OUT OF THE COCOON

 

OUT OF THE COCOON

My last visit to Jules Stein Eye Institute (JSEI) in March presented me with questions. Unable to see the Retina Specialist, I had a brief conversation with a Hospital Administrator, who being courteous and thorough I was left without any indication or direction as to what I should do.  By mid June I was feeling discouraged at the lack of any communication from my JSEI doctor.  This dampen my spirit and I became sad and angry. There was no information coming forth from JSEI, this being one of the leading Eye Institutes in the Country.  I have been thinking of all the things I could do again with restored eyesight via stem cell treatment.  Would this slip away before I could ever realise it?

  It has been 20 years since I have lost my eyesight which is now at a visual measurement of 20/300.  This  has made it impossible to do anything skilfully that requires adequate vision.  It has made every day of my life exceptionally challenging some days more difficult than others.  Simple and mundane tasks, such as seeing clearly the settings on the washing machine, dryer, threading a needle to mend a shirt, or sew on buttons.  For most people these daily task are not even given a second thought, yet in my case they are major challenges, such as: following a multi step recipe, recognising the shampoo bottle over the moisturiser once in the shower, or locating my magnifier, house key and sunglasses.  Because I can’t see, even up close as everything falls into a blind spot, so I must sweep the surface to locate, making ever task tremendously time consuming and discouraging. The only technology I can use is an Apple iPad which is limited and causes thwarting my every task I attempt to do. Keeping a vital sense of accomplishment as I continually need to ask for help is an on-going stress factor.

I have dreams of taking care of Jim as he gets older and drive him around to doctor visits also assist him in care for him as he has done for me.  I thought it prudent to take computer classes,  to continue my Spanish guitar lessons, also would like to develop my art with some formal instruction. At present time I am happy continuing  my college courses online. I was facing the death of dreams and would need to gather the courage to admit it. In a word it was terrifying.  The  following two months passed in silence from JSEI.

The beginning of August found me very motivated to contact my doctor and ask why I must be“wrapped in a cocoon” of silence and wait?  We send a registered letter asking the Doctor when might the stem cell procedure begin?  Two weeks past and we got the response. 

Remarkably on August 3 a call came in from Jules  Stein Eye Institute there was a voicemail for me saying the doctor had not forgotten me and that I was to make an appointment or they would call me by December.  There was also an explanation for the delay. Hallelujah!  A explanation and acknowledgement after a year and a half of waiting now this is something I can work with!  I am leaving my cocoon jubilantly.     Roshonda     (Jim assisted me with this post)

Family Visits

My mother once told me, we are as happy as we make up our minds to be. And, I had made up my mind to take all the time I could with my daughter Leah to be together, talking, loving and laughing, things we chicks do well. We shopped against the clock, made it fun and went to breakfast as a treat. We went to the beach and enjoyed a beautiful day at 73°. I still can’t forget that exquisite day.

We have a large, beautiful family and naturally as a family woman I desire us all to be together occasionally. The Holy Spirit confirmed to me during the past two weeks, our family would all enjoy being together again... I do have perfect peace in that and I thank God for his love.

Wednesday, July 15 brought the end of a visit to our home with our daughter and grandson. Her time here was focused and planned but we manage to do fun things in between. I so much enjoyed the time Noah had with me. We made deep, indelible memories together including short scripts from movies and impressions that telltale our trust and love for each other. He was six years old when he had a proper diagnosis of his condition (Fragile X Syndrome) and when I was told I wept like a baby. In disbelief I boldly said, "No this cannot be, I understand him and I believe he understands me."

Noah is 21 years old now and during our visit we had many long involved conversations. I witnessed his deep thinking and then pausing, he would answer me. We have developed transfixed love and trust in each other and the love that resides there has its own expression. We are known as “two complicated ants” and that is because we follow one behind the other just like ants do and we communicate with our hands to each other just like the ants communicate with their antennae. We are also known as “twins” bearing a very close resemblance to each other and we twin in many behaviors simultaneously. I am and always will be blessed to be his Grandmother.

The Appointment

I had an appointment at Jules Stein Eye Institute with the ophthalmologist to measure my visual acuity. Traffic was light so we arrived early and it was nice to have a little extra time to gather my thoughts. And, gather my thoughts I did as to what should come next on my journey in restorative medicine. While we waited for the ophthalmologist appointment, Jim went over to the doctors office to see if he could talk to anybody about possibly getting an appointment the same day for excising a small piece of my forearm to begin the stem cell process. In a brief time, he was back with a woman who is quite knowledgeable about the laboratory and the stem cell process; she began to explain to both Jim and I what lay ahead. She began her explanation with the laboratory and it’s available space serving all of the UCLA medical facilities. This really turned out to be the crux of this conversation. While I had thought it was about me being proactive, it was about the availability of space. She explained, they could excise a small piece of my forearm, but there wouldn’t be space to supervise it in the lab. However, my name is on the list and they know who I am and they will call me. She confirmed that I am still on the grant so, it is just a matter of time. 

I felt that I stood there, in front of her, definitely in a stupor. All my plans played out in front of me. My thoughts were akin to, what is next? What should I do now? How should I take this? I looked at Jim and asked him, what does this mean? He assured me and said let’s pray… We prayed for divine intervention. I almost laughed when we said amen because instantaneously I sensed the peace that passes understanding. I really do not feel discouraged and I certainly don’t feel disappointed… because I am very grateful for this gift that landed in my lap. I am only happy and since this is real life I must meet this in real time. God’s peace is relevant and reassuring and restful. Any and all anxieties I put to rest. God’s peace keeps me calm in a blind storm.

A Brave New Decade

Long have I waited for a brave new decade which brings with it regenerative medicine...

This is epic!! We are here!!

As a culture we are awakening every morning in the Creche of scientific success called restorative medicine. This is now the reality of stem cells taken from our own bodies. These are referred to as adult stem cells.

For the last 20 years my eyesight has declined rapidly from 20/20 overnight to 20/250 . This is a measurement to express my visual clarity.

As I mentioned in my first post (See my other blog: JoiurneyInBlindFaith.blogspot,com), "God kissed me with joy", I wish to make it clear that it is a very dreadful event and illness to lose one’s eyesight but, I only thank God that it did not destroy me. Preferably, when I got knocked down, I just stood up. When I was overcome with sadness, I just tried to look at it objectively as to what I could do now….

This post is not about me entering into a brave new world through stem cells but rather an acknowledgment for what now lies ahead for all of us. I believe, as in creation, when we see the ability of the lizards to regrow their tails, maybe this something of a blueprint from God through our DNA? I have lived a lifetime in the last 20 years with all that I have learned about human nature and the human spirit to overcome. Not really only for myself but for so many of those beautiful people I have met in the disabled community. I only hope I have become humbled and able to transliterate their difficulties in my response. There will be so many opportunity open and available to me now, I will embrace them with great thanksgiving and gratitude, mindful of the riches I have been fortunate to acquire along this way.

Please enjoy this scientific YouTube video I have included here. It will be quite helpful in describing the miraculous work of stem cells and you will discover God‘s handiwork they’re in. Indeed we are fearfully and wonderfully made!

March 9, 2020 I have an appointment in Los Angeles with the doctor who will do my stem cell therapy.

Vision for the Future: Stem Cell Therapy for Eye Disease

https://youtu.be/OaTWoeALu2w