#flashbackFriday (view the video) Before MS, my oldest niece and I would go on hikes on Saturday mornings. I’m hopeful that one day we’ll be able to do this again.
I’m a control freak and I often feel that I’m not in control of my body when it comes to this disease. Reality is that even in the space of uncontrollable situations, there are things I can control: how often and the types of exercises I do, what things I put in my mouth (and when), whether or not I ask for help, my response to the challenging days, etc.
In 2014, I helped heal myself by adopting a “Me first” attitude. I woke up and immediately went to the gym (weights, elliptical, pool) and ate the most nutrient dense foods.It helped me ambulate without pain or discomfort. Things changed with the death of my great grandmother in October 2015 and my aunt in February 2016. I didn’t put me and my health needs first.
I’m going to get back to that place. Today I start to reclaim some of what’s lost.
It’s a bfd because it is the 1st day of the 4th quarter of my year long effort to take care of myself.
Everything flows from my 5 categories of self care: Nutrition, Exercise, Stress Management, Brain Health, and having more Love & Support in my life.
It is my belief that those powers combined form a the basis of my healing and prevention of the progression of Multiple Sclerosis.
In the 3rd quarter I started a ketogenic way of eating (Nutrition), I joined CrossFit (exercise), I joined Toastmasters (Brain health), saw a therapist regularly (Stress Management), and let my friends into my struggles (love & support.)
I’ve made many positive strides, I also had a few challenges that I’m working to move past. It is mostly around taking on other people’s pain and struggles as my own. I am a great friend. I’m learning to be that great friend without sacrificing the needs I have. I’m not as extreme as the kid in the YouTube video, but I know that there are times that I need to worry about myself.
I expect big things from myself in 2015 and in this 4th quarter in particular.
My sister doesn’t entirely understand what it means to be legally blind. I imagine that a lot of people have trouble with the concept. Hell, even I have trouble with the concept. Basically, it means that my vision is 20/200 or worse in my best eye.
But what does THAT mean?
It means that a person with 20/20 vision can see objects and people standing at a distance of 200 feet away perfectly clearly and I can MAYBE see objects that are 20 feet or less away from me. I have to be very close to it in order to see it. I blink a lot to stabilize my gaze for a few seconds.
Even when an item is super close, I may not be able to see it, especially if light is shining on it. If a light is shining on the object, I can’t read anything on it. I also don’t recognize people’s faces, a condition called prosopagnosia, or face blindness. So, If you see me out in the world and I don’t recognize you, don’t take it personally.
Magnifying glasses don’t help and it can’t be corrected with glasses, I just have to learn to cope with it until MS decides to say, “Ok, I’m done fucking with your vision today.”
So, being declared legally blind doesn’t mean I’m on my Stevie Wonder and can’t see anything. But, I can’t see street signs, read books, or see people walking more than 20 feet in front of me and none of this can be corrected with glasses.
When did this start?
Before Multiple Sclerosis entered my life, I had perfect vision. 7 months post-diagnosis, I started experiencing weird vision. Like, everything I looked at was lightly shaking. It was as though I was looking through a fish tank. People and inanimate objects were moving, as the waves in the fish tank move.
It started really light and now it has escalated to shaking much like an unsteady camera. Think “Cloverfield.”
It’s called Nystagmus It sucks seeing the world this way. The most recent neuro-opthamologist appointment (January 16, 2015) says since I’ve had it for a year and a half that it’s unlikely that it will go away. There are no drugs to treat it nor glasses to correct it. I’ve found humor and frustration in it. But, I find that like owls, I have to move my head around to increase my ability to see things. I don’t have the incredible range of motion, but it’s the same type of bobbing and tilting motion.
So, to recap:
I am legally blind because my vision can’t be fixed with glasses or contacts.
My eyes physically shake, involuntarily/uncontrollably (like the eye in the gif above), which has caused the legal blindness.
No meds will treat it.
I have trouble recognizing faces
Tail lights, headlights, text messages, and neon signs just look like a blur.
I can’t read books or drive my car. (this one really hurt my feelings.)
It won’t go away until MS decides it’s tired of fucking with my vision.
Below is a video of what I think I look like when trying to see something
In July 2007, I attended Camp Obama in Burbank, California. There, I met one of the most important people in my life. He was a trainer at the ‘camp’ and recited a poem called “To Be of Use” by Marge Piercy. That poem stuck with me all these years.
“…And what can be more special than that there is no boundary. And there should be no boundary to human endeavor. We are all different. However bad life may seem, there is always something you can do, and succeed at.” a Stephen Hawking quote from “The Theory of Everything” opened my eyes.
After 26 months of living and struggling with the symptoms of MS (first being unable to walk to my mailbox before my legs stopped working, chronic fatigue syndrome, being declared legally blind) and how it’s affected my thoughts on my value/worth to society, I realize that I can still be of use… I just gotta figure out how to be of service.
My self woth/self-esteem has been tied into what I can do for others. The last 6 months has been an exercise in turning that energy inwards. I promised myself one year of self-focused care on June 26, 2015, I will complete that one year. I hope to have a better understanding of who I am and what I want in my life and how I can be of use.
I watched this speech when I was going through a particularly rough patch in my fight with MS. Every few months, it seemed that there was some new symptom, a new challenge on my plate. I’d get over being sad and start the fight against symptom A and appeared to come to a place of relative normalcy when symptom B would come along and knock me on my ass.
I needed to hear these words.
I’ve spent much of my time with this diagnosis in a cycle of sad and depressed vs. hopeful and optimistic. In April, in a moment of deep sadness and depressed, I, for the first time in 9 years, I cut myself out of feeling sad and overwhelmed. I was mourning the loss of some crucial functions that I used to cope when I was depressed or sad, like driving. I drove all across this country in 2008, my car was my freedom, and that was taken from me. I missed driving for escape, I miss reading books.
I sometimes play this to remind me to put my game face on, stop feeling sorry for myself, and remind me that it’s ok to cry.
“Live… live… fight like hell. and when you get too tired to fight, lay down and rest and let somebody else fight for you. I can’t do this ‘don’t give up thing’ all by myself.”
Thank you, Stuart Scott, for inspiring me to fight like hell and teaching me that it’s ok to call on the people who love you when you simply need to cry. Even after watching this, it took me a while to feel comfortable enough to let my guard down and share what I was/have been/am going through with people. But, at every turn, the people I’ve shared with have been tremendously supportive, caring, and loving in their response.
His words kept me going when I felt like giving up the fight.
I didn’t tell people what I had because I thought I’d be perceived as weak or be judged… for something I developed through no fault of my own. Typing that makes me realize how ridiculous that thought is. I honestly didn’t think I mattered. I come from a family that believes the whole “Don’t tell your problems to people: eighty percent don’t care; and the other twenty percent are glad you have them.”
I care, sometimes too much for people, so I don’t believe that’s true.
I’m feeling so incredibly fortunate to have such amazing people in my life. 2015 is going to be a good one.
On June 26, 2014, I decided to take charge of my life. I embarked on a total lifestyle intervention focused on 5 key areas of my health: nutrition, exercise, stress management, brain health, and having more love and support in my life.
Focusing on me meant I had to rid my life of all toxic things and people. Anything that did not serve to benefit my health in any of the aforementioned 5 categories had to go, including my mother. I wrote her a 4 page letter telling her that I loved her but had to love her from a comfortable-for-me distance.
I’ve been a people pleaser my entire life, and after getting this MS diagnosis, I was still trying to please others… make sure other people were happy and taken care of. That wasn’t serving me well. I believe that diminishing my risk of stress has helped me see the positive progress I’ve made thus far.
This song is my anthem as I become the person I’m destined to be.