Even before I got sick and my whole life turned upside down, my dad would tell me not to bother with relationships and love. From a young age he told me to concentrate on school and work, that I didn’t need to worry about the complications of romance. Despite my contradictory feeling on this matter, I think it really affected me subconsciously throughout the years. we are our parents children, right? Despite our feelings on how we swore to not be like our parents, to not make the same mistakes, we do, don’t we?
My parents divorced when I was very young. My mom raised me primarily, and I saw my dad every other weekend while we lived in the US, until my mom moved us to New Zealand when I was 10. Despite my dad’s feelings on the subject, I didn’t like spending time with him when I was young because he was so strict, and at times cold. Its no surprise to anyone that really knows me that my dad and I have not often seen eye to eye. He has always voiced his opinion on how I was raised, how he felt my mom kept me from him, and his general dislike of the situation after the divorce. No matter how many times I’ve told him I was the one that didn’t like spending time with him when I was little, and that I would beg my mom to not let me go to his house. He “forgets” every time I try to stand up for my mom and set the story straight, and remind him of who left whom. He left. Not us.
I think a lot of my fear of him when I was growing up was how much his “advice” felt like insults and put downs. To this day, he will always stand by his word that he was being parental, and voicing concerns. But when you’re 13 and your dad asks if you’re pregnant and pokes at your belly, that barely extends from your hips, well you tend to fear the comments and advice. To be clear, I was NOT pregnant, I was growing into my body as any teenage girl would.
When I reached my mid-teens was when the “you don’t need a boyfriend” comments began. I was not to be deterred, and was as boy crazy as any hormonal girl of my age. But, when it came to the time of liking someone, I found myself to be quite commitment phobic. This went on long into my early twenties, and even gave me problems in my first long-term relationships. For years I believed that I wasn’t phobic of relationships, that I was just being sensible in not attaching myself to someone. It wasn’t until I found a really good therapist that helped me primarily in dealing with my disease, that I started to understand what had happened.
Subconsciously, I was following my dad’s advice for years, decades even. When I started working in my early twenties, the comments changed from “you don’t need a boyfriend” to “you don’t need to worry about marriage”. Now, I will never really understand why he said these things to me. I don’t know if he truly feels that relationships are a waste of time (he’s in his second marriage, so I can’t see that being an anti-commitment comment), or rather that he thinks I just shouldn’t waste my time. Or maybe he thinks I’m incapable of dealing with them, or that there are more important things I should be concerned with. Which may make more sense now that I’m sick, but these comments have been made since I was 10…
My point is, despite my feelings that I always wanted relationships and eventually marriage, I think his comments subconsciously deterred me from having them. Or rather, having healthy relationships.
Now, I am 35. I suffer from several chronic illnesses, one of which will eventually lead to my demise. And I am alone.
With my illness comes the desire to not suffer alone, and I wonder if I’ve lost my chance to find someone. Days pass into weeks that pass into months, and the loneliness sometimes feels unbearable. Yet now, instead of that incessant nagging feeling that I shouldn’t worry about relationships and marriage, I now incessantly worry that I shouldn’t bother with them due to my shortened life expectancy. Is it fair to engage in love with someone when I can’t give them forever?
I have no one to blame but myself. I listened to the wrong advice for a long time, and now that I’m sick, I worry that I lost my chance to enjoy something I’ve always craved, but never let myself truly have. I can’t get over the feeling that it might be unfair to want a lasting love, if that love might only last five to ten years depending on my hypothesized life expectancy.
These are all what ifs and maybes. But sometimes I wonder if my life would have been different if I didn’t grow up with the whisper in my ear that relationships shouldn’t matter to me. Everyone deserves love, even if they are lead not to believe it is so. Both of my sisters have both married, and here I am dying of a disease that leaves me feeling more alone that anyone can imagine. Sometimes I wonder why my dad told me I shouldn’t bother with romance. Was romance to be avoided by everyone, or just me? And why was I undeserving?
It blows my mind sometimes to remember that I’ve been disabled for over three years now, and out of work for two. It’s been a really rough lifestyle change for me, especially because I used to be so independent. If someone told me three years ago that I’d one day be living off food stamps and a stipend of $250 a month, well, I would have laughed in their face.
Before I got sick, I lived a really active life. I had a full social calendar: I spent time with friends, went to the beach nearly every weekend, walked the Makapu’u Lighthouse trail and climbed the 99 step staircase on Diamond Head, had family dinners occasionally, and travelled as much as my income would allow. And while I wasn’t rolling in Benjamin’s, I lived a comfortable life. I ate out at my fave restaurants often, had no problem buying those cute new shoes at Ross, and enjoyed going to the movies any day of the week, not just the $6 discount ones. So you can imagine how very hard it was to go from being happily financially independent, to relying on food stamps to fill my fridge (though to be honest, I never got enough monthly to really “fill” it). Or to have to feel helpless each month when I tried to pay $500 worth of bills with only $250 of financial aid. It was rough. And I knew the only way I could get through this new enforced lifestyle change was to apply for Social Security benefits. So I applied. And waited. And waited…
After two years of filing paperwork with my lawyer, gathering unending medical records, and not to mention dealing with multiple doctors and ER visits, and countless days of being stuck in bed in pain, I was finally granted Social Security benefits on May 11, 2016.
However, it was a bit anticlimactic, in the sense that my new Medicare benefits wouldn’t start until the end of November, pushing back my surgery for the much needed pain pump. The entire reason I was able to be seen by a judge so soon was due to a letter my doctor wrote, outlining that it was medically necessary that I get a pain pump surgically implanted. And not only was it necessary, but it needed to be done asap. I believe that letter was how I was granted a hearing after having only waited two years. I’d heard of residents waiting up to four years for theirs, so I knew I should count my doctor as one of my many blessings. And while I’m very happy and grateful that I was granted Medicare, as my state funded insurance wouldn’t pay for the pump, I was stressed that they told me it couldn’t start til the end of November. That’s 5 months away! What part of “medically necessary” and “needed ASAP” had gotten lost in translation? And on top of this great and also not so great news, I’d found out what my monthly cash allowance would be…
Now, usually when I’m told about a money allowance I’m going to be given, I always round down. I never count my chickens, and while optimistic, I usually tend to expect the worse. That way I’m almost always pleasantly surprised.
When my lawyer and I originally went over my case, and she explained to me how things worked, an amount was mentioned. I was really happy with said amount and foolishly based all my future plans around it. However, when my Social Security benefits were finally granted and I was told how much financial aid I’d be receiving, I was in for a rude awakening. The amount my lawyer had originally mentioned was no longer on the table. The financial aid I was to receive was barely more than I’d been getting from the state for the last two years. I felt sick to my stomach as I realized that there was no way I would be able to live off of it without finding some sort of supplemental income.
Reality set in that despite the fact that I was deemed “disabled and unable to work” by the federal government, I would have to do something to make some extra income, or I’d be facing homelessness again. I had wanted to close my donation fund once I’d been granted Social Security, but decided to leave it active for the friends and family that still wanted to help support me financially when they could.
But that would still not be enough to keep my head above water. I ended up doing some research and learned that I could work part time, as long as I didn’t make too much money monthly, and that a supplemental income wouldn’t affect my benefits. It seemed the only realistic option for me to do. But what job could I possibly get with my current ailment? I was deemed “unable to work” for a reason. There was no way I could return to an office job. I mean I’d just spent two years arguing that I was unable to work because of my disease, and now I’d have to work anyway just to be able to make rent?
I knew no matter how hard things got, I absolutely positively needed to keep my apartment. It was my home base! A place where I felt safe and comfortable. Not to mention that I also medically needed it due to the nature of getting my pain pump in December. Patients receiving the pump needed to live in a stable environment (not couch surfing) , and have their own quiet and comfortable space. My doctor had told me he’d denied people in the past to receive the pump due to unfit living conditions. I’d worked too long and hard to get these benefits only to be denied the one thing I needed so desperately. 5 months away or no.
For the past couple years my older sister Emma had been selling a high end skin care line through direct sales. While it had started as a part-time gig that she did for a little extra cash on top of her full-time day job, her leadership skills and drive to do well took it to a new level. She ended up buying herself out of her full-time gym franchise, so that she could turn her part-time gig into a career. Because the product was only available through word of mouth, social media, and direct sales, it was easy to make a lot of money, and quickly. My sister went from a struggling gym owner, with having barely any time to spend with her sons and family, to a successful stay at home mom, with money in the bank, and a smile on her face.
When she heard that I needed a part-time job that could allow me to work from home, on my own schedule and time frame, and where I could be my own boss, she knew that her new career path was the route for me to take as well. I did some research, and it looked like this kind of work was acceptable for the Social Security administration, and it seemed like really the only kind of job that I could handle. It would be direct sales that I could do from home, and even from the comfort of my own bed if I wasn’t feeling well. I could make my own hours, and be my own boss. And the most important thing of all: it would put a little bit of much needed income in my pocket to supplement my small financial aid benefit.
Now, don’t get me wrong, the irony is not lost on me that I’ve been working hard with my lawyer to get Social Security benefits because I can’t work a regular job. But I feel like the federal government really forces us to have to do that, because we aren’t receiving enough financial aid to live off of. How am I supposed to pay rent, utilities, phone bill, medical bills, and life expenses with well under $1000 a month? It’s impossible. Especially in Hawaii.
And so here I am…
I’m supposed to be so excited that I’ve been awarded Social Security, and I am. But it’s anticlimactic. Because despite being awarded this necessary life assistance, it’s just not enough to sustain.
And here I am….with Social Security financial benefits, to start towards the end of summer.
And here I am….with Medicare medical benefits, to start at the end of November.
And here I am….faced with starting a new job after having been unable to work for two years because of my extremely debilitating, and painful disease….
It’s day two since I started my “new job”, and I’ve been in too much pain to even get through the welcome packet, and watch the training video. I can’t even fathom what other people are forced to do to supplement their own incomes. Not everyone has a supportive sister that just happens to have an in on a direct sales job that you can do in your pyjamas. What must they have to put their bodies through in order to stay afloat?
Is this what you wanted Social Security? Is this what you had in mind for me when you decided on that ridiculously low financial aid amount? For me to fight for benefits, only to have to still work with them to survive?
Oh the irony.
For those who would like to make a donation to my active life fund you can visit my webpage: http://www.gofundme.com/sixthousandsteps
And for anyone interested in information on purchasing products from Rodan + Fields skin care line, #1 in the U.S. for anti-aging, as well as blemish & acne care, please feel free to email me: firstname.lastname@example.org