“Our culture of reality TV and aggressiveness leads to some strange personal interactions. When you wield a white cane, you never know what you’re gonna get.” ~Susan Kennedy, Adventures In Low Vision
Sadly, there’s a lot of truth to Susan’s quote when using a white cane or any other type of mobility tool for that matter. Yet we press onward, in spite of. Never let anyone or anything prevent you from pursuing your best life!
Image: Susan is in the grocery store standing in front of her grocery cart with her white cane in her right hand.
The story of my sight loss began 20 years ago, but it was not until last year that it got very interesting and very challenging. My diagnosis is Retinitis Pigmentosa (RP), which is a progressive degenerative retinal disease that is quite insidious. In its early stages, it causes loss of night (low-light) and peripheral vision. In the later stages, central vision may also be affected, causing total loss of light perception.
For many, many years I thought I was beating the odds and had myself convinced that I was not going to end up like other people with RP. My rude awakening came in the form of being declared legally blind at the age of 37, having to give up my job, and losing my driving privileges. Everything crystallized at that point, and I had to face the reality of what was really happening in my life – RP was winning, and I was losing.
I learned that rock bottom is a very real place. Darkness folded in all around me, and I, very briefly, welcomed the embrace of the darkness. I felt myself sinking and saw the brightness of my light dimming, but I could not remain there. My life would not get better by chance. It would require change. With all my strength, I cried out to God to bring me out of the darkness, and He answered.
I knew I had to put a plan in place to get myself on the right path again because if you fail to plan, you plan to fail. The first call I made was to my Vocational Rehabilitation Counselor with my state’s Division of Services for the Blind to request services that would enable me to reset and restart my life as a woman who is legally blind. After suffering from a broken bone in my foot last summer, I knew my top priority was getting a cane and training to use it so I started there. That was my first step toward regaining some of the independence I lost. Often, God takes us through troubled waters, not to drown us, but to cleanse us.
The next thing I did was by far the most difficult – I made the decision to stop hiding my hidden disease. I “came out” on Instagram and openly shared my story for the world to see and join me in navigating the murky waters of RP. This was such a tremendous step for me because I never let people in on my secret shame and feelings of inadequacy due to my visual impairment and also because I worried so much about what people would think. Never again will I underestimate the greatness inside of me because of the limited thinking inside of others.
Presently, I am enrolled in the Adapting to Blindness in a Learning Environment (ABLE) program at the Rehabilitation Center for the Blind (RCB). The ABLE program is designed to teach people who are blind and visually impaired invaluable skills for independence and success at work and/or school. Once I complete the ABLE program at the RCB, I will be returning to school in the fall to set out on the path of a new career that I can sustain as a woman who is visually impaired.
My plan for the future is to become a teacher for students who are blind and visually impaired. There is no greater way to effect change in this world than by imparting knowledge to future generations. Not only can I teach them, I can show them that they are as unstoppable as they choose to be. The only limitations we face in life are the ones we place on ourselves, and my hope is that I will inspire the children of our future to live their lives without limits.
It is easy to hear a person’s story of loss and only recognize loss, but I look back over my story and see how much I have gained. My confidence has grown exponentially, and it is true confidence, not just the façade I previously presented to the world. Once I accepted and began living my life as a woman who is visually impaired, I was free to be myself, loudly, and I firmly believe that beauty begins the moment you decide to be yourself. I have learned to release negative people, emotions, and thoughts that do not benefit me. I have come to understand that if going blind cannot stop me, nothing can; and happiness is not about getting what you want all the time, but loving what you have and being grateful for it. Most importantly, though, I have learned what matters in life – my faith, my family and friends, and the impact I can make on this world.
To move forward we must accept what is, let go of what was, and have faith in what will be. We must be kind, loving and patient with ourselves, as well as others. My transformation was painful but I did not fall apart; I just fell into something different with a new capacity to be beautiful. Everything happens in divine order. The good, the bad, the unexpected, and the unfortunate. Difficult roads often lead to beautiful destinations. Regardless of what is in front of you, it is a part of your path. Follow and trust, believe and hope, forgive and remain thankful, be brave and keep going!
Each year the fourth Tuesday in March is the National American Diabetes Association Alert Day (follow the link to take the risk test) to bring awareness to the issue of Type 2 Diabetes. The story you are about to read is one young woman’s Type 1 Diabetes and subsequent sight loss journey as a result of the disease. I’ve been following Nicole on Instagram for a few months and was so touched by her openness to share aspects of the disease we seldom talk about. Without further ado, I present to you, Nicole:
It’s hard for me to describe all the feelings I had when Stephanae asked me if I would write my story to be featured in the month of March on prevention, diabetes, and vision loss on her blog. At first, I felt so honored and so excited!
Now as I start to write I feel overwhelmed. Will I be able to explain everything appropriately? Can I fit everything that I’ve been through into the next paragraphs I am about to write? I’m going to do my best and so I’ll start with what came before my vision loss, and that was my diagnosis of type one diabetes.
It was April 25, 2000, and two days previous I had celebrated my 17th birthday. I was a junior in high school and an athlete. I played water polo and swam on the swim team. Both sports are very demanding on the body.
“If I didn’t check my blood sugars 8 times per day by pricking my finger and putting blood on a glucose meter, and take multiple injections daily I would die.”
I remember my first symptoms of diabetes very clearly. I was thirsty all the time. I felt like I was in the desert and hadn’t had water in years. I drank anything I could get my hands on. Then I started having to urinate and when I say frequently I mean like 20 times a day. I confided in my best friend there was something wrong with me but I wasn’t sure what it was. During this time I also became lethargic, which seemed to go unnoticed because my mom figured school and swimming were making me tired. My final symptom was weight loss. At first, it was a little weight loss but at 5’2 and 120lbs after about 10lbs of weight loss people started to notice.
By the time I was diagnosed shortly after I started experiencing symptoms I weighed close to 100lbs. I was shriveling away. I was very, very sick. With a fasting glucose test, I was diagnosed the next day as type one. I had no clue what any of this meant. All I knew at the time was that some diabetics had to take shots and I didn’t want to be that type. I couldn’t be the type that took shots. I was terrified of needles. I had a difficult time understanding the doctors.
What the heck were they saying?
I had to take shots now?
Every time I eat and in the morning and at bedtime?
I couldn’t do it I told them, I just can’t do that.
It was explained to me that I was now insulin dependent and if I didn’t check my blood sugars 8 times per day by pricking my finger and putting blood on a glucose meter, and take multiple injections daily I would die. I was in utter shock. That shock would end up in denial. A bad denial that would later lead to vision loss that I could have potentially not had to experience so soon. Years later the guilt and shame of not taking care of my diabetes would also be something I would need to acknowledge, experience, and work through.
Diabetes is a difficult thing. There are a lot of people, probably the majority that have no clue what diabetes is and that there are different types of diabetes. I think it’s really important to have an understanding of how type one and type two diabetes are different.
About 5-10% of diabetics are type one. The estimated total of type one diabetics in the US is 1.25 million people. Type one is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. This happens when the immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. We don’t know yet what causes type one other than there may be both genetic and environmental factors. It is NOT caused by anything that ate such as sugar or anything I did.
Type one diabetes does not discriminate against age, race, religion or anything else. Anyone can get it at any time and any age. As of today, there is no known cure. So my main job is keeping myself alive.
Type one means sometimes I need sugar when my blood sugar is low and when my blood sugar is high I need to take insulin to bring it down. I also need insulin every hour which is administered through an insulin pump. So now instead of taking shots, I wear a small device that pumps insulin into my body every hour. Diabetes is constantly on my mind. I have to stay 2 steps ahead at all times and if I don’t the consequences can be deadly.
There is nothing about type one that is easy. It’s dangerous because insulin is one of the only medications I can think of where I decide the dose, I decide the dose based on what I am eating and how many carbohydrates I will consume. If I go too low or too high I can go into a diabetic coma or have a seizure or die. I face this reality every single day when I make educated guesses about how my body may or may not respond to something.
The doctors want my blood sugar to be between 80-120. If I don’t try to keep my blood sugars where they should be, elevated blood sugars over time put me at a higher risk for complications and can further damage my eyes.Maintaining great blood sugar, or stable blood sugar makes me want to laugh and cry at the same time. Everything affects blood sugar. There are so many variables it’s like I can’t tell you how many times I’ve wanted to punch a doctor in the face when they act like this disease is simple.
What You Don’t Know Will Hurt You
Diet, exercise, and stress are only a few things that can make my blood sugar fluctuate. I also wear a continuous glucose monitor (CMG). I insert a new one every 7 days. It is inserted with a needle and when I pull the needle out a tiny wire stays under my skin. Then it reads my blood sugar every five minutes and sends the glucose readings to my iPhone. If I go too low or too high my phone alarms so I can drink juice or take insulin.
My CMG doesn’t mean I don’t prick my finger and use my glucose meter. The CGM can be inaccurate because it measures fluid, not blood. My doctor says blood is more accurate so I still do finger pricks anywhere from 7-10 times per day on top of wearing the CMG. This new technology lets me be able to link my mom to it too, so if I am low or high she is getting the same information on her phone to make sure I am okay.
One thing they weren’t lying about? The doctors and books will all tell you about complications. No one wants to hear about or talk about complications but I’m going to talk about it because diabetes is what got me in this mess with my eyes. The main complications from diabetes include; cardiovascular disease, nerve damage, kidney damage, amputations of the limbs, and eye disease; retinopathy, and blindness.
I often have people ask me “if I have the bad kind of diabetes?” Sometimes I answer their question with the same question they have just asked me before I respond. I do this because I am thinking. Type 2 diabetes is when a person’s body doesn’t use insulin properly. This is called insulin resistance. Your body will make extra insulin to make up for it but over time it isn’t able to keep up and it can’t make enough insulin to keep your blood sugars in a normal range.
Type 2 diabetes makes up 90-95% of diabetes. It is treated with diet, pills,and exercise and said to be largely preventable. The center for disease control estimates 29.1 million people in the US has type two diabetes with 8 million people who are undiagnosed or don’t know they have type two. Unlike type one we do know what causes type two diabetes and what contributes to it. Being overweight or obese can cause insulin resistance. We now see type two diabetes even in children due to obesity. Genetics and ethnicity can also play a big role in type two diabetes. There are other risk factors for type two and I encourage you to learn more by visiting the American Diabetes Association’s website.
But back to the original question about which is worse? Both type one and type two diabetes can have the same complications due to poor blood sugar control or living with diabetes for a number of years. The longer you have diabetes the greater your risk for complications such as eye disease. If you have any kind of diabetes you can try to prevent or delay complications by keeping your blood sugars as close to normal range as possible.
There is a blood test for diabetics called an A1c to give us an idea of how well we are doing with our blood sugar control. If you have type two diabetes or you are “pre-diabetic” I’d urge you to change your diet immediately and try to lose weight. You can prevent lifelong medical issues and save yourself a lot of money. In my opinion as a type one I’d say diabetes sucks in general, but that the constant highs and lows and rollercoaster ride type one diabetics face every single day for something we didn’t cause or ask for, chasing of blood sugars, and doing something our pancreas no longer does for us makes type one the “bad” or worse type of diabetes.
Diabetes And Sight Loss
Now that I’ve given you some diabetes 101 let’s get to the good stuff. What on earth happened to my vision? From 2009 to 2015 I had my yearly eye checkups. All diabetics should be getting an annual eye exam. In 2009 I was prescribed a mild prescription for glasses because I had a little trouble seeing far away.
“Type one is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food.”
In 2015 I remember telling my mom I wanted to see if I could get contacts at my upcoming appointment. My doctor had retired about 6 months previous and I would be seeing someone new that day.
After I was dilated the new doctor looked at my eyes and I heard her gasp.
“What is it?” I asked her.
“You…you, have diabetes behind the eyes!”
I said “okay?” “What does that mean?”
She had a thick accent and she said: “they’re bleeding…your eyes are bleeding.”
She got up quickly and appeared frantic. I didn’t know her so I wasn’t sure if she was like this all the time or what was going on. I followed her to the front desk. She wrote something on a piece of paper and handed it to me.
She said I needed a retina specialist and that there was nothing she could do for me. Come back in a week or so and this doctor will look at you. So now I was worried and had no clue how bad my eyes were.
I went to my parent’s house and told them what happened. My dad said, “No, you’re not going to that doctor, I’ve seen him before and he’s awful.” He said “you can see my doctor at UCLA, Dr. Gorin. He’s the best of the best.” I asked my dad why he had a retina specialist and my parents told me my dad had been diagnosed with RP.
I think it was about a week after that and my mom was driving me to UCLA about 60 miles from where I live to see this new doctor, Dr. Gorin. They got me dilated, something that would become my new normal. They did scans, took pictures and then it was time to see the doctor.
A lot of it is a blur but I remember this part the most. I was standing facing the doctor. My mom and two fellows (doctors in their last year of school) stood behind me. The doctor was very nice and he spoke gently.
He said “Nicole there are two things going on here. You have severe diabetic macular edema.” “You also have severe, diabetic retinopathy.”
I think I heard a buzzing sound in my ears or it was like they were ringing. “Well, is there anything you can do?” I asked.
He said, “yes there is treatment.” “ We can use a combination of lasers and injections.”
“To my eyes?” I said…” while I am awake?”
“Yes,” he said.
I was suddenly aware of my legs…oh shit they were buckling. Don’t pass out Nicole. This was the second time in my life where I felt resistant. I couldn’t do that. I was too scared. He said I had to and that if I didn’t I would go blind. My paralyzing fear was interrupted when he went on.
He said, “and this can be very difficult for the entire family, this diagnosis.” I didn’t know why he was saying this.
In slow motion, I turned around and faced my mom and she was crying. Quietly tears ran down her face. My mom never cries. She is so strong. I knew now this was bad. I felt my tears start to roll down my cheeks and I was taken to the front desk to schedule my first laser appointment. I was afraid was I was going to go blind.
How Diabetes Damages Sight
I learned all about retinopathy. Over time too much sugar in my blood blocked tiny blood vessels that nourish the retina, cutting off blood supply. So my eyes started to grow new vessels but they are weak and easily leak.
The early form of diabetic retinopathy is called nonproliferative. This means new blood vessels are not growing yet. This type can go from mild to severe the more blood vessels become blocked. In advanced diabetic retinopathy which is more severe, the new vessels start to leak into this clear jelly that fills the middle of your eye called the vitreous. Later new blood vessels will have caused scar tissue that may cause your retina to detach.
Retinopathy can cause vitreous hemorrhages, retinal detachment, glaucoma, and blindness. Proliferative diabetic retinopathy is the more advanced stage of diabetic eye disease. It is very serious and can steal both your central and peripheral vision.
Macular edema is when fluid builds up in the macula. The macula is in the center of the retina and responsible for sharp, central vision. Fluid build up in the macula will cause vision to become distorted. The National Eye Institute reports “Diabetic retinopathy is the most common diabetic eye disease and a leading cause of blindness in American Adults.”
I didn’t handle the diagnosis well. Going blind had always been one of my worst fears as I knew it was a possibility with having type one. I want you to know that you can have diabetes and not end up like me but you have to maintain your blood sugars. I was in denial about my diabetes probably for the first 14 years. I don’t think I had proper support in dealing with it. On top of that, I was extremely phobic of hypoglycemia (going low.) So I kept myself higher than I should have. Even now I have to work on the guilt of how I treated my body for so long and I understand now more than ever balance is the key not only to managing my type one diabetes but also to managing most everything in life.
My first laser appointment was awful. All I remember is how painful it was. If you have tattoos it feels like someone tattooing your eyeball. I didn’t think I was strong enough to do it again. My first injection made me so anxious. I had no idea what to expect. My doctor would get me numb by holding a q-tip to my eyeball. Then he puts this metal thing in my eye to keep it open. The nurse preps the injection. I look at the ceiling while his hand comes towards me. It’s blurry and I can’t really make out the needle. Then it’s over. It feels tender kinda like someone flicked your eyeball. After a few days, that sensation goes away.
“Type 2 diabetes is when a person’s body doesn’t use insulin properly”
Halfway through all these lasers, injections, OTC scans, and angiograms, I had a major hemorrhage in my left eye. My doctor described that I had a “floating scar on my eye and the blood had attached to it and it was stuck.”
“I can’t see out of my left eye I told him.” “ Can’t you fix it?”
He said we’d wait a few months to see if the blood would settle.
“And then? And then what?”
“Well, then there is surgery.”
Oh my god, I was freaking out. He said we weren’t there yet. Dr. Gorin has a great way of telling me only what I need to know because he knows I have a lot of anxiety. What he may not know is how fond I am of him. How grateful I am that he is my doctor. I am eternally grateful for all he has done for me in the past year. I couldn’t have asked for a better doctor. I couldn’t have done this without him. When it comes to eyes I recommend you use someone who works with you and tells you what is happening. Dr. Gorin said I could ask any questions I wanted. No questions were bad questions. So I asked a lot of questions!
Surgery To Save Sight
By December 2016 one year into all of this I had already had 10,000 laser burns per eye in order to save my vision. I lost count of the injections. My left eye had no central vision because blood from my hemorrhage was blocking it. Now I was in jeopardy of my retina detaching and Dr. Gorin said we needed to schedule surgery to prevent that and clear out the blood.
The surgery was scheduled for February 1, 2017. I wasn’t pleased with the surgeon because his bedside manner wasn’t what I was used to. At one point when I asked questions, he basically said: “either you trust me to do this surgery or you don’t.” The only reason I used him was because of my retina specialist, Dr. Gorin, said this guy was the best of the best.
The surgery was successful. I recovered in three and a half weeks and was told it takes a lot of people 6-8 weeks to recover from this type of surgery—a vitrectomy. I watched a lot of tv during my recovery process. I could see what I called “black water in the bottom of my eye.” It was as if someone filled me up with water. It moved back and forth when I moved my head. Finally, it went away. My vision was more clear! That blob that blocked my central vision was gone. I had a black eye which seemed to last forever. So the vitrectomy did what it needed to do. It got the blood out of my eye. If I need eye surgery in the future I will use the same surgeon again. I know he has a steady hand and is a gifted surgeon. I didn’t need to like his personality for him to do a phenomenal job.
Later my diagnosis was changed from severe diabetic retinopathy to severe proliferative diabetic retinopathy. I can no longer read with just my left eye. Letters look wavy as if they are moving. There is a lot of blur and when I see a person’s face it looks like pieces are missing. I can make out eyes and a mouth but other features are too blurry to make out. This damage can’t be fixed. I depend on my right eye a lot and it overcompensates for me.
Even though my surgeon removed the blood I now see two small black spots that look like fleas. They ping back and forth in my eye every day sometimes multiple times per day. I have developed cataracts in both eyes and it is possible the one in my left eye will grow quicker than usual and need to be removed this year. There is no treatment that will correct my current vision loss. I continue to have some bleeding, hemorrhages that are so small they disappear or don’t bother me much and edema.
The American Diabetes Association states “the longer you’ve had diabetes the more likely you are to develop retinopathy. Almost everyone with type one diabetes will eventually have nonproliferative retinopathy, and most people with type two will also get it. But the retinopathy that destroys vision-proliferative retinopathy, is far less common.”
At one point the scariest thing for me was wondering if I’d be a blind diabetic. How could I extract insulin from the vial measuring what I needed without making a mistake?
How would I do it?
How could I draw up insulin into a vial without making a mistake?
How would I read labels and continue to be gluten free? (I also have celiac disease.)
How would I know what my blood sugar was?
How would I work or drive?
How would I pop a pimple on my face?
What would I wear?
What would happen to me?
The what ifs happened often in the beginning of my retinopathydiagnosis. I reached out to family, friends, and spiritual mentors. I did meditation and my fear taught me that I was resilient. I was going to take a new approach and be positive about this.
“I want you to know that you can have diabetes and not end up like me but you have to maintain your blood sugars.”
I was going to wake up every day and say you know what? I can see today and I am going to see everything for as long as I can. My doctor does not think I will go “blind.” I used to think going blind meant you see total blackness but I know that isn’t true today. Blind can mean a lot of different things. Sometimes it can mean you see lights and colors only. Suffering vision loss can interfere with daily independence.
My denial has taught me how to love myself and in that I also learned to love life. You only get one body and if you abuse it you will at some point suffer the consequences. If you are a diabetic or a person with vision loss I am here to say you are not alone. We are never alone. Even in darkness, you don’t have to be alone if you chose not to be. I have so much gratitude for my situation I can hardly put it into words.
I still have more laser and injections ahead of me. I am not sure what the future will hold but I am also not going to worry about what ifs anymore. I want to support and educate on these topics people have a difficult time talking about. I know I had to go through all of this for a reason. I truly believe this was one of the biggest lessons I will learn and I think it’s that of gratitude because nothing in this life is guaranteed to us especially our vision.
And if you find yourself struggling, find something to grab onto because you can do it. You can do anything you want to do. You just have to believe and have faith. Have faith in something.
One quote that I saw on Instagram and I am not sure who said it was this-“I survived because the fire inside me burned brighter than the fire around me.” This is something I always remember. And every now and then I find myself grabbing onto these words. I will continue to live every day with love in my heart, and positivity and gratitude on my mind.
To learn more about Nicole’s diabetes battle you can follow her on Instagram at: @nicnac143143
“She’s standing on the corner, cane in hand, waiting to cross, and she looks like she knows where she’s going. She’s approachable and aware. She accepts people the way she has accepted herself, fully. There is a lightness in her footsteps because she doesn’t take herself too seriously. She sees life as an adventure and not an emergency.” ~Joy Thomas, Double Vision Blog
To learn more about Joy’s journey to self-acceptance check out her Woman on the Move article.
Image: Joy Thomas and Roja (her guide dog) are crossing a busy city street.