dis(abled)

Sometimes my disability frustrates me. Sometimes I am not as optimistic as I claim to be. Sometimes I wish it would disappear.

I don’t always feel this way. I don’t usually wish I didn’t have CP or count myself unlucky because of it. A lot of time I don’t give it much thought at all. And when I do I am able to see the benefits of it instead of the downfalls. But every once in a while, I just wish it would go away.

The past week has been a hard one. Hard to stand up, hard to sit down, hard to sleep. Hard to carry the baby, change his diaper, give him a bath. Hard to get the dishes done, or the laundry, sweep the floor. Just the thought of getting off the couch is overwhelming sometimes. Not because I’d rather sit and watch TV, but because I know it’s going to hurt more if I get up. And while most everyone would think “Okay, so just sit down and relax.” I can’t. I don’t know how. Sitting on the couch watching TV is a waste of time to me. I’d rather be living my life than just watching someone else live theirs.

I want to have an impact on the world, but sometimes I wonder how I am going to do that stuck on the couch. I don’t want to sit and relax, I want to hike mountains, run marathons, build a house with Habitat For Humanity. I’m tired of offering to help with something, and then ‘warning’ them of my physical limitations. I just want to do what I want to do, and not have to think about whether I have the ability to do it.

And for the times I really do want to just sit down because it hurts too much, usually I can’t. There’s a diaper to change or a baby to chase or dinner to make.

Sometimes it makes me bratty. Sunday, I was a brat all day and I knew it. But I couldn’t change it. I took my wheelchair into church, because we were supposed to help greet and hand out bulletins. We were late getting there (because of my pain), so they already had it covered. I was frustrated that we were late (again) and missed out on helping because of my disability.

In the service, the baby started fussing. I realized that we forgot to check him into the computer for childcare when we arrived, so my husband couldn’t just go drop him off at the nursery. The baby needed to be checked in first, but Sal didn’t know how to do it. I instantly got irritated with him for not knowing how to do it. This meant I had to do it. The reason I didn’t want to have to do it? Pain. I can’t hold a baby and wheel my chair. So I had to get up and carry him. Trying to stand up, I stumbled on the footrests of my chair, and almost fell. We were sitting near the front, so I felt like everyone saw. I needed the childcare card on the key ring, so I asked Sal for the keys. When he asked “What for?” I snapped “Just give them to me.” Because I wanted to do things quickly and not have a conversation about keys while people were trying to hear the sermon. In hindsight, it wasn’t very WWJD of me.

So I took the baby and rushed out to the foyer. At the check-in computer, it would only give me the option to check out, not check in. I thought maybe if there’s someone in the nursery that knows me well, I can leave him anyway. Buuut then I realized I left the diaper bag, with his bottle, in the sanctuary, all the way at the front. I was not about to walk all that way past all those people and back with a crying baby. I looked at the keys in my hand and decided I’d just take him to the van and nurse him. The back seat has tinted windows and screens to block the sun, so nobody can see in. I hoped that Sal would notice I left the diaper bag and come to my rescue, but he didn’t. Oh well, I needed a time out anyway.

When we were finally done, we went back inside, but everyone was coming out because the sermon was over. Sal came pushing my chair. I sat in it, and we tried to make our way through the crowd to find my daughter. He asked me a question, and when I answered, he didn’t hear me (a common occurrence when I’m in my chair). Someone else heard me and they said “What?”, so I told them that I was talking to Sal, but they didn’t hear me clearly and said “What?” again. Frustrated that nobody can hear me because I’m so far down and there are a lot of people around, I turn around to answer Sal. He had a Soda in his hand and his hand was over my sweater, so when I jerked around, his hand slipped and the soda splashed. He made a loud smacking sound with his mouth, indicating he was irritated. That hurt my feelings (again, in hindsight, he was irritated that the soda spilled, not necessarily with me). I felt like “Well, I don’t wanna be in this stupid chair where nobody can hear me, but I have to be.” So I got out of the chair and walked.

On Tuesday we stopped at the store to pick up a few things. I wanted to take my wheelchair into the store, but the baby was asleep, so we needed the stroller, which meant I would need to push the cart. For the first time, I decided to use one of the motorized scooters the store offers. That way I could sit down, and there’s a basket on the front for the items we need. I’d never used one before, because I’m always afraid I’m going to run someone over or knock down a shelf, but now I had no choice.

I was able to handle it ok without running in to anything, but all through the store I kept getting head shakes and eye rolls. I already knew why; in fact I kind of anticipated it. People see me, young and thin, and think I have no business being on that thing. That I’m just messing around, depriving some poor old lady who actually needs it. Same reason I get dirty looks in the handicap parking space. The fact is if I were 77 instead of 27, or if I were 50 pounds heavier, people would think I had the ‘right’ to use the motor cart. But I don’t ‘look’ like I need it. And kids these days just don’t respect anything.

As one gentleman stood there staring with his hands on his hips, I thought “Say something. I dare you.” Again, admittedly not the attitude I should have had. Sometimes I just get fed up. Well trust me sir, I’d rather be walking around just like you.

We went to the store again yesterday to pick up some supplies for a Relay fundraiser I’m working on. I used my wheelchair. And again when we went to the pharmacy. And you know something? I wasn’t in a whole lot of pain last night. I was able to sit on a stool and make dinner without having a breakdown about not being able to make dinner (something that’s happened every night this week. And at least once a week every week.) So it looks like the simple solution is to start using my chair when I go to the store or do other things that require a lot of walking, even if I don’t feel like I need to. I don’t like it, but it’s the smart thing to do. It will help me function better when I have to be on my feet.

So there you have it. I don’t always see my disability as a blessing in disguise. Sometimes I wish someone else had gotten it instead of me. Someone that doesn’t mind sitting on the couch all day. But I have to remember that nobody has it perfect, and we all have problems we have to contend with. This is mine, and it’s not as bad as it could be. Something good will come out of it. I can still have an effect on the world, even if I have to do it from my couch.

Sometimes it's difficult, but this face makes it totally worth it.

Sometimes it’s difficult, but this face makes it totally worth it.

Happy Anniversary to Me!

One year ago today was my first day out of the workforce. I teared up on my last day; depressed that I wouldn’t be working at the bank anymore. That I wouldn’t get that promotion, my own office someday, the salary I dreamed of… but also ecstatic about the big plans that I had for my newly found free time. I would have time to keep my house clean! To cook actual meals! Have Romi’s snack ready when she gets home from school! Help out in her classroom! Do Random Acts of Kindness every day! Have polished nails! Play my keyboard and work on my DJ skills. Start that blog? Maybe even write a book that Hollywood makes a movie out of, starring me as myself (big dreams, remember?). But I would start by giving myself a break and taking my first day off, well, off. I had plenty of time to get to all that stuff later.

As you might have guessed, most of that doesn’t happen. There are some things I failed to consider, like the fact that I was pregnant, and I am not a productive pregnant person. Throughout both pregnancies, I was nauseous the entiiiiire time. 24/7, for nine months. I threw up at work more times than I want to admit. Getting off the couch or concentrating on anything only made it worse, so I tended not to.

Another problem was that being pregnant makes everything harder physically. I would imagine this is true for everyone. It was already hard for me to stand up and walk and balance. An extra 30 pounds hanging off my middle wasn’t helping. So I decided my big plans would wait until my pregnancy was over.

Well, the thing about pregnancy is that when it’s over, you have a newborn.

My house is still a mess, and it still seems like I don’t have time to clean it. I blame most of that on that fact that having a second child exponentially increases the amount of laundry, and that I’m lucky if I make it five minutes picking up toys or standing at the sink before I have to sit down. Also, the baby nurses a lot, and seems to only be happy in my arms. Fortunately, I’m a very good delegator, and I no longer have to wait for the weekend to have time to get the house cleaned up.

That whole cooking thing doesn’t really happen either. First of all, I’ve never really liked cooking. I mean, it takes an hour or two to make, twenty minutes for everyone to eat, and another hour to clean up. Total waste of time if you ask me. If I enjoyed it (or could get my husband or kid in on the fun), that would be one thing, but I don’t. Cooking is also very painful for me. It really hurts my back, legs, and hips to be on my feet that long. I’ve tried using a stool, but that doesn’t really work because you have to be back and forth from the stove to the counter to the sink. If only my wheelchair had a hydraulic lift (any inventors out there?). Also, I’m kind of hypoglycemic, and when I’m hungry, I’m hungry now. It punches me in the stomach with no warning, and I’m cranky and impatient and desperate. I do NOT want to spend 5 minutes, much less an hour, making an actual meal.

Also, it seems that every day there is a doctor appointment or a haircut appointment, or grocery shopping, or errands, or visiting a family member, or a birthday party, or something or other. Despite my efforts to plan meal times around these events, it just doesn’t happen. I should point out the fact that if I wasn’t married to a Hispanic guy who’s big on real meals, I would probably live on cereal and PB&J. Sal works nights, and I’m not going to cook a big meal for myself and an 8 year old who’s not gonna eat it anyway, so if I were going to make a meal, I would make it during the day when Sal could help me and eat it with me. Well, all of the afore mentioned events happen during the day, late-morning, because I can’t get around in the morning and he has to be back home early afternoon to get ready and go to work. I’m barely off the couch and around in time to get ready to go, much less cook something and eat it. Since he works late, he sleeps late, so the same is true for him. We have coffee and a little something for breakfast like muffins or bagels. By the time we’re done with whatever errand we had, we’re starving, so we hit a restaurant. Admittedly, we eat out way too often, which bugs me because I don’t like wasting money, but I can only do the best I can. Sal does not share my convictions about money.

As for the rest of those goals: Romi’s snack I usually start preparing when she gets home. And by prepare, I mean get out some crackers and make some chocolate milk. Maybe wash some grapes. Sometimes she has to get it herself. There are not as many opportunities, as it turns out, to help out in class in second grade as there are in Kindergarten or first grade. They’re older and there aren’t as many party days. Luckily for me she has a great teacher who doesn’t mind if I, and even the rest of the family, come to ‘help’ any day we like. I’ve only made it into the classroom a handful of times, but I love that I am able to do it.

Random Acts of Kindness have so far only consisted of the occasional batch of brownies for a friend or family member, just because. Playing the keyboard and working on my DJ skills? Well, between diaper changing, nursing, baths, and him crying every time I put him down, I haven’t worked on that a whole lot either. As we speak, the spots of nail polish left on my nails will continue to dwindle until I have the discipline to use the acetone.  The book writing was something I worked on the days that I couldn’t walk at all, but that doesn’t happen as often now that I’m not working. When I stop writing for a few days, I lose the train of thought I had when I left off, so it’s hard to get back in to.

And I thought not working would mean having time for manicures.

And I thought not working would mean having time for manicures.

The blog, as you see, is one goal that I’m actually carrying out pretty well. But I have to admit that the only reason I finally started was that as dawn rose on the new year, I realized that it had almost been a year, and I had nothing to show for it. Not a clean house, not a 3-meal-a-day menu, not a fresh manicure, and not a blog. I hadn’t started the blog out of fear. Fear that nobody would like it, fear of criticism from family members, fear that it would be yet another thing that I started but didn’t finish, fear that I would unknowingly break some internet law and end up in jail…

I realized it was now or never. Either I had to take the risk and get it going, one step at a time; or my worst nightmare was going to come true: I would spend my whole life doing nothing. Not making an impact on anyone or anything. Sitting in front of T.V. and magazines, living vicariously through my children, no excitement or adventure of my own. That is not where I want to be. I want an amazing life. I want to do amazing things. And I would never get there if I didn’t push my fears aside and take the first step.

To Work Or Not To Work

I am currently on Social Security Disability. Almost a year ago, on a doctor’s recommendation and some hope that I would get my life back, I quit my job as a banker, hoping we would make it until I was approved. Going on disability was one of the hardest decisions I’ve ever had to make.
I started babysitting other peoples’ kids when I was 11. I started looking for a job when I was 15. Nobody would hire me until I was 16. I’ve been working ever since. I’d worked in fast food, retail, a gas station, a hotel, and as a bookkeeper. When I landed a job as a banker, I finally felt like I’d found something I wanted to do long term. So when, at 25 years old, I started having trouble just standing at my teller station, I was worried.

I loved my job. I learned something new every day. There was always a puzzle to solve or a fire to put out. I loved that I could answer the phone call of an upset customer, and hear them smiling by the time we said goodbye. My boss was amazing. My coworkers were funny, fun to be around, and fun to work with. Most of our customers came in daily, or at least weekly. We knew them well and they were fun to be around too. The future was exciting. The career possibilities were endless.

As time went on, standing at the teller station wasn’t the only thing I had trouble with. The distance I could walk grew shorter and shorter. Taking a shower seemed overwhelming. Even getting dressed was difficult. My time away from work was hard too. Getting home, it seemed like the only thing I could do was lay on the couch. On the weekends, when we were supposed to be going to the park or to a friend’s house, we would end up staying home instead because I needed to stay in bed with a heating pad.

To make it easier for me to work, my boss gave me her desk next to the teller counter so I could sit and still do my job, while she sat at one across the room. That meant she had to stand at my teller station when we needed extra help. They let me wear tennis shoes, or even flip flops when I couldn’t get shoes on, instead of following the business casual dress code.

When I could no longer handle walking through the grocery store, my doctor and physical therapist told me I needed a wheel chair and leg braces. Even using those I was still in constant pain, but finally I was told they couldn’t do anything else for me. Surgery wouldn’t fix this one. The only thing they could do was prescribe pain killers and muscle relaxers to ease the pain.

My husband, Sal, and my mom kept telling me I needed to go on disability. The thought of being able to relax when I needed to and not having to put myself in pain working every day – plus being able to stay home with my family – sounded great, but there were too many unknowns. I would have to quit my job just to apply. How would we pay the bills on one income? How long would it take to be approved? How much less would it be than my paycheck? What if I wasn’t approved at all?

At the end I was late to work every day because getting ready for work seemed too overwhelming and painful. I had to take breaks between everything. I would cry at work from the pain, and my coworkers would all tell me to go home and rest. A lot of days I would call in because I literally couldn’t get out of bed.

I wasn’t able to spend quality time with my family. Sometimes I couldn’t concentrate well enough to play a board game. And when my little girl was taking care of me while my husband worked nights instead of me taking care of her, I knew it was time to quit. For the first time, I really felt like “Why me?”
I loved my job. To me, quitting my job felt like giving up. Like my handicap won. I’ve never been one to just give up. What would the future look like without my job? I cried for a long time. I prayed for the pain to just go away.

I had big dreams when I was little. Still do. But honestly, the most important dream to me was having a family and giving my kids a great childhood. And I wasn’t doing that. I was giving my little bit of energy to my job, only to come home and lay in the fetal position until I got up in the morning and did it all over again. I realized that I did not want to look back on my life and say that all I did was work at the bank.

It was a scary decision. It meant an uncertain amount of time on only one income. If I was denied I knew I wouldn’t be able to just go get another job. I would have to keep fighting – without a paycheck – until I was approved.

Finally I felt a peace about not working. I started to see the bright side. While it was closing one door, it was opening up a world of others. I would be able to see my husband more than just on the weekends. I would be there when my daughter got home from school, and our time wouldn’t be focused just on dinner, homework, and bedtime. I had just found out I was pregnant. Now I would be able to stay home with the baby. Maybe it would mean I wasn’t in so much pain. I would be able to do all the things I could never find the time for before – music, writing, projects –maybe this wasn’t such a bad thing. Maybe, it’s an opportunity. An opportunity I wouldn’t have if I wasn’t disabled.

So with a recommendation from my doctor, I put in my notice. I was sad to go. I would miss the challenge of my job, and I would miss the people. But in a way it was an exciting new adventure. Who knows what the future could bring?

It took 5 months to get my case approved. Those 5 months were full of paperwork, interviews, doctor appointments, and anxiety. Being on one income, I would get dirty looks when I pulled out my food assistance card. But it was approved, and it was such a relief.

Life is better now. I can rest when I need to rest, and not worry about leaving them short handed at work. I can do much more, and I don’t have to use my wheel chair as much. I haven’t been completely unable to walk since a few weeks after my last day.
As a former member of the workforce, I know what it’s like to see the enormous gap between your gross and net pay, and think of how much you could use that money now. I know how it is to feel like you’ve kind of been cheated out of a chunk of your paycheck.

I can honestly say I worked as hard as I could for as long as I could. I am thankful that we have programs like Social Security Disability, and other assistance programs that helped us stay afloat while we waited for approval.

Remember, while the person in line ahead of you pulling out the food assistance card might be someone who simply chooses to live off of government programs instead of working, the more likely story is that they were or are paying into these programs just like you. That they are doing the best they can. Be thankful that your family is healthy and doing well, and respect the fact that if that ever changes, there are ways to get help, because you, all of us, have helped fund the programs that help people when trouble comes.

Work Pic