Dear friends,
I'm not exactly sure how to start, I'm not sure what I want to say. For someone who always wants to "do it right," it's awkward sometimes. In some ways it changes nothing - I am who I am, and have always been exactly who I am. In other ways it changes a lot - just knowing there's a reason I'm "different" helps. And in other ways, I have no idea what it means.
I'm not making sense yet, am I? I could go back and tell exactly how I found out, context always being so utterly key to everything - but I think maybe that's just an obsession with me and part of boring. It's just...
I've always had a difficult time with people, with relationships. If you know me, you're probably thinking "yeah, and?" I mean, it's been a huge part of who I am forever. In some ways it's gotten easier over the last few years, I've "got it" a little more often. But when I see what I'm just beginning to be able to do, ways I'm just beginning to function - and I realize that for most people it was second nature by the third grade, and I'm struggling to start to see it at the age of twenty-six. I feel jealous sometimes, and for a while I've felt guilty - wondering what I'd done wrong that I'm only just caring about learning what everyone else has known was crucial since kindergarten. And even though I knew that it wouldn't have made a difference, deep down I wondered sometimes if the people who blamed homeschooling were right - that the reason I've always been so lousy with people is that I just never was forced to develop the skills everyone else either has or gains. Especially recently. When I've finally begun to get them, and wonder what would have happened if I'd been in those environments as a kid.
I'm convinced that this, more than anything else, is what led to the deterioration of my relationship with my former boyfriend. I didn't really read his cues - I wanted to and I sort of did but the ones I acted on weren't the ones I should have been acting on - and he found it more and more irritating. He blamed me, and told me to grow up. And I wanted to so badly, I wanted nothing more than to be who he wanted and needed but I couldn't. And even though I'd warned him this was who I am, I think he didn't really believe me, or at least when it proved true he didn't know how to handle it or really want to face it. And I don't blame him - but it still hurt. It still hurts.
I've wondered for a couple years, a few really, if maybe I'm autistic - but anyone who I asked would say "no, you're not autistic" and I was left feeling more and more... insecure. Guilty. Wondering always what I was doing wrong, what I did wrong to leave me so bad with people. And knowing I knew I was weird and never cared, and wondering who I would be if I had. Maybe I would be able to make friends better, maybe I'd be able to care and connect and love. Maybe people would friends and individuals, instead of interchangeable interaction-types. And maybe I'd feel something when friends get sick or hurt or die.
I just recently discovered the existence of Auperger's Syndrome (AS) - a friend knows a friend who suspects he has it and wondered to me if I might have it too, so I looked it up. Even just the wikipedia article - it answers so much of who I am. Put simply, Asperger's Symdrome is a member of the larger category of "Autistic Spectrum Disorders," and it significantly impairs ability to function in relationships. AS children often understand empathically what it going on, but cannot translate that into meaningful social interaction.
I haven't been diagnosed, and I don't think I'm going to bother. Apparently it's more difficult to diagnose in adults - besides, if I'm not going for medication (which I'm not) then it seems silly to go through the expense. But I have no doubt whatsoever that it's me. And I don't know exactly where to go from here. In some ways, thinking I did something wrong was comforting, because it meant that if I just figured it out, eventually I could be - not normal, I've never wanted to be normal - but I could learn to be what other people need me to be. What God wants me to be to other people. Now - I don't know. I don't think it'll ever go away. I'm a lot more functional, and I think the symptoms have decreased somewhat over the last couple years (for one thing, I don't mind being teased now and can sometimes even tease others successfully) - but then there are things...
Who am I, I wonder sometimes. What does this mean? If I don't "grow out of it" how do I work within it?
And then there are times I really wish it were different. Like now. Like, even though I have good enjoyable friendly relationships with people, I don't feel about them. If someone is not directly in my world, they don't exist and I don't care what happens to them. I want to, I try to - but unless it directly impacts me I can't feel anything. Ben Entwistle was a great guy, I knew him for a couple years and saw him - he was one of the last people I saw before I left for California. Now he's gone home to be with Jesus less than 48 hours ago and I can't care. I care more about the fact that I can't care than I care about the pain of the people who miss him. And so many people I love are hurting over his death - and unless I try I don't even remember or connect that he's gone.
There has been literally one person in my entire world whose absence is as real to me as his presence. Only one person in the entire world I can feel over, even when I'm not trying or I'm trying not to. Everyone else - it's like you're all characters in my story, but in the scenes that don't impact me, in the chapters you're not a part of - you just don't quite exist. And I know that's not right, I know that's not love, I know that's incredibly insensitive. But it's how I experience the world.
And I don't know what to do with it. There are many who argue that Aspergers is a "condition," not a disorder. Just like dyslectics aren't stupid, they just see the world in a different way from those who aren't (my mom tells of trying to see all sides of the words on a page at once, which just doesn't work) and in many ways it's an advantage in certain arts and fields. I'm not dismissing that, I know it's true. And Aspergers has many positive sides too - ability to memorize, ability to read like nobody's business, ability to categorize everything, ability to focus really deeply on one particular topic. Some of the "symptoms" have changed the world for the better. But in other ways - it is a disorder, it is a disability. And I'm not sure yet what exactly it means, to realize I've got to face up to the fact that this way I am isn't going to go away. And in several areas, I am always going to be hard for other people to deal with.
Please pray for me. Don't stop praying for Ben's family and friends - I know they need God's comfort right now in this hard time. But pray for me too. Because I've got a lot to rearrange I think, and I'm not sure how to begin. Treatment is probably too expensive at this time even if I knew where to go. But there are a million suggestions and support groups for people with learning disabilities like dyslexia. Pray I find the support I need for my interpersonal disability. From what little I can gather (I haven't yet thoroughly researched it and I'm not sure how much I should), there is almost nothing out there for adults.
At least thank God for the body of Christ. Thank God for his commands about loving neighbors and considering others more important - and loving the unlovely. I know I tend toward the side of self-focused insensitivity. I ramble - I write books when most people use email for a paragraph or two. I talk at length and don't notice when I'm boring you. I'm sorry always. They say it's one of the signs - but I'm still responsible, just like the dyslectic is still responsible to read because it's necessary in this society. Pray God shows me ways to learn to love, and to act love in my interactions. I want to but I'm not good at it. Either I don't do it at all, or I try too hard, and come off as intense and creepy. Pray God is with me. And thank you for your support.
In Him,
Tabitha
From Roy and Judy:
Dear Family and Friends,
We just had a call from Dan in South Africa. He reported that Ben did really well for the first 3 1/2 hours of the flight. Then, his heart developed problems. The team on the plane did everything possible to revive Ben, but the pulse stopped and nothing could be done. The plane had been on the ground about 20 minutes when Dan called. He was still at the plane and trying to determine what to do. He really has no one in South Africa to turn to for help. He needs immediate prayer for wisdom and he desperately needs God's presence and strength. Judy found this wonderful verse in Psalm 54:4. "Surely God is my help; the Lord is the one that sustains me." We are praying this for Dan and Lynda and for the dear children. We are also claiming it for our entire family.
At times like this it is so wonderful to have Jesus, whose eye is on the sparrow. We know He is grieving with us. He has not failed. Once again life has triumphed over death. We have total confidence that Ben is 100% well and we will see him again. God is good all the time and even Ben's passing comes through His loving hand.
If any reading this message do not know the Lord or has wandered from Him, we plead with you to come to Him. At such times in life, there is nothing like knowing that one's sins are forgiven and that Jesus is able to present us faultless before the Throne of Grace. That is what He has done for Ben. He has done it because He loves Ben, not because Ben deserved it. Oh what comfort we have despite the tears.
Our family wants to thank all of you who have prayed us through this time of pain. Your messages have brought solace and encouragement. We have felt the love of literally thousands and have thanked God over and over again that we are part of the family of God.
To God be the glory!
Much love to all,
Roy and Judy on behalf of our family
Quick summary if you don't want to read the whole thing:
Ben's condition is such that surgery is absolutely necessary to repair a vegitative valve in his heart. The facilities in Kenya are not good enough, not capable of handling it but he's not stable enough to make it to the states. They're airlifting him to South Africa - the distance being about the same as from Chattanooga to Seattle - so they can do his surgery there. He's in the air right now.
pray for healing, and for him to be able to remain stable during the flight, and for his family (his dad's flying with him, the rest are coming commercially).
More later as it comes available.
Jonathan Bonetti (Covenant) wrote
at 10:15am
Hey everyone, this is an email that my family just received on ben's condition. He really really really needs our prayers right now. Thank you all so much for your response to this. His family is forever gratefull. love you guys. -bonetti
"The last update I received this morning was from Dan's parents:
Following is a letter received from Dan this morning. In addition to this information, we have just talked to Dan. He confirms that Ben is breathing much faster and has been diagnosed with either pneumonia or Disseminated intravascular coagulation (DIC). The decision has been made to med-evac Ben as the last hope of saving him. Because no one feels he could make the trip to the States, they are taking him to South Africa. Dan is now trying to make all the arrangements necessary and to find a place to stay in South Africa. Lynda and the children will be flying out commercially, while Dan accompanies Ben. Dan's letter says it all. Thank you for praying. Love, Roy and Judy
Mychal Phillips (New York, NY) wrote
at 10:44am
Hey guys,
Meadowview Church is raising money for Ben...100% of money sent to Meadoview will be WIRED to Ben's family ASAP to help cover costs of medical expenses and the helicopter. PLEASE SEND WHATEVER YOU CAN! Every little bit helps!
Send a check or money with a note inside saying FOR BEN ENTWISTLE.
Meadowview Presbyterian Church
1 Graceway Drive
Lexington, NC 27295
KEEP PRAYING! God's gonna do a miracle!
Erica Dellinger (Appalachian State) wrote
at 11:25am
Hi everyone! I just wanted to let you know that I started a group called Ceaselessly Praying for Ben. Basically it is a page where people can commit to praying for Ben around the clock until we witness a miracle. Please, comment on the discussion board and commit to praying for Ben in 15 min. slots. If we join together, then Ben will be prayed for "Ceaselessly." Please join with me in commiting to praying for Ben unitl he is healed.
Ron Brown (Covenant) wrote
at 12:10pm
The latest information received here at Covenant regarding Ben is that they are prepping him for travel to South Africa for surgery since he is too sick to make the trip to the US. If this information is correct we ought to pray that he will be safe en route, that he would be kept safe through the surgery and that the surgery would be successful.
Lynne Yagel (Virginia Beach / Norfolk, VA) wrote
at 3:39pm
Pray fervently!! It is a LONG way from Kenya to S Africa -- kinda like flying a person from Chattanooga to Seattle because he was too sick to be cared for in the hospitals in Atlanta!!!!!
Rebekah Rineer wrote
at 3:59pm
Praying for Ben as he and his Dad are in the air from NBO to Jo-burg, SA! Praise the Lord for the same hospital and cardiologist from 4 years ago when Ben was in a similar situation with the rheumatic heart disease! Praying for Lynda and the other kids as they wrap some things up in Kenya and then fly down to SA to be with Dan and Ben.
Lord - Your will be done, but we are asking you to do a miracle in Ben's body - even as he is transported to South Africa! Please keep them safe! Please give each member of the family and each doctor peace as they attempt to stabalize Ben! Amen.
once again, in the words of those who know what's going on...
Kr Davis (CGIAR) wrote
at 10:51pm yesterday
We were able to speak to Dan this afternoon. As a result of that conversation, I wish to correct one item included in the update I sent this morning. There is no firm evidence that "bacterial growth has spread to the kidneys." This information was passed to us in a round-about way and did not come directly from Dan and Lynda. It is true that evidence of the "showering" of debris is evident in Ben's body as small purple spots appear where the debris has lodged in capillaries.
Today, Dan confirmed that Ben seems a bit weaker. His blood pressure has been up and he has experienced nausea and vomiting today. He has taken in almost no food and is very restless. A good sign was that he was able to grip Dan's hand quite firmly, but still has no movement in his right arm or leg.
Tomorrow morning they expect to receive preliminary results from the blood culture. This will indicate if the strong antibiotics they are administering need to be adjusted. Dan, who is a doctor, is in consultation with other doctors in Kenya and in the US.
Serious consideration is being given to med-evacing (sp?) Ben to America, but it is fraught with danger as movement could dislodge more debris and it could travel in Ben's system. On the other hand, it appears that surgery is a critical next step and it is very desirable to have it done in the US, rather than in Kenya. This is a huge decision and your prayers for wisdom are so very much appreciated.
I am guessing that my descriptions of medical conditions could be less than 100% accurate, but I have tried to be careful in describing what we understand.
We are totally humbled when we receive so many messages from you dear folks and as we realize how far and wide this information has been disseminated.
Kr Davis (CGIAR) wrote
at 5:38am
Susie Entwistle Hampton asked me to post this messge from Ben's dad:
"Well it's Monday morning here in Kijabe. I spent the night with the kids here, though it wasn't a very restful night. Met with Peter Bird, a surgeon, and with Steve Letchford who is a sharp internist and also with Nate Smith who is an internist and I gather specialist in Infectious Diseases. From Nate's experience, he's saying it's not a matter of whether Ben will go to surgery (it is critical he has surgery on his heart as one of the valves is vegatative), just when. We are in contact with the people at CHOP (Children's Hosp of Philly) through Mike (brother in law), and we are waiting to hear what they say on it. If it's true, then we'll probably be trying to get Ben back there as soon as possible, while he is relatively stable. He could become very unstable very quickly, and I don't know if we are headed that way as I write.
Lynda called me a little less than an hour ago to say that poor Ben is breathing much faster today, in the 40's per minute. I had noticed a change yesterday, when he was breathing in the 30's/minute as opposed to the 20's/minute the day before. But I'm very worried with it now in the 40's, and his oxygen saturations have been lower to mid 90's (%). So he may be becoming unstable. Also, he has a low platelet count since he came in, and to everyone here last night that could be DIC (disseminated intravascular coagulation) which can happen in severe infections and is not good at all. Also, he is very, very agitated--ripping his oxygen off this morning and very restless. I think they will have to use sedation more frequently. Dear Ben man! Well, all that is to say we so value your prayers, family. God knows all things and can turn the tide or let it rumble on, and I am confident no matter what happens that He is both good and loving. We will keep you informed."
Kr Davis (CGIAR) wrote
at 5:42am
Susie says, In addition to the information I just send, my parents have just talked to Dan. He confirms that Ben is breathing much faster and has been diagnosed with either pneumonia or Disseminated intravascular coagulation (DIC). The decision has been made to med-evac Ben as the last hope of saving him.
Because no one feels he could make the trip to the States, they are taking him to South Africa. Dan is now trying to make all the arrangements necessary and to find a place to stay in South Africa. Lynda and the children will be flying out commercially, while Dan accompanies Ben. Thank you for praying. Love, Roy and Judy
Owen Leber (Covenant) wrote5 hours ago
So i've been in and out of the hospital with ben for the last few days since he was admitted. Ben essentially suffered a stroke after the valve he had repaired previously became infected. He has very little movement on the right side of his body and his speech is very slurred. Please keep him close in your prayers. He is still in good spirits though. Everyone who knows ben knows how positive he is and i want you all to know he hasn't lost that. In fact yesterday i told him that i tried to use his motorcycle helmet to go riding but that it didn't fit. he proceeded to tell me "it's because you have a fat head owen." so i just wanted to let you all know i've told him you're praying for him and and he sends his love and appreciation to all of you. if you have any specific messages for ben i'll be going to the hospital again tonight or tomoro so feel free to send them to me so i can print them out for him. Thanks again everyone and remember to never stop praying, even for his family.
Carolyn Coley Koning (Raleigh / Durham, NC) wrote
at 6:49am
I hear that Mozambique is having a day of prayer and fasting for Ben today. People in Kijabe will be meeting at 8:00 p.m. Kenya time (1:00 p.m. Eastern) to pray for Ben.
(for more recent information and you're on facebook, go to http://www.facebook.com/wall.php?id=18505191838)
Dear friends,
I just learned a few minutes ago that Ben Entwistle (a friend, a Covenant student, and a former member of West Brow Fire and Rescue) became ill while visiting friends and family in Nairobi Kenya. Since I don't know anything but what I discovered on facebook, I'm going to enclose all the information available. Please pray - it seems like this is an urgent situation with life or death in the balance in the matter of hours. I don't know what time zone the time stamps are but this seems to be pretty urgent - please pray.
"Ben is over in Nairobi, Kenya (Africa). He was there for Alumni at RVA and to visit with friends and family. He became ill and has been in the hospital for a little while. They believe he has had a stroke and he can't move his right leg right now. Ben and his family really need prayer right now. Be praying for a full recovery and for peace for everyone who is with him. THIS GROUP IS TO SPREAD THE WORD ABOUT PRAYING FOR BEN AND HIS FAMILY. If you have any news, RELATING TO BEN, then please post information. Thank you all! " (yesterday)
Carolyn Coley Koning (Raleigh / Durham, NC) wrote
at 1:32pm
I don't know Ben personally, but I know his folks, Jesse, Lucy, and Seth as well as his grandparents, Roy and Judy; I'm on staff at RVA. Jonathan, thank you for creating this group. Everyone, thank you for your prayers. Here's the latest that we've heard on this side:
From Dr. Dudley Pate, "Apparently Ben has had an infection, and bacteria from this infection gathered around his damaged aortic valve. Several of these bacteria moved off to invade other parts of the body and some found their way into his brain, causing the stroke. Ben's right arm and leg appear paralyzed and his speech is slurred. His aortic valve appears to have suffered some further damage too."
From Dr. Peter Bird, "Ben's condition has not yet stabilized - the next 24-48 hrs will be critical. Dan and Lynda are getting understandably very tired ... Please continue in fervent prayer."
Carolyn Coley Koning (Raleigh / Durham, NC) wrote
at 3:26pm
From Steve (Ben's uncle) via Roy (Ben's grandfather): "The cardiologist in Nairobi has looked at the scan and other test results and the verdict is not good at all. The bacterial growth on the heart is so bad that it has spread to the kidneys and other places and might cause another stroke any time. The boy is in urgent need of heart surgery. Nairobi may not be equipped for what he needs but he is in no condition to be transported anywhere else either. Pray that through Gods interfering, with or without the antibiotics he has been given, Ben would recover at least well enough to get to where he can receive the treatment he needs. But God can even heal that boy completely. Dan, Lynda and the other kids are understandably very upset. Please pray for them all, the doctors, other hospital personnel that they would be diligent in what they need to do, the decisions that need to be made.... And Ben above all."
Carolyn Coley Koning (Raleigh / Durham, NC) wrote
at 3:27pm
From Roy (Ben's grandfather): "Despite the condition of Ben and the stress on the family, we continue to trust God. We know that God's eye is still on the sparrow and Ben is immensely more valuable to Him. Jesus is totally trustworthy and whatever the outcome, He will be there with grace and comfort. We continue to believe that in HIs perfect will Ben can be healed, but we also want what will bring Him glory and honor. We find that at such a time as this, there is tremendous comfort in knowing Ben is in the hands of His loving and all-powerful God."
Sheryce Butkowski (Covenant) wrote
at 3:58pm
hey guys...a new update for ben...
things seem to get harder and harder. please please please keep the prayers coming. bacterial growth is so bad it has spread to kidneys and other places. He needs urgent heart surgury. However Nairobi is not equiped and can't be transported. Please pray for a correct antibiotic to be found so he can be transported. Pray that God will feel his friends around him, it's hard being so far away.
If you're on facebook: check http://www.facebook.com/group.php?gid=18505191838&ref=nf for updates.
Dear friends,
It's kind of nice having a computer that not only has internet access, but has speakers so I can get the full benefit of the online resources. I'm writing this while listening to an a capella group singing "Stand By Me," and I spent this afternoon catching up on episodes of "The Pretender," which I used to watch when I was younger but haven't seen in years. It was always a really fun show, with interesting plot twists and a chance to see inside a lot of different worlds, a new one every week. Of course, watching it now having inhabited some of those worlds (one episode he's a fireman, and another a paramedic), I'm realizing for the first time how absolutely impossible those plots actually were (once he went a month without filling out a W4 form, and then when his file was "stolen" a suspicious coworker with a photographic memory decided to run a background check on him. Of course it's completely impossible to be hired anywhere in emergency services without a pretty intensive screening, so if he managed to get hired he shouldn't be worried about a nosy coworker.
Still, it's been fun and instructive. I haven't started any film classes, so I'm doing self-study while waiting for a job. I discovered a library two blocks away so now Borders and Barnes & Noble have lost a frequent flier who only buys snacks. I think I feel a little less awkward using a library as a library, as opposed to a bookstore. When I get mail then I can take proof of local residence and get a library card - then watch out. I'll clean out their shelves and be back a couple days later to do it again. It's been too long since I've had the chance to just absorb story - and since that's precisely what I'm here to learn, it's wonderful to be finally taking the opportunity.
Not that I'm on my own for much longer. Tomorrow I've got a job interview with a local ambulance service - the same one I wrote about in my last update. They won't hire me until I know about the internship, so it wouldn't be until August the 25th - but it is a job pretty much guaranteed if nothing else has materialized. Central Casting has started to have more jobs coming up - nothing that I'm a good fit for yet, but it seems that though July and August are slow months, it's not completely dead. And on Saturday, I start my Directing Actors for Film class at UCLA.
So though I'm still not earning any income at the moment, things are beginning to pick up. I've found a nice church about a mile from where I'm staying that I think I'll be attending as long as I'm living in this part of town, and I've got at least one decent writing project I'm working on during my spare time.
I'm definitely where I need to be right now. And I'm beginning to see myself as being happy here. There are still many things I love about home that I don't have here - but there are even more things I could have had at home, but have even better opportunity for here. So God is faithful. And I am exactly where He wants me to be.
Thanks again for all your prayers. May God bless each and every one of you as He is blessing me.
in Him,
Tabitha