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|Newsletters: HomePEN When You’re Twenty-Something|
HomePEN When You’re Twenty-Something
Becky Streetman, HomePN Consumer
For many of you, this story is not going to be any revelation: it’s going to mirror your own lives. And to others, it will seem like nothing in comparison to what you go through on a daily basis. I always try to be the first one to say, “I know I am lucky. I am grateful for the things I have, because I know there are others whom are much worse off than I.” That said, here’s my story.
I’m sure most of you can think back and remember when you first got sick. Some of you have dealt with this your entire lives. But for those who have not, you may dream of the days when you used to be “normal.” I know I do. I describe my life as having two parts: before I ‘got sick’ and after I got sick. For me, this was when I developed a motility disorder: gastroparesis. I have no motility in my stomach or intestines. One day I was having problems with undigested food and stomach emptying....the next day I was on TPN. Or so it seems. But in actuality there were years in the interim.
Around the time when I got sick, a childhood friend of mine had recently undergone a colostomy due to Crohn’s and his mother loaned me a book she had on hand. I remember reading in it about people that had so little use of their digestive systems that they had to feed themselves through a tube or an IV. What a concept! At first read I really couldn’t believe it. The book was kind of dated, and I thought that for sure they had a newer treatment and possibly cures for problems of this nature. Was I wrong. Within a year I was put on feeding tubes, and when they did not work, I graduated to TPN.
I have never really accepted that I would be on TPN for the remainder of my life. I’ve constantly been researching, asking for second, third, and fourth opinions. And here I am, still on TPN. Actually, to be honest, it’s easier to tell myself that I will be on TPN for the duration than to tease myself by holding onto the false belief that someday there will be “a cure.” I don’t know about most of you, but thinking of “someday” is sometimes more daunting than just accepting life on TPN or EN. One day there may well be some advancement or cure, but I have a difficult time living in hopes of someday. I prefer to try to accept the way things are today, in hopes that I will be able to get on with my life and make something out of it.
And so that brings me to accepting the here and now. I feel very alone in this. I don’t have any friends nearby that are homePEN consumers. Until just recently, the only other people I even knew who lived the enteral or parenteral life were older adults. That’s fine with me, I’ve always been a rather mature kid. Kid? Well I’m 26 - hardly a “kid” anymore. So I sit here wondering: “How do others do it? How do they face living in the non-eating world? Do they date? What is their support system like? Do they deal with other issues besides the feeding aspect such as fatigue, weakness, pain, and the host of enteral and parenteral complications?”
I think accepting major change is one of the most challenging human endeavors. I know that I am definitely a creature of habit. I gravitate to anything that is constant. TPN has become a constant over the past five years. What is no longer constant are the things I once took for granted in my life, such as friends, daily activities, meals, my health. Like I said before, I am lucky. I am very lucky. I once knew health. And now I miss my health. I also miss friendships. I miss food, and eating, and meals. I miss “normality” as I once knew it.
Questioning the Future
One issue I grapple with is the future. What will it hold? Changes in my condition aside, will I ever have a meaningful relationship? Will I ever have children? Will I grow old alone? I know that anyone who is dealing with TPN or EN has a vast number of issues to deal with, and I don’t mean to minimize those issues of older consumers; however, as a 20-something TPNer, I wonder if others at or around my age deal with the same issues? I fear I’ll never have a spouse. Who would want to become involved with me and my illnesses? I fear I’ll never have children. Physically it would be improbable that I would actually bear children, but could I even ever adopt a child? (If I can barely care for myself some days, how could I care for a small child?)
What about employment? I fear that my illness will always be an obstacle in my employability. Explaining to a potential employer that, well, I wasn’t employed last year because I was going through a particularly rough time with my illness, is not high on the list of marketable skills. As young adults, most of us aren’t married, we have not had children yet, and we’ve not yet established ourselves in the work force as desirable, reliable employees. I wonder how other people around my age deal with these issues.
I hesitate to write these things for fear that I will appear hopeless, or feeling sorry for myself. I’ll admit, some days, I do feel hopeless. But everyone has a bad day every now and again. I don’t necessarily believe these obstacles and issues cannot be overcome. On the contrary, I believe that despite our illnesses, we are reliable, responsible, hardworking individuals. I believe that we are capable of giving and receiving love. I believe that we can accomplish a great deal. However, I also believe that when we are faced with particularly daunting challenges, that we should have somewhere to turn to, someone to talk to, someone else that understands.
I suppose that’s why I’ve written this. With acceptance of my illness, I also have to accept that there will be some changes and challenges. Just as I know that only I can accept this way of life, I also know that only I can overcome the obstacles. I’m so glad to find the Oley Foundation and to find others that understand our way of life.
Lifeline Readers are welcome to contact Becky at 3520 W. Hillsboro Blvd., Apt. 201, Coconut Creek, FL 33073; (954) 574-5283; BStreet666@aol.com.
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week
Oley Regional Conference