As many of you already know, we moved from Ohio to Tennessee this past June. In Ohio, we had started a wheelchair support group that was so much fun! At any time, you could call up a wheelie friend and plan a get-together. Then we moved to Tennessee and after living here for several months, I have decided that I am the only wheelchair user in this state! I have not only missed my wheelchair support group, I just miss seeing other users! I am highly outnumbered in this world!
Before we moved here, we had visited the amazing church of our friends in the Tri-Cities area. There was a man who lived near the church who had been paralyzed from an accident 30 years ago. My friend had seen this man and invited him to the services where we would be singing and sharing our story. He came and we really enjoyed getting to know each other. Fast forward to last week-end. We went back to this church again to visit and guess who rolled in the door to see me? I was absolutely thrilled!! I almost cried! Really, I did!! Not just because he came to church, but because “one of my kind” had just entered the room! He rolled behind me and banged into my chair and I rolled back and banged into him. Yeah, that is our version of a fit bump. He was just as glad to see me.
What brought on this emotion? Loneliness. If I deal with it, then I know there are many others, like me, who also deal with it. So, lets talk about it. How do those of us with disabilities deal with the loneliness of our disability, and how do those who know us deal with our emotions about this?
For those of us who are disabled:
1. A new injury brings on a lot of attention.
When something devastating happens in life, you see a beautiful side of humanity. Their large and compassionate hearts shine through and it is so humbling. You are overwhelmed how much people care and come through for you. You are often absolutely overwhelmed at the outpouring that comes your way,
2. The newness wears off and so does the attention.
This is not a negative thing. It is normal. Nothing stays at an intense or high level at all times. A new baby is born, everyone oohs and awes for weeks and then it is over. You get a new car, everyone comes out and looks at it when you drive up, and then it just becomes normal for you to show up in it. Life just works that way.
3. You feel alone.
As your disability feels very permanent, you see that your life has changed forever and everyone has went back to their normal life. You can feel very, very alone and miserable at this time. This is a decision time for you. I talked as out this is in this post in more detail of how to handle it. You can either sink into depression and never leave your house or room….so that you can cope with not having to see normal people live their normal lives while you grieve that you will never have that again. Or….you can have your moment and then decided to make your life a new normal.
4. You find connection.
I will never forget my first wheelie friend (you can read about him here). I have made so many more wheelie friends. Actually, I counted through my friend list on Facebook and I have 91 wheelie friends! Granted, these are not “friends” that you would communicate with often, but I did not have one wheelie friend before I became paralyzed. I wonder what changed that? I need these connections now!
5. Virtual is awesome…reality is better!
One of my favorite things to do, and absolutely fills my bucket list, is meeting in person my virtual friends. I have been blessed to get to meet some of them, and I want to meet them all! I am not alone in this. They feel the same about meeting me in person. It is such an awesome experience! The virtual world allows you to get to know and love them, and when you meet them in person it just explodes that experience into 3D!
6. There is strength in numbers.
This is why support groups are successful. They take away the element of loneliness. How can you be lonely with 91 Facebook friends? Thank God for the virtual world! I can’t imagine not having any connections out there! If you can be part of a support group, do it! If you don’t think you need support, wonderful! Go and give it! This is one of the purposes of this blog, why I make Youtube videos, and have many visions of other ways to connect, support and network those of us with disabilities. I pray God allows many of these dreams to be become a reality in time.
7. Do something…..or be very lonely.
In Ohio, I did not have access to a support group and I desperately wanted one. So, we started one. Maybe you feel you can’t start something? Well, how lonely are you? I guarantee that if you apply yourself and the to start something, word of mouth will eventually take over and others will start coming out of their houses…because you started a group! We are in a time of transition, but I can’t wait to be a part of or start a support group! I am ready!
For those of you in relationships with us:
1. Encourage your loved one to engage.
This can be a volatile area as the newly disabled has a lot of insecurities and may still want to be in the hide mode. That is okay, give them time. But, if you think that a long time has passed and they are still hiding from life, encourage them strongly to get support. They may think they don’t want or need it, but they do! The sooner, the better.
2. Share your time.
If you are a major part in the life of the newly disabled, you may struggle with your own feelings. If you need support, find it. There are caregiver support groups out there that you can be a part of. If you can’t find one, start one. However, the feelings that my husband had were that he wanted to be my support system. He and my children are major encourages to me….but they are not disabled. No matter how hard they try, they can’t understand fully. Jimmy had to learn that I needed people like me in my life. He has realized that there are things I need to do because it helps me. He is my greatest supporter when he encourages me to do those things…not hold me back so that he can try to fill all those spots. He never can and so that would only lead to more frustration. So, share your time to let your loved me get the support they need. Go with them and show them that you are supporting by encouraging them in their world.
3. Stay on top of the mood of your loved one.
Having a disability is a full time job to keep your emotions in check. If life throws more on top of that, it is easy to get discouraged. When you are discouraged, the disability gets much bigger! So, keep an eye out. If you see they are down, try to help them find some sunshine. Ask what they would like to do and try to make it happen. Recently, we had several things hit us in about a 2 week period. I felt like I was in an emotional overload and the circuit was about to burn out! Jimmy ask me what I needed and then worked it out for me to spend a wonderful day with one of my dearest friends who always refreshes me. It was just what I needed!
Loneliness is an emotional place to be. Don’t get stuck there. If you are lonely, and can make some positive changes for yourself, then do it! Don’t sit and mope your life away. However, if you know someone is having a hard time, then do what you can to add cheer.
Christians and churches, I must implore you about this. Families with special needs feel very much alone in church. They are “the different ones” and there aren’t many others like them. What are you doing to help encourage them? Can they get in your facility? Can support groups run through your church? Can you connect with an organization like Joni and Friends and ask what you can do as a church to help special needs families? Will you decide to do one thing? Please try to understand the depths of this loneliness. You are only one accident, one birth, or one illness away from joining us. Let’s all help each other from ever having to feel alone.