Not in so many words, I guess, but it was alluded to. When I was 26 or 27, my doctor looked at me so cold and said, "if you're going to have any babies you better hurry up and do it now because before too long you're not going to be able to." Well then, let me kick start my maternal instinct and get this family started, umm, not. I didn't have the most familial upbringing as it was, and so that instinctive bonding just didn't seem as inherent within me as it did with most other women I knew. Frankly I blame most of it on societal conditioning and the media at large, but I'm quite sensitized to that anyway, but I won't make this about all that right now. What I will make it about is what my doctors set me up for, solitude. Granted, I have free will, the ability to make the ultimate choices about my life, but when you're made to feel fear about who you are and what you are to become, rationale doesn't play into your decision making, fear controls what you do, and it left me alone.
When I got diagnosed, I was still a child. Twenty five is nothing in this world. Most people that age still live at home. I was freshly married though, been to college and graduate school, lived on my own, and thought I had a running start on this world. Then I hit the wall. My marathon knew when to slow me down. Prognosis, at best we can say with what we know of the disease, which isn't much, is ten years. Ten years. I am 25. That means it could be less. What if I've had it longer? My depression laid on me like those lead vests at the dentists office, just heavy enough where I feel a struggle to breath, yet no one knows why but me. So many questions had to be answered. Where will I be buried? Do I want to be buried, I thought I always wanted to be cremated, what if I become a vegetable? How do I make a living will, how do I make a regular will? What are my final wishes? What do I need to accomplish before, well...my god I'm going to die.
My husband would hear none of it, which meant he would help with none of it, which meant he would be part of none of it. It's quite an experience to face your mortality, married, alone. Yes, I understand quite well that women are more expressive than men and that men don't enjoy discussing things of that nature, but that is when the drift becomes a divide and when you turn around, all you can see is the shadow of who used to be there for you. That's what happened to us. It took awhile, but eventually, we were no more of anything we used to be. I credit this disease with a lot of that division. But, if someone isn't willing to go through it with you, then a shadow on the backside of your memories is exactly where they belong. No regrets there.
I had one attempt at love after that. And it was a great one. He was there at every doctor appointment, asking tons of questions, all up in my business. Turned out, he loved me for my pills. We can guess how that turned out. Since then, it has been utterly difficult even telling a man that something is "wrong" with me or getting close enough to someone that I feel like I should. At this point, I have been diagnosed for 12 years. Remember that lovely little 10 year prognosis? When you feel like you have beaten death, you still always feel like you're walking in its shadows. Waiting. Where is the rock I'm going to trip over? Where is the noise that will catch me off guard? Where is that bus that's going to come completely out of nowhere!! You're number is always up, death just hasn't read the card yet.
So no, I never had a doctor tell me that being alone is better for me at any point in my trial with scleroderma. But I've had them tell me that I'm not going to be able to have a family. I've had them tell me they can't save my life. I've had them tell me I'm not going to probably live to see 40. And I've had them tell me that the years that I do live on this earth, are going to be a struggle. As a person in love with this world, as a person in love with life, a person in love with humanity, and as a person who has grieved loss so great, the remembrance of it crushes my core as if it is fresh news of the moment, I cannot anywhere in my mind, fathom, inflicting the sickly, tortured, shortened life of mine upon another, just to love so briefly, and to break so eternally. The pain of losing a loved one never goes away; therefore, I would rather not be loved at all, in order to remain no ones pain. To me, that is the doctor telling me, it is better to be alone.
When I got diagnosed, I was still a child. Twenty five is nothing in this world. Most people that age still live at home. I was freshly married though, been to college and graduate school, lived on my own, and thought I had a running start on this world. Then I hit the wall. My marathon knew when to slow me down. Prognosis, at best we can say with what we know of the disease, which isn't much, is ten years. Ten years. I am 25. That means it could be less. What if I've had it longer? My depression laid on me like those lead vests at the dentists office, just heavy enough where I feel a struggle to breath, yet no one knows why but me. So many questions had to be answered. Where will I be buried? Do I want to be buried, I thought I always wanted to be cremated, what if I become a vegetable? How do I make a living will, how do I make a regular will? What are my final wishes? What do I need to accomplish before, well...my god I'm going to die.
My husband would hear none of it, which meant he would help with none of it, which meant he would be part of none of it. It's quite an experience to face your mortality, married, alone. Yes, I understand quite well that women are more expressive than men and that men don't enjoy discussing things of that nature, but that is when the drift becomes a divide and when you turn around, all you can see is the shadow of who used to be there for you. That's what happened to us. It took awhile, but eventually, we were no more of anything we used to be. I credit this disease with a lot of that division. But, if someone isn't willing to go through it with you, then a shadow on the backside of your memories is exactly where they belong. No regrets there.
I had one attempt at love after that. And it was a great one. He was there at every doctor appointment, asking tons of questions, all up in my business. Turned out, he loved me for my pills. We can guess how that turned out. Since then, it has been utterly difficult even telling a man that something is "wrong" with me or getting close enough to someone that I feel like I should. At this point, I have been diagnosed for 12 years. Remember that lovely little 10 year prognosis? When you feel like you have beaten death, you still always feel like you're walking in its shadows. Waiting. Where is the rock I'm going to trip over? Where is the noise that will catch me off guard? Where is that bus that's going to come completely out of nowhere!! You're number is always up, death just hasn't read the card yet.
So no, I never had a doctor tell me that being alone is better for me at any point in my trial with scleroderma. But I've had them tell me that I'm not going to be able to have a family. I've had them tell me they can't save my life. I've had them tell me I'm not going to probably live to see 40. And I've had them tell me that the years that I do live on this earth, are going to be a struggle. As a person in love with this world, as a person in love with life, a person in love with humanity, and as a person who has grieved loss so great, the remembrance of it crushes my core as if it is fresh news of the moment, I cannot anywhere in my mind, fathom, inflicting the sickly, tortured, shortened life of mine upon another, just to love so briefly, and to break so eternally. The pain of losing a loved one never goes away; therefore, I would rather not be loved at all, in order to remain no ones pain. To me, that is the doctor telling me, it is better to be alone.
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