When I was a kid, I could walk. It sounds funny to me saying that now. I can still remember a time in my life when I was not dependent on a wheelchair at all. My unknown muscular condition teamed up with a case of scoliosis, and gradually threw my balance off when I walked.
This resulted in my being afraid of falling down all the time, which I often did anyway. So, one summer about fifteen years ago I did what I thought was safe. I sat.
If I was able to think like an adult back then, I wouldn’t have given in so easily. I would’ve tried harder to keep what I had. Any suggestion a medical professional made to me back then was met with stubborn defiance. I thought my doctors wanted me as a guinea pig, my physical therapists wanted to take away play time with my friends at school, and the orthotics department at the children’s hospital was purely developed to wrap kids up in cumbersome plastic casings that caused sores.
In a child’s mind, this is how things can appear. Even worse than that, my parents went along with these terrible suggestions and ideas. They signed forms for surgeries, let me be poked by needles, and watched as I was hauled off to the operating room time after time.
Oh, those were the days.
There were a lot of scary times, but those are in the past now. My childhood was a happy one in general and it took me until I was about seventeen to view some of these circumstances in a more adult mindset. This happens to all of us at some point.
I finally understood why people were making me go through all of these procedures and hassles. I realized my parents didn’t want to sign papers granting surgeons permission to alter my insides. They were only giving these doctors and medical professionals the green light to try to help my physical being.
At the time, what I went through as a kid was seen as ripping away any normalcy I could possibly obtain. Life was “so unfair.” I wouldn’t have said I was experiencing my idea of a quality life. But, what did I know? I was young and didn’t even understand what life was really about. A great day for me as a youngster was riding my little red tricycle and playing with dolls.
For a number of years, I hadn’t undergone anymore planned surgeries. I finally felt as if I was free from the grasp of the medical world. It felt so amazing to be finished letting people decide how they thought I needed to be repaired. A giant weight was lifted off my shoulders. Ah, freedom was sweet!
Then my appendix decided to throw a wrench in the works nearly two years ago. Since my internal organs aren’t exactly in the same places as a text book might illustrate, the appendectomy was not a simple scope procedure. Following surgery, there were some complications with kidneys not wanting to function properly and fluid in my lung.
I think I was seen by five doctors from a bunch of different specialties. Suddenly, I was described as being fragile and weak…two words I despise.
I was prescribed an oxygen machine, scheduled for a bone density test, and signed up for more appointments with doctors I had maybe met once. I felt as if I was right back to where I was before.
When I recovered and began going to all of these appointments, I showed up frustrated at each and every one. There was a question on the forms I filled out prior to my bone density test which asked me why I needed the test.
In my mind, I didn’t need it. I wasn’t some brittle piece of glass. Being the sarcastic person that I am, I answered that it wasn’t needed; I was only there because the doctor thought I was fragile.
In the end, my bone density was normal like I already knew. I should have told that doctor from the beginning I wasn’t going to do it.
Another doctor, the pulmonary specialist, and his nurse practitioner wanted me to wear oxygen at night. This is something I agreed to because it seemed like something reasonably simple, even though I felt I didn’t need that either.
Initially, I was given a smaller machine to use with a hose. Testing of my oxygen levels was prescribed every couple of months as I was told to keep increasing the amount of oxygen I was receiving. After some time, it was suggested I try a larger machine with continuous flow oxygen and a full-blown face mask.
You’d better believe I gave them a full-blown no!
I conceded to trying it out; that way I couldn’t be accused of being entirely disagreeable. It was after I tried it out that I refused the new machine and mask. It came down to the fact that it interfered with my quality of life in some way.
When I donned the mask and my personal care attendant flipped the switch, this eerie feeling came over me. No longer was I lying in my bed at my apartment, but I was transported to a drafty hospital room where I half expected to hear a monitor beeping somewhere over the loud noise of the machine itself. The feeling made me sick inside. Maybe I would sound picky, but I knew I had to tell the doctor and his practitioner I just couldn’t do this.
When I informed the nurse practitioner of this over the phone, she was not pleased. In fact, her tone was almost chastising, as if she were addressing a child. It was stated it was advisable that I not go against their orders because without more oxygen, she informed me yet again of the eventual possibility my heart might work too hard and give out as it had with a close friend of mine who had Muscular Dystrophy.
She even used the line, “You don’t want to end up like your friend, do you?”
That line closed the deal for me. It was infuriating she would even bring that up! I held my position and still refused and told her my reasons. My quality of life is important to me, and if I feel strong and healthy I don’t want to sacrifice time and simple things I enjoy for anything that seems pretty unnecessary. What I experience is vital to my happiness.
I want balance in my life. The state of contentment I currently am in is something I want to hold on to.
What I never told the practitioner was I had conducted a little test of my own with the oxygen monitoring device. I ran a test overnight while on my small oxygen machine, a test without any oxygen at all, and the final night a friend borrowed the unit and ran a test on herself.
Both of my tests were pretty equal regardless of the oxygen, and in comparison to the results of my friend’s test, her results were slightly better than mine. We both thought the outcome was rather interesting. I wish I had a monitor of my own so I could test the oxygen levels of more of my friends!
It is important to get across that I do understand the importance of listening to medical professionals. They should be taken seriously and their suggestions should be considered. There is a line, however, as to the necessity of what a doctor suggests. Everyone has the right to decide how he or she wants to live their life.
The suggestion made to me I felt I could do without, and it would not adversely affect my health in a drastic way. This is the adult choice I made. Other people might tell me I made a mistake, but I don’t think I did. We only have one lifetime, and I am trying to make the most of mine in my own way in order to achieve my own sense of quality and balance.
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