Wow, it's been 2.5 years. I have to say, some of the longest, hardest days, and then on the other hand, some of the time just flew by. Highs and lows, as is life.
I had my stroke at 31, which was quite a shock. I'd never had any medical problems worth noting. The first stroke occurred at my home, and then the big one occurred once I was in ICU later that night. I didn't know what was going on when it happened. I remember yelling to the nurse, who had earlier promised my mom she'd take good care of me as my mom left for the night, that I didn't feel right. She yelled (at 3am), "get transport". Then these people in white coats hurried into my room, transferred me to a small bed with wheels, and raced me as fast as they could through the halls, into the elevator, and put my head into a machine. They immediately raced me back upstairs, and started hooking me up to IVs to pump me full of medications to try to clear the clot that was stuck in my brain, killing part of it. I heard the my nurse arguing with her colleague, about whether to call my mom, and I could hear in the nurses voice that she was crying when she said "I don't care about the time". And I heard as she called my mom, and told her a had a substantial and more consequential stroke. It felt like a dream.
They would never tell me if I would get better, or how much I'd get better. The doctors,the nurses, my OTs, my PTs....they all reported the same thing; there's no way to tell. I hated that statement so much that there are no words to express it. My leg showed improvement the fastest. But my right arm and hand lay still....I felt like they belonged to someone else. I had to carry my arm, move it onto the table, move it to my lap. My hand was always balled up in a fist. I was truly lost in this life of mine, wishing that God had taken me at the time of my stroke.
I felt ugly. I felt useless. I'd always been so independent, and now I felt about as able as a 6 year-old. I felt that no man would love me again. But my biggest fear was that I would be unable to have children. I'd divorced my husband a year before this happened because he'd changed his mind on having children. I spent a time being angry at him for breaking his promise. But after 5 mo I started dating on disableddating.com. I met a local stroke survivor who had it much worse than me, and he took care of his kids, toddlers, on weekends. We went to the movies, and talked about life every other weekend. He was from Russia, and he explained that the medicare and OT/PT is so much better in this country. (unfortunately, although he was incredibly nice, he had killer breath, so it never became romantic).
At this time I started reading as much research about stroke outcomes for young survivors. I was looking for some shred of hope. And one day I found it. I read a research study that stated that the best outcomes for survivors to have very mild to no disability 5 years after stroke were for those under 35, and those who had suffered a carotid artery dissection. That was me!!! I hated the five year expectation, but that was my little gold nugget. I looked at that study every week.
I also did every bit of research I could about different interventions. I investigated the success rates of electrical stimulation on the hand and leg, and bought two ESTIM units for 100 bucks each. I took them in to OT and PT and asked if they could instruct me to use them---and in fact they could and did. They gave me three hours of exercises to do with the ESTIM units per day on the couch, which meant I had the chance to watch the Wire, Breaking Bad, Home Movies, Arrested Development, Weeds, Hung, Twin Peaks, Mad Men, Game of Thrones, American Dad, Family Guy, Portlandia....and many more shows I'd never had time to catch up on. The shows were my relief, my escape, into worlds where the problems were complex, or silly, or frightening, and the characters were my temporary friends, or enemies. I can never thank Netflix enough for the streaming revolution.
I learned about the robotic hand device, the Saeboflex, and called around the Baltimore area to find out who was trained to use it, and switched facilities. My new OT Andrea told me to use the ESTIM for my wrist, and once I could move my wrist 15 degrees, I would be eligible for it. This was the social worker in me, asking lots of questions, talking to as many people as possible....but this time my client was myself. Now I was the vulnerable person, and my future depended upon having all the resources possible. And this is to say that you have to do your research, you have to speak up, you have to call around, and BE THE SQUEAKY WHEEL if you want to get better.
I met David from Disabled Dating around this time, and he'd been through intensive therapy for years after a head injury related to a car crash. Dave had many odd ways (some that cannot be mentioned on this blog), but he made me feel normal, because he had been through it all. He encouraged me to do my exercises, and often reminded me that I was beautiful, and he was very accommodating for whatever I needed physically. So we dated for six months. (at which point he stalked me, innocently, but annoyingly, and still does, sometimes, to this day)
I started to realize how blessed I was to have my retired mother taking care of me, and appreciated the time with her, since I missed out on it in my youth. I established an appreciation for the amazing therapy I was getting because I lived in this country. I launched back into the working world a year later, just as my COBRA was running out, and I was eligible for Medicaid through the Employed Individuals with Disabilities program. Again, this was something I found out by getting a case manager through DORS, the Dept of Rehabilitation. The exact month that I ran out of Cobra was July. The EID program became effective in August. and I then had Medicaid. I started to feel like somewhere, somehow, someone was looking out for me. I felt safe, protected.
I began working part-time at a medical adult daycare center, where half of my social work clients had strokes, and a number of other serious illnesses. Many were wheelchair bound, needed oxygen, couldn't speak because of their strokes. People had bigger problems then I could have ever imagined. My clients also demonstrated a passion for life, a sense of grace, and they inspired me to be a better, stronger person. I picked up another part-time job a little after a year, as a therapist, and time started flying by.
And then one day, almost as if it were a Christmas miracle-----I opened up my hand myself. To me it was like pure magic. I still gaze at my hand when I move the individual fingers and feel the miraculousness of the neural pathways traveling all the way down to my fingers.
Eventually, my physical therapist let me go, feeling I was on my way to recovery. I didn't want to leave....I liked our little routine, and I'd come to rely upon her support. But it was time. At this point I asked my PT if I would I ever be normal. She brought me back again, as she had a million times before, to the "new normal." At the time I was somewhat crushed about the answer....because it meant no. But in time, I've come to accept my AFO (for my ankle) as a necessity for my safety, and I rarely begrudge stepping down the stairs slowly, and have made amends with the fact that I won't be a lifelong skier.
What I do get to do is go to the gym....and so I do. At first, i was very scared--- but also excited. Back when I was a teen I went to the gym a lot because my home was a combative place, and so the gym has always been a place of refuge to me. So soon enough "Planet Fitness" became a satisfying and familiar place, with the same grinning faces greeting me at the door, same machines to use (elliptical and bike), and strangely enough, a place of solace for me. Exercising my heart, stretching out my muscles, and strengthening each individual body part--- it's my ritual, paying gratitude to my "house" that my soul resides in, for now. I think about that now and realize that I'm the same me that walked into the gym that first time when I was thirteen. I'm the same soul. I just have a slightly remodeled house.
My OT kept pushing me along. Andrea, my therapist, said that she was astonished at my progress and that I was reaching my goals every month. Life was good. I'd also been doing a lot more occupational tasks at home, because I'd moved in with a new boyfriend and his children. I had all new challenges to face, and I did so. Climbing upstairs, to the basement, learning how to hold a giant laundry basket from up to down, folding the clothing, cooking, caring for the little one, organizing craft activities. Progress was happening, life was happening, and my brain just kept making those new neural pathways, every week. Andrea remained upbeat, and celebrated every success with me. We had a great time together. But she was finally ready to let me go, and I was ready to go. She told me she'd been the field for a long time, and that I was her success story.
When I'd met very first met Andrea my spirit was completed trampled upon by my neurologist. The ignorant idiot had told me that because my hand wasn't moving at six months post-stroke that I would never have movement again. I gave up a lot of hope. It was the darkest time in my life. Andrea pumped me back up with hope. She said that his prognosis was simply not true. I remember that low, and me and Andrea worked and worked, and things just kept getting better and better. And every victory was OURS.
I'm now working five days a week, going to the gym, and back with my mom. And I'm happy. I'm also newly and accidentally pregnant, so I'm hoping for a healthy baby in 7-8 months. I traveled on a plane to see my dad for the first time since the stroke. It took that long for me to feel comfortable. My stroke is now part of me, and part of my identity. I've accepted my disability, and I'm at peace with it. When I was "struck" I was reduced and humbled beyond comprehension. I needed every person along this journey that served as a helper, a smiling face, a listener, a cheerleader, a shoulder to cry on, a jester, a caretaker, and I thank them in my heart. There is a time to give, and a time to receive.
It's been a great long, winding, wacky road, but I've always heard that you get the best views on the road less traveled.