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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On to the next hell

I’ll go into my release from captivity, AKA, the hospital. I spent about a month in the hospital in Connecticut. That’s a rough estimate because I don’t actually know how long I was in the hospital for and I didn’t consult my parents to find out that information. But on to the good part (sarcasm). I left in a wheelchair I believe. I could barely walk, barely eat, barely do anything without help. I was a couch potato for days. I won’t go into details, but I wasn’t getting the care I needed. My daughter was only a year old at the time, so she couldn’t exactly make me dinner or help we walk. I would have used her walker, but I’m 6’2 and might have broken it. She would have been upset about that. I remember I would put a rope on it and tow her around the neighborhood. But I couldn’t do that anymore. I couldn’t play with her, hold her, feed her, bathe her, I had to just sit there and watch her in her playpen of her bouncy chair. The realities were really hitting my in the face. I felt like a lump of crap on the couch. I had a walker or a cane to use, I don’t remember which, walking was part of my therapy. When I left the hospital, my doctors were hopeful that I would be back to work in 3 months. It seemed impossible for me to do that, but I tried. There was a physical therapist/nurse that came to the house to check on my. I don’t remember how many times, I just know that it happened and I have no memory of it. But I needed constant care. Faced with that fact, I made the decision to go to stay with my parents in California. It was a difficult decision because I had to leave my daughter behind. But if I didn’t get the care I needed, I wouldn’t be here writing this blog. Something funny happened at the airport waiting for our flight. I was wearing pajamas and a robe, with slippers I think. I was just sitting there waiting and a 5 or 6 year old boy sits next to me. I say hi, he says hi, and his mom tells him not to sit next to me. Was I that scary looking? I must have been. That was my first encounter with what I would have to deal with. The subtle but obvious, I don’t know exactly what word to use here, so I will just say prejudice. Thinking about it right this moment, it doesn’t bother me. People like that will always be around. I look normal now, so when I park in my handicapped spot, I get the look. I think only one person has confronted me with it. I just say it’s none of your business and continue with my day, irritated of course. But anyways, sorry about the tangent. So I finally reach my parents house and they had the bed downstairs so I wouldn’t have to walk up stairs. That was nice. I know that I needed help with my showers and it’s kind of embarrassing that I needed help from my mother to shower. I’m 32 years old and my mom is helping with my showers. Luckily, I have no memories of that. I think I remember that I was still in the angry phase at this point. But I was doing my best to adjust. Nothing at this point was easy. And then I had to go back into the hospital. This time in California to a very exceptional hospital and an exceptional doctor. I believe it was because I started going downhill again. Spinal fluid was building up in the back of my neck area and putting pressure on my spinal cord, which is apparently bad. The next thing I remember is needles being jabbed into the back of my head with no anesthesia to drain the fluid and me biting down on some leather or something like that. It was slightly painful. I think I was there for a couple weeks. I had a shunt put in my spine to drain the fluid from my head. Which was another surgery. I’m kind of glad I don’t remember a lot. These are all just vague memories. I went back home to my parent’s house of course. This is when I became a lab rat. The 3 months of going back to work was not looking good, but a short time later I decided to try and move back to Connecticut to be close to my daughter. I was alone, no friends, no family, just a hotel room that I lived in. The picture of me above is in front of this hotel I was staying. This is the only known picture of me right after it happened. My mom didn’t want to have reminders of what I looked like I think. I would have liked to see pictures of me, I don’t know why or what they would make me feel now because it has been so long. I can’t even guess at what I would feel. But I’ll stop at this point for today and continue tomorrow.

#DEI, not so much

I’m going to shift gears a little bit today and give a brief synopsis of my current situation. I am 50, disabled, and no recent job experience. 3 strikes, and so far I’m out. I spent the last 3 years studying international relations. My last class ends August 10th, 2022 when I get my Bachelor’s Degree. What I failed to realize is that most government jobs, city, state, federal, require a medical exam. What I am not understanding is how a disabled individual like myself is supposed to find a job/career that my degree prepared me for, if I can’t pass a medical exam? My job search the last 6 months or so was focused on finding a government job, more like a career in government service. I did have an internship lined up, but ultimately had to pass on the internship due to unforeseen financial circumstances. That was my shot. I will just say that what happened was devastating to me personally. I can’t talk about it because of the agreement I had to sign. My daughter starts studying at a University this fall and I decided it would be best for me to stay until she moves out on her own and be completely independent. We don’t really know anyone here so she had no family except me, I’m sure you can figure out why it would be best for me to stay put. There are a myriad of reasons that circumstances dictate our lives and a lot of the time, we are not in control. Which can be a horrible feeling. This is especially true for the disabled community. It’s not a good feeling when a recruiter reaches out to you and asks why you haven’t worked for the last 20 years. You answer truthfully, and never hear from them again. The real reason can never be known of course, and no one is going to say that it’s because of a disability. Maybe it’s because I have no recent experience? I thought that’s why I went to college. I am extremely intelligent, my learning disability just makes me a little slow to figure things out sometimes. But if a recruiter doesn’t bother to find out who someone is, they will never know. The disabled community is not irrelevant. I do hope to find a place where I fit in and love what I do, but my job focus has changed to finding a job where I can gain experience. It’s not ideal, but that’s my path for now. I am not a 20 something year old college graduate. I have many years of experience, life experience, and I have developed new passions in life. Like learning about the world around me. How the world functions, politically and economically. Maybe I’m not making that clear in my resume or cover letter? I have had my resume professionally edited, so I’m not too sure about that. One thing I know for certain is that the ‘good-ol-boy network still exists. The same as it was 30 years ago when I was trying to find work. Finding a career takes a bit of luck and being in the right place at the right time. Networking, finding the best internships, having the right degree for the current era, all play a part. One thing that being disabled has taught me, being able to adapt to changing circumstances. That is a trait that has to come naturally because in the disabled arena, no two days are alike. For example, I am in constant pain, a dull pain normally. I’ve learned to deal with it and it doesn’t bother me. Some days I might be more dizzy or nauseous, or my balance might be a little off. I have learned to adapt so I can continue my days. With so many setbacks, it is very hard to stay motivated. It would be easy for me just to go through life sitting on the couch and collect my disability check, and it would be completely understandable if I did that. But part of being disabled is getting to a point that gives us the best quality of life. I spend almost 10 years as an experiment to find my best quality of life. And it didn’t come from doctors or medicine, it was me that gave myself the best quality of life because I never gave up and I continue to move forward.

My personal #AVM story

I’ll start by saying that there are many different places an AVM can show up in the body. Mine just happened to be in the back of my brain and close to my cerebellum. An AVM is basically a jumbled mess of veins that get tangled and over the years one of the walls gets pushed out until it breaks. I am not sure of the technical terms, so I’m just not going to mess with technical terms. I think technically, a ruptured AVM turns into a TBI if there is damage done. In my case, there was damage.

So there I was, just going to bed and trying to fall asleep on December 10th, 2003. All I remember is getting the worst headache of my life. My ex-girlfriend’s brother calling the ambulance, me being taken down the stairs and into the ambulance I go. I lived in Connecticut at the time. The next thing I remember is hearing the flatline and then falling asleep. I don’t think I was out for very long because obviously I’m still here and writing this blog. I found out later that I got to take a nice helicopter ride to Yale Medical Center, it’s too bad I don’t remember my only time in a helicopter. I know I was in an induced coma for a week or two. They cut the back of my head open, removed some bone from around my brainstem, removed part of my cerebellum, a tiny bit of my brain, and cut the clot out. There were no warning signs about the AVM throughout my entire life. It’s just one of those things that just happened. And it completely changed my life. I only have little glimpses of my time in the hospital, which was about a month and a half. My immediate family was there, some close friends went to visit me, but I don’t remember any of that. My parents told me I was very rude to the nurses sometimes. They understood, I guess it’s normal for brain injury patients to do that. I had a catheter in my wee-wee for weeks, unfortunately, I remember when they pulled it out. Not pleasant. I remember glimpses of physical therapy. All of my muscles atrophied so I could not walk or stand very well. I weighed around 135lbs, down from about 200lbs. Life was not good at this point. I have a glimpse of a memory of throwing up a lot after I began to start eating solid-ish food again. I think the physical therapists were trying to make me to way too much. I can’t describe the feeling of not being able to walk or even stand up, turn my head, eat food, or go to the bathroom by myself. My breath must have been bad because I have no idea if the nurses brushed my teeth at all, or took a shower. Glad I don’t remember that either. So, after the 20 or 30 staples were removed from the back of my head, I went poop on my own, I was conscious and talking I guess, coherent, they let me go home to where I was living at the time. I still don’t remember at what point I knew my old life was essentially gone and I don’t know what kept me going. And I still have no recollection of waking up. I think that is the weirdest feeling, not consciously knowing when I woke up.

My first blog post

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