“You know what you do?…You don’t feel bad about it.”

I met someone yesterday that I think may have changed my life with something she said, and she probably doesn’t even know it.

Yesterday my community group (like a bible study group) hosted a barbeque in the park. I almost didn’t go, but since we were doing it to reach out to the community and as an act of kindness, I decided to go. After we arrived, a family arrived that I hadn’t met before. They had seven(!) kids, and one of them was using a wheelchair.

I told her that I liked her chair, and that it looked a lot like mine. I wasn’t using my chair, even though I really needed to, because I haven’t figured out the art of baby chasing from a wheelchair (another post for another time).

The way she sat and her shorter stature made me wonder if she had Spina Bifida, so I asked her mom when she was off playing with the other kids. She does have Spina Bifida, which as I’ve mentioned, one of my best friends, Kate, has, so we got to talking.

One of her friends adopted a child that has CP, so she was asking some questions about it, because her friend is looking for information. It came up that one of the biggest challenges I face is cooking.

I can’t stand in the kitchen long enough to make a meal. I’ve tried bringing my wheelchair in to do it, but the counters and stove are right at eye-level from my chair. Also, it’s hard to get around in the tight quarters in a wheelchair. I’ve tried using a barstool, but that doesn’t work, because you have to move all around the kitchen to cook. What doesn’t help is that I don’t particularly like cooking, so it’s already not enjoyable.

I tend to force myself to try to cook to save money. Eating out is expensive, and my husband, who is a cook, doesn’t wasn’t to come home from work and cook some more. The money thing has never really bothered him, so he doesn’t mind eating out. But our family doesn’t have a lot of extra money, so I feel that I need to save wherever I can.

Also, he is from Mexico, where they don’t eat cereal or a sandwich as a meal, so while my daughter and I are fine with eating just that, he is not. And since in Mexico the women tend to spend a lot of their time cooking awesome food, I somehow feel like I’m not as good of a wife for not doing it.

I know this is ridiculous, especially since he has in no way ever made me feel that way, but like I’ve said, sometimes I’m pretty hard on myself.

Recently, I had an opportunity to save money and have some easy, home-made frozen meals on hand, but it meant I would have to cook 2 meals, and make enough food for about 40 people each meal.

I was reluctant to participate. I can barely cook dinner for my own family; why would I want to try doing it for 40 people? Twice? One of the girls offered to help me, but me cooking usually ends in tears, so I declined her help. Plus, I didn’t see much point in me sitting and directing her on what to do.

I liked the idea of saving money and having meals ready to heat. Being a health nut, I’d rather have home-cooked meals available than fast food anyway. My husband offered to help, so I decided to give it a shot. He did the shopping and came home, but within 10 minutes of cooking I was in tears. When I thought of how much I still needed to do, that brought on more tears. He was sweet and brought me some medicine and my wheelchair, and a coke and chocolate (that always calms me down). Somehow we finished it all, but I was in a lot of pain, and I will NOT be doing that again. Well, never say never; perhaps the trick is to not do it all in one day. It was a busy week, so it just worked out that way.

We were supposed to meet to deliver the meals and play some games that night. After cooking, I took a shower (another painful task) and got into my sweats. I really wasn’t feeling well, and I didn’t want to go. I changed my mind at the last minute, so we all went. I still was in a lot of pain, so we left early. While we were leaving, someone said “Thanks for toughing it out, I know it’s frustrating.”

That comment kind of got to me. ‘Frustrating’ is not the right word. I felt that ‘frustrating’ would imply that I simply did not want to do it because it is complicated. ‘Frustrating’ sounds like I simply chose not to be lazy. In cases like this, I wish pain was visible. I wish they could see it and know. Because I chose to dry my tears and have a smile on my face when we arrived.

I am in pain all the time. Sometimes severe, sometimes not, but all the time. But I generally keep it to myself. I don’t go around with a frown on my face, or complain about it all the time. That’s just my choice. The truth is that I have a lot to smile and be happy about, and I think those things are more important. But sometimes I think my smile makes my pain seem less real to those around me. Some tend to think I’m making excuses or being lazy, or that when my family helps me with something, they are babying me.

I have always done as much as I can for myself. I have always pushed myself to be as independent as I can be. But I do have limits, and I know what they are. I can’t do as much physically as other people. So what is frustrating is when other people question those limits. When they assume I am simply not trying.

Don’t get me wrong, I don’t mind when people ask if I can do something. I would much rather they ask than assume that I cannot. What bothers me is when I tell them I can’t, but they want me to do it anyway. When they imply that if I would just put in some effort, I could do it. Kate had a similar incident on the same weekend, and I doubt we are alone in this.

Okay, enough with my rant and tangent. The person didn’t mean it that way, cooking is just a sensitive subject for me.

So, back to the park. I was telling my new friend about how cooking is a difficulty for me, and she was totally understanding why; a reaction that I usually don’t get. You know what she said? She said “You know what you do? You eat out, and don’t feel bad about it.”

Wow. So simple, so silly, but in my world, so profound. I’ve never had anyone really understand before. Nobody ever just give me permission to spend the extra money on something that’s considered a luxury because, well, that’s what I need to do.

So from now on, I’m going to do what I need to do. I’m going to eat out when I the pain is too much to stand, and I’m not going to feel bad about it. I’m going to listen to my body, and not force it to stand. I’m going to use my chair when I need to, baby and all. The more I force myself now, the less I’ll be able to use my legs later. So I’m going to take care of myself, and not let other people be my guide. I’m going to do my best, and let God do the rest.

So thank you new friend, for giving me permission. Something that I didn’t know I needed, but it has kind of set me free.

Sometimes when daddy's at work, we have cereal for dinner. But we like it that way.

Sometimes when daddy’s at work, we have cereal for dinner. But we like it that way.

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12 responses to ““You know what you do?…You don’t feel bad about it.”

  1. I don’t do parties for that reason; I just get tired. I am like you; I can barely cook dinner for my own family, there’s no way I am willing to cook for a larger group.

    • When we do parties I usually just do snacks and appetizers. I can make a pretty awesome bowl of guacamole sitting down. My husband being from Mexico, sometimes he wants to have this big feast. I just tell him if he wants to fire up the grill, go for it. Thanks, it’s nice to know I’m not the only one in this situation. Sometimes I joke that my wheelchair needs hydraulic lifts 😉

  2. I too find cooking really hard and I can understand why it upsets you. I still live at home with my mum so she does most of it for me. I do feel bad though if she’s had a long day at work and she has to come home and start cookin. I wish there was more I could do to help her, but she understands. When I moved out of home for a while for work I did tend to eat out quite a lot (more than I felt I should do). I felt guilty about spending the money sometimes but I always tried not to. In the end I started to view it as a necessity rather than a luxary because I knew that I needed to have good, healthy food and that was the easiest way for me to do that sometimes.

    • Yeah, I’ve decided that if I can’t stand up to cook I’m not going to force myself. That’s silly. If my husband’s up to cooking, great. If not, I guess it’s pizza night. I’m glad you started to see it as a necessity. It really helps me to have others who understand my situation.

  3. I know exactly what you mean about being “given permission” to do something., We had a dog, Ding Dong (or his real name was Shadow) who was getting sick and old, and I really in my heart wanted to get him put down as I felt it was time. Especially after he lost two kilos in less than two weeks. The vet muttered something about pallative care so I thought.. oh. That must be what the next steps have to be. I then rang my dad and told him about poor Shadow and he said “put him down”. My dad can be rather forthright so I then rang my mother in law who has had a lot of experience with dogs. Her advice was exactly the same, except in a more caring tone. “Put him down, Yvette. He is not living a good life anymore”. So the decision was made. I had a chat with hubby, who said he had been thinking the same thing. I had been given permission to get him put down, so the onus was less on me, and rather more on everyone inclusive. We made the decision, and while it was the most awful decision I have ever had to make in my life thus far, once it was done, I felt a weight lift off my shoulders. You can read about Ding Dong if you click on this link: http://strawberryquicksand.wordpress.com/2013/06/10/rest-in-peace-ding-dong/

    So, yes. I also give you permission to do what you need to do to get by in life, whether it’s eating out (hell yeah! – no cooking, cleaning or shopping involved here!!!), using your wheelchair whenever necessary (even if it is ALL the time!!!) or simply declining an invitation because you feel too bloody tired to attend. That also includes accepting an invitation and cancelling out at the last minute. You have to live your life for you first and everyone else second.

    As far as cooking goes, I can see how everything could be a pain in the arse for you to effectively accomplish it. Is there any way you can bring everything down to wheelchair height? Even if, perhaps, you purchase a camping gas stove (one or two burners fuelled by a very small gas cartridge) that you can put on a bench at wheel chair level? You could also cut up stuff there on the cutting board. I’m not sure how you go with your cooking but if you were to do this, select simple recipes (ones that have, you know, four or five ingredients and all go in the one pot – crock pots are GREAT for this kinda thing), and round up all your ingredients, knives and cutlery before you start, you might be able to effectively achieve a yummy meal with minimal stress and tears on your behalf. And remember – always cook with wine because when it gets too much at least your wine will be in easy reach! lol. 🙂

    • I read the post about your dog a couple weeks ago. That is so sad, I’m sorry you had to go through that. We have a dog, and I’m dreading the day she passes, I know it will break my daughter’s heart.
      It would be really nice to put everything at wheel chair level, I just don’t know if it’s financially possible :/ I always joke with my husband that we need to put hydraulic lifts on my chair so I can reach the counters and stove. The camping stove is a good idea, I never thought about that before. I tend to use the table for prep since it’s easy to reach, but sometimes that frustrates me, because it’s almost just as difficult to move eveything from the table. The crockpot and I have recently become friends. My grandma gave me an old one and I love it! The only problem I have is that I forget to put something in- and they take a while to cook.
      Thank you so much. And thak you for the wine advice! I’ve never tried a wine that I liked, but you can cook with tequila, right? 😉

      • Thank you for your kind words about my dog. Yeah, I had to think long and hard about getting a pet because I knew that day would come. I have two other pets that I am dreading that day coming too, as well.

        As far as bringing everything down to your level, is your kitchen big enough for a tressle table? You could probably rig something up easily enough (or at least handyman hubby might.. I”m useless at stuff like that). Or maybe the next room might be big enough for a tressle table you could have at wheelchair height with a camp stove on it or one of those portable plug-in electric cooktops. Yeah, crockpots rule. Here is a really easy crockpot recipe:

        Meat, carrot, celery, onion, barley, can of crushed tomatoes, pepper, a bit of salt (salt to taste when done), mushrooms (whole small ones or diced up bigger ones), a chicken stock cube disolved in a small amout of boiling water, oregano or whatever herbs and spices you are fond of. Stick the lid on the crock pot and let it cook for eight hours on low. When done, the liquid will be runny so simply thicken with some cornflour mixed up in cold water. Mix it through and allow to thicken/cook.

        p.s. i’ll even let you add some tequila.. lol

      • It’s a pretty much make-it-up-as-you-go kinda recipe, but you will get the basics. If you chop up meat, you can toss it lightly through some flour (plain) before you put it in. That will help it thicken while cooking. Sometiems, though, itmakes it a little too thick. This recipe works really well with chicken. If you are using beef, you can throw in some red wine, take out the celery, etc. 😀 Let us all know how you go, if you end up doing any of it.

  4. I thought about a crockpot, too. Here is a super easy recipe that is one of our family favorites. Buy a pork roast (a butt roast works best). Put it in the crockpot. Pour about 1/4 cup of water around it. Open a pouch of dry onion soup mix and pour on top of the roast. Turn the crockpot on high for the first 4 hours (because it is a big piece of meat). Then turn to low for the next 3-4 hours. Have your husband take it out of the crock pot. Makes great leftovers for sandwiches, as well.

    • I use a 3 1/2 quart crockpot. My son, who lives alone buys a smaller roast, and uses a 2 1/2 quart crockpot. I do NOT recommend the 6 quart crockpot for this recipe because it doesn’t get hot enough in the middle of the roast.

      • Thanks for the recipe! I’m not sure how big mine is, but it’s not very big. We actually used a crockpot to cook one of the meals. Sometimes even that’s hard – getting out all the ingredients and doing some prep. But I guess those days I just need to take it easy and order a pizza 🙂

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