I like to share my life story not to show people how successful I am even through I may be disable. But rather to let everyone know they can find the same success them I have, just need to discover what makes them thrive for life.
I also like to travel and meet now people and places. Some times I meet people how are better of then me as for the equipment and/or the services they receive. Then on the other had I see something that makes me happy how I am and what I have in my life.
Trip to Chile 06
The producers I were asked to go for our first international film fest to Chile for Teleton. Teleton is list like the Easter Seals, or the Shriner’s of America since they have own schools and hospitals.
First I was afraid that would not be able to join Bill, one of the producers for this trip. Since I already had another engagement booked the same time. In additional, Susan and Bill wanted Dena to go with us, we were approaching our second anniversary of dating. Susan the other producer was working on another project and could not join us.
It was decided that Bill would get to Chile first, since I had a commitment. After a few days of going back and forth Dena agree to join me on this once in a lifetime adventure.
Did you know that 1/3 of Chile’s population is disabled On top of that none of sidewalks do not have curve cuts, so the people in manual chairs just pull wheelies up and down the curve. Most public place is accessible at. It would be hard to tell from this video, put the video is from a tour of one school.
After three days of interviews, presenting, and tours Bill came down to the hotel lobby with his bags packed to go on his marry way around the country. Dena was confused as hell. She knows we had four more days before we went home I said just go pack our bags. The van was there to take us to one more dinner with our Teleton friends.& After many hours of good fun, food and vino Dena and I start out on an adventure for two.
We stop a food market and I said get food for 3 days. Unknowing to Dena I set up a cabin for 3 days to celebrate our two years of dating. So after two hours of riding in the dark, we finally reach it. The cabin just had the basic kitchen and bathroom. So we spent with nothing but talking, cooking, and vino. Welllll it was our anniversary!!!
The day before we left, we went up to the main office to pay the bill. To our surprise it was already taken care of. A man that worked their offer to drive us back to our cabin. To remind you, this place was at least 2 hours from the city. It turns out that he saw the HBO film and when he was young he had a brain injury and was in a Teleton hospital. When he picked me up to put me in the van, he said he just touched and angle.
The next the van came to take us to the airport, as the van pulled away we both looked back and cry.
FEMA-South West Interagency Special Emphasis Committee 06
Why do people always think Dena is my mother, or sister? When people do find out that we are a couple. They do not see as equal partner, but Dena as the “care taker” and her life is so hard.
When we were leaving this engagement a gentlemen that was in the audience caught us outside. He said to Dena, I bet your life is so easy. “I see how you two each other”.
This was the gig that almost stopped us from going to Chile. Luckily it was in D.C., so it was an easy drop off at the airport to catch our flight.
Marywood University 06
This was Dena’s and my first speaking engagement together, Dena was so nervous. She spent most of the time running back and forth to the bathroom. It might have the few beers we had before hand along with the nerves.
One of the things that could have kept us from dating not my disability, but my fame. Dena hates the spot light. I said she was with the wrong man, because I need a woman to stand at my side. So together we can work to make a change in the world!
Oakland Community College 06
I never mean to be boastful, but I beat out Bill Cosby for this gig. Yes I do public speaking to make an extra income. But at the same time I keep in mind the real purpose of doing this. Being involve in the disability community and educational system for most of my life. I know they have limited funds and when cuts are made, these budgets are first to get the ax.
It is an internal battle over the monetary gain VS. what is gain from actual gig? I know the gig wins out, I have spoken to rooms of 20 to 2000 people and I always it is a valued experience for all.
Pinkneyville Middle School 06
This was the second Dr. Stanford invited me back to one of the schools where he teaches. He is a college professor and a middle school teacher in Atlanta. I must have made a good impression the first time, we also became good friends.
I really enjoyed the format of the presentation the school set up for me. A week, or two before arrived the show the film King Gimp in each of the English classes. This way everyone had seen it ahead of me being there. When I got to the school that morning it was a big surprise to all of the kids. They broke the classes up so Dena and I could talk with smaller groups. I would say 3, or 4 classes at a time for 45 mins.
Because the film was shown in advance, we had more time to converts with the classes and had questions prepared. I was asked "what is my greatest accomplishment"? I look to my right and said she is sitting next to me. Dena replied did you here the questions. Everything else I have done was a solo success with the help of me circle. While a relationship can only be successful only by two people.
This time when Dr. Stanford asked to the school, the next night they putting on a play and asked to attend. We gladly did, I do not look at gigs just to do my thing and split. I hang out and talk to people, since they might be too shy to ask a question while I am on stage. When we go for out of town it be fill with activities with the group that hired me.
I think it is the experience of meeting new people and sharing ideas that benefits all of us.
University of Baltimore celebrates diversity with King Gimp. 09
Sorry to be a downer on this one, but I feel the Sekai’s story has to be told. I do not like to be thought as a role module. It did relief Sekai’s for an hour or two while we were together. It is best that I let his mother tell the story, sadly it end by Sekai taking his own life, because his young soul could not deal with his body as a prison.
What is the difference between valuable and valued?, I asked. I was not being sarcastic, or witty, as is a common form of communication in our family. My mother had caught an edit in the program for this very service, and I was suddenly intrigued by the meanings of these two words. We sat and pondered for a moment, and then she answered: “well, something can be valuable, but not valued.” Indeed. Point well taken. Synonyms for valuable include precious, expensive, costly, dear. Synonyms for valued include appreciated, esteemed, cherished, loved. Indeed. The use of the word was a typo of sorts on my part, but it gave me a point from which to begin this statement.
Sekai said more than once that he did not feel valued. Disturbed by his deep sadness, angst, anger, seeming refusal to even attempt to enjoy any goodness in life, I began yet another round of begging, pleading, questioning that often led me to answers I needed, but truly did not want. Don’t you remember what Sekai means? Yes, Mom, I know, full of laughter. What happened? Where is your laughter? When I was gone, my laughter wasn’t valued, so it went away. Well, Ms. So-and-so at school told me that you kept her laughing on the day she wasn’t feeling well, so I know that somebody appreciated your laughter, your jokes, your silliness. At school they appreciated it. At home, at my foster home, they didn’t laugh at my jokes. I would say funny things, and they didn’t laugh. My laughter wasn’t valued, so it went away.
He also said more than once that he did not feel important. When his class did a dance routine for the picnic following the awards ceremony, before the dance, he worried that people would laugh at him; after the dance, he was sullen because he did not get to do his solo dance. He said it made him feel that they thought he was not important. And this after he had fretted and practiced the jiggy to the left, jiggy to the right, up, down, now zigzag, stretching his arms as far as they would go, and working hard to stay with the rhythm regardless of where the spasticity might want to take his limbs.
The spasticity. The cerebral palsy. Do the doctors know about this? He asked when I gave him the name of the condition that he recognized in students at my friend’s class at UCP, but did not recognize in himself, having never been given an explanation of why his body was different. Do the doctors know about this? Can they cure it? Are they working on it? It isn’t fair. It isn’t right. Why aren’t they trying to fix it!? He had thought it was only the dislocated hip that was keeping him from walking, and apparently was not aware that there was something that caused the dislocation, though he knew that it could have been repaired. Actually, the dislocation could have been prevented had the hip been repaired before it pulled completely out of the socket. And the pulling out of the socket could have been prevented had he received the baclofen pump that had been recommended years before. Or the neurosurgery that he would have had at age four had he simply been allowed to stay home. He also attributed some of the not being able to walk, to even step anymore, or stand on both legs, or even sit straight, to the broken leg…for which we still do not have any reasonable explanation.
But there was a critical lack of reasonable explanations. And every time we went to another doctor’s appointment, we were both made painfully aware of the reality of just how badly wrong things had gone since he was snatched from his loving and caring family by the very helping professionals who were employed to make sure things did not continue to go wrong in his life. The appointments started with two orthopedists, both of whom commented that there was nothing that could be done about the hip now. The second one added that it should have been done five years ago. After that appointment, Sekai refused to urinate for about a day and a half, taking his pain and sadness and anger out on the body that he felt was the source of so much pain and sadness. The first orthopedist pulled back his gown, and let out a profane explanation, loudly questioning just what had been done to my son’s legs. In 35 years of working with kids with cerebral palsy, he said, he had never seen a leg length discrepancy so severe: a whopping 6 inches. He questioned why the scars were so long, and crooked, and why he still had osteotomy plates in ten years later, and how exactly a child who did not ambulate independently had snapped his femur clear through. And why it had not been properly set to allow it to heal straight, rather than at a downward angle. I believe he vomited that night. Or maybe again refused to urinate. Or refused to eat. Or maybe he lashed out, fighting me as I tried to put him to bed.
Fighting you? Yes, fighting me. He was so angry. But really he was hurt. Why didn’t you come back for me? I waited for you. I WAITED for you. And I was coming for you son, really, I was. I had to fight courts in Baltimore. I had to fight courts in DC. I had to fight the agency. You still fight the agency. Yes, and I will continue. For me? Of course for you. You would fight for me? Of course for you! What about Raymond? What about Raymond? He is still there. And there are other foster kids, kids like me. What about them? I want to help them. I want to tell my story, so we can help the others, too. I want to go on tv again and this time tell my story. Ok, but let’s get you better first.
The appointments went on and on, and so did the bad news. “Are you aware that he only has one testicle?” I only have one testicle!? Why do I only have one testicle!? More bad news. “The build up on his teeth has led to severe gum disease. This has happened over a long, long period of time. The gum disease is really bad. There may be concern about healing from any surgery, concern about the condition of his heart.” This, the day before the day. More bad news. Weeks previously, we saw his gastroenterologist to find out what was to be done with his new feeding tube—new because he had pulled out the gtube button to prevent being given feeds for extra nutrition. He had a fever, and we were both pretty sure he had an aspiration pneumonia. After all, just the night before, he had leaned back in bed on day four or five of his depressive episode-turned-vomiting-fit and vomited up into the air and then breathed it back in. I asked her what could be done to make him stop vomiting. “Nothing. Once they learn that the vomiting works, there is nothing that you can do. They either keep giving themselves pneumonias and die from a pneumonia, or they end up having to be trached, and then you’re looking at six months tops. Or they just choke.” Ok, let’s go back. How do you make him stop vomiting? “Is he sick, or is he doing it on purpose?” He’s seriously depressed. He’s doing it on purpose. He engages in self-injurious behaviors. He says the story ends with the boy going to heaven. “Then there’s nothing you can do, and you need to be prepared for that.”
Nothing I can do? But I have fought for him almost his entire life. His name is Sekai Ayinde. He can kick this depression. His laughter is in there somewhere. And we have been praying for him! Nothing I can do? What about the psychiatric programs, the therapy programs? So we called. And we waited in emergency rooms. And we called from ER hallways. Yes, he talks. A lot. No, he uses a wheelchair. So, you’ll take him, but you’re not sure if he’ll get anything out of it? And he might be upset?...oh, the others don’t talk? OK, um, how do you do groups then? Oh. They’re not processing groups. The program down the hall? Oh, yes, they said they won’t take him because he might be preyed upon. Ok. Thank you anyway. So, they said no. At least this program didn’t blame it on the wheelchair, or say they would not do activities of daily living. Let me ask you a question, psychiatric social worker in unnamed urban hospital. Where do the kids who have multiple disabilities, but average or greater intelligence go for treatment when they are depressed? Depressed to this degree, when they are really planning to not keep breathing? I mean, where do they go for treatment if they can’t take their own selves to the bathroom, can’t get their own food, but can talk and think and rationalize and have these deep, deep, deep trauma wounds and are so tired they just want to be done? You don’t know? Are they all dead? What I am supposed to do? Take him home and just pray he doesn’t die tonight?
Able to think and talk and rationalize. He was. But few believed it. And he knew this, and it hurt him terribly. Why do they think I am dumb? Why do they think I am not smart? I hate it when they talk to me like that. I don’t want people to keep thinking I am a loser. I want to be a contributing member of society. I want to be a valuable member of this household, of this family. If I had stayed home, if I had stayed with you, I’d be better. I would be able to read, right Mom? I would be able to walk, right Mom? I wouldn’t have missed so much. I should have been with you. I am sorry that I gave up. I didn’t think you were coming, so I tried to go on with it. I am sorry. I should have told them! Told who? The court. I should have gone to the court and told them to give me back to you, that you are my mother and you love me. That you never hurt me. That you want what is best for me. I should have told them. You were a baby. You were just four years old. But I should have told them. I feel bad about that sometimes…
And he felt bad about so much. He asked if the people at CFSA hated him. He asked if God hated him. He was constantly afraid that someone would be angry at him, or disappointed in him. He feared professional people coming because he feared they would take him away. He feared familiar people coming because he feared they would go away. He attempted to reenact trauma over and over and over again. He didn’t want to take a shower because she didn’t let him take a shower because she said she didn’t want his equipment getting in the way of her kids. She washed us in a bucket, Mom. She would put me in my highchair, and Raymond in his chair, and wash us in a bucket…no, not a wash bin like the one we have. A blue bucket…yes, a bucket, with a handle. He fought me he said because he had fought her. He refused to eat because he had not been given food, only gtube feeds: taken straight to his room where he would sit from the time he got home from school until time for bed. Yet he weighed 76 pounds. Nearly 5’4”, and 76 pounds. Within two months of being home, he was up to 86 pounds. Four months later, the scale hit 96, then settled at 94. And he stopped eating. And started vomiting again. Stop helping me. I am tired. I don’t want to get better. But son, you’re doing such a good job! My past. My past is coming! No son, it won’t go down like that again. The judge said. And too many people know. They’re watching now. It won’t go down like that again. No, the memories. The memories keep coming. And I get so _________...and I don’t know what to do. Try to hang on. Work your therapy. Let’s keep working on the medicines. You want to tell your story, remember. You want to help kids in foster care. You want to help kids with disabilities. I’m too afraid to go on tv. People will look at me. You go. You do it. You tell them. I’m tired. I want to go to heaven. I know you’re not ready for that to happen. Not the pleading look. Dude. Stop. I am not giving you permission to do this. I am not giving you permission to do this! Let’s not talk about it. Let’s…honey, please, ok? Just try? Tell them what happened to me. Tell them about the other kids. We can tell them together. Let’s just get you well, get you healthy again. Let’s get you adopted. Then we can tell everyone, together. I am tired….Tell them not to treat foster kids like this. Tell them not to take kids away from their mother’s who love them. Tell them not to treat kids bad just because they have a disability. It hurts their feelings.
And his feelings were so, so hurt. He wanted to be home. He wanted to be happy. He wanted to feel the love, to accept the love, to return the love. But at every turn, he was reminded of what he had missed. Did you have Thanksgiving last year? I should have been with you. I should have had Thanksgiving. I should have had Thanksgiving with you. And Nnenne. And Uncle Iff. And Aunt Joan and Uncle Steve and Nicci and Erik. Did you miss me last year?...This is my second Christmas. I am 15 years old, and this is my second Christmas…I should have grown up with my godsister…I should never have been a teenager with them. I should never have been a teenager in diapers in a highchair in a room not able to use my power chair at home. They took my liberty, the freedom to make my own decisions and have the kind of life that I want. They took that from me, when they took me from you.
And he just did not know what to do with that. And it tore at him so, and he tore at himself, as apparently he had for eleven years, since the day I was made to walk out of that hospital, and he was made to learn that mommies really aren’t all powerful and sometimes evil comes knocking even on a four year old’s door, and bad people sometimes do such harm, and sometimes even good people let bad people get away with doing something horrible…and little boys turned teenage boys who hurt that deeply for that long get very, very tired.
Sekai, honey, I do understand. You asked if I would be ok, and eventually, I will. But I miss you so so so much, and now I hurt. You asked if I would be angry at you. If I would be disappointed. And I have to be honest. After I was done being scared when I heard that sound, and then didn’t feel your heartbeat. After I was done pleading with God in between rescue breaths. After I was done standing in the rain watching through the ambulance windshield as they worked on you. After I was done trying not to think, hoping against all odds that the flatline-turned-erratic peaks had become a normal up-down behind that curtain. After I was done holding your body, and kissing your beautiful face, and holding your suddenly straight hands. For a moment or three, I was disappointed, and very angry. How could you not give me more time? Six months to undo eleven years? But then the games started up again. There was a call that your body was going to be moved to a warehouse. Then the agency was not exactly sure where your body was located. Then they compared their hurt to my hurt, but yet refused to do what needed to be done to lay you to a proper rest. And then I remembered your question, and I understood your point, that maybe no, they would never leave you alone. So, rest well in the arms of your savior. I will tell them. We will tell them. Remember:
*Forever, I love you always Don't worry He'll be there always And just because you've had yourself a couple bad days Don’t mean it’s gonna be this way always
[*”Always”, by Jason Champion. First line changed to represent one of the ways that we sang it to each other.]
Blue Ridge Independent Living Center, Inc. 20th Anniversary Celebration. 09
Dena and I always enjoy meeting and visiting people. At this luncheon we decided to sit at a back table with a couple of friends we just met. One of the goes by the name Garry, his story has become more commend now that society sees no one belongs in institutions. With the help of BRILC, Garry now lives a full filling life in his own apartment and a job as a security guard. As I say everyone is a contributor to society.