My first step

What career field do I choose for college?

This was an agonizing choice. I had always worked in the engineering field. I knew I couldn’t pursue an engineering degree simply due to my intellectual disability. It is extremely difficult for me to do complicated math. It was just too difficult. I know this because I tried to practice math at the high school level. My daughter’s math classes were too hard for me. Math came pretty easy for me prior to my brain thing, but now, nope. I can read blueprints and engineering drawings all day long, they were still difficult for me. So engineering was out, and any field where there was a lot of math.

My best option was in the social sciences and government work. Over the years, I had built up a great deal of knowledge in international relations. How the world operates and interacts, trade, finance, development, and so on. I read articles on world affairs on a daily basis and began forming my own opinions on matters of international interest. It wasn’t prolific reading, but I learned quite a bit. It was also obvious that I had a lot to learn, I was not an expert by any stretch of the imagination. But I wanted to be an expert in something. An international relations degree would give me that opportunity. So that’s what I chose to study.

Where do I start?

The obvious choice for me was to start with community college. I had a lot of credits from when I went to community college in the early 1990s. The credits were still good. I was shocked, but happy that they transferred.

Since I had the GI Bill for serving in the military, I knew that would help pay for college. The only problem was that it had been 17 years since I served, and the GI Bill runs out after 10 years. There’s always some hurdle you have to jump through. It was a long and arduous process to get my GI Bill back. I had to prove that I was disabled and that’s why I didn’t use my GI Bill in the allotted 10 years. The folder I have for all of my medical reports is over 3 inches thick so I had to go through each one to find the pages that prove that I’m permanently disabled. Needless to say, it was a pain in the ass.

The down side

There’s always a down side and it’s a little complicated. The post-9/11 GI Bill is different than the Montgomery GI Bill. I served until November of 2001. 9/11 happened in September of 2001. The Post-9/11 GI Bill says I had to have served for at least 3 months after 9/11. This meant that I was only one month shy of it. The difference between the two GI Bills is the 9/11 pays for school AND gives you a monthly stipend. The Montgomery only gives you a monthly stipend. I wasn’t complaining TOO much because I still received the monthly stipend, which is tax-free. But it didn’t pay for school which meant lots of student loans.

The upside

I was in school! That’s the upside. Me, 47 years old, an intellectual disability, it was truly the unknown. I had no idea if I would be able to learn at a high level, or even learn at all. It was scary, but I had to try. I know there were people who doubted me and my abilities and my intelligence, but I had to prove to myself that I could do it. There’s no denying it, I was excited to see how it would go.

The first semester

I signed up for 3 classes at the community college. I didn’t want to take too many classes and overburden myself the first semester. January of 2019 is when I began my collegiate career. I’m pretty sure it was 3 classes, but I can only remember 2 of them. An English class and a lower level math class. It was amazing, I remembered some of the math for the first month or so. Then I remembered nothing and was confused a lot. My hard work paid off and I got an A in the class. What was more amazing is on my first research paper in almost 30 years, I got an A on it. I knew then that I didn’t lose my writing skills and that I knew I could do it. It was a revelation.

I wouldn’t have known unless I tried. Looking back on it now, I wonder if I would have returned to school if I was still married to my ex-wife? I don’t know and if I could ever answer that question. In retrospect, it doesn’t matter. I accomplished something amazing in that first semester and it let to greater things. It was extremely difficult and time-consuming, but I did it with no help from anyone. It was my brain that did it. I can’t begin to describe the feeling of accomplishment after so much pain and agony I’ve had to endure.

Testing me for seizures

Summer monsoon in Arizona

This is just a quick note. Had a nice thunderstorm roll through the other day. Rain, hail, thunder and lightning, 50 to 60 MPH winds. We were all safe, but I can’t say the same about the house. The wind ripped some roof shingles off and blew a tree down. Granted, there are other places that have to deal with much more severe consequences of weather. It is not a regular occurrence here.

My morning consisted of cutting down the tree that was resting on my neighbor’s gate. A couple of power outlets in the back yard aren’t working. It’s been a fun day so far. Then as I was sitting at my desk looking out my window, a hawk captured a lizard and was eating it. My daughter wasn’t very happy about it. It’s the circle of life, but that didn’t help much.

The tree that blew over

On top of snakes in my yard, rabbits, lizards, tarantulas, a small snake inside my house, a dove that likes to fly into my windows, and now a hawk eating a lizard in my tree. Nature and wildlife are cool, just not so much at my house. I don’t think I have a sign up that invites animals in. It keeps me entertained I guess.

What matters most

I was pretty devastated with the divorce and the circumstances around it. After I got served the divorce papers, my first priority was to get the hell out of my house and away from all the bitterness and anger. And there was a lot of it. Once I moved out and got somewhat settled, my next priority, and what mattered most, was my son. The divorce hadn’t even begun so I had to arrange visitation time with my ex. This was a very difficult process. She wasn’t exactly keen on visitation at this point.

The divorce

Time went by very slow for a while. We settled on a visitation schedule until the divorce was final. A lot of new information came out during the divorce. I’m not going to go into detail because it is just tedious information. My ex and her mother tried to prove that I was an unfit parent because of my disability. That stung quite a bit. That didn’t work out for them in the end. The most important part was that I got my son half the time and I am the primary residence. This is important because I am the one who receives the extra money for him from Social Security every month, on top of my main paycheck. All things considered, I made out pretty well in the divorce. It took a little over a year for the divorce to be final.

After the divorce, things were still not well between us. There was still a lot of anger and there was no cooperation at all. It was a very tense time. I did try my best to be cordial and try to cooperate and co-parent. Whether that was equal is up for debate, my story would be different than hers of course. There are always two sides to every story and we believe what we want to believe to make ourselves feel better about ourselves. That’s just human nature.

Lightening up

After a while, things started to lighten up. She was becoming easier to work with when it came to our son. Her demeanor and attitudes were changing for the better. She is now remarried and I have my girlfriend. I don’t know if that had anything to do with it. Admittedly, I was kind of scared during this transition to niceness. Thoughts that she was plotting something because of my previous experiences with her and her mother were in my mind. So far, nothing has happened. What matters most is that our son is happy. My son still mentions that he would like us to be back together, but I think that’s normal. He will grow out of that. It is still hard to hear him say that though.

My goals

My goals were still not clear to me during the divorce. I still struggled with what to do with my life. Having a family filled the holes I had and I didn’t really think too much about personal goals. I thought about going back to work and even applied for a few jobs. Nothing really panned out and I had to think about my Social Security.

Social Security

When someone receives Social Security disability benefits, you are not allowed to work unless you make under a certain amount. Any job that I could have got, my social security benefits would have ended, or my earnings would have been deducted from my benefits. I had a private insurance disability benefit that I had to consider too. Money would have been deducted from this insurance payment too. Basically, whatever money I earned would be deducted, which would leave me in the same financial position whether I worked or not, unless I found a job that paid a lot of money. That wasn’t a realistic option.

It’s kind of a complicated scenario with a lot of different aspects to consider. My benefits would have stopped if I became gainfully employed. If it turned out that I couldn’t continue working because of my disability, I would have had to reapply for benefits. That is a two year process.

My goal at this point was to figure out a way to survive on my disability payments. For the most part, they covered my expenses but I would live the rest of my life on a tiny fixed budget. After the divorce, this fact became increasingly clear to me. I had to figure out a way to change my circumstances. There were a lot of sleepless nights worried about what I was going to do. I knew I couldn’t just get a job. Being 50 years old, disabled, and no recent work experience meant that I would start at the bottom again. I have a home to maintain and 2 children to think about.

Light switch

I don’t have any idea what triggered the switch that went off in my head about going back to school. My disability benefits were still coming in and I wasn’t working. Going back to college could lead to a better paying job, or career field I enjoyed. There was no way I could return to the career I had prior to my accident, so what career field did I want to get into? Yet another question I needed an answer to. Never a dull moment. Life keeps changing and I keep adapting.

Momentum stopped

My momentum carried me until my divorce in 2018. I lost my way and I had no idea what to do about it. The circumstances were not all my fault, I thought I was doing something for my wife at the time. It turned out I was completely wrong about it.

2010 to 2014 was going great. My social life was thriving, going to see a lot of concerts with my friends. I even travelled to Europe by myself so I could see a Formula One race in person. I was in Spain for the Spanish Grand Prix. It was a dream come true for me. It was extremely difficult for me physically, but I managed to keep my limitations in check. I stayed in a small town near Girona. My hotel overlooked the Mediterranean Sea. I capped off my trip by traveling a short distance to Monaco to see the most famous race track in the world and then took a train to Paris where I got to do a Facetime chat with my daughter on top of the Eiffel Tower.

From my hotel in Spain

Then came 2014. I finally bought my first house and was able to move out of my parent’s house. That was also a dream come true. I moved into a cabin in the mountains. Basically, it was the only place I could afford. Southern California isn’t a cheap place to live. I wasn’t exactly getting rich off of my disability payments and I was on a strict budget. But I made it work. I completed some projects on the house to make it my own. It wasn’t too far from my friends and family, so I could still keep up my social life without too much extra effort.

Later that year I met what I thought was the love of my life. Things were great at the beginning. I eventually moved into her house. I ended up renting out my house for a while. She was pregnant and we had our son, who is a big 6 now. We got married, she worked and I stayed at home with our son. It wasn’t too much trouble because I didn’t work and she did. I think there might have been a little resentment there, looking back on things, but who knows. I certainly don’t. My daughter seemed happy with her for a time.

Momentum shifted

She had an extremely close relationship with her mother, I think that turned out to be bad for me. Things were kind of taking a downhill turn at some point. I think she wanted another baby, but it wasn’t in the cards for me. I was getting older and it was enough for me to take care of our son. But I loved every minute I spent with him, and still do. She would probably remember things differently than I do. That’s the nature of divorce.

A decision was made that we would all move to Arizona where my ex-wife had family. Her intention was to go to nursing school, that was my understanding of why we moved. And the cost of living is much cheaper than California. They bought a house for us, notice I said they, and we moved in on my birthday. 8 months later I was served with divorce papers, and just like that, the momentum came to a dead stop. This is where I lost my way. I am relatively sure that she would see it another way, but it’s tedious to go into detail as our ideas about it are much different.

Momentum stopped

There was a fair amount of devastation that I felt. For the first time in a long time, I had no idea what to do. I moved into an apartment, had to get another car, buy a crap ton of new furniture, and learn how to live alone in a city where I had no friends and no family. My daughter wasn’t living with me full time yet, so it was basically me and my son. Learning how to cook for one adult and a toddler is kind of a chore in itself. How do you make spaghetti for one person? What do I do with my time when I don’t have my son? What do I do with my life at this point?

Returning to California was an impossibility. I would have to leave my son for one, and California was just too expensive for me to afford. I was not going to leave my son even if I could afford it. One bright side is that the divorce went well for me. It still didn’t answer my questions. This crisis reminded me how painful it was to try and adapt to a new life as I did when I had my brain explosion thing. It was just as painful. The biggest difference was that I had friends and family to support me. In Arizona, I had none of that.

Adapting, part 2

My son was only 2 and my daughter was 16 at the time. The only person I had to talk to was my son on a consistent basis. Conversations with 2 year-olds aren’t exactly engaging. I couldn’t talk about life’s existential topics with my son. Changing diapers, farts, wiping his butt, playing with his toys, and spooning food into his mouth took up most of my days. It was all worth it of course.

It turned out that I needed something to fill the very large gap in my life. A purpose outside of my children. I thought I would have my family, but that didn’t work out so I needed to make a life for myself. I tried dating a little bit, but I wasn’t ready for that at the time. Women kind of disgusted me for a little while. I think I was depressed for a while and I couldn’t find the motivation to do much about it. But I couldn’t just sit on the couch and collect my disability checks for the rest of my life either. One of two things would happen, I would find out that I was still not able to work because of my disability, and/or I was not able to learn again. I needed to find out both so I could have at least a partial direction that my life could take.

Momentum

As I kept venturing out and meeting more and more people, I continued to build my friend network. Reconnecting with old friends and gaining new friends. The group I gravitated to were people that I simply got along with and had fun with. I have no idea how that happens, but that’s just human nature I think.

As I ventured out more, we all became closer and we were a pretty tight knit group. We are still a pretty tight knit group today. I was still a little shy and reticent because of my recovery. I don’t know exactly when I plateaued, but it was around this time and I was still conscious about how I appeared to others. My stiff neck and not being able to hang out for as long as I wanted to. Fatigue was still a problem.

The solution I chose for fatigue where my friends were concerned, was to just drink Coke while I was out. The caffeine helped me stay awake. We would usually hang out at one of 2 or 3 bars. The bartenders were our friends and it got to a point where they would know exactly what I wanted to drink and have a Coke ready when I walked in and I usually get free cokes. I tip well so it doesn’t seem to be a big deal that I get free cokes. The owners are in our friend group as well.

The story with cokes is that I can’t drink alcohol. The chemistry in my brain does not mix well with alcohol. If I drink a beer or take a shot, it makes me want to throw up. I don’t miss drinking at all and I really don’t care if other people drink around me. I like to laugh at the drunk people, that’s my entertainment. Drinking no alcohol also means that I am a cheap date. There are people that can spend over $50 in one night. The most I spend is $5 or less. I tip $1 per coke I drink.

Confidence

As I ventured out more, I met an ever increasing number of people from all walks of life. There is an extreme mixture of personalities and social classes within our group. There is still the core group, but many close friends. The greater number of people I met, the more my confidence grew. Shyness went away for the most part and I became close to people within our wider social group. I’m obviously not going to get along with everyone, but everyone is still respectful. The same views are not shared by everyone, so we tend to not talk about certain subjects like politics and religion. I think what I enjoy most is that there are no awkward pauses. We can hang out every single day and still no awkward pauses, even without talking about the serious subjects. We are just hilarious and genuine people.

Dating

The confidence I built up over time helped me begin dating again. It was a long time before that entered my head. It didn’t go all that great. I was dumped because of my disability, maybe some of it was my fault? It was nice just to have some companionship and someone to talk to besides my parents. Being that I was in my 40s and living with my parents didn’t exactly give me a lot of points with women either. How I supported myself and if all of my body parts work were the most common questions.

Stubbornness is probably my biggest flaw. There is a lot of stubbornness in my family, but I maintain that it’s a side effect of my brain injury. I don’t know if I was as stubborn prior to my brain thing. Moodiness is attributable to my brain injury. Anger is not usually a problem, I’m pretty even tempered. There is no medicine for stubborn. It is a strange feeling to have two lives. One prior and one post. A serious disconnect between the two. I had to learn how to be myself again, even if my personality now is the same as before.

For me, dating and friendship equaled life. Interacting with people gave me more confidence, even the rejections gave me more confidence. The disconnect between my two selves translated into relationships. I honestly did not care, or care enough about my relationships to feel any emotions. I got over things very quickly with little to no emotion. The rejection I felt was a symptom of my recovery, not the act of rejection itself. Even if it was me who was doing the rejecting. Accepting my disability for what it was, and at the same time rejecting my disability for what it was. This same dichotomy translated into relationships. I think this way of thinking kept up my momentum as life progressed, so did my way of thinking.

My Guide to a Support Network

As the email that my mom sent said, one of the hardest things on me was being away from my daughter. It broke my heart. But she lived on the east coast, and I lived on the west coast. I tried to move back to the east coast to be near my daughter, but living on my own during that recovery period was just an impossibility for me. There was no support network for me back east. There was no one, no friends, no family, no real way to meet people, no support network, this made life even harder. I had to go to doctor appointments alone and I was still not in very good shape.

Alternative

The alternative was to fly back east to visit her. My disability benefits started (that’s a whole other issue) around 2 years after my brain explosion happened. I say it like that sometimes because it sounds funny to me. So, I started flying across the country every month or every 6 weeks or so. Plane tickets, hotel rooms, rental cars, this is where most of my money and my time went. The trips lasted a few days to a week or so.

Consequences

Although I saw my daughter quite a bit, it didn’t erase the distance. Flying back and forth started to take a toll on me, physically and mentally. Physically, it was hard to fly due to the cramped nature of airplanes. Driving to the airport, picking up rental cars, checking into hotels, eating out, flight delays and cancellations, it becomes physically exhausting.

Those same stressors cause mental exhaustion. I flew into New York when my ex was living in Connecticut. Flight delays and cancellations happened often, mostly for weather. Summertime thunderstorms, winter snow storms, it was a mess at times.

Finding things to do was difficult when you’re waiting at an airport for hours or overnight and don’t know anyone. I had already been to see all of the traditional tourist sites in New York. I saw the World Trade Center site after all of the debris was cleaned up and only a large pit remained. One time I tried to go to the beach but that ended in disaster. After the subway left the city, a transit cop asked me what I was doing. I told her I was going to the beach and she said that I need to get off the subway at the next stop and go back to the city. I assumed it was a safety issue and complied with her suggestion.

Funny excerpt about subway trains

Me, my daughter, and her brother went to Washington, D.C. We were standing at the platform waiting for the train. It was a little crowded but not too bad. We had to wait for the people exiting the train. The subway system in DC is very good by the way. So the people get off, others get on in front of us. My daughter and her brother step into the train and were watching me get on. Unfortunately, my right arm and right leg made it onto the train. The doors shut and I was only half-way on the train. The kids started crying, and here I am stuck in the door. I still have no idea how it happened. If the train left with me stuck in the door, I probably wouldn’t be here today. Eventually, I shoved the doors open and jumped inside. I immediately hug the kids and tell them it’s ok. It was a weird situation, but we just went on with our day.

Usually I would go find a place to eat or find a quiet corner to sit in and relax. It’s extremely difficult to relax sitting up. Laying down on the couch or my bed was the preferrable choice. It’s honestly not because I am lazy, laying down just provides the most comfort. It has to do with how the fluid in my brain is distributed and support for my head.

Needless to say, flying back and forth began to take a toll on me. One year I flew 49,000 miles. The number of miles didn’t upset me, it was the fact that I was only 1,000 miles away from achieving Gold status with the airline. That meant more perks like automatic upgrades to first class. I was a silver member so I go upgraded sometimes. I am tall so the little seats with no legroom were horrible for me. An aisle seat was always the best. In first class, I didn’t have to worry about legroom.

Living Situation

When my brain exploded, I moved in with my mom and stepdad. I can’t even begin to describe how much they helped and supported me and I am always thankful. When it happened, I was 32 years old. Not a horrible age to be living with my parents. As the years went by and my recovery was slowly moving forward, living with my parents became quite an ordeal. Me and my mom butted heads sometimes, I had no private life, and who would want to date a 40-year-old man who lives with his parents? These are questions I started asking myself.

Friendship and mental health

I started venturing out with my friends after a while and slowly integrated myself into somewhat of a social life. Spending time at home was becoming mentally difficult. My parents were my network, they were who I had the most contact with. Socializing gave me an outlet and widen my support/social network. Slowly I built up a good friend network, people that I am close to too this day. I can’t begin to tell you how important it is to have friends. It really does effect your mental health.

The friendships that I developed gave me an outlet to be myself. When I was at home, I was always in my room just watching TV, or doing something on the computer. I had different projects I tried, like making surfboards. But I wasn’t very good at it and it took many months to make just one. Professionals make one board in a day or two. It gave me an outlet. The friends I have, I am very close to.

It is strange to say that most of my friends didn’t know me before my brain thing. They don’t know what I was like, what my personality was. To be honest, I don’t know what I was like either. I like to think that I was pretty much that same. We have had many adventures together. The one thing that I can say about my friends is that it is impossible to be in a bad mood around them. We are always having fun, laughing, joking, no awkward pauses. My girlfriend is the same way, I can never be in a bad mood around her. A support network is invaluable.

I’ll add a second part to this in my next post.

Clarification

The email from my mom and stepdad I received

Hi,

  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

Inspiration

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.

Support

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 info@michaelfogliett.com. I’m not a licensed therapist of course, but you don’t need a license to talk.

Aspirations and Realities

For many years, I really had no aspirations outside of my recovery goals. Aspirations were never really recovery goals and so I never set any goals for that. I believe it was because the goal of going back to work never materialized until now. When I was a lot worse than I am now, there was a lot to contend with on a daily basis. Being able to turn my head was a goal with no date attached to it. Days would be filled with moving my head back and forth and up and down.

Reality

There was no looking ahead to better times. Mostly because the future was an unknown. The brain is a very misunderstood organ. When an arm is broken, a cast is put on and 6 weeks later it’s healed. My brain is missing part of the cerebellum and can’t grow back. The brain makes up for deficiencies by using other parts of it.

When people use the phrase, are you brain dead? I have to say partly, and everyone laughs. My brain doesn’t regulate the spinal fluid in my head. This can cause it to have too much, or too little fluid inside my brain. Then pain gets worse or goes back to my normal state of pain. The medications I take are to correct for the other automatic functions like my blood pressure, seizures, and breathing. Apparently, the medicine works.

There is a tube in my spine that drains the fluid from my head. A magnetic valve is attached to it to adjust the flow. Metal detectors don’t detect it so I can’t whip out the card the doctor gave me to prove I have the valve. That was a little disappointing. It will get clogged at some point in my life. The only way to tell is if I start to feel a lot of pressure in the back of my head. Pressure would build and put pressure on my brain stem and that is not a good scenario. That is not a goal, but something I can look forward to.

Alzheimer’s runs in my family. My brain is already bad and I can’t wait to see how that goes. I think it was my Great Aunt Mae who famously said that she had to take a shit from here to the moon and as a result, we all had to leave. I don’t remember how old I was, but I know I didn’t want to see or hear what a shit from here to the moon looked like or sounded like. There would be plenty of that later in my life. Since I don’t know you, that’s all I’ll say about poop stories.

A funny tangent

Speaking of the tube and valve in my back. You can feel the valve under my skin. It is a little strange. We were at my brother’s house for a BBQ. Sitting on the couch waiting for my steak to get done, I suddenly feel a liquid dripping down my lower back. In my mind it was going to be blood because I still had the stitches. My assumption was wrong and it was a clear liquid, spinal fluid.

My steak

The liquid dripping down my back is not what I was upset about, it was the fact that I didn’t get to eat my steak. At this time I was still getting used to eating without the hospital taste in my mouth. Needless to say I didn’t get my steak and instead got to spend the night in the hospital, a Seventh Day Adventist hospital that doesn’t serve meat and I spent a lot of time at this hospital. This became my hospital in California because one of the best neurosurgeons in the country was at this hospital. Still, no steak.

Cause of the drip

Spinal fluid is highly susceptible to infection and consequently the hospital made me wait outside in the parking lot of the emergency room until I could be seen for fear of infection. Finally I get in there and they put me in the hallway away from the other patients. It was a little strange to be in the hallway. The doctor looks at it and says the stitches weren’t tight enough and the fluid leaked out. It’s OK for spinal fluid to roam free because it just gets absorbed by the body anyways. For just-in-case purposes, I remained in the hospital and they put me in the transplant ward due to it being the most sanitary part of the hospital.

Crisis averted

There ended up being no infection and I got to go home after a day or two I think. The valve the doctor installed was a bit of an experiment. There are more stories about this aspect of my experimentation.

The Best Advice for Adapting

After a traumatic life event, especially one that completely changes your life, time doesn’t stop. You can lose your job, lose your family, and feel completely lost on how to adapt and move on. That’s the part that’s extremely difficult. I even had to adjust how I ate food. If I was having soup, I would fill the spoon up and bring it to my mouth. But if my mouth was too far away from the bowl, my hand would start shaking so bad that the soup would just fall out. That was a little frustrating, especially when it would get all over my shirt.

Petrified

It was problems like these that prevented me from going out in public for many years. I walked like a 6’2 ironing board because I couldn’t turn my head. Eating was difficult, brushing my teeth, and getting dressed. Nothing is as frustrating as trying to put your underwear on and try to put your foot through the hole, and completely miss or get stuck and fall down. That still happens to this day.

Adaptability

The adaptation I made for eating was to put my mouth closer to the plate or bowl. That creates a whole new problem of looking like you’re shoveling food down your throat. But I would rather deal with that than deal with spilling my food all over the place.

Walking

I think the most difficult part was learning how to walk again. I knew how to walk, but I didn’t know how to walk without losing my balance and falling down. Which happened a lot. I am missing part of my cerebellum, and that controls balance. For many years, it looked like I was drunk because I have a tendency to veer off and not walk in a straight line. I always hoped I didn’t get pulled over and have to do the field sobriety test. I would definitely fail. I should mention that I don’t drink alcohol anymore. It makes me want to throw up, which is bad. Alcohol and my brain don’t mix. Sorry for the tangent.

I walked using a cane for a long time to help with the veering off course. Walking up and down stairs was/is a challenge. If there is no hand rail, I’m in trouble. Falling down stairs is just a little embarrassing and it kind of hurts. Eventually I stopped using the cane. This might sound strange, but most people walk with their feet. They feel their way by touch and peripheral vision. My adjustment was to always look at the ground. I would occasionally look up of course. Running into people is a problem when you can’t look up.

Fainting

The fainting spells were hard to get used to. When I do certain things or I move in a certain way, my head spins. Crouched over looking under a car, the head spinning effectively makes me go blind. Standing up to fast starts the spinning. Moving my head side to side to much makes me nauseous. The last time I fainted was a few years ago I think. If I’m laying flat on my back, I have to be careful how I sit up. It’s pretty funny to watch because I look like a beached whale flopping onto my side to get ready to stand up. It’s a process.

Permanence

Although sometimes there is noting I can do about the dizziness, no matter what I do. Doing physical work is fine for a little while. I know my limits and when to stop. The dizziness and nausea get really bad and I have to go lye down for a while. Being outside in hot or warm weather makes me sweat a lot, even if I’m just sitting there doing nothing.

Everything is an adjustment. You don’t just get up and walk out of life changing events. For my particular situation, I adjust every single day. My head spinning, nausea, dizziness, pain, can vary from day to day, hour to hour, or even minute to minute. For people that are lucky enough to have AVM’s found before hemorrhaging, it can be very scary to know that you have to fix the problem and are never sure of what will happen after the surgery. My best advice for moving on is to adapt and adjust to your circumstances. Believe me, I know how hard it is and how long it takes.

On to the next hell, continued, recovery

On with my story. To be honest, I don’t remember much to this day. I know that I moved back to Connecticut to be near my daughter, but I have no idea if it was weeks or months before I moved back. I didn’t ask my family or anyone to help me out with a timeline because I wanted this to be completely sincere about my recollections. But one thing is absolutely certain, it was a very bad idea to move back. Not for reasons that had to do with my daughter of course, she was still too young to realize what was happening. I’m more talking about health wise. I was still in very bad shape. Both mentally and physically. I was taking a lot of pain medications, I still had trouble walking, I got fatigued very fast, it was hard for me to make food, shower, take care of myself. It was extremely difficult for me to spend quality time with my daughter. I didn’t want to take her back to my little hotel room, and I couldn’t really spend time with her where I used to live with my ex-girlfriend. That part created its own problems on top of all the other crap I had to deal with. So life was extremely difficult. I had to go to doctor appointments. Most of the appointments were for procedures and I needed a ride there and back. Reluctantly, my ex drove me to them. I think the angiograms were the worst. The doctors cut a little hole in my groin into the artery and they put a catheter in that went up into my brain area, shoot some dye up there, and look at the veins and see if there was anymore damage. The only cool part was seeing it on a live x-ray. That part wasn’t so bad, it was when they closed the artery that was extremely painful. They had to clamp it shut, it wasn’t a lot of fun. I think I had about 5 of those done. Along with MRI’s and CT’s. I know at one point I went into where I worked to say hi to everyone, but I had no answer for when I could go back to work. The doctors still said 3 months, but that wasn’t very realistic. That job was my dream job, and I only worked there for 6 months when this happened. All of the employees donated their vacation time to me so I could still get a paycheck while I was recovering. I can’t thank them enough for that. I still keep in contact with one of the engineers there. I have a feeling I was only out there for about a month, and then I had to move back to California. I believe that my family definitely did not agree with moving back there so soon. But I had to see my daughter. After I moved back, I still had to keep the recovery process moving. I know I was taking a lot of Vicodin for the pain. I have no idea if I took any other medications at this point. I started to build up a tolerance for Vicodin and I was taking around 3000 mg for it to work. Eventually, I just stopped taking it. It was too much and frankly not helping. So I developed a very high tolerance for pain that has never gone away.

So the 3 month mark comes and goes, and I wasn’t much better. I still couldn’t turn my head, my muscles were slowly growing back, and my appetite was slowly returning. I was even starting to take normal poops again, I know that’s gross, but its part of the process. Reader beware, I’m kind of gross sometimes. I probably should have put that warning in earlier, my bad. I was getting used to the constant changes in my pain level, but the dizziness and nausea were getting hard to deal with. Just side effects I had/have to deal with. I don’t like throwing up and I was doing it a lot. But I had to push through it to get better. Getting better seemed like an impossibility to me and I suffered the mental effects of it. I was still angry, depressed, and many other emotions that weren’t healthy. I didn’t want to hang out with friends or family, or even go anywhere because it was such a struggle. For some reason, driving didn’t really effect me much. That’s one thing I could do, but not very often at this point. I saw a neuropsychologist because I was dealing with PTSD. Apparently it’s normal for this to happen and these specialists deal with my kind of injury specifically. I think that helped me a lot, too bad I have no memory of it. This is around the time that I became a guinea pig to experiment on different treatments to give me the best quality of life. I had physical and occupational therapy, and different drug treatments. I remember the doctor trying to inject a steroid concoction into my head. I only remember because he jabbed the needle into my head a bunch of times for each treatment. They were trying to numb the nerves in my head. But the surgeon moved them out of the way during the surgery and didn’t put them back in the right place. I did two treatments of that I think, and since they couldn’t find the nerves, they stopped doing it. The physical therapy was very difficult. It’s hard to go through it because it’s a lengthy process and from one session to the next, it feels like you’re not making any progress. And before you know it, the 6 month mark goes by and I’m still not back to work. And on to the next post. I hope anyone reading about my accident and recovery can take a little joy out of the humor that I inject here by making you smile and at least for a moment, forget how bad life can be sometimes. Even if you have a great life, I hope you enjoy reading. These stories are not meant to depress people or to make anyone feel sorry for me. It isn’t in my nature to complain. I enjoy writing and sharing what I have to say. I try to be lighthearted about it to offer a sense of hope for anyone who deals with the crises that come up in life.

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