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!