People ask me “what is it you want out of life?” Kind of a loaded question really. Most people expect you to reply with a career choice, or a certain income. That’s not what I want. Sure money is nice, but I don’t want to be a billionaire. It would be great to own a house, but I more than likely never will. I’ve always wanted a Mustang; instead I have a Durango that I still owe on. It’s not money, fancy cars, huge houses, or lots of “friends” that I want. So what is it then?
I want independence, so that my parents and sisters can live their own lives, and not feel responsible for me. I want to not be in debt to Credit cards, Medical bills, food, and basic cost of living, or to my parents, (even though they would say I don’t need to pay them back)…I DO. They should be retiring enjoying each other, without the weight of a daughter on disability, who they still take care of her own shit. I want a JOB, yet no one will hire me because of my TBI, headaches, Depression, anxiety, OCD, and other “abnormalities”. My Caseworkers have been useless; and I’ve been kicked out of Vocational rehab 4 times, based on my headaches and metal disorders. They can’t help me, they say, until I get them “under control”. Isn’t that the job, helping people who can’t find a “normal job”, at least find some sort of job? Hmm. Ten years people, it’s been Ten years of this, they aren’t going away (I’m talking about the headaches), nor are the other deficits I have. I’m treated as “lesser” in the medical world because I’m on Medicare. I’m treated lesser in life, because I “shouldn’t be on disability”; because I don’t want what is “normal”. People tell me I need to try harder, not give up, to change who I am, and to be patient, as though those things will make it all “ok”. Let me let you in on something; My entire life was changed, I’ve been fighting, tried to be patient, give and do things WAY out of my comfort zone. Nothing works.
Then, I have people say, “ You look Great, and you must be feeling better”. Yep, I’m feeling better because I stopped taking a medication that my doctor, more than likely, would have kept me on forever. My headaches haven’t changed though, I just can eat now without feeling sick all the time, I get a little better sleep, and am not as suicidal all the time….Doesn’t mean I’m “better”. I’m also 10 years into living my life with chronic headaches 24 hours a day EVERY day. Having new ailments come about, which I’m pretty sure would not have, had I not had a TBI, or as many medications put through my system as I have. No Mystery Arthritis, which is causing my hands to be unusable at times. Sort of sucks when you use them for the only things you have left... Music and Art. No benign mass that I had to have removed, as well as a complete hysterectomy. No memory problems, no Shakiness, no inability to retain information, no Adrenal fatigue, or inability to process the nutrients I take in effectively. No sleep issues, No anxiety or agitation issues, (at least not debilitating ones). Ah, but how can you know this you ask, pretty easy when you are an Identical twin. But people don’t believe that, people have a hard time believing something they don’t understand. It would be nice if people actually listened and tried though. I’m tired…. always, but I do what I can to be productive. Some days I don’t accomplish anything, or I have to cancel plans or appointments. I HATE DOING THAT. I know people get tired of me saying “I can’t I have a bad headache, or I don’t feel good”. People quit asking, and I get it in some ways. In other ways I don’t. I feel like I’m in the movie “groundhog day”, constantly repeating it, and never getting it right. Going to appointments, driving, and daylily activities all wear me completely out. I’m told I need to get out more….I laugh. You tell me how, and with what money do you want me to do these things. Everything costs something, from the cost of gas in my car to go somewhere, or to me being physically ill from walking somewhere; everything I do I must weigh and measure. Sometimes, I don’t and I think, “I’ll be able to do this today”, and then I pay even more. My bank account is used up the first week of the month. That’s it, nothing left but the amount to keep it open. People don’t believe that either. Again I hear, you look so healthy, well I’m not other than I’ve gained weight, and not healthy weight, which to them makes me, appear “healthy and good”. When all you gain is fat, that’s not healthy. The weight I’ve gained has nothing good about it, and I physically Don’t FEEL GOOD. Not ONCE in my life have I looked in a mirror, and "Liked" what I saw…. NOT ONCE in 37 years. I might like my shoes, or my hairstyle, but I hate, HATE everything else about myself; gaining weight does not help.
I’m told, “you need to do what’s best for you”. Really, because what seems best to me is ceasing to exist, and then I hear “don’t say that, you have purpose.” Really what is my purpose? I have two dogs to look after, one of which would rather be next door, so I rarely see him; and the other is 13, she won’t last forever. I have no one to love, or love me back; I don’t have kids to raise, although I would love to. Yet I long for these things. I want a family, a job, independence….I WANT LOVE AND PURPOSE. It would be nice to have friends that actually care; that don’t toss me away when I’ve served their purpose, or when they are tired of either my headaches, or my metal illness. It’s not something I’m proud of, or even like writing. To me it’s a “weakness,” that’s how I’m treated about it, and it’s what I was taught growing up. I’m trying to get over that thought process, but it’s hard when you are treated like it is something you could just “choose” to change; and then have people saying it’s ok, it is an illness and we understand….except when they don’t. I am honest, hardworking, a person who has integrity. My life has never been easy; I’ve always battled something. Whether physically, emotionally, mentally, or all the above…Hard times are my life. But I still try to give, make someone else’s day better because I was taught to put others first. That is what I do to feel like I did something worthwhile, even if only for a short time.
I’m asked again….”no, really what do you want”? I want understanding; I want someone to actually listen before giving me his or her advice or opinion. I want people to look at things from a different perspective. To try and understand what it is like to constantly HURT, and have that pain be invisible to the world. When I had my head shaved with staples and a scar, people were much more compassionate. When that “proof”, of something wrong goes away, so does the compassion. I Want Love I want to GIVE Love, I want to wake up with a sense of purpose. I want Peace. I would like to not have to deal with PTSD from being molested as a child; I want to have friends around still, who instead died from forms of Muscular Dystrophy when we were kids. I want people to look up from their phones, to have actually human conversations; I’m not sure most people know how anymore. I want to be heard. I want my Music to reach people, I want my Art to touch someone’s soul, and I want my writing to help others. It’s not monetary things I want people, I simply want to live, to feel alive and worthwhile, instead of feeling dead. Ironically the only place I really feel that is the same place that changed my life…..Volunteering at a camp for kids with cancer and their families!
Finally I’m told, “Well, maybe if you just try harder, keep working and fighting, God or the Universe, depending on what you believe, will help you and everything will be ok”. It’s not ok, and I’m close to half way through my life. Tell me how I should feel “ok” about that. I’m tired, my muscles are week, and I always give my best…. But my best never seems to be enough. I am constantly trying new things, Constantly coming up with news ideas to try and be better, get out of debt, off the government “help”, which coincidently, most the time is more of problem than a helpful solution. I do the job that my doctors should be doing; I do the job that my Caseworkers are supposed to be doing to help me. I fall through the cracks, because I’m “better than most”. Eventually it’s too much. I’ve reached my max and I’m tired of this life, tired of my effort not being good enough. Tired of trying, failing, and having nothing change. I am not stupid, contrary to the belief of some. I’m actually quite smart despite my brain not working “normally”. Sometimes being smart has its downsides however, as you see the things others wouldn’t. I’m tired of watching everyone I know move forward with his or her life. New jobs, new marriages, new anniversaries, new kids, new cars, new houses, new fill in the blank; While in my life nothing changes. I’m happy people are finding their soul mates, and having kids that I can mentor or coach or just hold. I’m glad to be able to help when I can; and I’m Frustrated that I’m still Alone, Will probably never have kids, don’t have a “real job”, because Art sales, Music tips, and anything for my writing, are far and few between; oh and aren’t considered “real jobs”! I’m frustrated, that I even am complaining about these things, when I know others have things that are worse, or that is what society has decided is worse. Yes, I agree things could be much Harder for me, I could have way more deficits or physical limitations than I do. But let me ask you this; If you Graduated Outstanding Senior of your entire college, Was going to be a Marine; was a two sport Collegiate athlete, a Coach, Teacher, a Sax player, someone who loved to read, had excellent memory and comprehension, was in great physical shape with no limitations other than a sprained ankle once in a while; and you had ALL OF IT taken away. How would you answer, “what is it you want out of life”, and actually have the stamina to keep Trying! Everything that you had set out to be, gone in an instant. NO matter how hard you tried, you could never be that person again, never do those things again; yet everyone expects you to get back to that person. You have to now have constant financial help just to live, are on government help, judged because you are on government help, are in a minority of people anyway because you “choose to be gay”, and there was no possible way you could get out of the debt you had accrued over the span of 10 years because of an injury you sustained while volunteering. No one’s fault, but you still pay a price. What would you respond with? Would you respond, or would you be tired of no one really listening, and having their ideas already in their mind. Would you just say, “I’m fine, I like my life”, so that you didn’t have to see the reaction from them when you voiced the truth.
I want independence, so that my parents and sisters can live their own lives, and not feel responsible for me. I want to not be in debt to Credit cards, Medical bills, food, and basic cost of living, or to my parents, (even though they would say I don’t need to pay them back)…I DO. They should be retiring enjoying each other, without the weight of a daughter on disability, who they still take care of her own shit. I want a JOB, yet no one will hire me because of my TBI, headaches, Depression, anxiety, OCD, and other “abnormalities”. My Caseworkers have been useless; and I’ve been kicked out of Vocational rehab 4 times, based on my headaches and metal disorders. They can’t help me, they say, until I get them “under control”. Isn’t that the job, helping people who can’t find a “normal job”, at least find some sort of job? Hmm. Ten years people, it’s been Ten years of this, they aren’t going away (I’m talking about the headaches), nor are the other deficits I have. I’m treated as “lesser” in the medical world because I’m on Medicare. I’m treated lesser in life, because I “shouldn’t be on disability”; because I don’t want what is “normal”. People tell me I need to try harder, not give up, to change who I am, and to be patient, as though those things will make it all “ok”. Let me let you in on something; My entire life was changed, I’ve been fighting, tried to be patient, give and do things WAY out of my comfort zone. Nothing works.
Then, I have people say, “ You look Great, and you must be feeling better”. Yep, I’m feeling better because I stopped taking a medication that my doctor, more than likely, would have kept me on forever. My headaches haven’t changed though, I just can eat now without feeling sick all the time, I get a little better sleep, and am not as suicidal all the time….Doesn’t mean I’m “better”. I’m also 10 years into living my life with chronic headaches 24 hours a day EVERY day. Having new ailments come about, which I’m pretty sure would not have, had I not had a TBI, or as many medications put through my system as I have. No Mystery Arthritis, which is causing my hands to be unusable at times. Sort of sucks when you use them for the only things you have left... Music and Art. No benign mass that I had to have removed, as well as a complete hysterectomy. No memory problems, no Shakiness, no inability to retain information, no Adrenal fatigue, or inability to process the nutrients I take in effectively. No sleep issues, No anxiety or agitation issues, (at least not debilitating ones). Ah, but how can you know this you ask, pretty easy when you are an Identical twin. But people don’t believe that, people have a hard time believing something they don’t understand. It would be nice if people actually listened and tried though. I’m tired…. always, but I do what I can to be productive. Some days I don’t accomplish anything, or I have to cancel plans or appointments. I HATE DOING THAT. I know people get tired of me saying “I can’t I have a bad headache, or I don’t feel good”. People quit asking, and I get it in some ways. In other ways I don’t. I feel like I’m in the movie “groundhog day”, constantly repeating it, and never getting it right. Going to appointments, driving, and daylily activities all wear me completely out. I’m told I need to get out more….I laugh. You tell me how, and with what money do you want me to do these things. Everything costs something, from the cost of gas in my car to go somewhere, or to me being physically ill from walking somewhere; everything I do I must weigh and measure. Sometimes, I don’t and I think, “I’ll be able to do this today”, and then I pay even more. My bank account is used up the first week of the month. That’s it, nothing left but the amount to keep it open. People don’t believe that either. Again I hear, you look so healthy, well I’m not other than I’ve gained weight, and not healthy weight, which to them makes me, appear “healthy and good”. When all you gain is fat, that’s not healthy. The weight I’ve gained has nothing good about it, and I physically Don’t FEEL GOOD. Not ONCE in my life have I looked in a mirror, and "Liked" what I saw…. NOT ONCE in 37 years. I might like my shoes, or my hairstyle, but I hate, HATE everything else about myself; gaining weight does not help.
I’m told, “you need to do what’s best for you”. Really, because what seems best to me is ceasing to exist, and then I hear “don’t say that, you have purpose.” Really what is my purpose? I have two dogs to look after, one of which would rather be next door, so I rarely see him; and the other is 13, she won’t last forever. I have no one to love, or love me back; I don’t have kids to raise, although I would love to. Yet I long for these things. I want a family, a job, independence….I WANT LOVE AND PURPOSE. It would be nice to have friends that actually care; that don’t toss me away when I’ve served their purpose, or when they are tired of either my headaches, or my metal illness. It’s not something I’m proud of, or even like writing. To me it’s a “weakness,” that’s how I’m treated about it, and it’s what I was taught growing up. I’m trying to get over that thought process, but it’s hard when you are treated like it is something you could just “choose” to change; and then have people saying it’s ok, it is an illness and we understand….except when they don’t. I am honest, hardworking, a person who has integrity. My life has never been easy; I’ve always battled something. Whether physically, emotionally, mentally, or all the above…Hard times are my life. But I still try to give, make someone else’s day better because I was taught to put others first. That is what I do to feel like I did something worthwhile, even if only for a short time.
I’m asked again….”no, really what do you want”? I want understanding; I want someone to actually listen before giving me his or her advice or opinion. I want people to look at things from a different perspective. To try and understand what it is like to constantly HURT, and have that pain be invisible to the world. When I had my head shaved with staples and a scar, people were much more compassionate. When that “proof”, of something wrong goes away, so does the compassion. I Want Love I want to GIVE Love, I want to wake up with a sense of purpose. I want Peace. I would like to not have to deal with PTSD from being molested as a child; I want to have friends around still, who instead died from forms of Muscular Dystrophy when we were kids. I want people to look up from their phones, to have actually human conversations; I’m not sure most people know how anymore. I want to be heard. I want my Music to reach people, I want my Art to touch someone’s soul, and I want my writing to help others. It’s not monetary things I want people, I simply want to live, to feel alive and worthwhile, instead of feeling dead. Ironically the only place I really feel that is the same place that changed my life…..Volunteering at a camp for kids with cancer and their families!
Finally I’m told, “Well, maybe if you just try harder, keep working and fighting, God or the Universe, depending on what you believe, will help you and everything will be ok”. It’s not ok, and I’m close to half way through my life. Tell me how I should feel “ok” about that. I’m tired, my muscles are week, and I always give my best…. But my best never seems to be enough. I am constantly trying new things, Constantly coming up with news ideas to try and be better, get out of debt, off the government “help”, which coincidently, most the time is more of problem than a helpful solution. I do the job that my doctors should be doing; I do the job that my Caseworkers are supposed to be doing to help me. I fall through the cracks, because I’m “better than most”. Eventually it’s too much. I’ve reached my max and I’m tired of this life, tired of my effort not being good enough. Tired of trying, failing, and having nothing change. I am not stupid, contrary to the belief of some. I’m actually quite smart despite my brain not working “normally”. Sometimes being smart has its downsides however, as you see the things others wouldn’t. I’m tired of watching everyone I know move forward with his or her life. New jobs, new marriages, new anniversaries, new kids, new cars, new houses, new fill in the blank; While in my life nothing changes. I’m happy people are finding their soul mates, and having kids that I can mentor or coach or just hold. I’m glad to be able to help when I can; and I’m Frustrated that I’m still Alone, Will probably never have kids, don’t have a “real job”, because Art sales, Music tips, and anything for my writing, are far and few between; oh and aren’t considered “real jobs”! I’m frustrated, that I even am complaining about these things, when I know others have things that are worse, or that is what society has decided is worse. Yes, I agree things could be much Harder for me, I could have way more deficits or physical limitations than I do. But let me ask you this; If you Graduated Outstanding Senior of your entire college, Was going to be a Marine; was a two sport Collegiate athlete, a Coach, Teacher, a Sax player, someone who loved to read, had excellent memory and comprehension, was in great physical shape with no limitations other than a sprained ankle once in a while; and you had ALL OF IT taken away. How would you answer, “what is it you want out of life”, and actually have the stamina to keep Trying! Everything that you had set out to be, gone in an instant. NO matter how hard you tried, you could never be that person again, never do those things again; yet everyone expects you to get back to that person. You have to now have constant financial help just to live, are on government help, judged because you are on government help, are in a minority of people anyway because you “choose to be gay”, and there was no possible way you could get out of the debt you had accrued over the span of 10 years because of an injury you sustained while volunteering. No one’s fault, but you still pay a price. What would you respond with? Would you respond, or would you be tired of no one really listening, and having their ideas already in their mind. Would you just say, “I’m fine, I like my life”, so that you didn’t have to see the reaction from them when you voiced the truth.
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