Michell’s LHON Blog

Harder Than I Thought

I can’t believe its been a little over 5 months since I’ve been in China. I’ve been thinking everyone there during this holiday season thats for sure. I miss everyone, and it snice to get an email from you every now and then, but I understand we’re all busy.

I remember the translators and especially Dr.Tony always telling me that in order for these stem cells to work  to keep a positive attitude, stay happy, and try to be stresfree and carefree. Many people might think that might be iculus, but when I first heard about that I honestly thought it jwould be a piece of cake. Like how hard could it be…I’m usually optimistic, always smiling, and hardly ever let anything bother me. Little did I know…it’s ALOT harder than I thought.

This whole semester was definitely not how I ever imagined it owuld be. Everything has been extremely difficult for me physically, emotionally, and mentally. It’s like sometimes I don’t even know waht to do anymore. Not sure who to turn to, what to do next, it’s like I’m lost in this changing world and I don’t know what to do.

Before I thought I had energy as if I was the energizer bunny or something, and now…I’m super tired all the time. This could be a normal teenage thing you might say, but I don’t think so. I useed to survive with 3-6 hours of sleep and it would be no big deal. Currently, I sleep 7-10 hoursa night, but yet I still ge etremely tired thorughout the day. Lack of energy is what I have…and it makes me feel horrible. Also, during the begining of the semester, I cme home everday when I didn’t have to stay after school for some sort of practice and jwould pass out in my room or on the couch even for that matter. Now,I just dont have the time to take naps, so I will attempt to sleep earlier and thats just not working. It does help to keep myself busy though in shcool, but latley it seems as though I’m not modivated enough to do certain things. I still believe things will get better…Just not sure how soon that will be. Either way, I’m sure this is what God wants for me, and will have to learn to manage…

It seems like my emotions have been an ever changing rollar coaster these days. And for those who knw me, and had the chance to know me, I was definitely not like this before. This change is so hard for me, and it seems like no one is there to understand that. One minute I will over joyed with happiness, and the next I’m like depressed and cry my eyes out it seems like. It’s like this bipolar reaction I have to certain things. I wonder why these things are happening, but I guess it’ll be a mystery to us all. I must admit, the hardest thing about being so emotional has to be that I’m one to not show my emotions towards others. Therefore, I usually just keep quiet when somethings bothering me or just try to be happy, which I’ve learned to get really good at. This happens to me most when I’m at school, church, hanging with frineds, and even family…but mainly anywhere out int he public. It’s not something I particular like to do, but I’ve been doing it my whole life practically…So, now it feels like I have to be one tjo hide my emotions and always be brave and try to be happy. It’s hard, but I don’t know what else to do. I don’t anyone understand what I’m going through, how I feel, or how hard I have to try sometimes. I just want to be like I was before. I was always so happy, optimistic, and always believed int he best. I was always such a high achiever as well. And now, I won’t say I’m not that person, but thigns has definitely changed. But then again, life does have its ups and downs. I guess I’m at a down moment in life…again.

Now, I’m mentally exhausted of everything I’ve done and it brings on a lot of stress. I’m involved in many things, and they all take commitment, but I’m used to that. Now, I’m not sure if I can handle all that. I want to prove myself and everyone else who say I cannot do it, that they’re wrong. Currently, I’m in debate, mock trial, youth group, piano, volunteer work, key club, asian club, peer counseling, and the list goes on and on it seems like. But on top of all that, I need to focus on keeping up my grades. At first, that didn’t seem like a challenge at all. Life was good, teachers were really cooperative, and all worked out. And then I don’t even know what happened, but teachers didn’t listen when I needed certain accomadations. Others didn’t understand how to teacher one with a visual impairment. I try being patient with them, and now its towards the end of the semester, and my parents are definitely not happy with how things are looking, but neither am I. I strongly believe with my determination and stubborness I can get my grades up where they’re supposed to be by the end of the semester. I’ve done it before, and I can definitley do it again. If I really want something that badly, I can do anything!

The only prblem with all that is that I’ve loss modivation on certain things. I wouldn’t exactly say that I’ve given up, because I would never do such a thing, but I am definitely unsure of many things in life though. Before, I used to be so sure of things. I knew what I wanted and what ot aim for in life…all that has changed. The only thing I know that is I want my vision back more than anything…

No one understands what its liek to live with a vision loss, unless you’ve actually been there yourself. There are people in life who make it seem easy and ok, but its really not. I know many friends, family, and others believe I make it seem so easy for me to live with a visual disability, but still can be so outgoing, social, semi-successful, and faithful to the Lord. But I honestly do try to make it seem that way, because I do not want anyone feeling sorry for me, or anything like that. I will admit it is super hard sometimes though, and no one will ever understand the challenges and hurdle sI’ve had to go thorugh for the past 6 years. \

This is the time of my life where I should be getting my permit, if not my driver’s license my now. And look at me now, relying on my dad to drive from place to place and if he’s buys hoping someone else can take me, if I’m lucky. Don’t get me wrong, I appreciate everything everyone has done for me, especially my parents, since I completely understand this is probaly hard for them as well. But its so hard to hear all my friends talking about getting their permit or license, or even getting a car as a gift…

It’s like I don’t even have the independence to drive myself places. I don’t mind others taking me, but its not as convient I think. Somehow, I feel as though its holding me back from life. For example, there are times I want to go somewhere, and my parents don’t want to go. Therefore, that leaves us here at home, when I could of just driven myself. And now its not even an option at the moment. Sometimes, it seems like others have their lives so much better than me. But I know I know…everyone has their own sufferings and problems, but some aren’t as visible as others. These sufferings and hard times is what makes us a stronger person. I do believe thats true, and think of it often.

And it kinda bugs me sometiems when so many asks for electronic items or materialistic things for Christmas, when there’s so many other thigns we could be asking for. I’m not saying its bad to have materialistic things, because I myself have done the same. But I’ve been thinking a lot about families who don’t have enough, soldiers who can’t be home with their families, and suffering all over the world. Honestly, this year all I want is happiness, love, support, and most of all the estoration f myvision. I dnt think  can ask for anthing more. There is anything that can replace my health, love,a nd happiness. And support plays a keyfactor as well, because I want to know and feel that what I’m doing is the right thing…

Sorry, if this was an extrmely long post today. I guess since I haven’t posted in awhile I had a lot to say. But I think I just wanted to vent and let everything out that was bother me. Even though it might not be everything, it does make me feel better. Also, I wanted everyone to know as happy as I am, I also have my ups and downs. I do get confused and ually unse.So, its normal if you are feeling depressed, uncertain, or just have a rollar coaster of emotions. That’s the way life is.

Remember, if life gives you a lemon, make lemonade. And if you never heard that before, it t means if life throughs you a situation, just try to make the best of it.

I’ll try to update more when I can. Now, that I’m break for th eholidays, I mihgt have a couple more things to blog abou bereI go back to school. I’m sorta looking forward for two weeks off to ut take it easyand see how life treats me.

Take Care

1 comment December 19th, 2009

Eye Doctor’s Appointment-Nov.25th

Christmas day will be exactly one month since I’ve been to the eye doctor. It’s so strange how time passes so quickly during the holidays and when your just busy. But I didn’t forget about my blog and knew I’d find the time to update it, since everyone is so eager to hear about the good and/or bad results.

I had a pretty early appointment, and was so ready to go to hear all the good news the doctor would give me. This is a different doctor than I went to see a few months ago. Now, I see the first eye doctor I went to, even before I got diagnosed. It was qutie an experience I must say. I did every test they had it seemed like, which was pretty much the same tests they do at that eye clinic in downtown Qingdao. It was neat to actually experience those same tests and procedures in the United States.

Well, my dad and  I both wait anxiously in the room awaiting the doctor and his results. We weren’t sure what the outcome would be. As usual he did the eye chart test, which was hard for me actually at first. Since I haven’t been there in so long, I honestly wasn’t used to the chart being so far away. So, I coudl only read the first row in both eyes, which was the same as the last time. It was at least good to know things were stable or whatever.

And then he started off with trying different lenses and magnifiers, asking if I could see the chart with them. Surprising enough, I was able to read the second and third row with these lenses. And just to make sure I wasn’t just fooling myself or him, we tested this at least 5 times. Everytime I got it correct. This might not seem like a big deal to many, but it is because patients who have an optic nerve problem are usually not able to get it corrected with glasses. And just to see slight improvement slike that made my dad, because it could probaly help me in readying, studying, etc. Maybe one day it might even help me in driving! That would be the best Christmas EVER, if that happened, and I believe someday it will. I have no doubt what so ever.

So, I had the oppurtunity finally to be prescribed with glasses that would help some, but I’m hoping it will help more in the future when I see mor eimprovements. Therefore, I decided not to purchase glasses just quite yet, since they are kinda costly and will probaly be more of a benefit once I see mor eimprovements or what the entire time. So, maybe after my next eye doctor’s appointment, I’ll consider the fact whether or not I want glasses.

I was so excite dto visit Dr.Terry Cole again, since he did such a tremendous job of explaining every possiblity I had or could do. He was super patient and tried to help me come up with the best thing tjo do for the meantime. It seems as though he works alot with low vision patients , since he knows so much about it and had a good variety of low vision equipment. He had things like magnifiers, CCTVs, etc. Since I’ve had LHON for 6 years, I was qutie familiar with all of this equipment, but it was neat to see a doctor so familiar and explaining all of these thigns to me. He explained how helpful they were to his other patients and reccommended certain things or what not.

Overall, I would say it was a useful and worth while doctor’s appointment. It went so well this time, I just can’t wait until next time. As of now, I’m not sure when my next appintment will be. It will either be in 6 months or a year, but I’ll be sure to let you all know for sure.

Hope everyone is enjoying their holiday season!

Add comment December 19th, 2009