Sunday, June 7, 2015

My Fear Vs My Optimism

Over the past few years I have had numerous thoughts that provoke fear and sadness about things in my future. From having my whole life seemingly planned (yes I know I'm slightly OCD) and my goals within my reach to all of it taken from underneath me. I sometimes look back at the day of diagnosis and the weeks following it and the feelings and thoughts I had - they were grief-stricken and quite frankly irrational. I'm thankful that at the time I did not make any rash decisions, most likely because I had no idea what to do.

I've gathered some of my most personal and distressing thoughts I've had about my diagnosis with Stargardt's and how it will affect my life. For each of them, I've tried to take a positive spin and find the reality in each to help me cope and see the glass half full. I hope this can help others who are having the same thoughts.

My Fear: How will I ever see my babies faces?
My Optimism: I can still see faces up close, and let's be honest I'll be in my babies' faces constantly! From being around other babies I won't lie and pretend I haven't noticed that I need to get closer to see their cute little eyes and smiles, but from the experience I've been able to find a certain peace in it and know that I will still be able to see them to a degree up close. It won't hinder my bond with my children. They will also learn to adapt to my situation and become strong, positive little beings who are sensitive to people with a disability.

My fear: I won't be able to live independently. I won't be able to get where I need to go in an emergency and especially if I have kids.
My optimism: I live at home with a huge family and enough animals to have our own zoo. I have lived out of home previously but this was the early stages of my disease and I could still drive. I'm hoping to move into my own place in the near future and have realized that there is a lot I need to consider - I need to make sure I live walking distance from shops, doctors etc, close to public transport and my work. I also want to be a short distance from my family so I can travel alone to them. When I tell people that I want to stay living locally I am frequently questioned and told there are so many other beautiful places to live. The reality is - I need support. Is that a bad thing? No. Do people without a vision impairment need support? Yes. So what is so bad? Nothing. I may need to plan my location a little more than the average person but that really doesn't matter. In the end I will still be able to find a home with accommodations to support my independence. 

My fear: I won't be able to find a partner who will accept me for me.
My optimism: If someone can't accept I have a vision impairment and see my worth as a person, then they aren't worth another minute of my time! This is something I have grappled with numerous times and it is hard to actually truly believe it. My generation is focused on possessions, selfies and everything is disposable. There is always something better (apparently). This has really broken me down. I have thought I now have a 'flaw' and 'who would want to be with someone who can't see or drive?' I've realized how untrue this is. My vision doesn't affect my worth as a person, in fact it increases it. It has given me knowledge, strength and resilience. It has given me a whole new outlook on life, taught me empathy, taught me determination. These are all qualities that are positive and can bring wealth to a relationship. So if somebody doesn't appreciate that, to be cliche, it is their loss. I would never be the strong woman I am today without this experience.

M fear: I won't be able to work doing a career I enjoy.
My optimism: Of course I can! Never say never (sorry, I hate to quote Justine Beiber but he is actually right!). I've said this from the start, I may just have to take a different route to get to the end goal. For instance, I wanted to do medicine, I wanted to be able to help people. What did I do instead? I studied psychology. I'm still doing what I love and will be able to sustain this career despite my vision. It could be anything you want to be (with the exceptions of anything driving related but driver-less cars could change this!).Don't listen to people who tell you otherwise. It may be tough at times but what in life isn't. The most important thing is to do something you love and enjoy every day and do something that gives you meaning. Don't settle for anything that doesn't make you happy. 

I hope that others can find the optimism in their fears. I am still battling with these ideas but over time it becomes easier and I become more positive. It is always scary at the start but once you really think about the truth in the thoughts they don't seem as overwhelming. 

Most of all never think you are alone. Sometimes speaking out about your feelings and emotions can be beneficial. It is cathartic. Whether it be family, friends or a counselor. Vision loss is not just a physical condition, it affects every aspect of one's life. Don't be afraid to acknowledge that. 

 Image source: https://www.pinterest.com/pin/362328732497745408/



 

20 comments:

  1. I HAVE HAD STARGARDT'S FOR 50 YEARS YOU DO HAVE TO GET CLOSER TO SEE FACES ---IT IS SAD TO SAY IT IS SOMETHING YOU WILL GET USE TO --(KINDA) I CALL IT ---RECOGNISEING THE BLUR HANG IN THERE YOUNG LADY ---YOU WILL BE OK ----JUST DON'T LET ANYONE TELL YOU THAT BECAUSE OF YOUR LACK OF SIGHT --YOU CAN'T DO THIS OR THAT ---ONLY YOU WILL KNOW THAT ----TAKE CARE ----CHUCK

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    Replies
    1. How was your 50 years of life with that haze in front

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  2. Thank you for your honesty in sharing the fears that we all have when dealing with Stargardts. As someone told me when I was first diagnosed, you can do almost everything that sighted people do, only you may have to do it a little differently.

    Your blog is wonderful and as the facilitator for the New York Regional Stargardts a Group, I always recommend it to every new member we have. I also recommend to anyone who wants to learn more about Stargardts and in fact, I recommended your blog yesterday to a doctor I see about another condition (not a visual condition) who wanted to learn more about Stargardts. Thank you for all you do.

    Best, Michelle

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  3. I am 26 and have stargardt's disease. I am a member of the National Federation of the Blind but in addition to the empowerment and hope I find there, I felt a desire to reach out specifically to others with Sargardt's. I am very glad we can share our experiences. I feel stronger knowing I am not alone. Though an optimistic realist, I have struggled with my self worth and with fears about my future, if I will be a burden to my partner, how I will be independent, find a fulfilling career, etc. I know many competent blind people but finding belief in myself is tough some days. It is like you say though, "it is tough but what in life (that's worthwhile) isn't? Thank you for your blog, Chrissy. It helps me a great, great deal.

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  5. Nice site, It strikes a nice balance of the concept. I had a natural tendency towards 'mindfulness' from a young age. I am glad that I will definitely be coming back here more often. Wish I could add to the conversation. Thanks for sharing.
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    Keep Posting:)

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  16. Irrespective of receiving daily oral or future in jectable depot therapies, these require health care visits for medication and monitoring of safety and response. If patients are treated early enough, before a lot of immune system damage has occurred, life expectancy is close to normal, as long as they remain on successful treatment. However, when patients stop therapy, virus rebounds to high levels in most patients, sometimes associated with severe illness because I have gone through this and even an increased risk of death. The aim of “cure”is ongoing but I still do believe my government made millions of ARV drugs instead of finding a cure. for ongoing therapy and monitoring. ARV alone cannot cure HIV as among the cells that are infected are very long-living CD4 memory cells and possibly other cells that act as long-term reservoirs. HIV can hide in these cells without being detected by the body’s immune system. Therefore even when ART completely blocks subsequent rounds of infection of cells, reservoirs that have been infected before therapy initiation persist and from these reservoirs HIV rebounds if therapy is stopped. “Cure” could either mean an eradication cure, which means to completely rid the body of reservoir virus or a functional HIV cure, where HIV may remain in reservoir cells but rebound to high levels is prevented after therapy interruption.Dr JAMES Herbal Medicine makes me believes there is a hope for people suffering from ACUTE MYELOFIBROSIS, ALZHEIMER's symptoms, BREAST CANCER, DIABETES, HAIR LOSS AND HAIR TREATMENT, KIDNEY DISEASES, LEUKEMIA, MYELOID LEUKEMIA, STEM CELL TREATMENT,Parkinson's disease,Schizophrenia,Cancer,Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
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  17. Great Dr. imoloa herbal medicine is the perfect cure for the HIV virus, I was diagnosed of HIV for 8 years, and every day I always looking for research to find the perfect way to get rid of this terrible disease because I always know that what we need because our health is on earth . So, on my internet search I saw several testimonies about how Dr. imoloa can cure HIV with powerful herbal medicines. I decided to contact this man, I contacted him for herbal medicines that I received via DHL courier service. And he guided me how. I asked him for a solution to take herbal medicine for two weeks. And then he instructed me to go check what I was doing. Look at me (HIV NEGATIVE). Thank God for Dr. Imoloa for using a powerful herbal remedy to cure me. he also has a cure for diseases such as Parkison's disease, vaginal cancer, epilepsy, anxiety disorders, autoimmune diseases, back pain, sprains, bipolar disorder, brain tumors, malignant, bruxism, bulimia, cervical disc disease, cardiovascular disease, cardiovascular disease, sprains, bipolar disorder, brain tumors, malignant, bruxism, bulimia, cervical disc disease, cardiovascular disease, cardiovascular disease, sprains, bipolar disorder, brain tumors, malignant, bruxism, bulimia, cervical disc disease, cardiovascular disease , chronic respiratory diseases, mental and behavioral disorders, Cystic Fibrosis, Hypertension, Diabetes, asthma, autoimmune mediated arthritis. Chronic kidney disease, arthritis, back pain, impotence, feta alcohol spectrum, Dysthymic Disorders, Eczema, skin cancer, tuberculosis, Chronic Fatigue Syndrome, constipation, inflammatory bowel disease, bone cancer, lung cancer, mouth sores, oral cancer, body pain, fever, hepatitis ABC, syphilis, diarrhea, Huntington's disease, back acne, chronic kidney failure, Addison's disease, Chronic Disease, Crohn's Disease, Cystic Fibrosis, Fibromyalgia, Inflammatory Bowel Disease, Fungal Nail Disease, Paralysis, Celia Disease , Lymphoma, Major Depression, Malignant Melanoma, Mania, Melorheostosis, Meniere's Disease, Mucopolysaccharidosis, Multiple Sclerosis, Muscle Dystrophy, Rheumatoid Arthritis, Alzheimer's Disease email- drimolaherbalmademedicine@gmail.com / or {whatssapp .....+2347081986098}

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  18. Herpes cure Testimony I was diagnose with Genital Herpes for the past 2 years and I have been searching for cure. I have several outbreaks on my back and it really affected me morally, I read a testimony on this platform of a lady from Nevada who was cured from Diabetes with doctor Ahmed Usman Herbal medicine including the doctor official email address. I contacted the doctor through his email, after much discussion and few questions he prepared the Herbal medicine and asked for my address which I received the Herbal medicine 3 days later and with his prescription I drank the Herbal medicine for 21 days. After concluding the herbal medicine I went for test and my IgG result was confirmed Negative with no trace of the virus on my blood. Contact doctor Ahmed and be cured his email;drahmedusman5104@gmail.com. or send him a whatsapp text +14436204203
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