My health is preventing me from working at the moment, so I'd like to use my time to help sick kids feel better, not with pills, but with crochet. Follow my journey on my blog ~

Thursday, March 21, 2013

Behind it all

I've been busy this early-morning setting up for my first donation run, as well as some potential ways to recoup the costs of materials through selling small crafts (not amigurumi, they take way too long).  My family has enabled my yarn shopping wonderfully thus far, but they are already stuck with my rent and (shudder) my medical bills.

All this preparation has gotten me thinking about the doll I received when I was little, wondering about the person who made it, and wishing I could say "thanks."  I had to have a particularly nasty kind of test done periodically to make sure that the "issues" that had required surgery had been remedied properly.  I'm not sure how often I had them, or how many there were in total, but I remember dreading them.  More than that, I remember my mother having to come tell me the day before that we were going to have to go back to the hospital, and how distressed and sad she was.  My pain was hers, too.  Neither of us had any choice, and even I knew back then that it had to be done.  It was because of those tests that I learned to get through painful situations with the knowledge that they would soon be over.  It has been a valuable lesson, more so than anyone could have foreseen at the time.

I can't describe the rush of emotion that came over me when the technician handed me the doll.  It was obviously hand-made, it was soft, and I remember hugging it and being so grateful that someone understood exactly what I needed in that moment.  Something so painful and frightening is very difficult for a child to express in words, I still find it so.  I truly hope that the dolls I make can provide such comfort, any little bit of distraction would help, I'd imagine.

It wasn't until I became a mother myself that I realized the true gravity of the situation as a whole.  The fact is, I remember very little of that particular time of my life.  I have a few vague memories of the illness caused by the defect, waking up crying in the night, my mother taking me downstairs so I wouldn't wake my father, dad waking up anyway.  I have a few vague recollections of being in the hospital after one of my surgeries, and of course, the tests that followed.  My mother, however, must remember all of it.

The condition I was born with that started all the trouble was a random malformation.  I knew my son wasn't likely to have such a thing.  Fortunately, he has been astonishingly healthy his whole life.  I've been so, so grateful for it.  I know my mom is still going through it with me, but at least I'm grown now.  My son is so much like I was as a kid.  Watching him grow must be very much like watching a re-play of my own childhood, only without all the drama.

There isn't enough support out there for people with sick children, or people who are sick themselves.  For specific conditions, yes -- I had a wonderful support network when I was going through thyroid cancer several years ago, and as I've received diagnoses over the years I've gotten several referrals to groups that would probably be similar.  I suppose the internet is probably helpful for connecting with others who are in the same boat health-wise. I wish things could have been easier on my mom, and I hope that in the future someone will find a way to ease the burden on mothers who had to go through ordeals like mine.

Lots of advocacy has popped up over the years.  There are breast cancer, AIDS, Autism, and various other causes that are proudly displayed in various places in the form of ribbons and colors, walks are organized, products donate a portion of their proceeds.  I think all this is a step in the right direction, but I also feel that in many ways, those of us with more general medical issues -- or issues that are considered "treatable," even if they're chronic, or diagnoses that are less common -- get overlooked in this process.  Thyroid cancer is considered the "good cancer."  First, there is no "good" cancer, and second, a lot of people don't get through it unscathed.  It strikes young people, and for many of us, our lives are never the same.

It took awhile for me to recover from the two surgeries, radiation and thyroid replacement, after which, I found myself looking for a job.  What was I supposed to write on my resume to explain the gap in my work history?  I was in my early 20's at the time, "cancer" isn't a conclusion most employers leap to, nor was it something I felt comfortable putting down... people tend to squirm awkwardly when you mention the word "cancer," I've noticed.  I finally managed to get a job through a friend, and my boss was wonderfully understanding of the fact that I had ongoing medical issues.

Unfortunately, when a new boss took over, things were more "by the book" and I wound up losing my job due to too many absences (all due to documented illness, but apparently nobody cared about that).  I know that my health shouldn't become someone else's problem, but I worked hard to make sure that I kept up with my work, and often came in on weekends or stayed late to make sure that things stayed in order just in case I needed to be absent.  With the new boss's arrival, I was no longer allowed to work outside my normal hours.  My work had recently drastically increased in volume, but it did not suffer--I was just more stressed, which made me more likely to get sick.  Worse, when I was fired, the termination letter cited several "reasons" for my termination, one of which was actually the result of one of my medical conditions.  I ended up feeling as though I shouldn't have bothered working so hard.

Several months after I lost my job, I had my first seizure... in the check-out at Target, full-on drama and ambulance and all.  Things haven't gotten better, in spite of many doctors' best efforts.  I usually have a few good hours each day, but they're at unpredictable times (and narcolepsy often causes me to nap very suddenly).  My general assortment of medical issues has finally kept me from working.  Or have they?

I'm not the sort of person who is happy without doing something useful.  The truth is, I believe my time is better spent making animals to donate than it was pushing papers at my ex-office.  If I can eventually manage to keep the pay out of the negatives, I will have no problem doing this indefinitely.  I would very much like for some good to come out of all of this, and I'm trying to make that happen.  I'm very lucky to have people around me who are so supportive.  It frightens me to think about the way things would have turned out if I didn't have my family to help me.  Perhaps someday I'll be able to to take a more active role in helping those with medical difficulties.  For now, I'll stick to crochet, and try to spread the love as far as I possibly can.

For those of you who didn't know, that's where I'm coming from...

Now back to the koalas.


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