Hearing Some Heartbreaking News is Hard

Hearing Some Heartbreaking News is Hard

Earlier this week, I received a message from a friend of mine who went to college with me. Mike got disabled from a car accident when he was in high school. The accident left him paralyzed from the neck down. He received his law degree and he worked in Chicago. After that Mike met a woman who he fell in love with and they got married. Now they have three beautiful kids. Mike has a life that any guy dreams about.

The Message

Like I said that I received a message from Mike and it has been a few years since we talked. Life is always changing and getting busy. We get into a hole and it seems that we are always digging and never get out. We think of somebody who we haven’t talked to in a while and we say tomorrow we will contact them, but tomorrow comes and we forget to contact them.  

When I received the message from Mike, I was so excited to read what he had to say, and then tears started to roll down my face. He wrote a painful note. He has liver and colon cancer and was asking for financial help so his kids will be taken care of all during their childhood. The oldest looks like she is five or six years old.

Why Why Why

Last few days I have been trying to figure out why would God would allow this to happen to him. Mike always wanted to have kids, and now they have three beautiful kids. He got cancer. The question is why and all I can say is that God has a plan for everything. Sometimes it may be filled with joy and sometimes it is really painful. We can get angry at God, but how does it help? It doesn’t. It only makes it worse.

Just Look at Mike

Being disabled, you can be mad but you also turn that anger into something positive. I am not saying that pain, loneliness, and depression are good, but if you look at the bright things in life, you will be happier. You have to pick what you want in life. 

Look at Mike, after his accident, he could have stopped enjoying life because he can’t walk or even move his arms at all. He didn’t let it stop him from getting a law degree, getting married, and having kids.

Have Faith

If you are a person with a disability and are disappointed about your life, please have faith in yourself and know that you can have a better life if you work at it. I am not saying that you WILL have a better life. It just depends on how motivated you are. You might have a lot of let downs but have that let downs to fuel you to do something awesome in your life. 

Knowing Mike, I know that he will fight his cancer with all his might because he is a fighter for sure. If you want to help Mike and his family, they have a GoFundMe page to raise money for his kids. Their goal is $100,000. Yes, that is a lot of money, but it is possible to reach if all of us chip in. I am including a link to the page to help out. The world is one huge family and if we help one another out, this world will be a better place. 

Apple IOS 13 and Disability Features

Apple IOS 13 and Disability Features

People are Apple lovers or Android lovers. With me, I am an Apple lover and write a lot about Apple. IOS 13 and iPadOS will be coming out within a few months now. I am learning a lot about what new features they will have for people with disabilities. The most powerful change is that they are moving the accessibility features to the top level in settings. Right now, it is under the general section. I think that this is a huge change because they are saying that people with disabilities are very important to them. 

Dark Mode

I am really excited about the dark mode. You are asking what dark mode is. Well, it is when the background is dark and the text is white. When I first heard of this, I thought whatever no big deal, and then I watched a few videos on it. I could see the text clearer so I really think it will help me to read things easier. When I went to Apple a few times lately, I talked to several guys who were on the beta version of IOS 13 and they love it a lot.

Voice Over

Another feature that is being enhanced in IOS 13 for blind people is voice over. This feature allows a blind person to run their finger over the screen and detect different things like text and buttons. In this version of IOS, they made it to detect really small objects that it didn’t detect before. Now blind people will have more accurate representation of the screen.

Shortcuts

This next feature is not for people with disabilities per se, but it will help them so much. Shortcuts is an app that Apple bought it two years ago and in this version of IOS, they really enhanced it. What Shortcuts does for you is allow you to write a task or several of tasks that you do every day and attach it to a button. For example, the guy at the Apple store, made a task to text his girlfriend and say that he is on break and can chat with her for a while. When he is on break, he just has to press a button and the text is sent. 

You are thinking this is not going to help you but let me tell you what I am planning to do with this technology. Like I said many of times that I live on my own and have personal care assistants helping me throughout the day. I have someone who gets me up in the morning. If they don’t come on time, I am in trouble and I can’t use my iPad in bed. What I am planning to do is to buy a button that works with HomeKit. When I press the button, it will trigger a task to text all of my aides that I need help. I heard from many people that this will work. We will see what happens.

The Sky is the Limit

With Shortcuts, it can trigger complicated tasks which is great. I am finding that smart technology is wonderful when it works. When it doesn’t work, it is hard to find the problem but this technology will get a lot better as the time goes on. Yes, I am worried when it doesn’t work when I am in bed, but I have to try it.

Apple IOS 13

As a person with a disability, I am really please how Apple is trying to improve the lives of people with disabilities. Another thing that is coming this Fall to the Mac is the ability to use the Mac with only your voice. It is built right in the operating system. When you have a third-party software, you might encounter many problems, but if the feature is within the system, it is a lot better.

Ios13 is coming this Fall although I would like to use the beta version of it, my iPad is how I communicate with the world. When it is buggy, I can’t be productive like I want to be. If you know more accessibility features that will be in IOS 13, please tell us in the comments below this post. 

Look Beyond Facial Distortions

Look Beyond Facial Distortions

We all say that this guy is good looking or this child is so cute. These comments make a person feel good about their selves and they long to hear it. But there are times when people say things that are really degrading to a person. I found a great podcast called “Advocate Like a Mother”.  The host is a mom who has a boy with Down Syndrome and she interviews moms who have children with disabilities. This episode that I heard was with a mom who has a daughter who has facial distortions and many other illnesses. She needs nurses around the clock.

Overcoming Fears

When the parents take their daughter out, they get people looking at her and say how could they keep her. She should be dead and among other things.  At first, the mom did not know what to do because it was all new to her. So, one day she had enough and it was time to start living and start advocating for her daughter. Slowly she started to do interviews and is starting to give talks. 

Doing the Right Thing

In South Carolina where they live, they had a bill coming up for a vote to decrease funding for children who need nurses around the clock. A group asked this mom to talk to the state government about her daughter. She was scared but she said yes. That started a community following her on social media. 

Her social media has grown to a point where she is getting requests for different equipment for different families around the world and her followers are giving money for the equipment. She sends them to the families for free. So, she is doing a lot of good for people, but she is also getting a lot of hate mail.

Twitter

The mother is using Twitter for her main platform to get her message out. She noticed when she tried to report the bad comments that she was getting, Twitter didn’t understand what her platform was. There was no platform for parents with disabled children so when she tried to report something, she was asked the same thing over and over. She got Twitter to add this group to their app, and now she is trying to get the other social media outlets to the same. It will happen sometimes she said. 

My Own Facial Disortions

I thought about this for a few days now and have a few thoughts that I would like to share with you. I make facial distortions especially when I am stressed or uneasy. Last Saturday night I went to a festival and my body got tight so my mouth started to distort. I don’t know why. So, I get looks and rude comments too. It hurts bad, but you can hide in your home or say I have one life to live and I will do my best.

Look Beyond the Body

As I think of it, this mom is like my mom. They were scared what they needed to do, but when they got the momentum going, nothing can stop them. It is the same with everything – when you find your passion in something that you believe, you cannot be stopped. I have to be passionate in something that I am called for otherwise I cannot go forward in it. 

Life is a bowl of cherries but sometimes it is so cruel. We have to educate society about our lives with disabilities. I am not saying that people will change their attitudes to us. Facial distortions can happen to anyone so people have to look beyond the looks into the person’s heart. The people with facial distortions are human beings who deserve the respect and the love that everyone wants.  Do you think that we should look beyond the physical body and really look at the person’s heart? 

Best High School Reunion Ever

Best High School Reunion Ever

This past Saturday night I went to my 30-year high school reunion. Yes, I am that old. I went to it not expecting too much because it was in a big group, I feel I am left behind because it is too noisy. 

Talking

When I got there, it was in a small room in an Irish pub, and I thought ok this would be a short evening. So, I found a place to sit. One by one, people were coming up to me and talking to me. Some of the conversations were short, but most of them were long and interesting. One surprising thing was that was the long conversations were with people who saw me in the halls but never had classes with me.

Chris with two friends at  their  high school reunion.

Friends

When people said that they saw me in the halls and wanted to know me, I thought what if we had email and social media back then, what would it be like to have more friends? In my head, it started a chain of questions. I am not going to tell you what the questions were because I feel uncomfortable. If you know me from reading my blog posts over the years, you might know some of the questions. 

It felt great to talk with women my age. I don’t mean that in a romantic sense, but I could see a few hanging out together. Hey, people do need friends. Right now, I am looking for friends.

Friends With Disabilities

One thing that I am kind of sad about is that there weren’t more people with disabilities. I attended all three high school reunions so far and I was the only person with a disability there. Am I disappointed? Maybe a little – I know it was difficult to make friends in school. It doesn’t mean that you won’t have fun at your reunion. 

Your High School Reunion

If you have a high school reunion coming up or a junior high school reunion, go to it because you might have fun there. You never know what you might run into. Also, dress nicely – I’m glad that I dressed sharp and I had a few compliments. People were in all types of outfits. You had guys in shorts and one in a sports jacket. With me, I always want to look sharp because I might meet someone who could give me a speaking opportunity. At the reunion, I met a woman who works with students with Cerebral Palsy. I don’t know if the opportunity will happen but I was ready to make my pitch to her. 

Looking back on the high school reunion, I could have not gone to it or gone and had fun. I picked to go and had a blast. I hear too many people with disabilities saying crowds are not for them so they will stay home. We have one life to live and for me, I want to make the most of it. Don’t you? 

Love Someone With a Disability

Love Someone With a Disability

I ran across an article about a woman who has MD and is in a relationship with a man who is able-body. She was asking him questions about their relationship. His answers were well thought out. He was her caregiver too. This was really unique, to say the least. When a person with a disability is in a relationship, the person is usually a man who is disabled.

Motherly Love

A woman is more equipped to take care of a person. I am not trying to be rude, but God gave the woman the ability to have kids and nurture them. You might look at it as a gift, not something that you desire. I am also not saying that this guy cannot be a great caregiver. 

My mom had Alzheimer’s for over ten years and my dad took care of her. He loved her very much and it showed through his actions toward her. For example, she ate really slow. I mean two or three hours for a meal. He used to feed her and watched TV or did some cleaning.

Personal Care Assistants

People usually think that taking care of someone is a job. That is not always the case. If a person does it as a job and does not care for the person with the disability, the aide won’t show compassion toward the person with the disability. I will give you an example of what I am talking about. 

I have currently three personal care assistants working with me. They like working with me because I treat them like friends which they are. We have to give and take while we work together. There is a mutual understanding between us. It should be in every relationship no matter if there is a person with a disability or not. If somebody is always giving and does not receive, the relationship will fall apart. On the other hand, the place where I live has caregivers who do not like their job and it shows. If you pass them in the hall, they don’t notice you. I am not saying that they have to be your friends. 

Living with Love

It is strange how different people react toward people with disabilities. Some people can fall in love with a person with a disability and take care of them like it is nothing. Other people act like it is torture. Do you know why? I truly believe it is how they were brought up. If you were taught that everything is a gift and you should be grateful, they will be compassionated toward the individual.  I am not saying that their life was perfect rather their lives might have been totally hell, but their parents taught them a lot. 

We all know that life is not a piece of cake for sure, but we have to live life with love in our hearts. If we don’t do that, how will we interact with others when we need them to help us? We might keep losing the help that we truly need. Looking back on the article, the couple knows what love is. The guy understands how MD effects a person so she might not have many more years to live.

Talk About Your Disability

If you fall in love, you should be opened with your disability with the person. Yes, it is scary to do because you might not know how this person will react. The person might be alright with what you tell them or they might say wait a minute, I don’t think this is something that I can handle. Sometimes the person might not know what to think, which is alright. You have to start the dialogue sometime. In my experience, it is to start the dialogue a little and let them ask questions when they are ready. You don’t want to force your disability on them. You never know what could happen to your relationship. It might turn into love or not.