust, so I found that if I trust in the weakest part of myself (CP), just maybe the weakest part of myself would become the most vital part of myself. (some people would disagree with me on this, but it’s what works for me.)

As much as HOPE, FAITH, LOVE, AND GOD go hand in hand, no more than of the four go together as hope and faith. You can’t have one without the other. If it weren’t for hope and faith, I would not see the light under all the negative I felt about living with a body that won’t listen to me; I have to listen to my body: this is the one thing about life I don’t like the most about cp.

Other than having all that psychological/mental depression everyone goes through as a teen, it was until my late 20’s that I remember feeling my first time drowning in the darkness of life. Many of these things aren’t talked about in the cp community. One of these things is how there can be an emotional component to cp. I remember feeling this all my life at different times, but nothing more prevalent than in my middle to late 20s. My sibling and my friends were moving on, getting out of that early 20S, college years/young adults, and turning into adults. They were starting to set up a foundation for who they would be in life and what they will be for the majority of life (such as finding careers, finding their life partners, and starting families, but emotionally, I felt like a teenager.) I remember feeling this way at a younger age, but I never realized what it was; I never really thought about the cp and how it held me back from what I should have been doing. 

Looking back on my experience in life at those times, I had them just in different ways than my peers or a person with a different kind of cp. I had friends; I had a social life, but the only thing I saw in my mind was that my life wasn’t like what I saw on TV or in the movies. I didn’t have that car; I didn’t have the guy to call my own. I never had that hope and faith to know I did have it, just different from my peers and something different than what others with cp or others with disabilities only wished they had. I lost hope and faith that I would ever have this, so I put myself in my head. By putting myself in my head, I built myself this world that I got so deep in that I couldn’t bring myself back. When I thought I got myself out, I took what was in my head and tried to make it a reality. When doing this,l would see myself trapped inside my mind somewhere and know I wasn’t in the real world; I was in the world that I made up to take away from the pain of not being like others. In the end, it turned out I was only hurting myself and the people around me.

I didn’t see or understand that I was living a life I should have been living, just in a modified version—the things I should have been doing at those ages. I was going to public school, in classes that you take in school, doing activities I should have been doing, having friends, going out, having a curfew, getting into trouble as I should. I was doing more than others with cp or other disabilities. I never had the hope and faith to know I did have all that. I felt within myself that I was missing out on life instead of feeling hope, faith, and Gratefulness that I was living a more active life than others in my situation.

In many respects, my cp held me back physically than mentally; I had held myself back because I filled my mind with many fantasies and dreamed about life. After all, I didn’t want to live the reality that life had given me. I should have hope and faith that I could have done everything like others, just in a modified vision. I never had the hope and faith in myself that I was able to make my dreams and still be a person with a disability. 

I felt genuinely lost in life. When I felt lost, my coping skill was to run away mentally because I could never run away physically. Running away psychologically can be worse than running away physically. The mental hurt I gave myself is a struggle to move past daily. I force myself to keep active so that I won’t find myself back in those dark places.

I spent years getting help and still get help. During the early days of getting the service, I worked on getting the skills I needed to help myself realize how I could get the skills to find the light in all the darkest I felt. At this time in my life, I felt very vulnerable to whom I wanted to be. I saw myself with two choices: to live my life in the dark place I was in and destroy myself and the people around me more than I already was, or do I succumb to the help that my loved ones helped me get. I picked number two. I worked hard to learn what I was doing wrong and find the skills to help me achieve the understanding, so if I found myself in those dark places again, I would know how to help myself find my way out. 

It took several years to understand what I felt was ok but what I was doing to myself and my loved ones around me wasn’t ok. As time went on, that darkest to light. The lack of hope and faith turned into Gratefulness. I was grateful because I found the weak part in myself and turned it into a strength that people don’t feel can be their strength, but after what I felt in life, I chose to look at myself and chose to pick the weakness part of me and turn it in the strongest. 

I know not everyone understands that they could do what I did, but all I’m saying is that if you find yourself in a dark place, find a life raft inside you, and cling on to it, it might lead you back to the bright side. My life raft was the one thing I saw as a weakness.

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HEALTHY WEIGHT EQUALS MORE INDEPENDENT PT3

In the “HEALTHY WEIGHT EQUALS INDEPENDENCE SERIES, ” in part 2, I wrote about starting a new medicine to loosen my mouth muscles, which in turn are helping me eat healthier. I’m enjoying all the nutritious choices. In this edition, I will talk about choosing the proper diet for myself; maybe it will make others think before selecting the right nutrient plan.

Let’s start by saying it can be fun and more manageable if you partner up with a friend to keep healthy. You have someone to lean on when you’re having a tough time or celebrate when you have a significant big improvement when doing this. Everybody has different body types, nutritional issues, and needs when choosing a health plan that is right for you. 

If you follow my blog, you know it’s about life with cerebral palsy. I have a few PCA (Personal Care Attendants ), and one of the most significant areas of my daily living skills (DLS) we work on is healthy eating. One of the ways they help me is by doing meal prep and having things right on hand, so when I’m having a bad or busy day, I can grab them and 

( heat up. Doing this helps a lot when it comes to snacks because they wash and cut all my fruit and vegetables (note my house is full of zip lock bags and Rubbermaid), so I can grab and go.

Around a month or two ago, one of my PCA and I started one of those fade diets; while it worked for her, it wasn’t for me, and I gained rather than lost. With all my knowledge about eating and dieting right, I didn’t think about how every person has to pick a health plan that works for them. Yes, it is great to have someone to throw a healthy lifestyle with, but at the same time, you also have to keep in mind that each person uses energy differently.

As I was doing the same diet as my PCA, she lost weight, and I felt more sluggish and heavier. Wondering what was going on with me, my mother said I was gaining weight. We talked about what I was doing wrong and how what was happening was I was storing fat because I wasn’t eating the way I should. It started making me think I couldn’t lose weight, but who I am, I never give up. 

All these years of trying to eat healthily, never down on me; I was never looking up if was a special nutritional diet for people with cp. People had always looked at me differently when I told them I couldn’t eat this. Thinking; I only said that because I didn’t want to try anything new, they didn’t understand, and I didn’t fully understand either. In all my years researching cp, I never honestly looked into the dietary needs of someone with cp. I started to. I always knew why I had difficulty eating, chewing, and swallowing from the weakness of the cp but never indeed took the time to understand why. There is a lot to read about cp and nutrition: After spending a year understanding my mental health as an everyday person and a person with a physical disability. (note: cp is not a mental disability at all. However, it’s challages people with cp face in life that may affect a person mentally because your physical body will limit you in life. While mentally making you think that you might not achieve things in life. When a person with cp can achieve and feel, they put their mind. I can go on and on, but that is another subject)

In my next area of cp, I need to educate myself about nutrition; something about me that you should know is that when I genuinely quest things in life, I try to educate myself. Having cp can be a big challenge for me, so I try to educate myself, but I will be open-minded because the cp may affect me one way, but for someone with cp, it may affect them in another way.

When you have cp, you will burn up to 3-5 times more energy, so you need to eat more protein, grains, greens, healthy fats, and calcium. 93% of the cp community will have issues with eating and will benefit from nutritional counseling. (Cerebralpalsy.org). As I discover, going on a fad health kick won’t be much good for someone with CP. Now it’s back to square one for me. As much as I need to lose weight, it’s all about eating healthy and knowing what will fill me up and what will just become empty calories.

See you next time on “HEALTHY WEIGHT EQUALS INDEPENDENCE.”

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A FEW GOOD HELPING HAND’S PART 2

In “ A FEW HELPING HANDS PT ONE” (A FEW GOOD HANDS PT1), I shared my journey to applying for a PCA (personal care assistance). When picking a PCA, you first need to sit down with yourself and list what you wants and needs. You don’t want to give up the independence you fought so hard for. You want to work together as a team by having two sets of hands, legs, and eyes. You want your PCA to help with the extra challenge while still keeping up with the things you can do independently. Whether you have a PCA for five hours a week or a hundred hours a week, any help gives you more energy to store in your energy bank. A person with cp can use up to 3-5 times more energy just to do the most simple task such as getting out of bed, going to bed at night, and everything in between.

When people hire their PCA, they will have different requirements. In my previous blog, I stated that I live in a state with the PCA waver. Under the PCA waiver, your home is a business; you’re in charge of hiring and firing. I’m also in charge of keeping track of all the hours. When I haven’t met my hours for the week in the program, the leftover hours go to the following week. If there are hours left at the end of the year, I lose them and start all over. Keeping track of the hours is a weak area of mine, and I need to improve. I never thought I would have a significant role such as this in life. It can be stressful to have this kind of responsibility in life, but I enjoy and feel good about this.

As I keep enforcing in all my blogs, every person with cp has different needs; they also use energy levels in different ways and at different speeds. Suppose you think of a car gas tank. Different cars use gas differently, like people with cp using their energy. Some people with cp can use their energy faster than others. When putting together your team, you want to pick people who can meet your needs. Some people choose one person to feel comfortable. However, I need more of a person to work alongside me, while others might need to have them help with more unique needs. If I need someone like this, I can understand why those people want to keep to one or two PCA. I know that I might need more help from a PCA at some point in life, but I need more of a companion for now. A companion/PCA is a little different than just a PCA. 

When my companion/PCA is with me, they’re there to help me increase my independence instead of taking my independence away. If you are a physically disabled person or know a physically disabled person, you know the word “INDEPENDENCE” means everything. Having to bring someone into my private life to help that isn’t my family made me feel vulnerable but knowing that I’m under the PCA wavier helped a little. ( The Personal Care Assistance (PCA) Medicaid Waiver, administered by the Department of Social Services, pays for the costs of a personal care attendant to assist individuals between ages 18 and 64 with a physical disability with their Activities of Daily Living. “ADLs”).  

(Personal Care Assistance (PCA) Waiver | MyPlaceCT)\

As time goes by, I’m sure I will need more help. For now, the needs that I’m meeting are the ADL.  As you age with cp medically is not indeed known what cp will do to a person—every person with cerebral palsy experiences pain and aging differently. One of the reasons that might be because people with cp to age earlier is that we use 3-5 times more energy then others. Another reasons I believe that just because we have cp doesn’t negate us from getting other health issus from just being human such as inherited health issues. It would be nice to just say all you have in life is just cp but life doen’t work like that.

Now that I have explained how having PCA has improved my independence and also has given me more independence. Here are seven things I look for in a PCA, and these are my requirements for another person who might be looking for something different depening their needs.

 The first requirement I look for in a PCA is to defy the word “TEAM,” when spelling the word “TEAM,” you want neither you nor the PCA to misspell it by putting an “I” in “TEAM.”  Years ago, I took a group dynamics class; On the first day, the teacher came in saying, “THERE IS NO I IN TEAM.” When he came in and said this, it stuck with me, and I have taken this to be one of my mottos in life. This requirement is essential because I know I have to rely on people for help, but that doesn’t mean you have to let the PCA take over and just sit there and shout orders. That isn’t what a PCA is for; I believe if you and your PCA spell “TEAM” the right way, you will only increase your independence.

 When having a PCA, it’s an intimate relationship; it can feel awkward or embarrassing to have someone helping you with your physical and emotional parts of life; THIS WAS A BIG CONCERN before I even applied and knew about the PCA waiver. Having someone, I didn’t know coming into my space and helping with the intimate things of my life and not having a relationship. Once they explained the PCA, I felt more comfortable having someone come into my space to help me. I would tell people just keep in mind the intimacy side of having a PCA; for some people, that can be awkward on each side: for you and the PCA.

After reading the manual about hiring a PCA, one of the things is how not to get too personal with each other. It can be very hard not to share your life. You and your PCA become like your own family because you spend so much time together. You share things that you might not share with others; this is a gray line because, in some cases, the PCA can be the only person you have in your life that you see regularly and the only one you can trust. When you have such an intimate relationship, it can be hard not to share each other’s life stories, or why you or the PCA are having a hard time; on the other hand, you may get a PCA that only does the PCA work for a living, so they know how to separate themself from that kind of relationship.

Emotion/physical intimacy is one level of a PCA;  client relationship.  My number two requirement of a PCA relationship is that when you are interviewing them get to know each other on a level where you feel safe. It can be tricky for people with disabilities to have an emotionally intimate connection with someone. They may not have a stable home life or previous PCA that had emotionally or physically abused them in the past, and it might be hard for them to warm up even getting close to a PCA. Make sure the person you are interviewing knows how you have been treated in the past by others. Remember that you are the boss, and you are the only one who knows your comfort level. On the other hand, you also must respect the PCA’s comfort level. They might not feel comfortable doing a specific task.

My number three requirement is to work off both our (PCA and mine) strengths and weaknesses. Remember working with your PCA is teamwork. You need to work with the PCA to help you gain independence, but at the same time, your PCA may have never worked with your disability before, so you might have to teach them about your disability. One of the things you want to explain to your PCA is how you would like to be treated in public, they are there for you, but at the same time, you don’t want to make that visible for the whole world to see. I asked my PCA to please treat me like we are friends when out for the day with you. Always ask if I need help and never assume I do. It might take you and your PCA a while to adjust to this requirement, but this situation will be a learning experience for everyone.

As I said, I’m lucky enough to have PCAs that have been my friends all my life, but even then, on many levels, they don’t know or understand what my day was like as a person with a disability. When they were just friends, that is what we were, they knew and understood I had cp, but we would never honestly talk about how my cp affected me on personal leave. They saw the strength I would have on an outward everyday basis, but they never saw the inner private struggle that a person with a disability has. It takes a particular person to understand that; on the other hand, the closest person to you may never understand what kind of strength it takes for someone with a physical disability such as cp  to be able to live life on a daily bases.

My number four requirement is trust/companionship. These two things will take time no matter if you know the person or not. The bottom line that when it comes to any relationship trust/companionship doesn’t come easily to anyone. Like I said before, the person your working with could have been emotionally/phycally abused by other PCA, or it can be their first time with a PCA because its their first time their own (like me). Just like in any relationship, this step will time. 

My number five requirement is respect. The PCA needs to respect you, and it is critical for you as the employer to respect your PCA. There will be a time when you might have to talk to them like a boss but always do it respectfully. Also, appreciate the PCA andnot put too many demands on them. Yes, their you, but at the same time, treat them; with respect

My number six requirement is that when we are out in public, unless I say something, don’t make it known that they are my PCA unless I feel comfortable with where we are and whom we are talking to—I would like the PCA to understand how to make small talk out in public. After living on my own a whole year before I got a PCA, I got into a routine of walking around my area, sitting in a coffee shop, and making small talk with people I met at around and  continue doing this while having a PCA with me. Most of the people I talk with know my story, so I am comfortable. Having a PCA is not only for helping with my daily living skills but also for companionship. The companionship will take time no who your PCA is because companionship will be based on respect and trust.

My number seven and finally, the requirement will just be to have fun and be comfort with each other because, in the end, you become family. There will be, times that both of you have a terrible day with each other, but that is to be expected when you have a relationship such as a PCA and a client relationship.

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WHY I CHOSE TO MOVE FORWARD WITH CP

Having a disability such as CP is a challenge, but not the end-all. It has its ups and downs just like everyone else. Some people choose to see themselves as just their CP, while others prefer to see their CP as only a part of their identity. During times of struggle, my disability made itself known, especially growing up – I was the girl that turned the town on its head, finally pushing it to enforce the ADA laws of 1973 and 1990 – an accomplishment that really makes you stand out. It’s ironic, when you are that young, all you just want to be is just a regular kid. As much as my family tried to make my life as “normal” as possible, there were still many times that I just felt like I was my disability.

Attending public school was a challenge for me. At the time I was growing up the ADA laws had been passed but it was a struggle to have the education system enforce them – as a result, during the 80’s and even the early 90’s the school building failed to meet any accessibility needs. This was the moment I started to feel like the odd kid out. My family had to dig in their heels and fight with the town to help secure the education I needed. 

The next battle I had to overcome was people’s ignorance. In my experience, ignorance is the most challenging part about having a disability. When I grew up, people like me were just starting to be active in the community.When I think back on everything I went through, I truly feel like I’m onet of the first generations of the disability community that had the right to integrate with regular society. 

Surprisingly though, in my earliest years, I’d have to say the most difficult person to teach was myself. From a very young age, I have always feared being just another number. There are many reasons why, but I’d have to boil it down to the fact that it was hard to find others to relate to, and there wasn’t much interaction with “regular” folks. When I did have interaction, I was at the rehab center getting therapy at the time I didn’t even realize there were different types of CP. I even thought if another kid had another version of my illness I’d catch it like you’d catch a cold. 

Another challenge for me was I had always had contact with people who had been so pessimistic about their disease. I was in such a vulnerable state myself that I didn’t want to add their negative energy to mine – at times, it was hard to stay positive. 

I consider myself lucky, my family has always been blunt with me about my condition. I have since met so many others whose families either did not know how to discuss their diagnosis or who would flat out not broach the topic. This lack of communication would lead to the child not getting the help they need to be independent or push the child to flee and find the independence they craved. My stubbornness held me back at times in my life because I didn’t like that my life would be more challenging than “ normal.”

It wasn’t until I was faced with another disability (Psoriatic Arthritis) that I started going down more of a black hole in life. One night I found myself in a pool of tears at that proverbial fork in the road and did not want to deal with my disabilities or fall deeper into the black hole. I have felt I was lost forever, but I somehow found that lost strength and determination that had gotten me through most of my life on this particular night. I had to make the choice of do I find out what life would be like with PsA or do I find out what life would be like as an adult with cp.

As a child my parents were in charge of my care but as a fully grown adult with a disability that only affected my body not mental able I should start taking control of my own life. I knew with the right medical care and treatment that the PsA will go away but like it or not the cp was a part of my life from birth and will be here to the day I live this world.

I look deep inside me, fond that straight and determination that I had from the day I was born but somehow lost for a time in my life. I looked up United Cerebrel Palsy up on the net,as a child My parents and I were part of one for support and I thought maybe there would be a program for adults with cp. I found the closes UCP by me and e-mailed them to ask if they had a program that I might fit into, I got an email back saying they had and independent adult program that I awould fit me. 

The first time I went I was afard but I soon relized they were like me and posatvie like I always hope to meet. Soon after I became close to them and made friends.By going to UCP unlocked a door in me that I never thought I would have unlock in my life. During the eary years at UCP I was trying find out where I fit within the cp commutty but I also was felling lonely because I wanted also be a normal adult and be able to do normal adult things but at the sametime.

I also felt I was in several parts. There was the women side, the cp side and who I was and what I wanted in life but I never knew how to put them as one. Once I started see that people in the group was living indepanet life and I thought I could be like that. My biggest problem was I always put so much gult on myself for felling like I wanted to be just an average person but how could I do that without the cp getting in way this was the reason I felt like I was in so mant parts.

I started get to know many people in the group on different leaves. There was one I felt more close to because as we started talking I started to see the individual had a lot of the same felling as me, we became friends. As we got to know each other the friend showed me that just because we have cp there nothing to fell guilty about, we can live life just like everyone else. The friend showed me how to use social media to learn about cp more. 

Once I start understand some about I should let the cp empower me and not let me hide within myself, I started a social media group of my own name Work Out With Cerebral Palsy. At first I was just talking about working at home,in the gym, or at pt to keep ours cp body health and active. Soon people with cp, family members of people with cp and people in the cp field was starting to following me and asking me questions. As time went on I began to see Work Out With Cerebral Pasly became a mantra for my life. Over time I turned Work Out With Cerebral Palsy to W.O.W.C.P.  

Over the past 8 years life certainly hasn’t been easy for me but my mantra of W.OW.C.P. has kept me going. W.O.W.C.P  means no mater if we are workout in a gym, pt or just going thought everyday life as a person with cp it’s a work with every breath we take to the big things in life.  Its a work out just to show the world we have just as much right to be in today’s world as anyone. It that our wrapping my like different then other people wrapping.

Understanding myself with cp has taken years, a lot of up and down, and I graduated from the school of hard knocks to learn about myself. I will never be entirely comfortable with who I am but just like anyone else

when you unwrap, you’re wrapping your just as human as anyone else.

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UNDERSTANDING THE POWER OF LABELS PART PT2

SOMETIMES THE LABELS JUST GET IN MY WAY

-MARIE W.O.W.CP.

 As humans, we all have labels, so what is the most significant- how can a person make one more important than the other. We as humans force on too much on labels that we forget to enjoy life. Each person has their opinion/idea of what label is more important to them. Some think it’s their sex; some feel it’s their ethnicity, then some people go all their life not knowing what wrapping/label they fix into when the truth is the one label we all have is human. Then some people have to change their wrapping to feel more comfortable with who they are. 

I have always had a problem: what side of myself should I stand up more for my woman side or disability side. These aspects of me are significant; neither no more important than the other.  I’m also a daughter, sister, aunt, niece, friend. The list goes on and on, so shouldn’t all labels be of the same significance as the others. It can be so hard to find my way in the world when according to today’s world, what kind of wrapping a person is covered in is what makes them valuable or invaluable to the world.

When I sat down to start to write this blog, it was going to be about how I find the month of March to be unfear to who I am as a human and as a person with cp. Due to that, social media has taken up a large part of life and has made many things in life significantly more important than other issues. Being a woman is an essential part of me, but my cp is also necessary.  In a world that puts so much on a person, wrapping, we lose the meaning of what a person is and the two things we have in common, no matter who. We all start as humans, and we all bleed red; this should be important.

 March 8th is known as International women’s day I understand it’s essential for many of us, but the bottom line is that I’m a human; being a woman is only one part of who I am.  The number one thing is that I am a human with many things that go into me. It can be so hard for me to fight for the right to be placed not just because of my woman label but because of my disability label. I like to say I’m a human canvas with many things that go into who I am. Yes, being a woman makes up a large part of who I am, but I have many other factors.

I have always had a problem: what side of myself should I stand up more for my women’s side, disability, or women’s side. These aspects of me are significant; none no more potent than the other.  I’m also a daughter, sister, aunt, niece, friend. The list goes on and on, so shouldn’t all labels be of the same significance as the others. It can be so hard to find my way in the world when according to today’s world, what kind of wrapping a person is wrapping makes a person valuable or invaluable to the world.

I’m not dumb; I know life isn’t as black and white as this post might sound. I also know there is a lot of hate in the world, but if we look at the whole pitcher, the two things the world has in common are we are all human canvas, and we all bleed red no matter what we wrap ourselves up ourselves in.

While I  will always question my role and wrapping in life, I know that I’m valuable in this world and I know I have a purpose in life. There just days that life makes it more challenging to see what that is. Its not that I have have prove myself because I’m not my wrapping. As I get older I try to not let people’s words hurt because they can’t see pass my wrapping but at the sometime I’m human just like everyone else have the same emotions as everyone and as we all know words can hurt worse when there only base on the wrapping.

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MY FUN & CHALLENGING LIFE

Disabled or able-boded, it’s their choice on how they choose to live their life. It has taken many years to know that I am not my disability; my disability is only a piece of me. Many people look at the label and don’t honestly look at what is under the label. Out of all the people I meet and everyone who has thought I was just my label, the one person I get upset this the most is looking back at me every day. 

In a past blog, I wrote about understanding my labels (https://sixlegtoindependentlifefromawalker.com/2021/10/05/understanding-how-my-labels-empower-me/). In this blog, I wanted to explain how living with a label might be challenging, and it is also fun to let it be and enjoy all that life gives you. Whether you have a label or not, life will always be a fun challenge. I’m lucky enough to live my fun and challenging life with six legs, and it can be a bumpy life with just two legs like most people. You would think life would be steadier on six legs, but it can be more challenging, but the challenges can lead to fun also.

If you don’t know, cerebral palsy, or cp as it is commonly referred to, is the number one most common childhood disorder. It affects movement, posture, muscle, and balance. There are several different types of cp. While groups of people will have the same types, no two people with cp are the same. The cp can present differently in everyone. One thing about cp that few understand is that we are more than cp. We are human, just like the next person. When I talk about my life, I see life through my unique perspective because my life with cp is unique. Yes, there have been times in life I never wanted to be unique or run away from my uniqueness, but during the pandemic, I received the greatest gift of my life. The gift that I never thought I would get a chance to have; was to become more independent and live independently.

I took all the negative I had about cp and found a positive about life with cp, not to say I still do have bad days, but I finally understood the weakest part of myself and made it my strength. The weakness from my cp has taught me many important things about life. No matter what life hands you and the challenges that await you are only there because you can overcome them. It’s up to you and you alone you choose to rise above the challenges that you are given,

I sometimes find it’s the most complex challenge in my life. I can handle a leg broken in three places, but the worst pain comes from simple nagging pains such as a dam hangnail. That doesn’t mean the big stuff doesn’t hurt because they sure damn well do. It has taken years to find ways to let the pain have its time to be a thorn in my side, but try not to force on it as much. Then there are challenging times such as applying for jobs, looking good on paper, then going in for an in-person interview, and the employer just sees what is in front of them, not remembering what they read on the application. Getting looked for something is a part of me is sometimes challenging. I spent many years studying and training for something that I loved.

I studied human servicers with force on recreation therapy and gerontology. I worked for a few years in nursing homes, but the problem was that the elderly population I was working with wasn’t too sure about me because people with disabilities were not seen or heard from when they were younger and brought up their families. As much as I knew that was the case, it was very understandable. Then, on the other hand, it did hurt knowing I hoped to do what I love but knowing I couldn’t because of how life was back then.

On the other hand, there are many positives about having cp that can be hard to see. One of the things I think is essential in my life, as much as it can be annoying, is educating people about not just cp but other disabilities as well. Knowing I can teach one person or hundreds of people, I have taught someone that disability is just a label. I don’t think it’s as much the person unwilling to learn, but it is also about how the person that has the disability approach the person unwilling to understand you. It’s about acting kind and being natural about it, don’t feed into people’s negative about cp or disabilities. Get them to see that it’s the only piece of who you are. The positive of a disability isn’t in every person because it depends on the person and the person’s strengths. I don’t mean physical strength; I’m talking about emotional stability. It takes a lot of emotional power throughout life with any disability; what I have found is that what I lack in physical strength I make up for in emotional strength. 

It is tough to find the strength in yourself when you have a disability that weakens you physically, but if you have the love and support as I did all around you, that will help you find the emotions within yourself. As we all know, we don’t come with instructions when we are born. Some people just have it in them to look past the disability to give their child the best life possible, while others don’t know what to do. They don’t have the strength for the challenges that lie ahead of them. They aren’t showing their child they can do unique and beautiful things in life. I feel that my challenges in life are the fun parts of life because my challenges show me that I’m alive and can overcome anything in life. 

My parents could also agree on ideas and give and take pictures about what worked and didn’t. When my mom might have been afraid of letting go or pushing me too much. My dad called my mom out; if they did things in steps to get to the goal, it might have taken time, but in the end, they got me to where I needed. Then again, if my dad was pushing too hard, my mom called my dad out-this what parenting should be like a give and take. I understand I will never be a parent, which was my choice. I also appreciate every parent’s way and how they want to raise their children, and times are so different from when we grew up but just understand you need to work as a team to raise any child. Still, when it is a child with a disability, as much as you want so bad to hold them extra tight in the end, it’s not helping the child. Lastly, remember there are so many books, blogs, and people who are experts on children and disabilities, but in the end, they’re your child, you’re the parent, whether your child is disabled or not, every child is their own personal. You are the only ones who know your child’s emotions and disability due to what is best for all of you and listen to your heart, guts, and child, not just books or other people. You can consider all those things, but you will know what is best for your family in the end. In the end, if my parents didn’t do what they did, I wouldn’t be here, or if I was, I might not be as independent as I am now.

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TAKING CONTROL OF LIFE

I never thought I would be in control of my own life in all my life. As a person with cp, we can only dream that we can do half the stuff we hope to do in life. There are times in life where days can feel so challenging that we feel like we take one giant step forward, then the next day, we feel like we take ten steps back. 

When I was in my 20’s, and everyone was starting their life, finding their career, and starting a family, I still felt like I was 15 emotionally. There are many parts of life with cp that are taboo talking subjects, and I believe there is an emotional immaturity about a person with CP. When you use the phrase emotional immaturity when talking about cp, it sounds like we have some mental disability, and that is not it. It’s that when you have cp, you grow up one of two ways. One, your family loves you too much and overprotects you, or two, your family just gives up on you because they don’t want a child with a disability. Either way, they’re always some kind of emotional immaturity.  

It took me a long time to realize this when It hit me about my emotional immaturity when I started to take control of my own life but not before I went through a very dark time in life. What I did at that time in life doesn’t have to be shared, but what I want to share is that sometimes disabled or not, you have to tear yourself apart while your loved ones are watching just to put yourself back together again; this is a complex part about life because loved ones want to see you hurt. Then when you have cp, it makes it worse because your loved ones want to do everything for you, but there are just times in anyone’s life that you need to hit bottom.

During my time hitting bottom, I hated everyone around me. I thought people were doing this because they hated me and didn’t want me anymore; looking back on it, years later, I see they did what they because they loved me.

It’s been years since I went through this part, and since that day, I have worked very hard not to fall in that spot again. There are days I just want to give up and not deal with things, but I have come too far to do that to myself and those who love me.

Living with cp is a challenge, but if you are strong enough to see it’s a part of you and not the whole you, you can take control of your life.

When I talk about taking control of yourself, it doesn’t just mean knowing who you are, but it also means knowing your weaknesses and strengths, and you are always daring to walk through life. Weakness shows that you’re human, and your forces can rise above your weakness. Always dare to have the courage to get through the challenges you face every day.

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