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| Robin Rocky Mountain Stroke Survivor |
My perfect day: Having slept in as late as I wanted, I woke up in my beautiful and peaceful bedroom to the feel of a light breeze coming through the open window. I close the window and curtain before the heat of the day and pad into the kitchen where my husband has breakfast waiting for me. Everyone smiles at me and I at them as I walk into the room. The kids are already diapered/pottied and dressed for the day. They are each settled into an age appropriate, interesting, and educational activity. My husband is wiping down the completely clear table after their breakfast (did I mention they were already fed too?) and as soon as I finish my breakfast, my dish is whisked into the dishwasher in order to not dirty the freshly scrubbed sink. Supper is already in the crock pot and my husband announces that he has a picnic lunch already packed so the kids and I can go on a little jaunt while he finishes up a project in the back yard. I put on the clothes that were laid out for me and away we go. When we get home an hour or so later, my husband has gotten an amazing amount of work done around the house and yard; he takes over the kids while I take a 2-3 hour nap. I wake up refreshed. We spend a little time together as a family before supper and everyone stows themselves neatly in bed nice and early.
My real day: Our daughter, age 1, has a fever and wakes me up with her piteous cries at 4am. I kick my husband until he wakes up enough to understand that I need him to fetch the infant ibuprofen from the bathroom. By the time he comes back, I’ve fallen asleep in an uncomfortable position holding my daughter. As soon as he wakes me up and hands me the syringe of medicine, he’s konked out (in an uncomfortable position). I dose the baby and spend the rest of the night in that weird sort-of sleep that only parents of sick kids and political prisoners understand…you’re exhausted so you fall asleep instantly but the instant you fall asleep, you are awoken by kicks and screams.
At 7am I realize the 4 year old has joined us and is awake and the day has begun. I kick my husband until he wakes up and he asks me if I need help. I respond that I’m not sure but my right arm is really strokey from the lack of sleep and I have two kids on me. He untangles us and we all go upstairs. We can’t keep up with dishes so everything we need for breakfast is dirty. Hubby starts on that problem while I manage diaper/potty time. This involves lots of balance, coordination, and quick saves. I’m tired from our long night so my hand misses a lot and I end up having to pick up and clean up several spills of my own creation.
I maneuver carefully around various toys and laundry scattered on the floor (my physical therapist couldn’t have thought of a more difficult obstacle course). The kids and I settle into activities in the living room. I alternate between a wooden marble maze with my son and dolls with my daughter. Stacking blocks, rolling marbles, tying bows, getting a tiny doll bottle lined up with a tiny dolly mouth. It’s difficult work but the kids see no reason why mom can’t do it.
After breakfast, my daughter “helps” her daddy with the housework while I spend an hour doing school with my son. We sort coins (good practice picking up small objects), practice letters with a pointer finger in a pan of cornmeal (equally educational/therapeutic for both of us, just in different ways), watch a video about the pre-historic land bridge between Asia and Alaska and then find it and many other features on the globe (lots of coordinated pointing). Daddy and Sis join us for rhythm band (which is very similar to music therapy).
If I have the day off, we might stay home. I can’t manage the kids for more than an hour without a break so we’ve worked out a dance of sorts…I do stuff with them for an hour and then collapse in a chair, bed, or sofa while my husband plays interference for awhile. Then I take them back while he gets something done. My son can entertain himself pretty well for spurts, but my daughter is a very active toddler who requires constant close supervision. Sometimes if she’s being especially independent and easy, I’ll hang laundry while she plays nearby. One load of cloth diapers and wipes takes approximately 80 clothespins. The first time I tried to hang a load, I couldn’t get a single clothespin attached to the clothesline. But I just kept working at it until I can now hang an entire load…which is fabulous OT!
If we’re having a bad day, we might decide to bail. (I would never try this on a “strokey” day though…we might not make it home!) I pack us a picnic (which involves laboriously slicing cheese, screwing lids on gladware, and the like) and we might go to a free museum (such as Littleton Historical Museum…love the place!) or to the Nature and Science Museum (my sis gave us a family membership so we can take many short trips instead of having to get our money’s worth with a long visit). These trips involve everything from managing to unfold and fold a stroller to working gates and knobs to pushing elevator buttons. Only someone who has had a stroke or similar disability realize how tricky all these skills were to learn. But it’s worth it to walk quietly pushing a stroller while the kids enjoy themselves.
On days I work, I pack up and go to work after lunch. I can manage several hours since my job mostly involves sitting and looking sympathetic and thinking about a person’s situation and what needs to be done. If I have to commute anywhere (say for a meeting or house call), I can manage about an hour of work. I spend about a sixth of my time doing various physical tasks or technical procedures that I’ve had to carefully relearn to perform in a coordinated fashion.
Several days a week I also have “real” PT, pool therapy, art therapy, and ballet (which I am taking to work on my balance, coordination, and ability to lift my arm over my head and across midline). Our car is on hospice so I bus everywhere possible to save the remaining miles for places I can’t reach by bus…an exhausting and “therapeutic” proposition: I walk two and a half blocks to the bus stop (which involves an uneven sidewalk and multiple curbs and ramps…I’ve had several spectacular falls on a particularly irregular section of sidewalk), climb the steep steps of the bus, feed my money or ticket in to the little machine, walk on a slightly swaying surface to a seat, and sit without falling while the bus lurches and bumps along the road.
At meals, I have to serve and feed myself, cut my own meat, and manage complicated foods like spaghetti or soup (the kids don’t want to give up their favorite foods just because it’s difficult for me). With two young children, my husband has his hands too busy to help me unless I’m really strokey, in which case I have to wait my turn. Hunger won out soon after I came home from the hospital and I’ve learned to feed myself everything. Sometimes I give up on utensils and resort to fingers, but my table companions often do the same and don’t mind.
Bedtime is another set of skills. Try brushing someone else’s teeth, even if you haven’t had a stroke! My son won’t let me help him anymore: “You always put it down my throat, Mama!” Washing my daughter’s hair, doing up the million snaps on a pair of jammies, or applying ointment to my son’s rash are all tricky to coordinate. Reading the bedtime stories involves visual tracking and page turning, both of which are difficult in different ways. Immediately after the stroke, I’d get terribly dizzy from moving my eyes along a page. With time and practice, I can now read whole chapters of Farmer Boy to my son.
If my husband and I want a chance to talk without interruption, watch a TED Talk (our hot date of choice), or do anything without the kids, it has to happen after they are asleep. I am always torn between sleep and time with my hubby. If I’ve had a good nap or two during the day, I tend to stay up later than I can manage and I end the day nauseous and dizzy from exhaustion. If I didn’t get a nap or am otherwise worn out, I may not stay awake as long as the kids.
Sometimes I think about how nice it would be if the strokes happened when the kids were grown…when I was 51 instead of 31. Our house will be paid off by then, and the kids away at college or beyond. I could have just quit working and even if we had nothing saved for retirement, my husband wouldn’t have to take care of the kids and me so could get a job to support the two of us. (Right now, it makes more financial sense for him to take care of us and me to work a few hours here and there…I can make a lot more per hour than him and we don’t have to pay for daycare.) During the day, I would be puttering around the house, sleeping a lot, and focusing on my recovery.
Which is where I have to stop and admit that this is really a lot better for my recovery. I came home from the hospital unable to wash my hair, walk up and down more than a couple steps (and none at all in the dark or if I was tired), cut my own meat, or stack two blocks on top of each other. I couldn’t reach my right hand across mid line or anywhere out of sight. I fell walking across a clear floor and poked myself in the eye trying to scratch my face. I had a slow, lumbering, lurching gait and had trouble picking up my feet.
If it weren’t for the kids, I wouldn’t have pushed myself like I have. Every moment of every day is rehab for me. Every time I discover I can’t do something, I force myself to keep trying over and over until I can. I’m still struggling with birthday candles but, by golly, my kids have a lot of birthdays ahead of them, so we put birthday candles on everything for days surrounding their birthdays. People often offer to help me (a close friend watched anxiously when I did the candles on all 30 cupcakes for my son’s birthday party a couple months ago…he wanted every kid to get to blow out a candle) but I make it a policy to refuse help unless absolutely necessary. How else am I going to figure this out?
Without the kids, I would have been content to be able to read, type, knit, maybe do some basic housework and baking. With the kids, I need to be able to do everything. I have to be able to walk on uneven grass at the park, learn to ride a horse, go swimming in the summer, snowshoe in the winter, build models or sew dolls or do whatever crazy stuff their childhoods have in store for me. I learned to walk in the park on Saturday, the other skills I just listed are still ahead of me. So as much as I wish I could sit back and let my husband cut my meat for me, I’m really grateful that I didn’t have the option. I still need a certain amount of care, and some days I definitely need more than I’m getting, but overall I think this is best for me. And besides, I’m awfully fond of those kids!
What has been your greatest motivation in your recovery? In what ways is your life your rehab?
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