Everyone has issues, right? Everyone has some things that they must fight through, and sometimes the fight is exceedingly harder than you think it should be. It’s worth the fight in the end though, right? That’s what everyone says. That’s what I tell myself. While you’re in the middle of that fight, though, it is disheartening, and I know that I’ve thought about giving up on more than one occasion. Now, I have no idea what I would do if I ever did give up, but I certainly considered doing just that once or twice.
Each of us has a unique situation that involves our own vision and physical limitations, abilities, location, family and support, feelings of independence and self-doubt, and our ultimate goals. What I’m going to describe is my own personal situation and how I see it. My vision is very poor, 20/400 corrected in ideal conditions. That means that what a person with normal vision sees at 400 feet, I must be as close as 20 feet to see with my glasses on. These tests are done with indoor lighting and optimal conditions, so I imagine that in outdoor situations that number gets much worse.
Photophobia (Light Sensitivity)
Photophobia (light sensitivity) can have a huge impact on my vision personally, and I’ve heard similar comments from many others with Albinism. On some bright sunny days, my visual field is reduced and/or I experience eye pain, headaches, and a general inability to look at anything higher than the ground in front of me. Most days are not that bad, but since I have no control over the sun’s brightness from day to day, this issue is worth noting.
I Can’t Drive
Since my vision is so poor and photophobia affects me so strongly, I cannot drive. I don’t believe that I ever will be able to drive. I’d like to say that I’ve come to terms with that, but it seems to still frustrate me on a weekly basis. The inability to drive is one of my most frustrating obstacles in finding a job, but that is due mostly to the location in which I live. I live in a rural area outside of a town of about 50,000. The town is very spread out with almost non-existent public transportation. We have one cab company and basic paratransit, neither of which is a viable option for daily travel. So, my job search is limited to the type of schedule for which I can reliably find a ride. That eliminates any sporadic retail type jobs or restaurant work, and it also eliminates several jobs that I could get with a Bachelor’s in Psychology that involve odd shifts, nights, weekends, etc.
The other big issue that I face is self-doubt. Because I haven’t been able to try my skills at even the most basic types of jobs, I have some doubts about whether I could perform some of these jobs, and consequently, I doubt my abilities on skilled jobs that I may actually be qualified to perform. I feel that the main reason for my self-doubt involves my inability to see and read facial expressions and some smaller aspects of body language. Over the years, I have gotten very skilled at reading tone of voice and larger aspects of body language, but because of my vision, I cannot make eye contact or see where someone is looking, I cannot see small facial features unless I’m very close to a person, and I cannot see small hand gestures. The importance of these types of perceptions has really become apparent to me in the past few years as I’m working toward becoming a counselor. I have learned that my alternative strengths can make up for some of these weaknesses though, and I try to remind myself of that. A person can fake eye contact so some extent, and a person’s overall body language and tone of voice can provide some insight into their mood, attitude, and potential actions.
My Own Worst Enemy
Because of these two main issues, I alternate between applying for jobs that fit my criteria and doubting whether I’ll ever be able to work like a normal person. I want to get a job and work like any other person, and some days I feel like that wish is only a distant dream. Another “dream” I have is to move to a city which will allow me to get around independently. I feel like a normal person can look at his or her options, pick a city, and just go. When it comes to my own life and my own hopes for moving though, I only see obstacles. Maybe this is a poor mindset that I need to keep working to change. I certainly consider myself a work in progress. I’m not afraid to grow and change, but I feel that I need some more encouragement in that area. I’ve been told by a few people that I could do absolutely anything I put my mind to, but my mind seems to get in my own way quite often.
Now, I have worked in the counseling field as an intern at an addiction treatment facility, and I learned so much about others and myself there. I would not trade that kind of experience for anything, and I am so thankful to have had that experience. I feel like it shouldn’t be so hard to find other opportunities like that though.
What Am I Doing About It?
So, what am I doing about these struggles other than venting on my own personal blog? I’m in graduate school. I feel as though the more options for solid and skilled employment that I provide for myself, the less self-doubt will exist as an issue in my mind. I hope that with more job options, I will also feel more comfortable and confident with the idea of finally moving somewhere that will be more supportive to my independence.
I haven’t finished my fight. I’m still right in the middle of it, as a matter of fact, but I don’t plan to give up. I hope my fight can encourage you guys to keep fighting, because half the experience is in the journey, and our fight is our journey.
For you parents of children with Albinism, it’s okay if your child struggles. You can’t fight this fight for him or her. You can encourage your child, you can give him or her the tools to fight, and you can even try to lay out some sort of metaphorical road map, but it is still important to keep in mind that he or she will have his or her own fights. This is the kind of fight that a person must win for his- or herself; otherwise, how will a person feel accomplished when the battle is over? How will he or she even know when the battle is over?
As always, stay curious.