Unemployment: Making it Work

Unemployment is a weird little monster. Some days are good, you apply for jobs, you clean the house, and you work on projects. Other days are not so good; those are the days when you feel useless. When you don’t want to do anything but sleep and you are sure that you are never going to work again. For me the bad days are even harder. For me, on the bad days, it is not just the stress of the bills that still need to be paid, or the loneliness of the days spent by myself. For me, each day that I am unemployed it feels like a threat to my Independence, a threat to everything I have worked so hard to overcome.

Independence is a capital letter word in my vocabulary; growing up it was the most important thing, and to some degree still is. It was the reason for everything; for the hours of physical and occupational therapy, for the almost countless surgeries, for the IEP’s and the other three letter acronyms in my life (MRS, AFO, SSI, CIL). Independence meant that I had made it, that I had shrugged off every doubt, every low expectation and I had made it. I had survived, I had overcome, and I had beaten my disability.

Now on the bad days, I feel like that independence is slipping away. I know it has only been a month, but I am starting to worry about what I will do if I don’t find another job; if my unemployment runs out and I find myself depending on Tom for everything.  I depend on Tom for a lot already, he is my main source of transportation, but I have always had my own money. I have always paid my own bills and been able to buy the things I needed or wanted without having to ask someone else for it. 

I am also starting to feel trapped. I cannot drive, I live too far to access public transportation and my interaction with others is now limited to the ladies in my weekly quilting class, Taden, the cats and my husband who has been working as much overtime as possible to make up for my lack of income. On the bad days, I feel lonely, friendless and pathetic.

In order to keep the bad days at bay, I am trying to stay busy. I drag myself out of bed even if sleeping all day seems much more appealing. I have my coffee. (I am quickly becoming an addict, something I never managed to do while I was working in the traditional sense.) I spend the morning writing and looking for jobs. I am currently working on a Children’s book as well as a narcissistic, non-fiction novel based on this blog, both of which I intend to e-publish. In the afternoons I focus on my other creative endeavors. I have set up a website where I can sell my photography, and I am working on new quilts along with setting up an etsy site to (hopefully) sell them.

Of course there is still that little voice in my head telling me no one will buy any of my work and that all this time will have been wasted; but I took a crutch to her teeth last week, that voice is mostly garbled now.

I have no idea if any of this will amount to something, but it keeps me in control of my situation, it keeps the fear and isolation at bay. Plus, if this does work out, what better way for me to define Independence than by making a living on my own terms, my own talents?

If you are interested in checking out my photography please click here. If you can’t buy, leave a comment. I would love to hear your feedback.

I Do Not Love My Body

I am fed up with the obsession most people seem to have about the human body. I am fed up with seeing ads all over my TV, my facebook page and everywhere else I look advertising various diets, “skinny” recipes and the “secret,” that will make me thin. I am equally frustrated by the well-meaning, counter ads, telling us that must love our bodies and be proud of them because we are all so beautiful.

I’d like to propose something different. How about we all stop giving our bodies so much damn credit? My body is only one thing; it is a vessel in which I move through life. It is, in fact, very much like my wheelchair. It serves a purpose. When it is broken, I have to fix it; I have to do what I can to make sure it is working properly and that I am not causing it any undue damage. That is my only responsibility to it.

My wheelchair is not a defining factor in who I am. When people meet me they notice it, but they are not obsessing over the fact that it is orange instead of black, or that it is smaller or bigger than the one they saw last week, or weather in has metal spokes or plastic ones. Once people get to know me they don’t notice it at all.

No one tells me how to feel about my wheelchair. No one tells me that it could be sexier or sleeker or that the girl I work with has a better chair because it isn’t old and the paint isn’t chipped. No one tells me to love my chair. They don’t tell me that my chair is beautiful because it is mine, and that my chair is worthy of love and affection.

My chair does not determine whether I am a good person. It does not define who I am; and although it may determine how some people see me, that’s not my problem, it’s theirs.

The same can be said about my body. It is nothing but a vessel for my soul, or my energy, or my brain, or whatever makes me me.  It needs to be kept healthy and functioning at its best so that I can navigate the world as long as possible. But unlike my wheelchair, my body cannot be replaced. I will respect it, but beyond that I owe it nothing. It deserves neither love nor hate, and no one but me and my doctor has the right to tell me what to do with it.

I wish the world would start putting more emphasis on being a good person than having a good set of abs. Instead of teaching children to love their bodies, why don’t we teach them to love one another? Show them how to be good human beings, teach them to give to others, to think about others and be proud of what they leave behind when they die. After all, when we are gone, it is not our bodies that our loved ones are going to remember. They won’t care if we were a size 6 or a 16. They will remember the way we treated others, the jokes we told, and the way we made them feel.

None of us are going to live forever, and being old is a blessing. The secret of eternal beauty is not in a bottle or a tube, it is not the result of a fad diet or an exercise regimen. It is in our actions, it’s in who we love, how we love them and the memories we leave behind.

Another New Challenge

They say when it rains it pours. Well, it seems that I am caught up in the storm of my life. On Monday, I was told that there was no longer enough funding for my position. I was given until the end of the week to help my team adjust to working without me, to notify my clients and to make sure all my files were transferred off my computer.

The organization has been dealing with some financial problems for a while now, but I was still blindsided. I never thought that with 7.5 years there, and all the work that I did, I would be the first to be let go. I guess I was too confident. I spent the rest of that week in shock, really feeling nothing at all; and then the negativity started to creep in.

In college, I had a huge fear that I would not be successful. I worried that I would spend the rest of my life on SSI, unable to find someone to hire me, living with my Mom and feeling sorry for myself. For me, a job wasn’t something that was a guarantee; it wasn’t something that I could count on. A job was privilege. A job was the difference between the life society expected me to have (and the one I feared) and the life that I wanted. In short, a job meant everything.

When I managed to land the VISTA position at the Ann Arbor Center for Independent Living, I thought I had hit the jackpot. Not only had I found a job right out of college, but it was at a place I had always wanted to work with, doing work that actually meant something. I was so proud of myself, and the whole world seemed to open up in front of me.

Not surprisingly, when I lost that job, those old feelings started to creeping back. No one else would ever hire me; I was pathetic and would spend the rest of my days watching soap operas in my pajamas and napping, and then I snapped out of it. Yes, I am jobless, but my life isn’t exactly that pathetic. I am married to a wonderful man. I held the same job for seven and a half years. I have skills now, and tons of talent. Now that I don’t have a job, I have options.

I realized that this is not the end of something, but the beginning. Without a job, I have time; time to focus on my dreams. The dreams I forgot when I became employed. As of today, it has only been a week since I found out my job was gone, but I am already looking for new work. I have updated my resume and I am applying for jobs, but I am also focusing on me. I have a writing project that I am really excited about, and I am working on creating an etsy site for my quilts. I thought the world opened up when got my job, but now that I have lost it, anything seems possible and I am excited to see where this new adventure takes me.

Yes, life has given me quite the storm, but no storm lasts forever. When they are over and the sun comes out, everything is greener, the sun is warmer, the flowers smell sweeter and the birds are always sing.

On Dating

Over the years, and especially since I started writing this blog, I have been asked for the same advice over and over again. People want to know my advice for dating with a disability. More specifically, they want to know how to find someone that can “see past” their disability. I have always hated giving advice on this subject. For one thing, I am not an expert and it seems like a lot of responsibility. What if what works for me doesn't work for others? I hate giving advice unless I know that I am right. (Which is why, certain friends who shall not be named, when I do give you advice; you should take it and run.) For another thing (and I know so many of you are going to want to punch me square in the jaw when I admit this, but please don’t; my mother loves my face.) I never found dating hard, at least not after high school anyway. That is about the time men grow independently thinking brains and can date whoever they want without needing the approval of the whole damned town. Lastly, I really don’t know what I do differently than those of you that are struggling. The truth is there is no magic potion for dating with a disability, no program.

However, people keep asking me, and so I feel like I should at least try to answer them. So here it goes.

The first thing, and this is true for everyone regardless of ability, is that you have to be comfortable with who you are. So many times I hear people say to me, “How do you find someone who can see past your disability?” The answer is you don’t, because anyone who sees past your disability isn’t really accepting it. Some argue that this is just semantics, but I don’t agree. If you are willing to settle for someone who sees past your disability, then you have not accepted your disability as a part of who you are; a part of you that is awesome and does not need to be swept under the rug, but embraced and appreciated.

So how does one do that? Well, it isn’t easy. I spent years ashamed of being disabled. Then I went to a place called Indian Trails Camp near Grand Rapids, Michigan and my whole life changed. While there I met my first boyfriend. He was also the first person I met with a disability that was sort of ‘in your face’ about his disability. He joked about the things that were awkward, and brought up the things that everyone was thinking but was too afraid to say. He gave me a new perspective, showed me that I didn’t have to apologize for my disability. It was not a mistake or something wrong that needed fixing, it was a part of me; like my short stature and my weird gummy smile. So just like that shortness and the weird smile, it was something that many people could love about me.

Once you have accepted your disability, it’s pretty easy to get others to accept it. Think about it, most guys wouldn’t refuse to date a girl just because she had brown hair instead of blond right? So why should they refuse to date you just because you maneuver about the world differently? That’s just silly. For some though, disability is a BIG deal. When I was dating, I usually tried not to make it the focus of the conversation. If they asked me a question, I stayed away from technical terms and tried to personalize and redirect the conversation. For instance, if a guy asked if I could walk at all, I’d say yes. Then I’d tell them the story of when I was walking with two friends behind a dorm at college, our arms linked, and an RA came running out threatening me with a M.I.P. (minor in possession of alcohol) because she thought I was drunk. This story answered his question, but without a long explanation of how I am just like everyone else. I have friends, I get in trouble, and sometimes my disability makes for hilarious situations. Humor is a great way to make people feel more comfortable about things they aren’t used to. If you don’t have a sense of humor, I suggest you pick one up. A cripple without a sense of humor is like a 7:00 a.m. telemarketing call; no one is interested.

Another tip is to stay positive. Yes we all have bad days and you are probably going to need to vent once and a while, but no one wants to date someone who is always complaining. You can’t constantly moan about how horrible your life is and expect someone to share it with you.

Now, there are those of you out there that are funny, self-loving, positive people who have a lot to offer and still can’t get a man to notice you. I know how that feels, that was me in high school. The only things I did differently in college were become a lot more social, and get an internet connection. You HAVE to put yourself out there. The perfect man or woman is not going to walk up to your door and ring the bell. You have to get out there. Join a book club, a writing group, or a gym. Attend community events and social gathering at your church, or get involved in a movement that means a lot to you. Once you’re there, don’t just sit and wait for someone to approach you, be social, introduce yourself, and engage in conversations.

Confession time, out of my 3 long term relationships (lasting a year or more) I met two of them, including my husband, on the internet. The internet can be a great place to meet people because you really have to focus on who the person is instead of who they hang out with or what they look like.

That being said, the internet is much more dangerous now than when I was meeting people. Always have your guard up. Remember, online people can be whoever they want; that hot 26 year old might really be a 46 year old widow with a drinking problem and 6 kids. If you start to think you might have feelings for someone online, arrange to meet them. If they make up an excuse, move on. If they agree, meet in a public place and bring a friend; or let a friend know exactly where you will be and when you should be returning.

In my experience with online dating, being up front about my disability from the start has been best. Putting up a picture where your disability is obvious and touching on it in your profile might mean you get less people contacting you, but it also weeds out the assholes and helps to avoid an awkward conversation later. You will probably get a few devotees (people for whom disability is a sexual fetish). But they are usually pretty easy to spot, and if you aren’t into that, just block them from contacting you.

So that’s it. That’s all the advice I have. Here is the short version for all of you that skipped over my long windedness:

• Accept your disability as a part of who you are.
• Don’t let your disability be the focus of your interactions with others. If all they care about is the disability; they aren't interested in you.
• Use humor to engage people and make them more comfortable.
• Try to stay positive when first meeting people, don’t whine or carry on about how horrible things are for you.
• Get involved in your community, put yourself out there. Don't sit around and wait for Mr. or Ms. Right to find you.

Quilting is Good for the Soul

Once again, it has been a while since I posted. Things have been up and down for me for the past month or so. For much of February, my hemoglobin levels with so low that I could barely function. The doctors adjusted my Ribavirin dose and put my on folic acid. The number is still quite low but climbing. Then we found my liver enzymes had spiked and I had a brief moment of panic where I thought the virus might be back, but it turned out to be a fluke.

I will tell you, that one little step up on my hemoglobin has done wonders though. I feel like a new girl again! I have gotten 4 quilting projects done in the 3 weeks! I can't show most of them to you because they are gifts but I do have a few pictures.

New quilt for the bed

A quilt for my husband

I am currently working on a postage stamp quilt made with all the scraps from the quilts I have made over the last 3 years. I got the pattern here, and I am almost finished with the second step. I will post a picture when it's finished.

Today, I finally found a simple pattern (no applique, paper piecing, or complicated patterns to cut out) for a sunflower block and am so freaking excited. I wish I had a car so I could go to Joann Fabrics today! I am going to incorporate it into a simple pattern and make a throw.

Sunflower Block!!!

I am also going to make a friend a T-Shirt quilt.

I love quilting. It really has giving me something to focus on besides this disease and it really makes me feel good to see my pieces finished and being used by people I love. I plan to start selling some soon.... stay tuned.

Disability Pride: Why I am a Cripple.

Recently, this blog post has been making its rounds on my facebook newsfeed. It's about how the writer thinks the word cripple is better than "disabled". So far three people have reposted it, but I did not read it until this morning. My friend Stephanie commented that I was “ahead of the game,” so I gave it a glance.

I have been calling myself a cripple for 12 years. When I first started doing it, people were appalled, especially disabled people. Some of the most common responses were, “You shouldn’t put yourself down”; “you’re not crippled, you’re ‘differently abled’!”; “You don’t want the world to see you that way, do you?” Now when I say it, most people are still appalled; but my fellow cripples? They’re giving me the fist bump. It’s amazing what twelve years can do.

I am not saying that I made this change single handedly. I didn’t. But in college I was one of the only people who were truly proud of being disabled. While most other people in my age group were trying their best to highlight the things that they could do, to show the world they were no different and to make their disabilities a small (and insignificant) fraction of who they were, I was shining a spotlight on mine and shouting “HEY YOU! LOOK AT ME! I AM CRIPPLED! I KNOW I’M AWESOME AND YOU ARE TOTALLY JEALOUS.”

I remember sophomore year of college, I chalked the phrase: Being disabled is fun; everyone should try it!” on the sidewalk in front of my apartment. Later that night, the resident advisors knocked on the door and started yelling at my roommate for the offensive and discriminatory phrases she wrote on the sidewalk. She walked away and said,

“Melissa, you have company.” I rolled up to the door and smiled at the two girls. They were a lot nicer to me.

“You wrote this?” they asked.

“Yup,” I replied.

“Oh,” they said. “Have a nice night.”

I closed the door. My roommate couldn’t believe it.

“How can they think it’s offensive and discriminatory when I write it but not when you do it?”

“What are they gonna do Stephy, tell me my life isn’t fun? There was nothing offensive about that. They are just not used to people like me being out and proud.” We still laugh about that story to this day.

I was a cripple. I was done apologizing for it. I wanted everyone to know I was sick of the issue being skirted around. Sick of being asked “What do you like to be called?” and “Do you have any special needs we should be concerned with?” and having to answer politely because people “meant well.” So I started answering truthfully. “Melissa.” I’d say, and when they looked confused, “if you must, just tell them I’m a cripple.” As for my needs, I actually told one person I hadn’t gotten laid in a while. It turned out that wasn’t a need they were prepared to accommodate. Their loss.

Calling myself a cripple was my way of accepting my disability. It was completely liberating to no longer feel like it was my duty to make other people feel okay about the fact that I was disabled; to try to fit in and to be ‘normal’.

And why shouldn’t I be proud? My disability has put me through the ringer. It has knocked me down. It has said, “You’ll never succeed; you’ll never have real friends and no one could ever love you or want you.” And in response, I told my disability to fuck off, I had succeeded. Not by fitting my square butt into a round hole or by insisting that I was just like everyone else, but by embracing the fact that it didn’t and I wasn’t.

It worked for me, and apparently now it is working for others as well. This is one change that I can embrace. Here’s to a world full of cripples; loud and proud and not backing down.

Week 12 Treatment Results and a Plea for Patience

01/29/13 

HEPATITIS C VIRUS RNA BY POLYMERASE CHAIN REACTION(PCR),

QUANTITATIVE, SERUM OR PLASMA

RESULT: HCV RNA NOT DETECTED

Does everyone know what this means? It means I am kicking ass and Taking names that what is means. As of January, 29th there is no trace of the Hepatitis C Virus in my blood!

(Pauses for cheers and applause)

Of course it’s not that easy. I still have 35 more weeks of treatment, and in that time the virus has to stay gone. If it is still gone 6 months after treatment ends then I am considered cured. That will happen. It is only a matter of time.

Since my last update, in which I balled my fists and declared that I was done with the pity party, I’ve totally intended on filling this blog with other things besides my Hep C updates, Things like:

• My college roommate is getting married and made me her maid of honor. (Turns out being in a wedding is more stressful to me then planning my own.)
• The other day some shoe salesman with a broken arm thought asking me “What happened?” was a totally appropriate conversation starter,
• I wanted to post my acceptance story in honor of national acceptance day which was January 20th
• And I have finished two new quilts

Clearly I have failed at all of this because these as hard as I am knocking Hep C out the meds are knocking me out. I am still so tired, I am winded and I ache. My brain has turned into that of a goldfish. I am swimming in circles; I have a five second memory. If I don’t do something the second I think of it; it just slips into oblivion until I make another lap.

The difference between this update in the last one is that now I know that none of that matters, because right now, this treatment is working. All these side effects have been worth it and I have to believe that what the doctors are saying is true: that it’s all downhill from here. I can see the light at the end of the tunnel folks and I am in a much better place.

I know this blog has meant something to people and that means the world to me. I have no intention of stopping. I hope, in time that I will feel good enough for regular updates again, until then I hope that you all can hang in there and that you have all like my Facebook page where I continue to post at least a little more regularly.