I am guest blogging over at SPINALpedia today. This is an awesome resource for anyone with a spinal cord injury or their families that educates and inspires. It is full of user friendly videos that show you life and how to live it…from those of us with injuries. If you can help out with their fundraiser, it will be for a wonderful cause. Here is the link to their fundraising site.
Thank you SPINALpedia for inviting me to share!
Here is the list of all the entries in the Disability and Relationships Series. This list will stay updated.
1. Introduction
2. Understanding
3. Remembering
4. Sexuality
5. Time
6. Acceptance
7. Loneliness
8. Perception
9. Confidence
Disabilities are intimidating. No doubt about it. You have been an established adult and you suddenly are thrown into a world where you are as helpless as a baby. Or, you have been born with a disability and you see others your age becoming independent and you feel stuck…or held back by well-meaning family members. You are stopped by something as simple as stairs, you can only drive cars that have hand controls, you need help in the bathroom if it is not accessible, your wardrobe has to change to meet your newly shaped body, and on and on. All of these can really take a toll and make you feel so insecure!
When I was about 3 or 4 years old, my mom put me in the bathtub. We had company over and so she went back out to see the company while I was playing. I ran out of the bathroom completely naked and my mom said, “Alicia!!! You get back in there! You don’t have any clothes on!” I replied, “It’s okay Mommy. I have my eyes closed so they can’t see me!” I have many memories of my early days of paralysis where I would close my eyes and declare to myself that it was all going to be okay because nobody could see me. We would sit in a parking lot and I would make my husband wait to get me out of the car until no one was walking to their cars. I would get ready to go to church and take a deep breath and pretend to walk in the door instead of roll so I could face all those walking people. No matter how much I pretended, or tried to act like I was not disabled, it did not go away.
One day I had a eureka moment. I decided that since I could not change my disability, I was not going to let my disability change me. I did not want to hide from life…I never have. I did not want to be shy and reclusive….I never have. I did not want to be sad and miserable…I never have. I did not want to wish my life away on what could not be. I wanted to relish life and squeeze every drop out of it. I love life…I always have. It was not time for my life to stop or be over. It was time to still be me.
Today, I want to talk about confidence. Are we capable of being confident? Are those in relationships with us willing to allow us to become confident? I think so and I want to share a few ideas to help all of us.
To the disabled:
1. Accepting your disability is key.
We can never be confident if we cannot accept our disability. A disability has changed how I function and how I have to do things, but it doesn’t change what I love and enjoy. We have to come to a final resting place, so to speak, with where we are in our abilities. We have to decide to let that be a rebirth for us in our lives. If we are to ever be confident again, then we must accept our disability. (You can read more about acceptance here)
2. Owning your disability is necessary.
Once you have accepted that you are disabled and that is just the way it is, then own it! You have to work past feeling embarrassed. You have to work hard to look good in your chair (I will blog in the future about fashion). You will have to keep your chair clean. You have to feel confident to be confident. I have went to many a platform to speak and felt so anxious! I see all of these beautiful “un”disabled people before me and I start to feel very insecure! I always pray and ask God to help me see that I am His child and I am of great value to Him. I ask Him to please help me and give me the confidence and courage that I need. Then, I raise my head up high, smile, and roll before them. You see, my disability is what got me there in the first place. If God can use it, then I will not be ashamed. I can be confident because it is what He has allowed in my life and I will use it for His glory.
3. Moving past your disability is a must.
Learning to accept our disability and allowing it to shine in our life is such a giant step in our confidence. The last thing I would like to mention is that we must move past our disability. We are people first, and then we are disabled. I remember soon after I became disabled, I had someone say to me, “I am not sure what to call you. Crippled? Disabled? Handicapped?” I said, “Oh, you can still call me Alicia.” A disability is a part of my life, and for a while after I was paralyzed it seemed that it completely consumed my life. It does play a major role in my daily life, but I am more than just paralyzed. I am a wife, a mom, a leader, a friend, a sister, a daughter, a church member, and on and on. I have hobbies and interests. I like and dislike certain foods, clothes, shoes, etc.
We don’t need to feel ashamed or of lesser value because we are disabled. It is easy to feel intimidated and to pull back. It is easy to not speak our wishes or tell others how we feel. It is easy to let others kind of run over your life because they have more physical abilities. Don’t do this! I have met disabled people like this and they are out of control of their lives. Other people tell them everything. This is not about being shy or outgoing. I have a good friend who is much more timid than I am, but she is in full control of her life and disability. This is also not about function. I know high level quads who need much personal care that are in complete control of who comes and does what when. The point is that we may need help being pushed, or transferred, or fed or changed. However, we can still be confident as a human being and keep the control over our lives. We do not need to feel like we just have to roll with the flow of everyone else’s wishes or desires. We need to be kind and unselfish just like everyone else does.
To the able-bodied in our lives:
1. Accept our disability.
Many times, you have as much trouble accepting our disability as we do. Sometimes, we can be feeling good about it and your drama can pull us right back down. If you are involved deeply in our life, then you have to go through a grieving time as well, and that is fine and normal. However, you have to learn to move on with us. There are many relationships that get ruined over this one point. As a friend or family member, you just can’t seem to get past what has been dealt us. Please, help us by allowing us to accept it. If I am okay with my disability, having to live with it and deal with it every single day, than I think you can too. When you are cool with who I am, it helps me be cool with who I am.
2. Let us be who we are.
There are things I want to do, now that I am paralyzed, that I never would have cared to do before. If I hear that someone has done something as a paraplegic, it makes me want to try. I would love to try kayaking. I would love to go skiing (snow and water). I want to zipline. I want to play on a wheelchair basketball team. Why? I don’t know. Maybe when you lose the ability to do some of the things that you once did, you replace them. Maybe because when I hear that someone paralyzed has done this, I want in on it to see if I can do it. Maybe I can do these things, and maybe I can’t, but I want to try!
If those I love try to hold me back in these areas, I would soon resent them. I remember the first time I wanted to stay all night by myself after paralysis. I got really excited about it because as little as it may seem to you, it was a big deal to me. Because of the way I became paralyzed, I had a lot of fears about being afraid to go to sleep and not knowing how I was going to wake up, I felt that staying by myself was facing that fear. So, it became a personal challenge for me. My husband needed to be away for a night and I insisted I could do this. He wanted to get help to come stay with me, but he listened to me and agreed. I was nervous and ecstatic all rolled up in one. The day came….the evening came….and help came. The helpers meant well, but I was so upset. I was NOT thankful for their help and told them so! We laughed about it later, but at the time, it was a big deal to me!
Please let us be who we are. Rather you agree or not, is really not the point. Just put yourself in our place and let us run your life and see how long you would like it. If you remember that we are people first. Our dreams and our desires still mean very much to us.
3. Allow us to go.
This was the absolute hardest thing my hubby had to learn. It still scares him to this day. This piggy backs on the last point, but you must allow us to go and do what we desire to do. I had a mom tell me recently, whose son in blind, that she dropped him off for his first day of college. She said it was the hardest thing she had ever done. He didn’t know the feel of the school, he didn’t have friends beside him and she wasn’t there. However, he had planned and prepared and they had the classes prepared for him. He told her to drop him off at the front door and he would maneuver the rest of the day. She let him go. Her release of that awesome young man will allow him to soar to much higher places in life than he would ever be able to go if she tried to lead him by the hand.
I will never forget the first time I wanted to drive to Tennessee from Ohio by myself. You wouldn’t believe how many people from my church came to beg me not to go, question me what I would do if I broke down on the road, and even tell my husband to ban me from driving! They all said these things because the loved me dearly….and thought I had lost my mind! Paralyzed people don’t travel alone…or so they thought. It was a terrifying thing for my husband to let me go and do that. He has had to learn to do that in many things I want to try, but I love him so much for letting me.
Don’t think that you are showing us love by saying that you care too much to let us go. That is not how we see it. True love allows the bird to fly instead of keeping it in a cage. When you release us, our confidence soars!
Maybe you just need a dose of confidence. Maybe it is to go in public, brave that transfer, learn to drive, make a friend, hop a curb or tell a loved one to back off a little. It doesn’t have to be major (like my picture up there of Aaron Fotheringham who shreds at skate parks and is a part of the Nitro Circus doing wheelchair stunts). Whatever it is that you feel is intimidating you, than make it your project to work on confidence in that area. I’ve got an area that I am going to work on. Do you?
There is nothing more attractive to me than confidence in those who have a disability and in those who love us. Accept it, own it, and move on with your life and what you love!
I love HGTV. Don’t judge. I don’t know if there is one show that I do not enjoy. I could easily be an addict to that channel…but I’m not…yet. One thing that gets me is when they show these houses that are like a million dollars. I am already drooling over the house, and the could-be-buyer is picking the place apart! They don’t like the color of the granite, or the shade of the wood floor and on and on. I sit there screaming at the TV (well, I use my inside voice) about how crazy they are and how they should love the house! Then…I look at the pictures from my husband and daughter’s mission trip to Honduras and realize that to them, my house looks like a million dollar home. It’s all about our perception. We always look at something else from our own starting point of reference.
I am keenly aware of how others perceive me. I know in a very short time if you feel sorry for me, if I am in your way, if you are kissing up to me, if you love soap operas and want in on mine (I don’t want to be misunderstood here. I don’t mind people asking me what happened to me. i just don’t want my story to become their drama and that is all they want to talk about when they are with me), or if you are genuine and care for me and my life story and want to be a friend…with no regard to my disability.
I have found on this journey, that able bodied people can be quite rude and thoughtless to those of us with disabilities. I have also discovered that those of us with disabilities can be quite rude and thoughtless to able bodied people. And I have discovered that we can be rude and thoughtless to our own kind…you know, others with disabilities. This last one, is what I want to talk about.
Early in my paralysis journey I saw this quote:
Every quadriplegic wants to be a paraplegic. Every paraplegic wants to be able bodied, and ever able bodied person would like to be richer or thinner.
Perception, right? You see, we always want the next best step above us. When I feel that you have it better than me, I have to decide if I am going to scream at you or not (using my inside voice, of course). We get the green eyed monster of envy getting to us and we have a hard time not feeling like we got the worse end of the deal.
As a disabled person, I can feel this way towards those who do not have a disability.
I can feel that they do not get my world, and they do not have to struggle through life like I do. I can feel that it isn’t fair. I can resent the things that they are able to do. When I can do something with them, I am glad they want me with them. What if it is something I can’t do? Will I still be happy for them to go and I will take a pass on this one?
As a disabled person, I can feel this way towards those who do have a disability.
I have watched others who were paralyzed like me, get back a lot of function and there is this little pain inside me that asks why not me? I have also watched myself get more function back then someone else and I don’t have that same pain. Actually, I want them to be happy for me! So, can I be happy for them?
There is also a snob factor among our ranks that says, “Unless you are as limited as I am, you are not as welcome in our group.” This has been a problem in some disability support groups. Those words aren’t necessarily spoken, but the attitude is screaming. The quads don’t think the paras should fit in with them. The paras don’t think that those who are able to walk some should fit in with them. The walkers (who still use some sort of walking aid to get around) feel weird around the wheelchair users. By the way, those who are caretakers to us can feel this way also in their caretaker groups. The attitude is “I have to help my mate more than you do”. What happened to the concept of support group?
How do we resolve this perception issue where we are comparing ourselves one to another and grading who is worse off? How do we get to a place where we can love and support each other…no matter where we are on a physical scale? We want the able bodied world to perceive us in a certain way, but do we discourage each other in our own ranks?
Maybe we can remember these few simple things:
1. We are all disabled. There is something that has set us apart from the general population. My disability may look different than yours, but we are both disabled. That unites us.
2. We should rejoice in each others victories. If you get back more function than me, then good for you! I am genuinely happy for you and will share in your excitement!
3. We should have compassion in our struggles. There are so many challenges that the disability itself faces us with, lets back off of adding more burden to each other. An arm around a shoulder is so much better than a knife in the heart.
4. We are stronger together. We understand society, and we are all trying to work together to make it a better world for the disabled. We must stick together for the greater cause.
5. We need each other. It can be lonely out there (as I already wrote about in this post) in this disabled world and we need each other. Let’s make sure that we are in the concept of multiplying ourselves together…not dividing.
I not only want others to perceive me in fairness, I want to perceive others that way as well. My desire is to be an encourager to those of us with disabilities and to help us in our journey. Will you join me where you are at to perceive others as you would want them to perceive you. Wow, that sounds a lot like the Golden Rule doesn’t it?
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.
I was debating between two different topics this morning, but after talking to a newly paralyzed friend last evening, I decided on the subject of acceptance. Not just me accepting my disability, but those around me accepting it also.
My friend is new to the disabled world. She and her husband are still in the midst of a very tumultuous time as they are trying to wrap their heads around all of this. That is so normal! It took me about 2 years to fully come to where I felt that I had finally arrived at a new normal, and I think it took Jimmy longer than that. When you are still so involved with learning how to function in your new body, and therapy is pressing you, there is always a thought in the back of your head that you may just lick this thing yet. And, that is not a bad thing. Time is a great teacher, and as more time rolls by, you have to come to a decision to accept this thing in your life or not. Don’t ever mistake “accept” for “not trying anymore”. I am a firm believer that there is a balance to this and you can live a life of accepting your disability with trying to always look for ways to better your life or condition.
The great Apostle Paul (who we know had a physical problem that God said He would not remove) said that he learned, in whatever condition he was in, to be content. I think the emphasis here needs to be that he learned. Paul did not just suddenly acquire this feeling of contentment that washed over him out of nowhere. He did not even say he liked his condition. But, he did say that he learned to be content with it. This is a learning process that both sides of the fence have to learn. We have to learn to be content with our disability, but those around have to learn that also.
I love a dear lady in my life. I have always admired her greatly. When I became paralyzed, she had a very hard time with it. Every time I saw her, I would be thrilled to see her, but she could hardly talk or look at me without crying. I don’t believe it was pity. She was just genuinely heartbroken for what had happened in my life. I finally wrote her a letter sharing that I had found peace and I needed for her to find it for me. It killed me to think that I (or my disability) was bringing her grief. She took my letter to heart and thanked me for it. She just really needed to know that I was okay, and she would be also. Now, when we are together, we just enjoy ourselves.
Can we learn to come to a place of acceptance? I believe so. This does not always mean that I will feel okay. It means that I am choosing to be okay. There is a difference. How can I learn to accept my life and help others accept my life? Maybe some simple things that we learned in preschool.
✔Take turns. You will have days where you are just down. Sometimes it is triggered by memories, but other times, there is no good reason. You are just having a rough disability day. This can be for the disabled or the able bodied one that loves you. There were many times that I would have a rough day and Jimmy would be good. Other times, Jimmy was a mess and I was good. Try to stay balanced and take turns. When one is down, the other needs to help lift up. Don’t hog the down time.
✔Be nice. When I am having a good day, I don’t really want Jimmy to have a bad day. When my day has gone smooth, I don’t want him to botch it up. When everything works good for me, then I don’t want him to come to me with his problems. But life isn’t just about me is it? When I have a bad day, I want him to be compassionate. When my day has been crazy, I want him to be understanding. When I want to share my problems, I want him to listen. I need to do the same for him. Don’t act like a martyr.
✔Don’t pout. This is crazy to write as an adult, but I find that many times we pout just as much a the kids. We are just more sophisticated about it. Many times, we call it depression. Don’t misunderstand me, I know all about clinical depression and chemical imbalances and I am not talking about that. However, there are many times we are depressed because we just aren’t getting what we want out of life. We have lost control of a situation and really it ticks us off to the point that life loses its appeal. This is the ultimate temper tantrum. We shouldn’t do this. We aren’t in control of the next breath we are given to breath, so let go. This is where I am so thankful that as a child of God, I can relax and let Him lead my life. He has it under control so I can let it go. Don’t act like a child.
✔Keep trying. Remember that word “learn”? There is a process to learning. We are told information, we process the information, we are quizzed and tested on the information, if we are wrong we restudy the information, and we try again. Life is just like that. When we go through a time of testing, it helps to show us our deficiencies. Maybe this post can help reprocess some information that you forgot. Don’t bog down in where you fail. We all fail! Instead, just review where you blew it, get up and dust your pants off and keep trying!
I get told very often that I am such a strong woman and have got this thing together. I feel really bad if I give that impression. I do not have this thing together! However, I do believe that learning acceptance has been a very important thing in my disability, and in the lives of those who love me and are around me. I love this quote.
“You will never go any farther in life than what you are willing to get over.”
You do not have to accept your disability. You can stay angry and upset about it. You do not have to accept the disability of your loved one. You can stay distant or too busy for them. However, both of those scenarios will never build a healthy relationship. Choose to learn how to accept. Life will be much sweeter for you.
*This post is shared by two different series.
It is time to go on a trip and your husband says, “Are you ready to go?” You say, “Let me use the restroom real quick”, and 15 minutes later (12 minutes of that was just getting your clothes up and down) you emerge and you are now staring into the faces of your annoyed family who already loaded up thinking it was time to go.
It is an exciting day! You are going shopping with a friend. You have already been to a couple stores and watched your friend have to wait on you to transfer in the car, then they have to take your chair apart and put it up while you sit and watch them do all the work, then they have to get your chair back out and put it back together….while you watch, and then they have to wait on you to transfer back out of the car. After a couple of stores, everyone is tired. Then you pass the cutest little boutique and you would just love to go in real quick. But….all that loading, unloading and transferring and the time it takes….you decide to just skip it. You have already felt like you burdened your friend enough with how long it takes you to just simply get in and out of a store.
Time. That word has taken on a completely new meaning when you have a disability. And, if you have a relationship with someone with a disability, it will take on new meaning for you too. I recently told a newly injured friend that patience would have to become a daily word in her vocabulary.
We live in a fast food society. Three times in the last few months, people have started honking in a drive- through line because the fast food facility was not delivering food quick enough! Talk about our society losing patience! If you take that mentality and apply it in the disability world, you will find much frustration and eroded relationships. Simply because of how much time things take and no one can seem to adjust to it.
In my early days of paralysis, my greatest frustration was how long everything took! While I am adjusted to the reality of that situation, it can still get really frustrating at times. I am the kind of gal that sees a project and will get it done immediately. No lolly gagging. Get your job done and get it done quickly. Ha!!! That whole idea is funny to me now. Get the job done? Yes. Quickly? Not going to happen!
How do we deal with this issue? How do we help with our relationships when it comes to the subject of time? How does the able bodied one deal with those of us who take so long? How do those of us who are disabled help to ease the lives of those who have to wait on us?
There were times with Jimmy and I that we would be out for the day and come to a store where we needed something. I would really want to go in, and Jimmy would say, “Your chair is kind of buried under bags of stuff so I will just run in and get what we need. You okay with staying in the van?” That is a hard question to answer honestly. One side of me screamed, “No!!! I am NOT okay with staying in the van. I am NOT okay that I have a chair buried under bags!! I am NOT okay with you not wanting to work hard and put my chair together and waiting on me so I can go with you. I want to just quickly run in with you!!” The other side of me smiled sweetly and said, “Yes dear. That is fine. I can see that you are tired and it is vey silly to dig my chair out for the 15 minutes it would take you in the store. I am glad to wait. I will find a book or something to read.” What I would typically do is to either go into the store mad at him for not wanting to get my chair, and then, I wouldn’t even enjoy the trip into the store. Or, I would sit in the van and as soon as he was out of sight, I would cry bitter tears and dry it up before he got back. He would come back with energy to a wife who was now quiet and reserved – definitely not my normal behavior!
There was something wrong in both of those scenarios. And, I am not making up those scenarios. They both happened…several times! In the first scenario, I was feeling sorry for myself and let it manifest into anger. In the second scenario, I was feeling sorry for him and let it manifest into dishonesty. There has to be a balance and we finally achieved it through communication, disagreements, understanding how the other one felt, being honest and then we found our solution.
Now a common scenario is this: He says, “Honey, we need…from this store. Do you want to go in?” I know that when he asks that question, he is probably tired and would rather not get the wheelchair out for another time. This is when I evaluate. Do I really have a strong desire to go in this store or do I just want to avoid sitting in the parking lot because I get bored easily? If I want to go in, I tell him and he gladly gets my chair. He doesn’t grunt at me annoyingly, or make me feel like a burden. If I am just avoiding being bored, then I choose to be bored and spare his back. I will stay in the van and I don’t pout. I watch people and have fun making up stories about their day!
There are some points to my rambling:
For you friends, spouses or family members:
🔹Don’t make us feel rushed. We know we take longer, but we are trying the best we can.
🔹Don’t make us feel like you are aggravated. We can’t help it that we have a disability and when
you get aggravated at us, you are expecting us to change who we are. We can’t.
🔹Try to help think through our feelings. Our feelings are not disabled and the same things that
you would desire to do or to go to, we also desire. Help us make that happen and allow and be
prepared for the extra time it will take.
🔹Be patient and understanding with our emotions. I assure you, we are more frustrated with the time it takes us than you are.
For you disabled readers:
🔹Plan well. Emergencies can’t be helped, but procrastination can. I know that it takes me almost
2 hours to get through my morning routine and get ready. That means if I have an early
morning, I have to get up much earlier than anyone else to make it happen.
🔹Think it through. If I am going to spend a day out with friends or family, I try to prioritize what is
most important to me. I don’t want to wear them out taking care of my needs. I go in when I
want to, but if it is not that important to me, I offer to stay in the vehicle before they even have
to mention anything about it.
🔹Be kind and patient. It is not anyone’s fault that it takes you time. So be careful not to be
impatient and grumpy. It is very easy for me to fuss at Jimmy for forgetting to put on a brake, or
for putting my cushion on crooked. I know that seems mean, and it is, but it is easy to get really
fussy over the little stuff because you are really aggravated at the bigger picture. So, don’t do it.
Take a deep breath, remember those who love you are trying to help you, and be quiet.
Remember, this “time” thing takes time to learn for both parties. It will happen. Just be patient!
I had the honor to guest blog for Sheila Gregoire today over at To Love, Honor and Vacuum. I have read her blog for a few years now and she has always helped me. She has a candid and humorous look at sexuality in our marriages and she is very fair to both the guys and gals.
There is not a lot written openly about sexuality in our Christian world and she has taken it on…and what a great job she has done with it. I would encourage you to subscribe to her blog. You will be helped….even if you don’t think you need it. Actually, if you don’t think you need help, you should probably send your spouse over there. They are probably confident that you do. 🙂
One of the greatest things I hear from my friends is when they say, “I don’t even think about you being in a wheelchair. I forget!” It shows me that they are focusing on Alicia – not on her disability. That proves what quality loved ones surround me!
As much as I love to hear that from them, I don’t understand it. I never forget. There are many days I wish I could! Every time I want to move, my hands touch the rims of my chair and I remember. Every time I want to transfer, I struggle to get where I want and I remember. Every time I touch my legs and can’t feel it, I remember. There is not one area of my life that has not been affected by my disability and because I live in this body, I always remember.
How does this affect relationships? I think you could compare it to someone who you knew had a bad cold. They are miserable, can’t breathe, coughing every time they try to talk, and you hear about it. You bring them over some soup and meds and tell them you sure hope they feel better soon. You go about your life for the next 2 days and need a recipe. You call them for it and when you hear that stuffy nosed voice, you remember that they had a bad cold. You hadn’t even thought about again until then! In a relationship, whether that is a marriage, family, or friends, it is easy to forget that the person with a disability never does forget. We aren’t given that option as we live our daily lives dealing with our disability.
In a marriage, specifically, this can cause problems from both sides. For the partner, it is easier for them to forget how much of a struggle it is for you to do the simplest things. They can have expectations of you that seem overwhelming to think about about on top of just dealing with your disability. As you function in daily life, they “forget”. Not because they don’t care, but because it is not their body and they don’t realize the level that a disability plays in your physical and emotional being. Jimmy has said to me often that he just doesn’t see my struggles.
For the disabled person, we are guilty of two things. We either whine about our struggles all the time and use the handicap card for anything that feels too hard for us, or we clam up and wont say anything while getting more angry and bitter at our situation and the people around us who forget.
Emotionally, I am a very private person. When I am struggling, it is very hard for me to look at Jimmy and tell him I am having a hard day. I will be snappy or grumpy or super quiet. After he has had to play 20 questions with himself trying to figure out what he did wrong to upset me (which was nothing), I will finally blurt out that I am sorry – I have just had a rough day. He has had to learn to read my quietness and be tender to that situation. I have had to learn to tell him quickly that it is not him, it is just me today.
We really try hard to forget. We try to move on normally with life, and we choose to enjoy every day and make it the best day! Most days are truly like that for me. I love life and I am thankful for every day The Lord gives me to love my family and live for Him. So, if I have to live it with paralysis, I am still thankful for my life.
But, it is so easy for a memory to flash in and try to take over your mind. A park visit with the kids is going great and then you watch a mom run under their child in the swing set and you remember what that was like and you crave it. You go out to eat with friends and all is cool, until someone makes a big deal over getting out of your way or moving the chairs and tables, and you feel embarrassed and just wish you could just walk in and sit down without a room full of people noticing. It is in these moments that we have to choose to forget.
The great Apostle Paul stated, while sitting in a prison cell, “…but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press on…” He was spot on. You have to choose to forget. Not because you can’t remember, but because you can remember. In these moments of remembering, you have to press on and choose to forget.
If you have a relationship with someone with a disability, don’t forget. Don’t forget that they never forget. Be sensitive to their memories and you don’t even have to talk about it. Just knowing that you remember with us, helps us. Sometimes the memories flood us so much that we feel like we are drowning in them. Just get out there and swim with us for a little while and it takes away the fear that we are alone. We will know that you are there to rescue us if we need it.
If you are the disabled one, then choose to forget. Don’t bog down in the way it was or how you wish it was. It is what it is, so forget living in the memories. You will just stay morbid and depressive and you will eventually push away those who love you. Take a moment with those memories and then tell them to go on. I can sit at that park and watch my kids and pine my day away watching someone else push their kids on a swing, or I can have my wave of sadness, push it on down the road, and enjoy my kids with the abilities that I have. I know what my kids would want. Press on with the action of today, not the echoes of yesterday.
I had only been paralyzed a few months and was so bogged down in how unbelievably different my life was. Not only in how things were done, but I felt different. Like I was in some sort of identity crisis and did not know who I was or what role I played in life.
I asked Jimmy, “If I would have been in a wheelchair when you met me, would you have asked me out on a date?” He looked at me as if weighing out the decision to tell me the truth or what I wanted to hear. He said, “No. I wouldn’t have.”
I was crushed. Absolutely crushed. I knew he would tell me the truth and that is why I asked him. I wanted to hear that this wheelchair made absolutely no difference in our lives. I needed it all to be invisible to him…or at least I thought I did.
Jimmy continued talking. He said, “I wouldn’t have asked you out because I had a wrong view of people with disabilities. I did not understand what they have faced, what they deal with on a daily basis, and how they continue to choose to enjoy their lives. I did not know then what I know now. You are the same person but this disability does add a new layer that would not exist if you were not paralyzed. I would not have had enough understanding to have looked farther than the wheelchair.”
I learned through the next couple years what “trying to understand” looked like in our marriage. It was tough. There were days I would cry my heart out in frustration that even the one I loved the most in this world didn’t get it. There were also days when he cried with frustration that I didn’t get it and what he had to face being my spouse and helper. At times, we would talk….or argue….for hours as we both had broken hearts and were grieving for the simpler life. Those words “simpler life” never came up. It was just what seemed missing now in our lives.
What Jimmy and I both craved from each other was understanding. We found that when we took our eyes off of our own needs and really looked for the heart of the other, that harmony was found. The root problem was not whatever our “issue” was. We just needed to know that the other understood. I needed to know that he was trying to understand….and he needed to know the same thing.
Those conversations put a fire in my heart that understanding is so important in everyone’s life. Don’t we just love it when people understand us? No one knows the road you travel unless you have also traveled it. If I haven’t traveled your road, at least I can try to encourage you in your journey instead of analyzing and criticizing you in telling you how to do it better. A passion was born to help others understand not only our life….but many lives like ours.
Jimmy tells me today that he would date me in a second now that he understands. He says that because he gets it, it makes him admire and love me more. He would date me for the woman I am because of the wheelchair…not in spite of it.
We don’t need our wheelchairs to be invisible. They need to be seen because they are a part of us. However, they are not the definition of us. There is much to be understood about us, but I think we are worth it! 🙂
Life is full of trials and we all face them in different forms. My prayer is that the scales of prejudice and superiority will fall off of our eyes as we try to reach out with understanding to encourage others in this journey called life.
