The email from my mom and stepdad I received
It has been both wonderful and difficult to read your stories. I like that you gave your personal memories. Doug (stepdad) and I have talked about your stories and would like to give you some details you probably don’t remember or never knew. This is not to add to your stories, but to fill in some holes for you, personally.
Our phone rang at 10:00 PM on Tuesday, Dec. 10, 2003. The emergency room doctor told me that you had a brain hemorrhage and were in critical condition. I asked if you would be okay. He said he did not know; you were being helicoptered to Yale hospital to an AVM specialist. We were on a plane to NY by midnight that night and arrived at 8:00 AM.
By the time we arrived at the Yale hospital you were out of surgery and in intensive care. The surgeon told us that he had to remove part of your cerebellum and skull. He told us that the cerebellum is “unforgiving.” Anything you lose there you cannot get back. You were on life support and had extremely high blood pressure 300/??. You seemed to be somewhat conscious and kept writing Mattison (my daughter) on the sheet. We kept telling you she was okay. It gave us some hope that you would not be incapable of communicating.
We stayed in your room for three days. Then Matt (my brother) and your dad got there. He stayed with you while we got a hotel, took a shower, and slept for a few hours. During those first days, you were on life support, very puffy from fluid – your head was very swollen and your eyes were swollen shut.
Several times you pulled out the life support and they had to re-incubate you. Also, several times they tried to take it out but you could not breath on your own until the eighth day. Even then, we had to keep yelling at you to breath because your oxygen level got too low. They were kind enough to let us stay in your room 24 hrs a day.
After you were taken off the life support, Matt and your dad went home. After two weeks, you were moved to a regular intensive care room because you got pneumonia. They put you in a bed that beat on your back for 20 minutes multiple times a day and gave you massive doses of antibiotics. Those antibiotics gave you pancreatitis. Now you couldn’t eat again and kept throwing up. You suffered with that for a very long time, as I’m sure you remember. It was awful. We had to change you, your bed, feed you, etc. because the nurses were so overwhelmed. (glad I don’t remember that my mom had to change me).
Also, your blood pressure suddenly dropped to dangerously low levels. We told the nurse she could not give you the BP meds but she said the doc ordered it. We made her call the doc and he stopped it. Travis and Paul (old friends) came to see you as well. You kept asking for Mattison and Carrie (Mattison’s mom). They came a few times, but you were very concerned.
Finally, you were moved to the hospital in New London (Connecticut). The doc there was great. The neurologist, however was awful. The swelling behind your neck was very large and painful. The physical therapists kept getting you up but you could do none of the things they wanted you to do. You said to one of them “Get the f!@# out of my room.” Finally, the doctor told them that you could not do PT and quit trying.
While there, you and I met with the neuropsychologist to discuss your mental disabilities. He wanted to know, from me, what you were like prior to your hemorrhage. He said it appeared that you lost about ten IQ points and some memory at all levels. He told us the memory loss would seem disjointed and not be linear. He also said that social memories are the most common to lose. He encouraged you to do everything you could.
While we were there with you, our family and friends and colleagues kept everything going for us at home and work. The bunco (a dice game my mom and friends have been playing for decades) girls sent money for our hotel, Pati and Chuck boxed up clothes and sent them to us, Sharon, Lynne, and Pati (I think) took down our Xmas tree and put everything away for us. Kathy and Linda were part of everything. Our colleagues donated their sick days to us and took care that our classes were running smoothly. Everyone pitched in and helped. Matt minded the phones while he was there and when he got home.
After more than a month. they told us you could go home but with care. Your doctor wanted us to take you home with us but you insisted on going home to Carrie (Mattison’s mom/ex-girlfriend) and Mattison. We were so afraid for you there. When you went home, we did, too. It was a very long month and a half.
After about a week, it became clear that you could not stay there. We flew back to get you. I can tell you that the most horrible part of all of this was watching your heart break. The physical pain you felt was nothing compared to having to leave Mattison ( I have no memory of that, but I know how much it hurt me). Your choking tears broke our hearts, too. Your airport story is one we remember, too. Matt said you either looked like a serial killer or a rock star.
Doug had a friend that knew Dr. Hsu (my California neurosurgeon). He contacted him and he agreed to meet us at Loma Linda at midnight when we arrived back here. He admitted you and became your wonderful doctor for many years. We are not sure about the timing of the first shunt. we thought they did it right then. They drained the fluid from your neck (very painful if I remember correctly) and put in the first shunt.
You were in the living room (I slept in the living room) for many months because you couldn’t go up the stairs. You were very sick and had trouble walking, dizzy spells, vomiting, etc. Very slowly, you gained some semblance of healing (I don’t remember if it was a comfortable hide-a-bed or not, typically, they aren’t comfortable).
When Mattison was about 3, you insisted on moving back to Connecticut. We drove you back in your babe magnet (I had a minivan and called it my chick magnet) across country with your few belongings. You insisted on driving because you felt less sick. When Doug drove, you said , “Whoa turbo” so he’d slow down (I feel more comfortable when I drive for some reason). We got you settled there and flew back home. I don’t remember how long you stayed there, but it became clear you could not stay (it ended up that I could not live on my own at this point, but I still needed to be near my daughter. It was heartbreaking every time I had to leave her).
We flew you back home to continue your healing. For many years, you learned to adjust to your disability. We’re not sure about the date of your second shunt surgery, but we so remember the incident at Matt’s (the steak incident) and getting you to the hospital to sew that back up. They did it in the hall with no pain block. Yikes. (this is why I have a high tolerance for pain. Often my treatments were done with no pain block of any kind).
Hope this helps you with some things you didn’t remember or know. From reading your stories, we have learned a great deal about your internal journey.
We love you and are so proud of you,
Ma and Doug
The inspiration I feel from my family and my friends is what keeps me going. I am eternally grateful for the support that I have received from everyone. I probably don’t say it enough, but thank you to my family and my friends.
One of my biggest inspirations is from one of my best and oldest friends that I’ve known since the 1970s. He is in a wheelchair and was told he would never walk again. But he is again walking, albeit not perfectly. He still uses the wheelchair, but he can walk short distances. No matter what has happened to him, he is one of the happiest and genuine people you will ever meet. He doesn’t complain or use it as an excuse. He is also handy to have him as a friend. Because of the wheelchair, we always get into concerts before anyone else. Him and I are usually the ones who sit in the handicapped section at events we go to. The handicapped parking is also a perk.
Inspirations can be found anywhere and each individual has to find their inspiration. My biggest inspirations over the years have been my kids, my family, and my friends. More recent inspiration is my girlfriend who cried when she read the email from my mom.
If there is anyone out there reading this, there are support networks everywhere. AVM support groups, foundations, or even Facebook groups. I would not be the man I am right now without support. I learned a long time ago that it is OK to ask for help, there is no shame in asking for help. I am willing to speak with anyone who contacts me at email@example.com. I’m not a licensed therapist of course, but you don’t need a license to talk.