{"id":3302,"date":"2023-07-06T00:09:00","date_gmt":"2023-07-06T00:09:00","guid":{"rendered":"https:\/\/survivingmypastbecauseofmyfuture.com\/?p=3302"},"modified":"2024-07-15T14:10:42","modified_gmt":"2024-07-15T14:10:42","slug":"living-above-and-beyond-my-limitations","status":"publish","type":"post","link":"https:\/\/survivingmypastbecauseofmyfuture.com\/?p=3302","title":{"rendered":"Living Above and Beyond My Limitations"},"content":{"rendered":"


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I have lived with a visual impairment for forty-one years now.  Not a minute goes by that I forget it<\/span><\/p>\n

is a shadow that never leaves my side.  But because my visual limitations are often invisible to<\/span><\/p>\n

those around me, it is not uncommon for people I meet to have no idea-unless I tell them.  And <\/span><\/p>\n

explaining the disease takes time, so avoiding a detailed explanation is typically most <\/span><\/p>\n

comfortable and convenient.<\/span><\/p>\n


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The past three years have taught me about more than just grief.   My willingness to go to  great lengths to appear competent and to look \u201clike everyone else\u201d dominated me.  I never wanted to be weak or dependent on others.  But when my life instantaneously spun out of control after Dalton went to Heaven, all the work I had achieved over the years unraveled in the blink of an eye.  Suddenly, I didn\u2019t have it all together.  In fact, I was coming apart at the seams.  Child loss made me <\/span>profoundly different <\/span> from others because I only knew one person who had lost a child to suicide.  Grief made me weak and dependent on others as I struggled to make it through each day.<\/span><\/p>\n


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My visual impairment made me feel broken but I could <\/span>pretend <\/span>I wasn\u2019t.  Grief shattered me but<\/span><\/p>\n

this time, there was <\/span>no way<\/span> to hide my imperfections from the world.<\/span><\/p>\n


<\/b><\/p>\n

The realization that it is unhealthy to hide or mask my imperfections prompted me to write about <\/span><\/p>\n

my eye condition.  Hopefully, this will demystify what some of you have always wondered but<\/span><\/p>\n

nev<\/span>er wanted to ask or inform you if you had no idea.<\/span><\/p>\n

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My diagnosis of Stargardt Disease arrived in my life at the young age of eight.  So I never really<\/span><\/p>\n

knew any different.  At the time, research and knowledge were limited except in knowing the <\/span><\/p>\n

disease is genetically inherited, and nothing could be done to reverse its effects.  Without a cure,<\/span><\/p>\n

my vision would slowly continue to decline. Fortunately, the disease stops short of total blindness.<\/span><\/p>\n

While I am considered legally blind,  I like to say I have enough vision just to be dangerous.  <\/span><\/p>\n


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Stargardt Disease is a juvenile form of macular degeneration that affects the macula, the central<\/span><\/p>\n

part of the retina.  This part of the eye is what enables humans to clearly see small images and <\/span><\/p>\n

details.  Patients typically experience minimal or no loss to their peripheral vision.  <\/span><\/p>\n


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The National Eye Institute describes its cause this way.<\/span><\/p>\n

 \u201c<\/span>Stargardt disease is usually caused by changes in a gene called ABCA4. This gene affects how your body uses vitamin A. The body uses vitamin A to make cells in the retina (the light-sensitive layer of tissue at the back of the eye). Then the ABCA4 gene makes a protein to clean up the fatty material that\u2019s left over. In Stargardt disease, this gene doesn\u2019t work \u2014 so the fatty material builds up in yellowish clumps on the macula. Over time, this fatty material kills the light-sensitive cells and destroys your central vision.\u201d<\/span><\/p>\n


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My visual acuity of 20\/400 means that if you are looking at an object from 20 feet away, it is like I<\/span><\/p>\n

am looking at the same object from 400 feet away.  Three hundred eighty feet makes a huge <\/span><\/p>\n

difference!<\/span><\/p>\n


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With that being said, there is not a centimeter of my life that isn\u2019t touched by my visio<\/span>n.  I absolutely did not include this statement for pity.  Rather, so you could understand that my visual limitations affect literally everything I do.  Making necessary adjustments isn\u2019t a bad thing, but they are absolutely critical.<\/span><\/p>\n