Updated: Jul 15
With my eyes filled with tears and thoughts that ranged from anger, and embarrassment, to suicide. I was lost, I had no clue what life held for me or how I was going to make it through what seemed to be the last of my days. Once again Ricky asked me what happened and even though my mouth was ready to talk, no words came out. The only thing I could do was cry, I was angry, frustrated, and just scared. After a while, I caught my words and told Ricky that I was going blind, that my vision loss would not get better, and that one day I would be completely blind. The thought of losing my sight seemed to take every piece of confidence that I had, hell it took confidence I did not know I had on reserve ( in case I needed to let some folks know I still had it.)
My first thought was will I be able to see my kids when they get older? What about my grandkids? I remembered when I went to Chicago to visit my dad, and I walked into his room and announced that I was holding my son. I placed him near my dad and my dad said "Bring him closer to me", so I did and I asked him" CAN YOU SEE HIM, DAD?" Right away he said " Oh yea but I noticed that my dad was feeling his face he was touching his ears, his eyelids, and his nose he ran his hand around the outside of my son's face, and then I heard him softly counting his fingers, it was at that moment all of my joy turned to anger and pain. I realized that my dad's vision loss had left him unable to see his grandson. I cried softly because I knew he would never see my son's face at all. But then my dad said " Boo he is beautiful, and he cried and cried while saying how perfect he was. I was confused and angry because how can you see him with no sight? Little did I know in just a few short years I would learn that to lose your sight is to gain your vision which is much clearer than any sighted person I know.
None of that made it easier to bear this news, none of this seemed to absorb the knot in my throat, it was all too much and I was tired of carrying what seemed to be an endless load. I have weathered the storms, I have fought against those that said I wouldn't add up to anything, I have been deployed to wars that have left me with emotional, physical, and mental damages that haunt me to this day, and NOW, of all times you expect me to take this news and rest with this as if everyday life can just go on as normal? Out of anger I just yelled, " I am never going to get my vision back." What do you mean? Ricky said. The genetic testing said I have something called Choroideremia, (CHM for short). It mimics Retinitis Pigmentosa( RP), but whereas RP, may leave you with some vision, Choroideremia, takes it all. It's ok, we can beat this, there has to be a cure or treatment, we are not going to give up I will help you get through this, Ricky said. "How?" How can you help me fight this when there is no cure? You can't help me with treatment when there is none, and the only trials that are out there, are for men only so how in the hell can you help me with losing my sight when your vision is not being threatened?" I was as mad as a rattlesnake, I was angry that anyone who wore glasses thought they had an idea of what life was like for me, and that in some way they could understand just what I was going through. I was angry at my dad for giving me this life sentence of pain and misery, and then he left me. There was no one that had vision loss at this level in our family that I could talk to, no one who understood and knew exactly what I was feeling. All I had was an Optometrist, that got me so far, who was the first person to really say something in these images does not look just right. An Ophthalmologist was sure I had one of the many rare forms of RP, even though testing showed I had CHM. I had a Retinal specialist that had given me his word he would do everything in his power to help me with this as he learned more about this eye condition.
I was alone in a world where I seemed lost and confused, I had received a ticket to a rollercoaster ride that I would never be able to get off of. I started praying to God before bed to let me wake up with no vision at all, I felt like it would be better off waking up blind all at once than to have my vision slowly go away over time. I felt like that would take the edge off, but once the morning came, day after day, and with each awakening, I could still see, came even more anger, more frustration, and what felt like the greatest lows you could imagine.
It had been maybe 2-3 weeks and I was in this moment of " Oh I am happy and my life is still great, I'm going blind, and I am happy about it. So I started searching and looking for support groups, or even a group of women that were dealing with vision loss. After what seemed like nothing came about, I reached out to the VA and to the Wounded Warriors Program for help. I was sent a list of resources, but none of them provided free services, nor did any of them do work for the VA. What now? I thought, how is it I can not find one service to help me. Then my optometrist emailed me after speaking to several colleagues and friends from medical school and one of them knew of a man named Cory MacDonald( remember this name). He had a support group for people that had Choroideremia. I was excited FINALLY people who get me, now we can talk about how I can pick up my life, they were going to tell me how great life is and how I could handle things as they arise. What he did forget to mention was that this was an ALL male group and that I would be the only female in this group. ( Not that these guys were purposefully leaving women out, it was that it was rare to be a CHM'er that was symptomatic.)
Weeks go by again and I am heading back to my retinal specialist for another follow-up appointment. After getting the same devastating news and how my other eye test (which seemed like they used every SINGLE piece of equipment on me, that they had in their office.) I was once again told that my vision could not be restored. That I should start looking into new adaptive ways of life. Through my tears, I said, " I have joined this support group for people with the same condition as me." He went on with the usual talk and then he said well my concern now is for your children. He continued that as a female carrier I needed to have my kids tested because I had a fifty-fifty chance of passing this to either of them, my heart had sunken so low, that I just knew he saw the pulse in my pinky toe through my shoes. He said that he wanted them to get testing done so that way we can determine if we should be concerned for them. So now just 5 weeks after having to cope and TRY to handle my own eyesight loss, you want me to bring in my kids to see if they could have this same thing? It felt like the wound kept getting cut open again and again, just as mine had started to heal the pain felt as if someone had literally stabbed me repeatedly and I had to fight for my life, now on the hinge of all of this I had to fight for my kids.
Time went on and after a normal vision test my daughter showed no signs of vision loss or symptoms, but my son had not been so lucky. So we decided to have him tested. His appointment came and he seemed to do almost all of the testing that I had taken just a month or so ago. We finished all of the tests and they sent off his DNA sample. I knew that it would just at a month before the results came back and I knew that the days would drag on as if time was on a continual loop at certain intervals of the day, just to torment me further. Every day I would log in and check the status of his results, it moved quickly until the time when it said " Report finished, waiting on analysis to be sent for a report." I knew what that meant I knew that the retinal specialist office had the results and that I could go and get them early. So I called the retinal office and spoke to the nurse that I normally dealt with. After placing me on hold, she came back on the line and said " Mom we have the results you can come and get them, but we close in fifteen minutes. I said we will be there in 10. We lived almost 25 minutes away, somehow on this day and the right time traffic on 75 N was clear and we flew down the highway. We walked in and there were a few people still in the waiting room as this was a Friday and they closed early. I told the receptionist who I was and that I was waiting for the nurse, after a while she came out with this big letter-sized envelope and handed it to us. I looked at Ricky with my eyes starting to fill up, not only was I nervous, but I was scared to find out if I had given what I felt was a curse to my own child. I couldn't open it, but I knew that Jamie had, so I just asked her simply " Does he have it also?)
She looked at me and said...........
PART 4 COMING SOON( for real this time.) ..... The Reckoning