I mentioned to my new wife-to-be that if she wanted to opt out of marriage because of circumstances unknown, that I would understand. She said no, that we were in this together, and she has been there right along the whole way. We married August 23, 2006, and she is the most loving, caring wife and caregiver I could ever ask for. And I know it was harder on her than on me. A caregiver and support system is of most importance to get through a TBI or ABI.
On April 9, 2009, I had the operation that changed my life forever. The following evening, I developed two brain hemorrhages (strokes), one each on the back left and right side of the brain. I was in the Boston hospital for ten days, and for the first three days, I was completely blind. I didn’t know where I was, who was there, or what had happened. It was scary. I later learned that my loving wife was there all along. I was transported to a local hospital in Lewiston, where I had only a week of rehab. In that week, I saw or imagined there were large holes in the hospital floor, things flying around, and the tops of tables peeling, and so on. It kind of freaked me out.
I was sent home until I could start rehabilitation. While in the hospital in Lewiston, something strange happened to me, and I never told many people about it because I didn’t want people to think I was nuts. I will share it here now. One day, at the foot of my bed, I saw this image appear. It was a face in the colors of light blue, tan, and light green. It started freaking me out, but for some reason I said, “I don’t want to be like this.” My roommate said, “Who you talking to?” I said, “There is something at the foot of my bed, can’t you see it?” He said, “There is nothing there.” I never heard the words, but I felt the words, “You’re going to be OK,” and then it slowly disappeared. The only person I told was Cheryl. I know some won’t believe or understand, and that’s OK.
A couple of years later, it still weighed on me, so I asked one of the pastors (Seth) from church if he would pick me up for breakfast, as I wanted to share this with him. After telling Seth what happened, he mentioned that it most likely could have been an angel. There, I got it out there, and you can believe it or not. No, I wasn’t on drugs.
While waiting at home with constant care, it was very difficult for me to accept what was happening to me. I only saw half of things, like people’s faces, because I had lost my left peripheral vision in both eyes and could only see half of everything in both eyes. I still have this issue. I couldn’t read, write, walk, or talk very well and had memory problems. I couldn’t even dress myself; Cheryl had to lay my clothes out on the bed for me because I didn’t know what to put on first. How sad is that? I had to learn these things all over again. I didn’t know if I was ever going to get better and contemplated suicide. I just no longer wanted to be like this.
A few months later, I got into rehabilitation at WestSide NeuroRehab in Lewiston, and things started to get better very slowly, but I was making progress. Learning all over was troubling at times, and I would get very frustrated at myself and at others sometimes for not understanding what I was going through and what was going on inside my head. Sure, I looked normal, but I sure as heck didn’t feel normal. I felt I was getting better until the insurance ran out.
I lost my ability to drive, which has been my biggest loss of independence. Of anything, this I miss the most. People that I worked with and those I thought were friends are not in my life like they used to be. I’ve become more sensitive and look at life differently. I cherish every day, good or bad.
I don’t know if I have gotten used to me being the way I am or if I have improved some. I guess a little of both. I’m very grateful I didn’t take my life when I was at my worst. There is so much to live for, especially family.
I’m doing the best I can now, and I realize that if you think you have it bad, well, there is someone out there worse off than you. Yes, every day is a challenge. People that don’t know your story can be cruel, and my new life is a new journey that has a lot of unknowns, but that’s okay. I have a new family of friends with TBI and ABI. They understand me as I do them.
My brain tumor grew back two years after it was removed, and I had proton radiation done, which is why I must go to Boston every year for an MRI and full body scan, because this type of tumor can grow back on other organs. They drilled three small holes into my skull and snapped small steel rods into my skull. A special mask was made, and on the day of the proton radiation, I was strapped onto a table, and the mask was clamped down so I couldn’t move. The table then proceeded to rotate every which way, even upside down. The three steel rods were used to pinpoint only the tumor and not the brain itself.
I clean the house, cook, keep up the yard work, cut and split wood, build wood projects, fish, and so much more. My goal is now to help others with brain disabilities and veterans.
I have had eight heart attacks, seven stents, a brain tumor, died twice, neuropathy, two strokes, A-fib, diabetes, vision impairment, exposure to Agent Orange, and I was somewhat unstable.
One must never give up after having a TBI/ABI, as there is so much to live for. If you fall, get up and move forward. Live, laugh, love; it won’t be perfect, but it will get better.
As hard as it was for me with my daily struggles, and for my wife also having to do many things for me, I had to stop feeling sorry for myself for the things I could no longer do and focus on what I could do. That’s when I went to my first support group meeting and saw that I wasn’t alone and there were others just like me. I’ve gone to every one and only missed two meetings in the last 17 years.
It was about 14 years ago at one of the meetings there was word that Maine was in the process of starting the BIAA-ME (Brain Injury Association of America – Maine Chapter). I did join because I wanted to find a way of giving back and helping people with ABI/TBI. This is where things started changing for me. I had a purpose! I try to be involved as best that I can by helping out wherever I can.
In the last 9–11 years, I also became the Brain Injury Support Group Leader for the Lewiston area. It has kept me busy, and I like to meet new people and try and help those that are struggling with ABI/TBI. I remember when I had my strokes there wasn’t much help available as to what to expect and where to get answers. So, leading this support group gives me a purpose to help others the best I can. There are a lot of great people I’ve met through BIAA-ME, our support group, and different support groups.
I’ve learned that I can do a lot of things I thought I couldn’t, or others thought I couldn’t do, but if there’s a will, there’s a way. What I’m most proud of, besides being a military veteran, is my ability to do 5Ks. At one of the Brain Injury Resource Fairs my wife and I attended eight years ago, I saw this three-wheeled walking bike for people with balance issues, and I tried it and liked it. My son Scott started a GoFundMe page, and within three days, we had enough to buy the Afari, which was made in Brunswick, Maine, by Mobility Technologies. Unfortunately, they are no longer in business. In the last ten years, I’ve done 19 5Ks with it and one without it. I do these to help support cancer, brain tumors, aneurysms, Alzheimer’s, and the Travis Mills Foundation for Veterans.
I’m proud that I never gave up. I’ve found purpose, and I have accepted challenges that I thought I’d never be able to do again. If you want to do something, get involved. Start out with small steps and work toward a goal. I will be 74 in December, and it’s never too late to set a goal! There is always hope, so never give up. There are groups to help you achieve what you hope to do. There are devices to help you. Don’t be afraid to ask for help. Join a support group if you can. Get involved. Most of all, don’t be afraid to try something new.
I probably wouldn’t be where I am today if it wasn’t for my wife, the support groups, BIAA-ME, Sarah Gaffney (Coordinator for BIAA-ME), the Maine Strong Balance Center, and more.
One of my biggest wins was going to therapy at the Maine Strong Balance Center in South Portland last year. They gave a presentation a couple of years ago at the Brain Injury Conference, and we decided to try them out. This really helped me with my balance. I now no longer need to walk with a cane or walking stick. It changed my life.
I know this was long, so thank you for reading this. Yes, I’m 73 years old, and I’m still going strong because I didn’t give up. I encourage those with any type of brain injury to get involved and not give up. There is always hope. Stay positive, laugh, be happy, love, and believe in God.
Submitted by Larry Marquis
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