I haven't been around here for a very, very long time. Life with children (13 years and 4years old as of today), family and all the rest is a busy thing.
I just got a pm from someone 9 months post-SAH, looking for info about my experience. I responded, then I remembered how incredibly helpful and useful BTG was for me in my first weeks post-SAH. The doctors told me I was fine. I knew I wasn't "fine". But it took me a while to realized that what they meant was there was nothing they could do for me.
Thank goodness I finally found BTG and all the helpful folks here. So, I figure by posting this I might be one of the helpful folks for someone else coming along post-SAH, confused and looking for answers, direction, clarity, or at least a little flashlight in the darkness. So, here's my story:
I'm now 2 years and 3 months post-SAH. The best way I can describe it is in computer terms, which makes sense if you think of the brain as a Central Processing Unit (which it is, just a biological one as well as an electronic one). Looking back my experience was something like this...
My brain crashed and needed to restart. Many programs remained "off-line" for several months. Through reading Jill Bolte Taylor's book (have you read it? you should) "My Stroke of Insight" I suspect my bleed was in the right hemisphere of my brain (since there was no aneurysm the doctors couldn't tell me where I bled, only that I had bled as by the time they got a look my basal cisterns were flooded).
I think this because my linear reasoning was never affected nor diminished (however my ability to make connections was severely disabled). My speech, pronunciation, vocabulary, motor skills were all normal (though I was incredibly tired). The doctors told me I was fine and should slowly get back to my normal life. Maybe take a couple of weeks off.
Months later I was telling the doctors I wasn't fine. There were things missing. I am an artist and dancer and when I went into my studio it was like I entered into a fog of pea soup. It was thick, confusing and exhausting. In retrospect, part of that may have been due to non-essential services being off line while the organism of my brain healed itself.
Over the course of the first 6 months I had several waves of "programs" coming back "on-line" and being available to me again. For Christmas I got the ability to dance and to be social back again. It was such a beautiful present. That was the last significant "wave" of restore.
A few things trickled back after that, but nothing as noticeable as the previous waves (a wave was like all of a sudden I could "think" my way through things I hadn't been able to make any sense of the day before).
In the first few months, before my artist's brain came back on-line, I was searching for some sort of stroke rehab to help with my right hemisphere recovery. However, most/all stroke recovery programs are based on restoring left-brain function - language, linear reasoning, physical acuity. Our society doesn't value the more artistic pursuits - making connections, spirituality, creativity, and so much more that is of deep value to me, as an artist and a human being.
That was a difficult time for me as much of what I value about myself was taken from me. I was sad, but I also believe in brain plasticity so I just had to keep reminding myself of that and give myself pep talks several (or more) times a day when I got frustrated about not being able to do something I "should" or used to do, or wanted to do.
After the initial 6 months of recovery waves, there was another 6 months of very inconsistent energy. I would get tired suddenly and there was no rhythm to map out or predict what would exhaust me. Just all of a sudden I was exhausted. At the time I had a 2-3 year old. This was extremely challenging for me and my family. I just kept checking out on them. I spent a lot of time lying alone in the dark, or in my studio lining up my pencils and/or paints in order by colour (I felt it was important to log studio time, even if I wasn't producing anything...I just needed to spend time there), or whatever quiet and restful time I could spend.
I was working 2 days a week by that point and I was able to manage that, though it was a deep energy sucker. By the time I was at 9 months, my cycle became work on Monday, take Tuesday off from everything, work on Wednesday, take Thursday off from everything, kids home on Friday - be the Mom till hubby home from work, go to bed exhausted after dinner, Saturday and Sunday Mom when I could, retreat when I couldn't. That was my life schedule...but my energy usually didn't conform to that.
Shortly after the 1 year mark my energy got consistent. It was such a gift. One never knows if that is going to happen or not. We really don't know what cards are going ot be dealt to us. I got lucky. I know it in my bones and deep in my brain and I am grateful for that every single day that I wake up.
While my energy got consistent, it didn't return to what it was pre-SAH until the 2nd year. There are a few intangible things that came back during that 2nd year, but I would be hard pressed to say what exactly. It's just a feeling of "being a little more here".
I used to do 7 things at once. It was truly insane, but I could manage. My top speed now is doing 3 things at once, but that leads to an emotional meltdown pretty quickly. I think my sense of self preservation is much stronger now than it was pre-SAH. I feel less guilty about saying no to others.
I still have a difficult time saying no to things I want to do. I still struggle with accepting my own limitations and not overdoing things. I am (once again) a passionate engaged artist. I love life. I know life is short and I want to express/experience everything I can in the short time I get.
However, I do want that time to be sustainable, so I often must say no to things I'd really like to do. I don't have the energy I used to have. I have wiser energy. (I'm 44 now, was 42 when I had my SAH). Having said that, I still have more energy than a lot of people I know...I'm a high energy person, however I don't have the ability to "run" as much energy as I used to.
Long term effects - I would say that the SAH aged my brain. I seem to be at a similar capacity to my friends who are 15 years older than I. I have to write everything down (and later look at my notes) to remember anything. I forget conversations. Most of the time I remember them when someone twigs me, but some conversations I honestly have no recollection of. This is a bit disturbing, but then I think of my older friends, shrug my emotional shoulders and remember that memory loss due to age beats the alternative (being dead). And, then I do something to exercise my brain and keep the muscle working in new ways. Maybe my memory will improve with age! Maybe not, it's irrelevant and doesn't much affect my quality of life...unless I let it, which I don't.
That took some time for those around me to get used to. My family especially. Now if my 13 year old is frustrated with me forgetting something I turn to her and say, "I'm sorry, have we met? I'm the mom who is awesome and has recovered from a brain hemorrhage. Have I mentioned that I have no memory?" She doesn't like it much, but I guess in a way it's a lesson for her in learning how to be take care of what she needs to take care of. My 4 year old doesn't have the same expectations of me. She doesn't remember me pre-SAH. Hubby, got with the new program a while back.
I still deal with sudden rushes of temper if I am pushed too far and feel the need to protect myself. However, I am the Mama who has a 13 year old and a 4 year old at home, so I am often pushed too far...seems pretty common (SAH or no SAH). I do my best to verbally warn when folks are pushing too hard, but sometimes it takes a meltdown to get their attention. I don't feel guilty about these anymore. I leave, and apologize when I return. And remind them that my brain is very sensitive.
What I remember were the most helpful things that first 2 years were
- Behind the Gray (life saver especially when the doctors were telling me I was fine, but obviously just having emotional problems so I got referred to a psychiatrist. That was the single most frustrating thing I can point back at); I was so relieved to have found BTG, it was a life saver in so many ways
- DRINK 3 LITRES OF WATER EVERY DAY! I learned that here and it made all the difference with the headaches (I took acetaminophen daily for the first 3 months, then didn't need it anymore as long as I was drinking enough water) that tip came from here at BTG
- Be selfish. Do what I need to do for self preservation, including a whole lot of walking away
- Being patient. Being kind to myself. Stopping when I found myself getting into any kind of negative self talk. That negative self talk was one indicator that I was pushing myself too far.
Which reminds me of the nausea. That was my early warning indicator. I dealt with waves of nausea for over a year and a half (tho they decreased in frequency as my energy increased). When I felt like puking I knew that I had just crossed the line and had pushed too far. I learned that slowing down was not enough in that situation. If it got to nausea then I had to STOP. drink water. go lie down. rest. try again another day.
I have changed though this experience. I hope for the better. I believe that I am more compassionate. I don't take things for granted. I know in my bones how temporary this life thing is and how quickly it can all end. I am lucky that hasn't happened to me yet. I want to honour my own new pace as I live the rest of my life....however long that is to be.
I hope this helps.
Please feel free to write back if you have any specific questions, want to share your story or just want to connect with someone who's gone down her own version of this path, before you. And, don't feel obliged to return any long letter to me. You must be selfish in how you spend your valuable and rare energy.
I wish you the best in your recovery. Please remember that whatever abilities you may or may not get back, you have your life. It is changed. There is no going back, there is only going forward...into mystery and hopefully into health.
You will not determine what that will look like. There is a certain amount of surrender and fear involved with that. That part is out of your control.
All you can control is how you meet these challenges. Be kind to yourself. This is a big thing.
All the best,